I take care of my wife when she needs help and by history, I've had to become very observant to any changes I see.
Mom went to the freezer for something that might have been in the refrigerator or on the counter. My internal lights went off and I watched carefully as she kinda stared into the freezer, possibly realizing she didn't really want to be there, then get visibly upset at Dad, as if it were his fault. Married people will recognize this.
Most of us Grown Kids saw it.
Mrs. lefty spends a bunch of time at Mom and Dad's and kept warning people about Mom losing it a little at a time. Mrs. lefty insisted there be some sort of evaluation. This was extremely difficult, as the patient didn't want to hear about it and her husband, the Good Husband, was very interested in self-preservation and would not suggest she do something she didn't want to do.
Mom's condition started to become a bit more visible over time. She had 'difficulty with the keys' to get into their place, getting very mad at them when they 'failed to work right'. Mom made our favorite cake in the world, a chocolate dense chocolate cake with chocolate buttercream icing with a hint of coffee. Bits of the top and bottom layer were somehow not there and in their place was more icing. While this wasn't exactly a problem for me (I eat fresh icing from a container with a spoon), this was pretty weird for a very precise kitchen operator.
As things like this became more frequent, Mrs. lefty got louder and more insistent about medical evaluation. Mom's father developed Alzheimer's and passed earlier that he needed to. We asked if it was hereditary and got a number of answers: yes, no, could be, partially, early-onset only, and horses (we don't know why). Mom became less able to cook some of her famous dishes for holidays. She also spent a lot of time being pissed off and holding grudges, but compartmentalizing knowledge so only one family member knew she was mad at the other family member. Her mother used to do this but was perfectly healthy. Mom said if she ever got like her mother, shoot her. The time had come but nobody really thought it was a good idea to take her up on her wish. We also decided not to actually tell her she had gotten like her mother... that could be a little upsetting. We miss her parents terribly.
=============================
Things got more and more weird. Then some sort of accident. Then things got really weird. It was as if the accident woke up a host of other, unwelcome issues. Mom was tired and couldn't keep up with her usual pace. Then Mom had a little trouble in her own kitchen.
We weren't exactly getting much help from the alleged professionals. Firstly, they couldn't talk to us without permission from the patient. When we obtained permission, they simply didn't bother. None of the physicians seemed to be getting anywhere. We did get some suggestions for docs she might want to see, so off we went. Ninety days, sixty days, thirty days or longer she'd have to wait for an appointment. It's not like the diagnosis was a mystery to anybody - we just wanted official word and more importantly, something in the way of treatment. I'm told that if you hit the problem early, quality of life can be extended greatly. A neighbor got six years of life to live at home and be with his wife before it became impossible. This was the guy who 'forgot' he didn't like dogs his entire life and enjoyed the hell out of Marshall.
It hasn't been very long but there have been so many incidents that I can't recall when it hit. It started with the paranoia (somebody's stealing my stuff). We kept whatever it was, so she felt safe about it. Then the delusions (your father is a monster-there's two of him and the bad one steals my stuff). Then the hatred (I hate him and he has to leave-he made my life miserable). Around this point the phone calls started. Dad didn't know what to do, please help. Mom's confused, please help. It seemed to come and go in spells, with very little consistency, other than happening in the evening or later. We again started agitating for professional help, to no avail.
Dad took Family Leave from work because although she hated him sometimes, she really needed him to be there full time. Dad, being a nice guy, obliged. This, in turn, caused all sorts of secondary complications; among them, finances.
And then things really started getting 'fun.' Her spells became uglier. They became more frequent. Once it looked to be on the brink of getting physical (but didn't, thankfully). Then the phone calls started... they went round robin... could someone please come over and talk to her? We became proficient at talking her down, calming, and making things settled enough to go on 'as normal.' The pace of the phone calls quickened as the spells quickened.
The family started getting together to talk finances, doctors, and HELP! Yes, it should have been addressed a while ago, but we weren't in the driver's seat. Unfortunately we'd pretty much have to commandeer the driver's seat. The parents agreed, thankfully, and we got things into motion, finding correct doctors and locating important info.
Meanwhile Mom would call, upset that someone stole this or that kitchen implement or paperwork or rearranged her kitchen.
One particularly nasty episode was resolved by testing for a Urinary Tract Infection. Yes, in older folks, a UTI can cause all sorts of symptoms that look like dementia. Unfortunately we had to insist on the test because the idiot doctor didn't think of it.
When Mom went off, Dad had the unfortunate job of not pushing her further and making sure she didn't go for a little walk outside. Plus one of them called us, asking for help. After only about two weeks of this, everyone was tired and stressed, almost to the breaking point. The neurologist appointment was a few short days away... we hoped and worked for relative calm until then. And you know what happens when one looks for relative calm? Of course you do - all hell breaks loose.
On the day before the neuro appointment, there were two of us in the place, trying to talk Mom down. She was seeing stuff and as mad as one person could possibly be at their spouse, who wasn't doing anything other than breathing. The usual magic wasn't having much effect, so a little extra magic put her in the car on the way to the hospital, completely with her permission and under her own power. Dad had to follow in another car, lest she hiss and spit and refuse to go. We figured that she'd be safe there and this would get the medical ball rolling. After all, it worked for my poor in-law, who couldn't get into the system despite aggressive stage four cancer.
In the psych world, if you're a danger to yourself or others, you can be held and you will hopefully get started on the treatment you need. Under this theory, we went to the Emergency Room. Once there, the staff pounced upon Mom with all speed and efficiency. Within a very short time, they pronounced her perfectly fit and ready for discharge. This was not working exactly like the psych world after all. I asked the E/R doctor about getting her diagnosed. He recommended keeping the neurologist appointment she had the following day. When asked if they could keep her for a diagnosis, he said only on the psych ward, which would terrify her and wouldn't do much more than warehouse her over the weekend. There were no geriatric facilities in the hospital that could assist her.
Mom got discharged, we got defeated, and she went home. Within hours, she was far out again. They made it to the neurologist the following day, but only with help, as she was still really pissed at Dad. The doctor recommended another specialist and was essentially no help at all. Meanwhile, Mom (and the entire family) rode the roller coaster. You've heard of the tail wagging the dog? This was a perfect example - the entire family got involved one way or the other when Mom went off, which she did more frequently than before.
The 2am call was the breaking point. I won't bother you with gory details but I got a call from Mom, who had 'escaped' into the freezing cold and wanted me to pick her up NOW. A quick call to a bewildered Dad alerted him to a missing wife. He went after her but since he was the Bad Guy, she wouldn't get near him. Unfortunately the police had to assist. When Dad called, I suggested they take her to the hospital, again, and perhaps this time she'd get some help.
At the hospital, the strangest thing happened. As if by magic, the hospital that did not have geriatric facilities sprouted an entire floor dedicated to geriatrics. Was it an engineering and building miracle before Christmas? Nah, it was the same ($&#ing floor that was always there.
Over the next few days, all sorts of doctors, nurses, aides and family came in and out of that hospital room. Neurologists and psychiatrists saw her and put her on meds to calm the hallucinations, help her sleep, give her an appetite and one more pill used with dementia.
While home one quiet day, Dad called to let us know they were discharging Mom that day. While this was great news, we we're concerned. I told him to get the doctor's home phone number, so in case there was any trouble, we can call her at 2am and she can deal with it. Dad missed the sarcasm and would ask her for her card with her home phone number. This should be interesting. The smart people in the family spoke to the staff and got good information and referrals for the next step.
Yes, the official diagnosis is dementia, fast track. No one was surprised.
For the next few days, the roller coaster continued, agitating Mom beyond belief and wagging the family along with her. While no meds will cure someone with dementia, the symptoms can be managed and that was our sincere hope. Very very slowly, the serious paranoia slipped away, leaving just minor paranoia. Yes, people were still 'rearranging' her stuff but it wasn't Dad's fault this time. Believe it or not, this was a small but Huge improvement. The hissing and spitting continued at a less frantic pace.
Here's a bit of useful irony: when Mom went really far out there, my wife could talk her back in. It was sheer artistry. My wife had been there before, getting paranoid, trying to cover it up, dealing with meds, forgetting, and seeing things (only the diagnosis was different). Because of this, Mom really trusted her. Or, as my wife liked to refer to it, The Crazy Leading the Demented.
Meanwhile the rest of the family kept in close touch so nothing went unnoticed by anybody. Someone went to a state representative, whose staff members were incredibly helpful and did all they could to help us get Mom into the system for some sort of placement/program and aid. There's an adult day program that's seventy five dollars per day and no insurance at all covers it. While this is everyone's high priority, we don't have that kind of additional income, on top of other obligations we're managing. Naturally we were many documents short of what was necessary to get the forms complete. Not being doctors or even having a single clue, we had no idea what Mom needed, be it a day program or something way uglier.
Getting the information proved to be a more difficult task than expected.
DAD
I type this part to help explain a required shift in life, not to judge or cast aspersions.
Dad, a healer and a helper, took care of Mom from day one. A smart man, he let her lead in most places and just took orders (happy wife, happy life). Mom provided Dad with structure and orders. The marriage continued, long and happy. Unfortunately their history did nothing to prepare Dad for dementia. He suddenly had to drive the bus, as opposed to being a passenger. This was not his strong suit, unfortunately for him (and us). Mom did all the paperwork, kept everything clean and everyone fed. As it became Dad's turn, things weren't working out so well. His sense of organization is a little off, to be extremely polite. Finding forms or information is near impossible when you never had to, when you have trouble organizing, and when you don't know where to look or call or email. The family came in handy at this point.
The absolute crushing events of the past weeks (!) were enough to sideline a small army, but not Dad. Being kinda old school, he would stand by her and take care of her to his last breath, never once thinking about himself. This is a very romantic ideal and absolutely unsustainable, not to mention wildly incorrect. If you don't take care of yourself, there won't be anything left of you to take care of your loved one(s). I recognized it immediately from my own problems when we discovered my wife's diagnoses. I searched like a madman and went online to find a support group, which I joined and fought tooth and nail against. Some people require being hit in the head a lot before everything clicks into place. It took me way too long but at least I'm in a place to offer some of it to others. When it was suggested to Dad to make use of my experience, he scoffed, stated that he was 25 years older and there was no way anyone could understand what he was going through. Uh-oh... I recognize that....
