Dementia

It was Thanksgiving 2015 when we saw it. It was very strange.

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.


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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.

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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.

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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.

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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.


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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.


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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.


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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.


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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.
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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.




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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.



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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.
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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.

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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.


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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.


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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
harassment and noises like click. Boy, when they lie, they sure get upset about being called on it. The second facility, which also 'had a bed available' was asked, in person, if they were going to accept Mom and by the way, put it in writing. This cause about an hour's delay while they deliberated giving her the bed they already told us was available. One of our number threatened to stay there until they produced the document but the rest of us felt that occupying the building might get in the way of our stated goal. Caution won over and the requested paperwork is being drawn up, without so much as a minor televised police standoff. This worked out for the best, especially as the automatic weapons are at someone else's house and I'd have to deliver them before the police got there. [and as we all know, I'm kidding]

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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.


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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.


Somebody made the mistake of telling Mom that she could go Out. Out can consist of standing outside the front door all the way to staying somewhere else for a weekend. No amount of other info was assigned the priority of Out in the last few days. This was not helped by Dad, who also gets an idea in his head and holds onto it like a pit bull. He rightly decided not to perform this task without backup, in case he had any difficulty getting Mom to go back.

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.



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Next up was the facility's Patient Healthcare Conference. They encourage the entire family to show up and go over any questions they have about the care their loved one is receiving and what can be expected. Naturally the entire family made plans to attend in person or via phone. 10am on a weekday is the perfect time for a conference, as nobody outside the facility works or takes care of their family at home or goes shopping or sleeps late. We prepared for this conference by discussing the questions we wanted to ask.

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.

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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.


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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.


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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



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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?



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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.

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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?


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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. 

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