The extent of the confusion made itself known one night when we brought pizza for dinner. Old Mom would have been all over this, with a nice table set in advance, cold drinks and ice ready. Instead, Mom sat there and let Dad lead. Dad had half the table full of financial information. In my entire life, I have never seen Mom's table with Stuff on it, no less at mealtime. It was unprecedented and went uncommented. Stupid, yes, but you get the idea.
So Dad would not hear of self-help and wasn't having much success at paperwork. Between the two of them, many papers went missing, as if they really did have someone there stealing things. We would ask for specific information and he would just shake his head and ask that we look for it. As we all have families, kids, jobs, and many additional responsibilities and personalities, it's not easy to simply get information. We had to insist that he help, at least with the easy stuff. He kept claiming he had no idea and we could take care of it. This was causing even more grief and resentment, as we were doing all we could to help.
Meanwhile, in several family homes, the fallout was swift and ugly. Everybody in the situation was overwhelmed at very least. Tired and on-edge were an unwelcome addition. When this sort of stress enters the situation, it affects everyone differently. It seemed to make the wives very unhappy. And when some wives are very unhappy, it tends to spread to those closest to them. This is a very polite and tactful way of saying that there was a lot of pressure and a lot of screaming and a lot of blaming, making peaceful relations extremely difficult.
Stress is a horrible little animal, burrowing into the body and mind, then trying desperately to escape. If you won't let it escape, it will find its own way. This can include anything from foot tapping to teeth grinding to headaches, body aches, depression, and odd pains. One of us went to the hospital with chest pains. No cause was ever determined - all tests were negative. If one is already clinically depressed, things can get worse. You do not want this. If there are other psych issues, things can snowball. You do not want this either. Some people thrive in an emergency, postponing the fallout til later. Some don't even recognize there's fallout until it falls out over their immediate family. This issue does not only affect the person with dementia and their primary caretaker... it rolls downhill.
It's the third time in the Emergency Room. It's not like we enjoy the trip or the wonderful hospitality, it's more about someone wandering the street, desperate to escape from The Enemy (the husband). The nice policeman didn't know what to do, so we suggested the hospital.
Mom called late at night, to tell us that everything was ok. This was a sure sign that everything was not ok. She mentioned burning when urinating. Then something about burning beverages but everything was ok. The next morning, good and early, Dad called. He didn't want to bother us, but Mom wasn't responding. VOOM, off went the wife, who spent twenty minutes professionally trying to get something like movement. She was breathing but not responsive to speaking (or screaming). Wife assured Dad that this was indeed a good time to call 911 and tell them she's not responsive to verbal cues. Dad didn't remember the exact phrase and told them she wasn't responsive. In Ambulance Speak, non-responsive means no heartbeat. The air filled with sirens as three squads showed up.
This time she struck gold and got admitted.
That burning? It was another urinary tract infection (UTI), which, as we remember, can drive an older person completely crazy. Several days and several antibiotics later, the UTI was cured and Mom was... ummm... not crazy or paranoid. Mom was, however, feeble, couldn't finish sentences, and spoke in stream of consciousness so it was very difficult to follow her. She was using the wrong utensils to cut and eat her food. It was horrifying for the visitors. It was horrifying for her, in the clear moments when she was realizing what was happening.
Since nothing further needed to be done physically, they said she could go home or to a geriatric psych floor. We all chose the latter, as she still thought Dad was the enemy. After being told we would all get together and choose the best facility, the hospital moved her to its own facility and we got an hour's notice. And this was a mixed psych ward, meaning adults and geriatric.
The stay was moderately long, especially compared to a normal psych stay. Something you notice, regardless of reason for being there, is that the patient starts plotting to get OUT. This is independent of their actual suitability for discharge. Mom gave us all sorts of ways we could help spring her. We chose to save these ideas for the time being.
She had some really good days and some really bad days, mostly the latter. She was paranoid most of the time, which was an expansion from before the admission, when it was mostly nights (this is called sundowning). They were trying to get her meds to a therapeutic dosage and see if they helped. Meanwhile we watched her mix up her utensils and not see straws in her drinks. Words at the end of sentences got dropped and the topics wandered, sometimes in the middle of sentences. Dad still wasn't allowed to visit.
When we finally got in touch with someone at the hospital, they told us they weren't going to release her for a while and discussed her meds. Two days later, they were talking about releasing her in another few days. There was a meeting with us, Dad and Mom. Mom stiffened when Dad got near her but pretended she was ok because she wanted OUT. This also happens a lot in psych hospitals, regardless of diagnosis. Present a good face to the staff and you can get OUT faster. We kept in touch with her nurses to give them additional perspective.
The doc gave us all the information we asked for and was very open and communicative, as was the social worker, who was covering for Mom's social worker, who was off this week (with no communication whatsoever). Are you seeing a trend here? The long and short of it was that they were going to make sure one of the meds was at a correct value and let her loose.
I was not happy. I was really not happy. I was incredibly not happy. This woman came to the emergency room in full paranoia and underweight, with a UTI. Two weeks later she was to be discharged without a UTI or being underweight, with slightly less paranoia, but spending more time with her. It bothered me that the psych portion of this stay did not seem to amount to much, therapeutically.
The staff gave us a few options for day programs, in-home care, and nursing homes with dementia wards. Some support options for Dad. Cutting to the chase, unless you have Big Bucks, you are absolutely screwed. Insurance probably won't cover in-home care. Any facility that isn't a total dump is private-pay. Day programs are not covered, except possibly with county assistance. And none of this is going to help if she goes home and loses it in the evening.
When I commented that they're putting a paranoid person right back in the gasoline pool with matches, they said she's not bad enough to keep in the hospital or place long-term. And there's no middle. What do we do next time she leaves reality? The only answer they had was to take her back to the E/R. That was IT.
I don't know about dementia or statistics but it's a good bet that there have been millions upon millions of old people who have suffered from dementia over years and years. Wouldn't it make sense that there would be some sort of serious plan for dealing with this, plus some new medicine, plus loads of research into the process? Apparently too much sense... Yes, there are some drugs.
In the end, any patient is not going to get much better. Perhaps stabilized. Then it's a waiting game.
*************************************
More meetings with hospital staff, where they finally assured us she would be kept while the meds were being adjusted. The doc told us she would increase Medicine S. One day later, Medicine S was discontinued.
KEEP IN TOUCH with the social worker, at very least.
*************************************
Weird medical stuff started happening. Once there was chest pain. Once she wouldn't get up. We were told it was vaguely normal.
On some days she was with us, but paranoid. Some days not with us, but paranoid. There was a single hour of visitation, two on weekends. We took turns, as only two were allowed at a time. This is Standard Operating Procedure for a psych ward.
*************************************
Dad started to realize that things were really difficult and talked a bit. He started going to a support group. Oddly enough, he was the only man.
Have you ever heard your rock-solid, even-tempered dad tell you he was having trouble? I hadn't. It still rattles me.
Things were rapidly coming apart for him. Imagine being married for almost forty years and effectively losing most of your spouse and all of her presence...
We made certain to include him in dinners and outings, while he attempted to keep himself busy planning his unfortunately-forced new life.
*************************************
The family spent quite a bit of time and effort gathering paperwork because the patient who was too 'with it' to be institutionalized would need to be institutionalized. Yes, she could come home, provided someone could get her 24/7 care. She could walk but would need help with a lot of other things.
Fortunately, with the small bit of sense we had, we dismissed that option. If there was anybody in denial, they weren't after that meeting. The social worker let us know about the process for getting a patient to a facility and said she would provide us with a number of choices in a ten mile radius. We expressed preferences, based upon experience of other family members.
*************************************
Visits were daily, with mixed results. The paranoia was going away, for which everyone was thankful. She asked for everyone, especially Marshall the Smart Cocker, but you had to be directly in her line of vision for her to see you. The doctors say this rapid decline isn't uncommon and she's pretty advanced.
The other day she was beside herself because she figured out where she was and what it was doing to Dad. He was solid in his support. Mom told Dad she wanted out, and she meant permanently. I sat there stupified because no one tells you what to expect or what to do.
Mom was also fixated on a paper. She kept telling us she needed a paper and got very frustrated when we didn't understand what it was. It has been going on for a week or so.
*************************************
Mom's young grandchildren visited when she was on a regular floor but not on the psych ward. I hope they'll come when she moves.
*************************************
We visited yesterday, then had appointments to check out three facilities.
Only one of us had any idea what to look for so the rest of us shut up (a rarity).
People, if you get nothing else from this, I strongly urge you to be thankful for what you have.
Mom used to tell me to emphasize the positive, so here goes: only one place smelled of urine in one hall.
The first thing I noticed was people in wheelchairs, sitting outside their rooms. A solid line of them. Some had vacant eyes. Some smiled. Some said hello. The line of residents shook me. We ponder life and our purpose... but I was looking toward its end and it was upsetting, to be polite.
Some people say to shoot them if they ever get like that. I had never seriously considered the phrase until that moment.
The facilities were fairly similar in their offerings:
- 24/7/365 visiting
- dogs with current vaccinations are allowed
- small rooms with between one and four roommates
- what appeared to be caring staff, with some long-term employees
- assessment and assistance for whatever the person needs-help with any activities of daily living.
- physical rehab/exercise
- staff or visiting doctors and even beauticians
- daily activities, planned for the month, movies
- variety in food but bland institutional food in some cases
The differences amounted to noise level, amount of activities, width of hallways, age of facility, and other things I can't remember. We decided on our favorites, or rather, the least distasteful.
Then we went home and collapsed.
This horrible disease has left no one unaffected.
*************************************
Nobody wants to institutionalize anybody, or at least we don't. My parents took care of a grandmother for many years, until they couldn't any longer. We would do anything we could to keep Mom with us but there is simply no way we can meet her needs.
The price tag for this can be handled in cash or Medicaid. When I say cash, I mean about ten thousand dollars per month and up. The facility will accept the person, then help them apply for Medicaid, if that is the case. All sorts of things are examined, like income, spouse income, property, savings, retirement income, five years of bank statements and income verification, and nothing transferred to relatives or anyone else recently.
*************************************
*************************************
I'm told we need to make plans for Mom's funeral. Ok, fine, but it's not happening any time soon. Oops - the facility requires proof of plans so they don't get stuck with it.
I don't know how you'd feel but having to put her in a facility is difficult enough - making funeral plans is a real cherry on top. It is completely foreign to me why I keep getting in trouble for sarcasm.
Meanwhile we have more appointments to tour facilities, some out of the county. I can't imagine having to take an airplane or a shuttle to visit.
*************************************
We visited a few more facilities. One had a specific dementia locked floor. We were warned to expect things we'd never seen before. If I weren't already exposed to all sorts of interesting psych phenomena, I'd have been surprised. Instead, I was appalled. Halls that were wide enough, being narrow because the people were everywhere. People following our guide for no apparent reason. An obvious lack of nurse-to-patient ratio. Small gathering areas. Not a place I'd put an enemy. We got treated to a seventy year old woman with a walker, showing everyone her buttocks, having no apparent issue with this. She was not on the dementia floor.
The far-out place was the nicest by far. Staff-to-patient ratio was great, the facility was new and clean.
Every facility had alarms, in case the patients tried to wander. There was no uncertainty about the patients trying to leave, in that the alarms could pierce your eardrums from several buildings over.
The staff at just about every place was nice and knew the patients well, saying hello by name. Staff turnover wasn't an issue, with some employees being around for twenty years.
Now we wait and see which facilities have beds available, versus which we approve of. Cross your fingers.
*************************************
Visits to the hospital continue daily. Mom ranges between confused, vacant, and present. The other day she was in good spirits and chatty, but we couldn't understand what she as saying because the sentences were full of familiar words, but they weren't relevant to anything. "The nurse said tickets." "We were listening and very white." A nurse asked her about medicine and she broke out in laughter.
This was the woman who gave birth to me.
The facility we liked best accepted Mom. She'll be transferred tomorrow, assuming we don't get the 4-8" of snow we heard is on the way. This makes perfect sense, as it's no coat weather and the sun has made one of its infrequent appearances.
*************************************
Oops - the facility that approved yesterday does not approve today and will not accept her, citing her 'not being a good fit'. Nothing changed from yesterday to today. She has not shot up the ward nor changed insurances. Not being a good fit is code for something but we don't know what.
Our second choice also has a bed but I'm not sure my family is done letting the first place fully feel and understand our displeasure.
UPDATE: the first facility, having been made aware of our displeasure, has requested that we cease letting them know about our displeasure, using words like
As stated, the facility came through and Mom was transferred there yesterday. I visited for a while. The room is pitifully small, but we knew that. With two of us visiting, it was pretty crowded. The noises in the hall were a bit much, and Mom kept requesting us to close the door. One lady down the hall sounded like she was being strangled and was screaming for her life. Normally I'd have made a joke about this but this could be someone I know at sometime. I had switched to Polite Mode for the visit... it's something new and I'm not sure I like it.
The roommate, whose name will be withheld to protect the agency, seemed nice but was upset because someone was supposed to visit and didn't. Her part of the room was sparse and she told an aide that she hadn't been out of bed all day. Big Bad lefty's heart went sad when he put himself in her bed. The most she seemed to have for entertainment was a tv. I hope she likes noise, because there's going to be no shortage of it as the visitors troop through the place. I get the feeling she will start to become family too, if she cares to. Mom was the neighborhood mom and everybody liked to come to the house. It got passed down.
Speaking of tv's, although they did not yet provide a remote (or a phone...), I got the tv working by the inside secret method: I hit the POWER button. She gets more channels than I do. The even bigger bonus is that the tv has a built-in VHS player (high-tech time). Since we're morally opposed (or physically incapable) to throwing things out, we have a rather large tape collection, so that will be a good time.
We intend to get the room more homey in the next few days. She wants to go a few hours to the shore when it gets nicer, to walk the boards. I'm not sure what the possibility of this is, but we're thankful she can walk to the bathroom. She is allowed to go whenever and wherever she wants (outside and to the bathroom).
I'm not certain if Mom understands this is her new home. She's pretty clear lately but hasn't said a whole lot. The rehab folks have already been around. Speech therapy is indicated because sometimes she comes out with the wrong words. This is called speech aphasia. This is also somewhat frightening, as a few of her sons have been having trouble with this for a few years.
*************************************
Time has compressed in a strange way.
It's only been a week and a half, yet it seems like months... we've all been visiting, in various numbers, for the entire time. Dad's up every day. The kids are up every other day or so. The grandkids are up on the weekends. As soon as the dog gets his paperwork, he'll go visit too.
Dad is by Mom's side every day. Most of the day.
Dad looks like, and this is a technical term, shit. To an observer, specifically this observer, Dad's entire life consists of being with Mom from morning to night, then doing whatever Stuff he has to do at home. He's a bit tired and has every right to be. The staff knows him by name. We take the staff donuts every few days, which is an important bit of grease in the Wheel of Healthcare. I think the neighbors are beginning to suspect something, as there's always activity and visitors in her room.
Every one of us has cautioned Dad about the problems associated with caretaking, like burnout, too much caretaking, and burnout. In true family fashion, Dad has chosen to thank everyone and completely ignore their advice. While advice is worth what you pay for it, I'd like to think my advice is worth a little more, coming from a guy whose wife has been chronically ill almost since he met her. I had some very important lessons to learn, which can do Dad a world of good. Since too many of us are caretakers, we're bound and determined to ignore any and all advice we get. The situation is not critical at this point, but it could become so. We're only about ten days in and he is selflessly at her side most of the day. When this hits bottom, and we're all hoping it won't, things are not going to be pretty. There can be physical and emotional hurt, plus he won't be able to be there as much as he thinks he has to.
Mom is not particularly happy being at this place, and who the hell would be? She spent the better part of our previous visit asking what the point was. After all, they're getting old and need to be together. Dad pointed out that she asks good questions. The other day she asked why she was in there in the first place. Dad told her some of the things she was up to and she broke down, apologizing profusely. Maybe she realizes things....
I wonder what she does all day. We know there are exercises and therapy. I don't think the tv has been touched. The kids have been bringing snacks and decorations. True to form, the first touch was a picture of my nephews, because their mom believes that no surface or home is complete without a picture of her children. I will always be partial to dogs, but they're good kids.
Here's the very strange thing: Mom is in decent shape. The woman who kept escaping from her own apartment due to paranoia was not paranoid. She was reasonable present and only slightly confused. This coincided with the move from the hospital but no one knows why.
As this is a Facility, it has people in all shapes, physically and mentally. Some of them try to elope, which is a fancy term for escape. They get bracelets or anklets that set off alarms if they try to go through a doorway. As a result, any visitor coming or going has to find a staff member to get them through doors or onto elevators. The staff is very nice, and happy to get us by. This was only a problem when we were taking Mom out, at which point we set off every single alarm on two floors. It was right out of a sitcom, only it wasn't all that funny to us. They told us to wait at the main door so they could disable the alarm, at which point Dad stood there, pushing on the door and setting off more alarms.
So Out we went, Dad telling Mom we were going for a few hours and us telling Dad we had limited time due to a doctor's appointment. This was to become the theme of our visit. She was so happy to be out that it didn't matter what we did. And we shouldn't have tried to ask her what she wanted, as she wasn't particularly sure. She knew she wanted a large calendar for her wall so she asked if there was a Staples office supply store. On the way out of the drive, we saw a Staples across the street, precisely as requested (remind me to try this with guitar stores). So Mom got her calendar, Wife got her calendar, and I got a headache from the employees and the prices.
Next up: coffee. There was a Starbucks at the end of the block but Mom wanted coffee, so that was out. Dad knew where Dunkin Donuts was, so off we went. We were in a mild panic, as Dad's right around the corner could be 45 minutes away. He managed to find the only Dunkin Donuts in a three state area that isn't really an official Dunkin Donuts. They were very nice and there was no trace of food poisoning, so everyone was happy, except for me, because we had to sit in the car as there was no seating area in the store. Dad continued to explain that we had a few hours, even as I reminded everyone of the appointment. Mom was deliriously happy for a cup of coffee and the smell of freedom.
Meanwhile, Dad couldn't find the donuts he bought for the staff. I told him they were behind his head on the car's rear deck but he couldn't see them and sprang up to go back in the store where he must have left him. With no disrespect at all, we were silently wondering which one of them to return to the facility. Wife and I agreed that next time, we'd have this all planned out and show up appropriately tranquilized.
*************************************
Satisfied that attending by phone was sufficient, the wife and I did so. When I think conference, I think black conference phones with loud speakers and mics. In reality, one of my relatives set up her cell phone. This provided rich sound that reminded us of her phone being just outside of the closed door in the meeting room. We could barely make out anyone speaking, and only about every third word when we could.
Dad was unhappy about the mistakes the facility was making around food and medicine. This got addressed immediately and to everyone's satisfaction.
When the next question came up, we were immediately disconnected. I don't like to get upset and blame people... I understand cell phone technology is very new and they haven't worked out the bugs yet... after all, I remember my first phone - a Motorola "Beam Me Up, Scotty" flip phone, purchased around 1996. Expecting every little niggling issue to be addressed within 21 years is unrealistic.
This segued into one of the most important issues: whether Mom leaving the facility for short trips would affect her Medicaid eligibility. They kinda waffled a bit on the answer but said that if it was all the time, it could affect things. Relieved, we went onto the next topic, at which point we got disconnected a second time. New technology and all that...
The absolute best part of the conference was when the head of nursing informed us that every day, she prints out a Bowel Movement Report. For whatever reason, this is even funnier than farting.
Somebody had the brilliant idea of taking Mom back to her apartment to 'get some stuff'. The field of perpetrators was limited to Mom and Dad, or both of them. Every alarm bell went off in our heads and we all previously agreed this was NOT a good idea. This is where a tactical plan needed to be hatched, and this is important: saying NO all the time is bound to upset both of them, so if you can get someone else, perhaps in a position of authority, to say it for you, you're ahead of the game. Sure enough, we were told that therapeutically, this was a bad idea, which could return Mom in horrible shape, which could take months to undo. They did not recommend it but would take her back in whatever shape we brought her back in... they would not object to a family decision - just letting us know what they thought.
Regardless of whether or not we were satisfied with all the answers, the phone disconnected again, for the last time. 21 years.
Back at the facility later on that day, Dad pulled Wife to the side and asked when she would be able to help take Mom back to the apartment.
WHAT?
Dad heard precisely what he wanted to hear. Not that the professionals recommended against it - that they had to take her back regardless of condition. He was quickly shut down but we fear not for long. This is yet another part of the situation with which we had to deal... it's not just the patient who needs help!
Dad's still at the facility for some ridiculous amount of hours per day, making sure Mom got what she ordered for lunch and that the meds are correct. No amount of gentle persuading will move him from his post. Watching him nod off a lot is sad. Fortunately he is attending support groups.
We took Mom to an event that evening and she was just fine. She got back to the facility just as she had left, having had a good time.
Observing the activities of the residents is sometimes interesting and sometimes sad. Some of the people just sit around in wheelchairs, looking off into space. The main activity seems to center around eating. They rush into the cafeteria, some an hour or more in advance, to stake out their territory. Some of these folks are NOT pleasant and don't want you near their table. And make no mistake, this is THEIR table. I watched people in wheelchairs fighting over their conquests, to the point where staff had to intervene. An adorable group of old ladies was discussing among themselves how tall Wife is. One suggested seven feet. So they called her over to give specifics, which she did pleasantly. There's another lady called The Greeter, who has a savant-like ability to know which of us is whom, and never fails to tell us when we arrive. She said hello to Wife, telling her what her name was, who she was married to, where we lived, and our dog's name. She knew who I was, never having met me before.
Most importantly, Mom's roommate is a great match, per the staff and us. They get along really well, which doesn't happen all the time. We keep asking what we can bring her to eat and she keeps telling us stuff that she isn't allowed to eat, being on a special diet.
Mom called this morning. She saw the doctor and he said she's allowed to go home. She did not specify whether she was visiting or being sent there permanently. A quick call to the facility verified that she had not even seen the doctor.
Meanwhile, after another chat, Dad agreed that decisions needed to be made by the family.
*************************************
Mom calls... she's ecstatic. Why? Because the docs said she can come home!
Umm... what's that?
I'm getting out.
Oh? Which doctor?
Both of them.
I see.
Dad is sitting in the chair next to her, not bothering to add much.
One quick call to the facility later, we learn that there has been no doctor there today and they have a conference with the family before they do anything like this. And, strangely, this is 'normal'.
So where did she come up with this?
Why hasn't Dad gently brought her back to the ground?
Isn't she going to be really upset when she doesn't go home?
Stay tuned to this same Bat Blog.
*************************************
Wife said she needed to step back from this a little because it's overwhelming for her. She dealt with a familial situation of her own and it was pretty rough, but it was not helped by the back and forth. She characterized it like this:
Sister 1: all is well, the sky is blue.
Sister 2: what do you MEAN the sky is blue?
Sister 3: what shade of blue is it?
Brother 1: is it even supposed to be blue? I asked my friend, who works at a paint store ,about shades of blue on walls and he's an expert.
Sister 1: ARGHHHHHHHHHHHHHHHHHHHHHHHHH
*************************************
Dad took a couple hours 'off', which must've been really good. He had to be there at 6am because it was a shower day and the staff sometimes 'lies' about whether they gave her a shower or not.
We visited and Mom spoke longingly about going home. She also said something about Dad cleaning out a house so they could move there. We have no idea if any of this actually happened. We also suspect her flights of fancy are going to have her coming down hard because no one is disabusing her of them. We tried but she won't hear of it.
Dad complains about the food a lot, largely because Mom does. We would prefer they choose their battles and that this is the worst problem she will encounter. They had the head of Dietary in the room, who promised everything would get straightened out. The next day, the order was screwed up.
Dinner was late, as usual, but the thing that really got to us was that the order was beyond simply wrong.. the tag with what she ordered was on the plate but nothing she ordered was on the plate. She ordered grilled cheese but got macaroni and beef. She got salad, which she did not order and cannot eat. Not one single item was correct. Small wonder the parents are upset. The food was wrong the day before too. The poor floor staff has orders to report all errors to the dietary supervisor. Who exactly is having difficulty putting the items from a printed-out order onto a tray? We could understand missing a drink or something, but everything wrong? More than once?
*************************************
Speaking of meals, we learned that there are going to be meetings with the residents on food, as everyone is upset about the accuracy and sometimes presence of their meals.
It's amusing and interesting to note that things Mom 'didn't eat' before are perfectly ok now. I brought in some Wendy's Frosties, which she consumed quickly. Never would I have thought she'd touch one.
There is no word on the Medicaid application or acceptance.
The cafeteria is a mess. There are not enough chairs. Mom says there's a lot of verbal abuse and prefers to eat in her room.
The social worker says Mom is isolating. And Dad is ordering food not on the menu. I'm thinking the menu comment is pretty ironic, given they can't give the residents the right meals in the first place. Dad only surfaces when the order is wrong, so I'm skeptical.
The family continues to be in close contact. Although there's bitching, I'm still liking this facility. She's safe and gets meds, which is more than I can say for some other facilities.
***************************************
We're about two months down the line.
Dietary has still not gotten the orders straight and I think the folks have finally given up. They must hire the people who couldn't get jobs in fast food. The brilliantly illiterate, longing to be in healthcare, making a difference. And true to form, they ARE making a difference - by upsetting and pissing off most of an entire facility that cannot speak for itself.
The facility has stopped Mom's therapy. Why? The insurance won't pay for it. They are not doing a single thing about her mental state. Medicare is still active, as Medicaid still has not approved her.
We asked for her records, which would prompt a medical release letter (that we didn't receive). We put her on the list for an eye doctor appointment, which hasn't happened. We're not sure the inpatient psychiatrist has been there. And none of this has been communicated to the family, as we were promised in the family conference.
So yes, she's safe, even if only from herself.
But now we're getting calls from the parents, saying she can't spend another night there.
And she's not talking to her roommate, acknowledged as a great pairing, because she is scared by her. We don't know why.
Some of the family wants her out of there, claiming we got screwed. If that were true, how does one look for a facility that won't screw us?
There is something called a variance, which will somehow allow Mom to stay at home and receive a certain amount of professional care. Parts of the family want this; parts recognize what a potentially horrible decision this could be.
Is this a decision mere mortals can make?
*******************************************************
Further on up the road, we still don't know about insurance. Maybe somebody does, but we don't. Some of us are working through connections to get Mom into a much better facility. We're very early in the process.
Mom visited for a party, as she leaves the place every once in a while. Bad decision, as she wasn't herself and didn't want to leave. And the grandchildren didn't need to watch the spectacle, especially the one who doesn't understand.
As before, whenever the behavior goes to hell overnight, they need to check for a UTI. Did they check? We're not sure, but we made sure to tell them to check. Apparently she tested positive and was given antibiotics. This was the best outcome, as she'd be fine in short order.
Two days later, Dad tells me she doesn't have a UTI and the antibiotics were stopped. Checking in with Nursing, the UTI that she doesn't have is actually a UTI that she does have and she is still on antibiotics. We seem to be having an incredible amount of difficulty with the distinction between Does and Does Not. As I see it, it's pretty simple. As others see it, it appears rather more complex. And on we go. We like the UTI option because the bizarre behavior will go away in a few days. Otherwise it's a deterioration in her condition.
There was a room change, although we're not entirely sure why. The roommate was a bit caustic but everyone seemed to like her.
Perhaps UTI-related or perhaps behavior-related is Mom's vicious impatience with Dad lately. He has little choice but to do as she says, which means we're getting calls and strange requests at odd hours. Today's call was for my wife. Mom wanted to tell her to pick her up and she would come to our house to stay the night. Clearly the UTI hasn't resolved. Wife is a clever woman and managed to cut things down to wife's extended visit during the evening, as Mom doesn't want Dad to leave. Poor Dad looks like he hasn't slept in a few weeks and got out while the getting was good. So it's ladies' night at the nursing home.
Dad has been warned not to enable Mom further.
***************************************************
So how's that insurance thing going?
Good question.
Months later, Medicaid was granted, probably after Medicare was exhausted. No other changes in and by insurance. No changes is care.
Mom told Dad not to come up during the day, for whatever reason, so he visits around dinner. Maybe he has a girlfriend during the day - we certainly have no idea.
****************************************************
We're noticing changes in behavior. Good changes.
Mom seems more present and less goofy. Yes, she's still a little frail but during visits to the facility and when she visits from there, she sounds good. She's getting around fine. Appropriate behavior around the grandkids. Only a small amount of paranoia, and not harmful or affecting her too much. She thinks people are reading her journal. Could be worse.
When she wants something, like getting out, she's fine. All better. She's been fine a lot lately. Family, close and far, have commented on how well visits have gone.
Because she's fine, she dismissed the pyschotherapist. This was discovered later. Physical therapy stopped because she's ok and they can't do anything more for her.
*****************************************************
After having scoured the local facilities, we found this the most suitable one by far. After Mom was admitted, we started noticing all sorts of cracks, from unhappy staff with turnover, to complete incompetence. The head of diet promised personal hands-on service, as he was appalled at the results. This vanished after two days, returning to its really sad state. We watched all sorts of shenanigans on the floor with the staff... talking on their phones, not working, ignoring buzzers... my siblings declared this was not acceptable.
Well, it was the best of the available facilities. It's not filthy. No abuse. It's a safe place. Unfortunately that's the most you can hope for. In spite of that, Mom wants out, as any normal person would. We think she and Dad are agitating. She tells us she's fine, the doctors say so, and she's going home. Unfortunately the siblings are also agitating for her to go home. It's not like we don't all want her to be happy, but is this really the safe thing to do?
All of the docs in the hospital and facility have strongly advised that she not return to her apartment; it could be too traumatic. Since she can sign out for periods of time, Dad takes her places now and then, plus family visits. Suspicious behavior triggered our radar and we discovered he had taken her to the apartment.
She demands, he jumps. Unfortunately the person giving the orders has dementia and her lieutenant follows them, regardless of consequence, enabling the hell out of her. When called on the carpet, he says whatever he thinks we want to hear, then does something else later.
There's a quarterly conference with the family. Or rather, there's supposed to be one. The facility, surprisingly enough, dropped the ball. So we scheduled one. Later on, we got a call from them, informing us that the psychiatrist and medical doctor have decided she's too highly functional for the facility and they're discharging her. Discharging? She has dementia, Medical People. Even the least medically knowledgeable people understand this is wrong. You have a person with dementia, which is cyclical in nature, and you're sending her home. Home, with knives. And medicine, both of which were an issue when all of this started. Most of all, sending her home with a spouse who enables her and hasn't proven his ability to say no or dispense medicine correctly.
If she comes home with Medicare, we established earlier that there's little to no assistance for people at home. There may be on Medicaid, but she won't have that. Everybody seems to think this is ok. I'm terrified of 3am calls that Mom's running around outside. We'll find out more at the conference.
If she comes home with Medicare, we established earlier that there's little to no assistance for people at home. There may be on Medicaid, but she won't have that. Everybody seems to think this is ok. I'm terrified of 3am calls that Mom's running around outside. We'll find out more at the conference.
********************************************
We have established that this facility cannot be trusted to organize a sock drawer, no less food or patient care, and this is much better than others we visited. For the conference, they did not let us down. One social worker called out sick and the other way busy, so they couldn't meet with us. We said we'd reschedule, but they wouldn't. So we got Nursing. How exactly is Nursing going to help with insurance information and plans? They aren't.
The first thing she asked was what was our plan.
Our plan was to ask you what to do. For your help. You run a facility, we have an ill mother. Tell us what to do. You have floors full of dementia and old age folks - you should have some idea of what to do.
Apparently not.
Kept referring us to other departments. Suggested we get information from the hospital Mom went to before this facility. Didn't know anything about insurance. Didn't know about home care. Suggested Life Alert (not covered by Medicare and has extremely poor reviews). Suggests appointment with primary doc (who is not a specialist).
They transferred us to another department that at least explained insurance (Medicaid pays for facility per admission, Medicare or previous insurance takes over once discharged). Not much help with care after discharge.
A period of our lives we will never get back. Almost no help at all. They're sending a dementia patient home with her husband, who is not well-equipped to take care of her 24/7/365 and normally just does what she says to do. Yes, she's highly functional. And yes, this will cycle down, like before. And their advice was to take her to the E/R and start the process over again. Assuming, heaven forbid, she doesn't play in traffic because she thinks her husband or someone is trying to kill her.
This is where the system completely falls apart or simply doesn't exist. At her level, there's staying at or going to the facility. There IS a third option, assisted living, but insurance doesn't cover it and there's no money to pay for it. This is where she belongs.
Now we're all looking into what resources are available. People are thrown to the wolves. If they have no one to help, what will become of them? Just someone to find a little help for them. Through time, there has been no shortage of old people. Why is this so difficult?
The family was stretched beyond its resources when the dementia hit hard. Now it's stretched in a different way. People are aggravated over the situation, which eventually filters down to personal interactions. Family gets crabby with each other. Misunderstandings occur. We have to remember we're all on the same team.
Now we're all looking into what resources are available. People are thrown to the wolves. If they have no one to help, what will become of them? Just someone to find a little help for them. Through time, there has been no shortage of old people. Why is this so difficult?
The family was stretched beyond its resources when the dementia hit hard. Now it's stretched in a different way. People are aggravated over the situation, which eventually filters down to personal interactions. Family gets crabby with each other. Misunderstandings occur. We have to remember we're all on the same team.
*****************************************
The facility sent staff to walk through her apartment and see if it was ready and safe for her to return to. As far as I know, all she needs is railings in the tub. She is in great voice; best in recent memory.
Now we wait for a discharge date. And hope that everyone is up to the challenge. Or that there will be no challenge.
==========================
The discharge went as smoothly as the Keystone Cops could make it. They weren't very helpful, but what did we expect?
Mom's home.
She and Dad are thrilled beyond words.
Everybody's happy.
Mom is still a bit confused but largely functional. She maintained that all she wanted was for the two of them to continue to be together and grow old. She caught a hell of a break.
This is the closure of the story and there will be nothing else to relate.
Oops - I spoke too soon.
It's well over a year later and Mom's been living at home successfully, even though she's getting weirder.
Dad had some strokes. We only discovered at that point that there was cancer all over his body. While he was in the hospital, we started to discover that he had been covering up for Mom for years. The children had to go to her apartment at least twice a day to give her meds, which she couldn't take reliably by herself. Then we had to cook and make sure she was eating. When Dad got out of the hospital the first time, we had to take care of both of them. As we have families and jobs, it wasn't easy.
Mom got to the point where she could take her meds and cook for herself. By then, Dad was back in the hospital and wasn't coming home.
I can't imagine how someone could hear what she had to hear, after being married for many many years. This in addition to her deteriorating mental status. Was it a gift?
Things continued to go downhill slowly.
The apartment complex was worried because she was wandering the halls.
She left the sink on, which caused a small leak.
She used to be the best cook in the whole family. Now she can cook simple things for herself. The microwave had to go because it was too confusing.
There are daily complaints about the phone not working right (she has difficulty plugging the charging cord in and operating the phone in general, even with voice assistance). Her normal peaceful demeanor has gotten angry, but only to 2 of us. I get 'Good Mom,' who has some trouble figuring out a word sometimes. Wife gets Bitch from Hell, who demands things, that are sometimes not-doable. Wife has run over every morning for weeks to put in eye drops after an operation. Then gets bitched at because she didn't have something with her that was desperately needed (no it wasn't).
We're madly researching doctors, getting a correct diagnosis and treatment (if possible), and seeing what resources are available. The city will provide 3 hours per week of assistance in-home. There are day programs available, which we're looking into and figuring out cost. Who's responsible for all research, costs, and treatment? The children, if Medicare doesn't cover it (which they don't).
TIP: make sure your loved one(s) have a retirement/illness plan
----------------------
Things started to happen at her place.
She started behaving oddly in the evenings, known as Sundowning.
Her complex was beyond concerned.
We took her to the emergency room. Physical 100%. Dementia. And by the way, here she is, go do something with her.
Huh?
We needed help.
We got a diagnosis.
I don't expect the hospital to cure her (it would be nice) or warehouse her. I do expect the hospital to help the family. A social worker popped by shortly before the discharge and said a few words. On the first day, the doctor said she shouldn't be living by herself.
They ordered a little home help.
The help ordered will not cook. The help ordered will not be there when she sundowns. The help doesn't sound helpful. This also means some of us are promoted to cook.
We are left with very few options...
-------------------------------------------------
Oops - I spoke too soon.
It's well over a year later and Mom's been living at home successfully, even though she's getting weirder.
Dad had some strokes. We only discovered at that point that there was cancer all over his body. While he was in the hospital, we started to discover that he had been covering up for Mom for years. The children had to go to her apartment at least twice a day to give her meds, which she couldn't take reliably by herself. Then we had to cook and make sure she was eating. When Dad got out of the hospital the first time, we had to take care of both of them. As we have families and jobs, it wasn't easy.
Mom got to the point where she could take her meds and cook for herself. By then, Dad was back in the hospital and wasn't coming home.
I can't imagine how someone could hear what she had to hear, after being married for many many years. This in addition to her deteriorating mental status. Was it a gift?
Things continued to go downhill slowly.
The apartment complex was worried because she was wandering the halls.
She left the sink on, which caused a small leak.
She used to be the best cook in the whole family. Now she can cook simple things for herself. The microwave had to go because it was too confusing.
There are daily complaints about the phone not working right (she has difficulty plugging the charging cord in and operating the phone in general, even with voice assistance). Her normal peaceful demeanor has gotten angry, but only to 2 of us. I get 'Good Mom,' who has some trouble figuring out a word sometimes. Wife gets Bitch from Hell, who demands things, that are sometimes not-doable. Wife has run over every morning for weeks to put in eye drops after an operation. Then gets bitched at because she didn't have something with her that was desperately needed (no it wasn't).
We're madly researching doctors, getting a correct diagnosis and treatment (if possible), and seeing what resources are available. The city will provide 3 hours per week of assistance in-home. There are day programs available, which we're looking into and figuring out cost. Who's responsible for all research, costs, and treatment? The children, if Medicare doesn't cover it (which they don't).
TIP: make sure your loved one(s) have a retirement/illness plan
----------------------
Things started to happen at her place.
She started behaving oddly in the evenings, known as Sundowning.
Her complex was beyond concerned.
We took her to the emergency room. Physical 100%. Dementia. And by the way, here she is, go do something with her.
Huh?
We needed help.
We got a diagnosis.
I don't expect the hospital to cure her (it would be nice) or warehouse her. I do expect the hospital to help the family. A social worker popped by shortly before the discharge and said a few words. On the first day, the doctor said she shouldn't be living by herself.
They ordered a little home help.
The help ordered will not cook. The help ordered will not be there when she sundowns. The help doesn't sound helpful. This also means some of us are promoted to cook.
We are left with very few options...
- Do nothing: she'll get worse. Heaven forbid, the sundowning will cause problems with her living situation and someone might get hurt.
- The medicine change will help and things can go on.
- Assisted living: it's all private pay. The cost is astronomical.
- Nursing home: The good facilities are private pay. The rest are various shades of dump, in which the lowest common denominator is hired, poorly scheduled, and the facilities all smell from urine (we checked a lot of them out).
I'm tempted to say the country has done a very poor job with our old people, but they've done very little over all. People have been getting old and demented forever, yet it seems like a new thing. We're so busy trying to pay for health insurance for ourselves at this time, we don't know much about what comes after. The default, nursing homes, are paid for by the state. This means tax money (Medicare, if it exists, converts to Medicaid). Think about what's going to happen as more and more go into the system.
Mom isn't completely out of it. She's coherent. She's confused. She can carry on a conversation. She seems a little goofy sometimes and can't do what she used to. She forgets and has cognition difficulties, but somebody's home at all times. While technically she doesn't belong in a nursing home, we can't afford any other option.
Time, effort, and group dynamics are taking their toll on the family.
To be honest, we are all resentful for getting stuck with this, but that necessarily takes a back seat to what has to be done. There are burnouts, general frustration, and personality conflicts. Mom's also toxic to some people.
In the 'old days,' we/families took care of our own.
I would have her live with us, but I'd wind up with either a divorce or a wife with bleeding ulcers. The toxicity has already caused great emotional and physical pain.
-----------------------------
Things continue their rollercoaster-like pace.
Day care centers are being evaluated.
In-home evaluations are occurring.
When you're looking up at the blue sky, you feel a certain way.
Then a weather expert comes up and tells you the sky is green.
You look around for who's playing a joke on you.
That's what it is like, when the visiting nurse says it's not dementia.
Well, she forgets things, poor cognition, goes nuts (sunsets) at night, can't cook after a lifetime of cooking... what is that called? And while we're at it, why did the doctor at the hospital say she had dementia and ordered your visit? Why did the hospital raise her dosage of the dementia medication?
The family is split between getting her admitted to a nursing home now and hey, she's too high functioning.. let's wait a while... we feel guilty.
Now when I say split, I mean on the verge of splitting the family up.
One side says wait, the other side says you're waiting for something bad to happen to Mom.
Far flung family is also upset.
We may find some day programs. How do you get someone who won't answer the phone if she doesn't know you to use a ride-share program for transportation? Could we take her every morning at 9 and bring her home every evening at 5?
Research continues.
-----------------------------
Things progress. And when I say progress, I mean a lot of things were done. You can barely tell.
The Magic Money Gremlin sent Mom an aide, a few days a week.
The Magic Money Gremlin is not the State or County.
The county may send someone an hour per week.
To make things more fun, when the social workers and aides show up for evaluation, Mom the Angel appears, who doesn't need much help. Some of us had to stand behind her and shake our heads. Mom will not do anything to help herself. She thinks we can handle it. Or she can handle it. Or we can order up some people to help. She wasn't specific as to how this was going to be paid for... My wife has multiple personalities - my mother does a fair impression. Different people get different Moms.
The family is not happy.
And when I say family, I mean the ones who are still talking to each other. In many many years of family harmony, with no divisions, we find ourselves arguing. The funny thing is that we're all arguing because we want what's best. I could never imagine this coming between family: the irony is that I was the first out.
Please learn from this page, although I wish you didn't have to.
Day programs were visited and she'd be welcome there. No talk of price has happened yet. We also don't know about transportation, because she needs help. Not walking, but being sure when and where she's going.
-----------------------------
Family unrest continues but so does cooperation.
With all the money that has appeared from nowhere, there are now visiting aides. This seems to help, at least for the time they're with her. I have no idea if it's helping long term. Day programs are not being pursued further for the time being.
Life at this point seems to be about making things safer and easier to operate. 2 of 4 stove burners were shut off, to avoid burns by reaching over them. The microwave went because it was too difficult to operate. Reheating is done with a small toaster oven. I angled it a few degrees, so she can now see the display. That made things much easier. Unfortunately we spent a while on setting the temperature, using the temperature knob.
We also spent a while on what to do if it gets too hot. The thermostat has a large sticky with an arrow and the word HEAT. Flipping the switch the other way turns on air conditioning.
While the tail is wagging the dog, it's important to keep in mind the reason this is happening: we want Mom safe and alive. The irony of the microwave going away and 2 burners shutting down is that we were among the first with a microwave, those many years ago. Mom was known as an incredible cook. She spent a lot of time in the kitchen. Now she agreed not to operate the regular oven unless someone was there with her. It's very difficult to see this. Perhaps remaining angry and sarcastic is a good idea.
--------------------------------
It's interesting to note that Mom has her days. Sometimes she's 80%, sometimes she's 40%. Today she was 40% but as you might guess, the dog was helpful. We took them both out, the dog sat on her lap, and things were better.
----------------------------------
Change.
No.
Any minor change in routine throws her into panic, eventually tears.
Her phone's battery died and we had to think about getting her a new one. Even a similar one would cause trouble, so we got the battery replaced. She says something's not right and the battery guy is an idiot. She can't tell me what's wrong.
If someone tells her they are picking her up at 10, she'll call a few times with the wrong time.
When you go to visit, you have to call in advance. The apartments have a system where the tenants have to let people in. If you don't call in advance, she won't know who you are when you get there and hang up on you.
The other day we called and someone else answered. We heard Mom in the background, so there were 2 people there. When we visited, Mom swore there was nobody but her in the apartment. However, there were 2 men in the hall who wanted to get in and steal her belongings. Paranoia ran rampant at Sundown. Unfortunately it also ran the next day.
All questions have to be singular: Would you like to go to the park?
Instead of Would you like to go to the park - have you been there lately? Choices are difficult, so we ask Would you like to go to The Big Restaurant instead of Where would you like to eat?
Things that are minor to us are major to her. The other night she called four times for something, while I was on the phone. When I called back, I calmly explained that she can leave one voicemail and I will get back to her the moment I can, like I'm doing now. She got that.
A relative wants her to visit, out of state. We had to say no, because just getting her on a plane would not work out well, no less the change in environment.
She functions in her apartment, as far as we know, but she looks more confused more often, than the Mom we knew.
She's very lucky because her adult kids tend to her needs, sometimes to distraction. If there were only one child or no children, she'd be institutionalized by now.
I am not jealous or angry, but I guess alzheimers/dementia doesn't have the clout of breast cancer, in terms of research.
-----------------------------
Things continue their rollercoaster-like pace.
Day care centers are being evaluated.
In-home evaluations are occurring.
When you're looking up at the blue sky, you feel a certain way.
Then a weather expert comes up and tells you the sky is green.
You look around for who's playing a joke on you.
That's what it is like, when the visiting nurse says it's not dementia.
Well, she forgets things, poor cognition, goes nuts (sunsets) at night, can't cook after a lifetime of cooking... what is that called? And while we're at it, why did the doctor at the hospital say she had dementia and ordered your visit? Why did the hospital raise her dosage of the dementia medication?
The family is split between getting her admitted to a nursing home now and hey, she's too high functioning.. let's wait a while... we feel guilty.
Now when I say split, I mean on the verge of splitting the family up.
One side says wait, the other side says you're waiting for something bad to happen to Mom.
Far flung family is also upset.
We may find some day programs. How do you get someone who won't answer the phone if she doesn't know you to use a ride-share program for transportation? Could we take her every morning at 9 and bring her home every evening at 5?
Research continues.
-----------------------------
Things progress. And when I say progress, I mean a lot of things were done. You can barely tell.
The Magic Money Gremlin sent Mom an aide, a few days a week.
The Magic Money Gremlin is not the State or County.
The county may send someone an hour per week.
To make things more fun, when the social workers and aides show up for evaluation, Mom the Angel appears, who doesn't need much help. Some of us had to stand behind her and shake our heads. Mom will not do anything to help herself. She thinks we can handle it. Or she can handle it. Or we can order up some people to help. She wasn't specific as to how this was going to be paid for... My wife has multiple personalities - my mother does a fair impression. Different people get different Moms.
The family is not happy.
And when I say family, I mean the ones who are still talking to each other. In many many years of family harmony, with no divisions, we find ourselves arguing. The funny thing is that we're all arguing because we want what's best. I could never imagine this coming between family: the irony is that I was the first out.
Please learn from this page, although I wish you didn't have to.
Day programs were visited and she'd be welcome there. No talk of price has happened yet. We also don't know about transportation, because she needs help. Not walking, but being sure when and where she's going.
-----------------------------
Family unrest continues but so does cooperation.
With all the money that has appeared from nowhere, there are now visiting aides. This seems to help, at least for the time they're with her. I have no idea if it's helping long term. Day programs are not being pursued further for the time being.
Life at this point seems to be about making things safer and easier to operate. 2 of 4 stove burners were shut off, to avoid burns by reaching over them. The microwave went because it was too difficult to operate. Reheating is done with a small toaster oven. I angled it a few degrees, so she can now see the display. That made things much easier. Unfortunately we spent a while on setting the temperature, using the temperature knob.
We also spent a while on what to do if it gets too hot. The thermostat has a large sticky with an arrow and the word HEAT. Flipping the switch the other way turns on air conditioning.
While the tail is wagging the dog, it's important to keep in mind the reason this is happening: we want Mom safe and alive. The irony of the microwave going away and 2 burners shutting down is that we were among the first with a microwave, those many years ago. Mom was known as an incredible cook. She spent a lot of time in the kitchen. Now she agreed not to operate the regular oven unless someone was there with her. It's very difficult to see this. Perhaps remaining angry and sarcastic is a good idea.
--------------------------------
It's interesting to note that Mom has her days. Sometimes she's 80%, sometimes she's 40%. Today she was 40% but as you might guess, the dog was helpful. We took them both out, the dog sat on her lap, and things were better.
----------------------------------
Change.
No.
Any minor change in routine throws her into panic, eventually tears.
Her phone's battery died and we had to think about getting her a new one. Even a similar one would cause trouble, so we got the battery replaced. She says something's not right and the battery guy is an idiot. She can't tell me what's wrong.
If someone tells her they are picking her up at 10, she'll call a few times with the wrong time.
When you go to visit, you have to call in advance. The apartments have a system where the tenants have to let people in. If you don't call in advance, she won't know who you are when you get there and hang up on you.
The other day we called and someone else answered. We heard Mom in the background, so there were 2 people there. When we visited, Mom swore there was nobody but her in the apartment. However, there were 2 men in the hall who wanted to get in and steal her belongings. Paranoia ran rampant at Sundown. Unfortunately it also ran the next day.
All questions have to be singular: Would you like to go to the park?
Instead of Would you like to go to the park - have you been there lately? Choices are difficult, so we ask Would you like to go to The Big Restaurant instead of Where would you like to eat?
Things that are minor to us are major to her. The other night she called four times for something, while I was on the phone. When I called back, I calmly explained that she can leave one voicemail and I will get back to her the moment I can, like I'm doing now. She got that.
A relative wants her to visit, out of state. We had to say no, because just getting her on a plane would not work out well, no less the change in environment.
She functions in her apartment, as far as we know, but she looks more confused more often, than the Mom we knew.
She's very lucky because her adult kids tend to her needs, sometimes to distraction. If there were only one child or no children, she'd be institutionalized by now.
I am not jealous or angry, but I guess alzheimers/dementia doesn't have the clout of breast cancer, in terms of research.
-------------------------------------------
WHAT?
Mom keeps saying "What?"
She probably doesn't know she's saying it. It goes on all the time. When she gets upset, she keeps repeating it.
-------------------------------------------
Things are getting weird(er).
In the past 30 days, Mom's gotten less and less capable.
Again, the lady who practically lived in the kitchen is having trouble in that room. A fridge cleanout was required, which was unprecedented. She always knew what was there.
Someone observed her making a chicken sandwich, with 2 pieces of bread on top of each other, then chicken on the bottom.
A relative paid for her aide for an additional day - now 4 per week. She needs structure. All along, writing had gone away, but reading may have been ok - we're not sure. We're taking some coloring books over to see how she likes them.
The aide took her to Urgent Care for dehydration. Good catch.
Urgent Care sent her to the hospital, which kept her for hours and pronounced her perfectly ok. Great, but something seems odd with this equation. I picked her up and she wanted to know where my brother was. My brother set a bad example of jumping whenever she needed anything, including very small stuff, so she calls him for everything. If she is not happy with an answer anyone else gives, she calls him. He's tired of being Mommy.
We're hearing about a lot of electrical things not working right. This is because she keeps unplugging them. No one knows why. Her mortal enemy is her phone. Most days she can plug in the charger, but some days it's the most frustrating thing imaginable. Answering the phone is another problem. She mostly can't do it in time, so she calls you back. This is getting worse.
Technology is our friend, or so we thought. The phone has only 2-3 icons, so it's easier for her to figure out what she wants to do. This doesn't always help. The internal battery is dying and way more expensive than feasible. The phone is old and way past not being made anymore. The fact that it gets no security updates makes me nervous. ANY change confuses her, so a new phone will require months to be able to use it. She will fixate on it, mentioning it to everyone. People will show her how to do it, but it doesn't stick, and she keeps mentioning it.
The tv could be quite a good thing, but all attempts to show her how to change the channel have failed. So she watches one channel. She's worried if she changes it, she'll never find the original channel. There are dvds but I can't imagine she can operate the player.
The above are not complaints - just observations, so maybe people can understand what they're facing.
A relative offered her a place in her home. As incredibly nice as it was, it terrified the rest of us. Any change would be bad, plus she might wander or hurt herself in new circumstances, In addition, the rest of us wouldn't be right there to see her and help out.
We understand the state has taken an interest in helping older people avoid institutionalization. Not exactly altruism, it's because institutions are unbelievably expensive. We're speaking to them to see what they have in mind. This could work out well. To be honest, the aide is expensive for us.
One of her 'things. is her industrial size roll of saran wrap. Every time Wife leaves, she has to check to make sure there's enough wrap. In reality, there's enough to wrap the building, but it costs nothing to humor her. One day she chased me down the hall to check the wrap. Not only was there lots, there was a new box. I set the new box behind the existing box, just in case it ran out. I got the impression that wasn't computing.
--------------------------------
Mom's sworn enemy, the phone, is getting more and more troublesome. She has a lot of difficulty answering it, so we call, hang up when it goes to voicemail, and she calls us back. Today she missed 4 calls.
Charging the phone is a hit or miss proposition. A good portion of the time she can get her charging plug in. Unfortunately, some days, she can't, prompting emergency calls.
---------------------------------
A week ago, we walked in to find the toaster oven on, empty, and with things on top of it.
The other night she set off the smoke detectors in her building while cooking.
Not good.
-----------------------------------
Her words are getting jumbled up, regardless of mood.
She has an aide during the week and we visit or take her out on weekends.
------------------------------------
The apartment complex is not happy about the smoke alarm. At very least, they want someone there with her every night. I think they just want her gone. Can you blame them?
The family is in emergency mode.
Time to start shopping for nursing homes. Again.
-------------------------------------
She's.... feeble. Not the mom we knew.
She's still manipulative, which is actually a relief. It means part of her is still there.
The sundowning is bad.
The family, or some of it, feels that if there is help most days, she can stay there.
She isn't allowed to cook. She can use the toaster.
We have to drop off meals sometimes.
--------------------------------------
I want to urge you, in the strongest terms, to get your relative checked if their behavior gets weird. It could be as simple as a urinary tract infection (they mimic crazy). If they start acting out of character.. if the sweetest person in the world is getting angry regularly, bitching about the same thing over and over. If people or person starts noticing a change...
You can't stop it, but you can make things better in the meantime.
Watch any meds.
You'll get pushback.
-----------------------------------------
More and more, we discover how much my dad hid from us.
He's kinda laughing now, wherever he is.. "she's your problem now"
Dad, you shoulda said something a long time ago.
And about the weird changes in your own body.
It's eerily quiet without you, except for the obvious.
-----------------------------------------
Strange hoarding behaviors, although she was always weird this way. Maybe it's PTSD. "I need some gallons of water." You have 4 of them. "I need more."
Paranoia: he's stealing my underwear. I need to buy more. And some stuff at that store I like. She will be focused on this until it happens. She used to have Dad front for her and we wondered why he was asking for things so often.
There were 18 phone calls over 3 phones the other night. We had doctors visits and couldn't answer. I explain that it's only necessary to leave one message. Then I explain it again.
Out for dinner, her mobility is... off. Slow shuffling. When I point out where we're sitting, she tries to sit in a different booth. My wife was already sitting in the booth, so I don't know why she wanted to sit in the empty one.
We're happy she can still get around.
She has an aide for a few hours daily and the family takes care of her on weekends. Meals need to be prepared, but she can toast and make coffee.
---------------------------------------------
Paranoia is getting worse: "Aide stole my toilet paper"
The manipulation is getting worse and people are calling her on it. This may not have anything to do with dementia but is causing a lot of trouble. For a woman suffering with dementia, she knows how to act and what to say with different people and gets upset when they talk to each other about what she's up to.
The doctor's evaluation was ... that she has dementia.
The state has programs to assist sufferers, offering x hours of an aide per week, after testing. There is an approved list of providers.
We found a microwave with one knob, so she can use it. We marked where she turns it to in order to use it. Every day, someone explains how to use it and she generally can't. Since we had to fire her aide company, we have to take turns going over to make sure she has meals. She has no idea how lucky she is. It's sad that others aren't so lucky. We have to cure her of the "You have to drop and run to do everything for me" syndrome. We are not leaving work because her phone charger somehow became unplugged. Unfortunately, we may have partially set ourselves up for this by acceding to her wishes at first.
The phone behavior is getting worse too: if we don't pick up immediately, she calls back, sometimes too many to count, usually 3 at a time, across several phones. There is no emergency.
America has not caught up to dementia yet. It is a long process.
The states are putting together programs. This is because they save money over warehousing the patients in facilities. If you haven't, check with your state or state representatives to see what programs are available. They have people just for this.
-----------------------------------------------
Today's complaint was that the phone is broken. She never heard me call 4 times.
While we're visiting, I pick up the offending iDevice and call it. Sure enough, it's not ringing. I can't stand iDevices but eventually find the ring control. It's all the way down.
I want to know how and why she unplugs the toaster and somehow manages to turn off the ringer on her phone.
On the positive side, we found a new remote control for the tv. It has buttons for volume, channel, power, and mute. That's all. It's perfect! Thus far, she understands power, NEVER touch mute, and volume. Channel is still quantum math. I tried to explain it but she shook her head, as if I were trying to feed her live squid.
-------------------------------------------------
It's so interesting to see what she remembers or is on board with, as opposed to what she can't.
She went insane because she thought her hearing aids were not on right, then made a joke about death.
Once again, the company that sends her aides failed to send anyone. I don't know how these agencies stay in business. This is the 3rd agency. This is a warning....
--------------------------------------------------
We finally found a more reliable aid. She is not part of a company. 2 weeks have gone smoothly.
The days are weird... sundowning is something that's expected, but she's different.
Sometimes she is mixing up words, but fixes them and is pretty present.
Sometimes the wrong words come out and we can't get much more.
We're thankful for the good days.
Always remember to consciously love and appreciate your time together.
You may experience grief...it's ok. After all, you're losing your friend or relative as the days go by.
We're also losing the unbelievable chocolate chip cookie and heavy chocolate cake recipes.
Sounds shallow, but you never tried them :)
The roles have reversed.... we'd talk about our days to our mom.
Now she tells us about her lunch.
Medical science is not catching up quickly enough.
----------------------------------------------------
While there is still some manipulation, the words are getting weird.
The answers to questions, while using understandable words, have little to do with what was asked sometimes.
Earlier on, I divided her time into how present she was as Mom. The percentage is getting a lot smaller.
She also has a lot of depression, and sleeps longer hours. We don't know how much of this is the disease.
-----------------------------------------------------
The words continue to get messed up. She doesn't always respond appropriately. We talk to her daily - she's present for that.
The family has been talking about a nursing home. Somebody, possibly her, realized the choices were the home, or a family member in a different state, where elder programs were much better. This seems like a really bad idea, but I don't make the decisions here. You don't give your 15 year old a choice of car safety lessons or the car keys.
Where most of us are within a 15 minute drive, that will not be so across the country.
------------------------------------------------------
Her gait has gotten worse. It started normally, then went to shuffling. Now it seems to be shuffling in the same spot.
She thinks we're all going to fly across the country regularly to see her.
One of us is actually paralyzed with fear of flying and has to be repeatedly reminded the windows on the plane don't roll down.
------------------------------------------------------
We're down to the last few days on our side of the country.
Trouble with words continues, as does shuffling in place. If you take her somewhere, you have to gently show her where to go, then show her again when she goes the wrong way.
There is a lot of anger lately. No idea if it's her or the disease. Or both. If you don't do what she wants, you're 'nothing to her.'
-------------------------------------------------------
Mom is now on the other side of the country.
That side allegedly has much better services for the aged.
We'll see. I hope it works for her.
She has been more... blank lately. The goodbye party saw her shuffling around and laughing inappropriately. Yet at the end, she thanked me for everything I did.
-------------------------------------------------------
The move went well.
She is less stressed.
There was no fighting over possessions left in the apartment.
Possibly because we didn't ask for anything and only saw what was left.
-------------------------------------------------------
The new location was great at first. She looked good.
I think it was the constant company and stimulation.
Unfortunately, the paranoia is back.
She wants to come back and stay with us for a while. This isn't good even for a person with all their faculties. This may be all rambling anyway.
Dementia is a terrible thing in so many ways. It's one of the times you mourn while they're still alive. Mom's in pretty good shape, although the person that raised us is rarely there. And you know it's going to get worse....
--------------------------------------------------------
Trouble finding words is becoming more common.
I don't really get the feeling my mother is around much.. she talks ok but it sounds like more of a child-driven agenda (I want I want...).
There is a helper now.
Seeing that this has gone on long before we spotted it, I guess we should feel lucky. It's not like she took the express train down.
--------------------------------------------------------
She somehow fell out of bed (onto carpet). They took her to the hospital - no serious injuries. It took a few days for her to get back to where she could get out of bed and feed herself. Hissing, spitting, sleeping, and general unpleasantness.
There has been a lot of deterioration, both physically and mentally. We knew it was coming and the decision had to be made to get her placement. She understands and there were no issues.
The issues are now around placement. Medicaid will place her. They will place her wherever they can, first opening, which could be anywhere in the state. Option B is a kind of assisted group home for a few people. Unfortunately this can run over $3k. This child of hers cannot afford it. Option C is for her to come back to our side of the country, where she'd be placed locally, as she would've if she never left. The facilities aren't quite country club level. Theyre not even cheap motel level. However, she'd be close, where a few of us could visit. I feel this would be good for her. Unless others want to put up a large sum where she is now. It's difficult to visit, as it involves a cross-country flight.
If you have parents or other older folks around you, check to see they have a plan. The amount of stress and bitterness caused by failure to plan has taken its toll on the family.
Ironically, my mother-in-law is following in my mom's footsteps. The path is different. One day I went to visit and she didn't recognize me, talking to me as if she had just met me that day. After about 2 hours, all was well. It was one of the creepiest, saddest times I've had. Nothing like that has happened for years... she's just got a little bit of out of character behavior. To be honest, I don't know how any of us will handle it if Mom eventually doesn't recognize us.
-----------------------------------------------------------
Mom is in something we haven't seen before... it's a large house that supports about six or so people, with an aide. It's expensive.
Fortunately she likes the place. Fortunately she continues to be in good spirits. Aside from some word confusion, she makes herself completely understood. She's lucid.
------------------------------------------------------------
The things she remembers are interesting.
Conversations are still weird sometimes, but sometimes pretty decent. Sometimes they go off the rails. Regardless, we keep going.
She's convinced she's coming to our house for a while. Nobody knows why.
There may be adult diapers. I'm not sure yet.
I get the feeling her decline is much slower than 'normal'. Works well for the family.
She seems to be in good spirits and still calls out when she wants to. I didn't think she'd still be able to use the phone.
-------------------------------------------------------------
Mom is in adult diapers full time.
--------------------------------------------------------------
She gets frustrated if not able to say things. Like all of us, I guess.
She still gets an idea stuck and holds onto it like a pit bull.
Every now and then she has an outing. She gets to Baskin Robbins more than I do.
She used to be a favorable percentage our mom. Not so much. The therapists say we're mourning our loss in real time.
--------------------------------------------------------------
She was advised to use a walker because she's having trouble getting up.
In recent pictures, she looks a bit vacant.
Conversations continue to be difficult, with trouble finding the words. Strange beliefs continue to be held for months. They morph factually.
--------------------------------------------------------------
It's been a while. There are good days, but less than bad ones.
She has a walker.
The speech varies from random syllables to almost complete sentences. Trouble finding words.
NFG.
-------------------------------------------------------------
Two weeks later, another conversation happened.
It was another sad indication that things are going downhill. It generally takes a while for her to realize I'm on the phone, after my wife is done.
The words seem to be modulated like they're actual words in a sentence, but they're not real words. This comes amid some words.
Her emotions seem to be there but speech isn't doing too well. As all we have is a phone, this makes it very difficult, as well as very sad. Strangely, my wife can interpret for her. They always said they'd get a room together.
----------------------------------------------------------------
We did a video conference for a holiday. Mom gained a lot of weight and was fairly not there. I'm told it takes a while for her to realize things, even "Look here." No idea if it's side effects from a new medicine or disease process. Or both. She didn't seem to recognize anybody by face, and we panned all over the place to help her orient. She might have said something to my wife. On the other hand, I'm not sure she was looking at the screen. She looked kinda flat.
It's true: we're mourning in real time. The lady on the screen can not be the lady who raised the children on her own after her husband died. Who was the source of all information, as well as the best cook and neighborhood favorite host mom.
[20 years later]
Most of the same people are sitting around the holiday table.
Times sure have changed, although it sure was more lively when lefty was around. Part of his charm was that he had absolutely no filters. We had to be careful who we invited, lest they not understand and get upset.
Yeah, he was certainly his own man. Did things his own way, right or wrong, until the day he died.
Once he got a little (more) weird, he went and had the new Alzheimer's test, which was foolproof. He passed the test. He put things in order and took things easy. When he felt he was too much of a burden, he went to his bedroom, opened the box, and....
Of course we miss him, but somehow it feels less horrible, knowing he went out on his own terms. Aside from his own mouth, he was not a problem for his wife or anybody else. We can remember him as the problem child he was, not a completely debilitated shell of himself.
Yeah, but I still miss him.
-----------------------------------------------------------------
We got Valentine's Day voicemail from Mom. I figure she was prompted, as she doesn't seem to be oriented to day or date, but it's the thought. We called to say hi, as we do often. We're never sure what condition she'll be in. Today it seemed words were having a tough time getting out. She laughed inappropriately, which could certainly be worse. She fluctuates widely from day to day, or morning to evening.
We take what we can get. She does too.
She had a rough life, and this is her reward?
Fucking disease....
-----------------------------------------------------------------
My mother-in-law is next. She's exhibiting the same symptoms.
Now is the time to get her some help. It can't be cured, but it can be held in place.
Unfortunately she's not happy about seeing a doctor and the family has their heads in the sand, no matter what they're told. It's like PTSD for us. Every time we hear a story, we flash back to my mom doing the same thing.
If things start to get weird, please go to the doctor. Everybody's quality of life will improve.
You wouldn't refuse to go to the doctor if your leg was broken; don't hesitate because you don't want to admit there might be a problem. You owe it to yourself and everybody around you.\
Buy some insurance if you can. Unless you're incredibly rich, you'll wind up somewhere you don't want to be. Don't leave it for your family/friends/whomever.
-------------------------------------------------------------------
One therapy that allegedly helps is TMS.
It's a magnetic stimulation of the brain, also used for depression, smoking, OCD, and others.
Something like a football helmet is put on your head and there's some tapping, caused by magnetics. It has a very high rate of relief/cure for depression.
This is not a recommendation or statement of efficacy- just some knowledge.
Do your research and ask your doctor.
Aricept is used to treat mild to moderate dementia caused by Alzheimer's disease.
I can recommend this, but not for humans: our really crazy dog went on it. Pretend I didn't say that.
--------------------------------------------------------------------
Wife usually calls Mom, then eventually hands the phone to me.
They seem to understand each other.
Last week Wife was inconsolable, never having handed the phone to me. Mom barely managed a few words and noises. I hope this was just a bad day.
---------------------------------------------------------------------
Last time wasn't a bad day.
Today Wife got just a few noises and possibly some recognition. A staff member held the phone for her. When asked if Wife should call back later, she said, "Yes, please," and that was it. I guess we should be happy.
She raised us, largely by herself.
We watched her and monitored. trying to keep her comfortable and active, before assisted living.
It kills us to see her like this.
The next step is institutionalization.
Folks, I beg you- have plans in case you get sick. Cover everything you can, so family doesn't get stuck with the problems and the bills. Pre-pay your funeral or leave enough to cover it. Nobody is going to be in any shape to deal with it when it hits. You don't want to throw this crap on your kids or family or friends or the state. If you have the state take care of it, you'll wind up in a dim place with overworked employees, that smells of urine, for the rest of your life.
Here is an opinion....
Plan an 'exit strategy.'
After watching this slow motion train wreck, I could never put Wife and family through it. I also don't want to put myself through it. Sitting around, confused, incompetent, and incontinent is not life for me. Perhaps your state has assisted suicide laws. Perhaps you have a friendly doctor. Perhaps you can stash away some assistance. You own you. You make your own decisions. The sad and very funny part is that you have to exit while you're still slightly with it, or you won't remember you wanted to leave.
The above is opinion only and is not medical or legal advice.
When you or others notice yourself behaving oddly for a while. go to the doctor immediately. We can't cure it but we can stop or stall the progression. They key is to stop it as early as possible, so your loved one can retain as much as possible. This will probably be a BIG fight, but it's worth whatever it takes. People don't want to admit they're losing it and this denial only prolongs the agony. Family denial also plays into this. If my mom would have started on meds earlier, she might still be living on her own. Children and grandchildren could visit all the time. She would know where she was and who was visiting. Her granddog could sit in her lap. If she had a choice now, what do you think she'd choose?
And now my mother-in-law. Same weird behavior. Same denial. Same family denial.
It's going to be a long bunch of years.
----------------------------------------------------------------------
Mom seems to be stuck inside. She's there but mumbles constantly. Doesn't seem to recognize on video calls, but got excited about an upcoming visit.
Make no mistake: this is traumatic.
----------------------------------------------------------------------
My brother went to visit. He said she's in there, but communication isn't good.
She even complained about her accommodations, which is better than we thought we'd get.
----------------------------------------------------------------------
I was just told that if I wanted to see her, it should be soon.
Apparently there are some days she doesn't recognize my brother.
-----------------------------------------------------------------------
My wife spent some time visiting. She said Mom had 3 states: crying, participating, and looking through whoever was sitting there. My wife 'understood' her best and got along in a way Mom's own children could not. It was often joked that they were going to share a room at the facility.
------------------------------------------------------------------------
Mom was admitted to the hospital after she hadn't urinated in 24 hours.
The hospital discharged her back to the group home, but Hospice Care would see to her there. This is not end-of-life care. Yet. Morphine is being administered
It occurred to me that, while there haven't been any family get-togethers at the holidays, there weren't going to be any with the whole family anymore. I suppose it's the natural order of things, but it still hurts, and it was made artificially short. Humans deserve better.
-------------------------------------------------------------------------
She never snapped out of the delirium. Hasn't eaten or drank in a week. Nurse estimates less than a week. I hope this is a gift to her and she's not suffering.
---------------------------------------------------------------------------
She passed today.
Wherever she went, it has to be better.
We all deserve better.
Now we carry on. (?)
No comments:
Post a Comment