Ongoing (?) Alzheimer's Support Thread

Miscellaneous and Personal Stuff I Must Share
21

Thank you for your answer. She has a doctor’s appointment next week and I’ll talk to her primary care physician about that. We are also in the process of getting a Power of Attorney while she’s still lucid enough to understand and sign documents. She’s got a living will and my husband and I are her health care proxy so at least that part is taken care of.

My latest problem is that we’re going to Florida for 5 days after Christmas and we can’t leave her alone. Mostly because she’ll either forget to take her pills or worse, she’ll double or triple dose herself because she’ll forget she’s already taken them. (she’s on three different blood pressure meds) We wanted her to stay with her sister but she doesn’t want to because the last time she stayed there she was cold. That and she and the sister don’t always get along. She has a friend who might be able to come over and stay for those 5 days so maybe that will work.

22

My grandmother fooled many people for a long time. She read a lot of women’s magazines and would parrot the answers “I drink 6-8 glasses of water a day.” was a common response to questions about how she cared for herself. “I always have soup and half a sandwich for lunch” she would tell people while her “Meals on Wheels” containers would moulder in her fridge. When she met people who asked how she was and if she remembered them she would pull out things like “I’ve always said blue was your colour” or “And how are your children doing?”

Because of this my Dad had a difficult time getting people to understand she needed help. When she got pneumonia and he kept pressing for placement and care, he was treated as someone who would abandon his mother at her first problem. (He or my mother had spent every evening from 6-9 pm with her for two years) Finally a social worker happened to be in Grandma’s hospital room when she complained about the children peeking in her windows and making faces at her. She was on the 6th floor of the hospital. Suddenly my dad got a lot more respect and things started to move quickly.

One thing I can offer (both from the nurse and the family member perspective) is that sometimes hospitalizing a family member gets the ball rolling faster than endless rounds of appointments with family doctors, etc.

23

Three days straight now, Dad’s been sabotaging his medication schedule. He forgets to take his evening meds, so Mom gives them to him in the wee hours of the morning. He refuses to read the note she leaves him, believe me when I confirm what she told me, or listen to her when she calls to explain. No, no, he’s quite sure he took those evening meds, and Mom gave him the morning meds just like she always does.

If I bring him his meds, I now have to wait and watch until I see him swallow them. Otherwise, he’ll wait until I leave, and then set the pills aside. Then he gets snarly with me when I ask to take his blood pressure so I know if I need to give him half a clonidine or just pick him up and carry him to the ER.

All it’s going to take is one hypertensive episode to blow one of his many aneurysms or break a clot loose. Just one. Anything over 170/70 is dangerous to him. He gets symptomatic at 180, and at 190, it’s ER time. But if he keeps hiding his meds, refusing to take them, or arguing with me about taking his blood pressure, I’m not going to be able to catch it in time.

Mom and I have agreed that if he suddenly strokes out or we walk into a room and find him dead, it’s no harm, no foul. We will grieve. We will bury him. Then, we will get rid of most of his stuff, pack up, and move back to Texas, and I will be able to remember my dad like I want to. (And I know exactly what I sound like, and I hate it. It’s a fucked up world, people.)

24

Phouka, I at least don’t judge you. Dementia has you saying sentences you never thought you’d say, using coping strategies you never thought you would use, and feeling things that no outsider would understand. PM me if you want to vent more.

25

Phouka, you’re doing the best that you can. I’m fortunate that my grandparents do ok taking their medicine still but my grandma in particular is becoming increasingly more and more stubborn all the time about other things. There is only so much that you can do.

26

You can also ask the doctor about possible respite care through hospice for that vacation time if a relative or friend won’t work.

27

We had an epic battle this morning. It’s 20 degrees Farenheit outside and they come upstairs ready for church without any coats. I told them we weren’t going anywhere until they had coats on and they said that they didn’t have winter coats. Um, ok? So, finally they went downstairs and each put on another jacket over the jackets that they already had on. At this point I told them that those weren’t coats and my grandma got really angry with me.

So, we went to church with the understanding (at least on my part) that my dad would take them out shopping for real winter coats this coming week. I’d take them, but they’d probably refuse to go. Since then I developed a major headache and apparently completely tensed up because I attempted to take a nap for a little while and woke up with my arms and hands aching too.

I really hate arguing with them.

28

My dad loves pills. He is the best pill taker I have ever seen. The more the merrier, and if a doctor gives him another pill, or makes changes so he has different pills, he knows that he will live to be 100, so he’s happy.

My MIL, on the other hand, is in Assisted Living partly because of pills. Putting them in a pill case and reminding her to take them did no good. Her sons would go to fill the container up again and have to search the house for her pills. She insisted that someone was stealing them, anyhow. And that she didn’t need them. She was taking one of the hold-off-the-symptoms Alzheimer’s medications at the time (I don’t remember which - we went through three in the end). Her doctor took her off all meds and a few months after that we moved her to be closer to us (her son and me - we have more experience with dementia than anyone else in the family at this point).

Her new neurologist put her on another hold-off-the-symptoms pill, and my MIL immediately started having trouble sleeping, had muscle aches, headaches, couldn’t eat, and was more forgetful - she came up with new problems every day. Most of which was only her reaction to having to take pills. So we stopped that one, tried one more, with the same result, and gave up. She now takes an antidepressant and a vitamin. And she no longer fights it, because it has become part of her routine. The nice girl comes in every morning to give her the pills and watch her take them, and sometimes the nice girl brings her a waffle, too.

I think the only thing that she can hold onto anymore is her routine. If we do anything out of the ordinary, she may like it (dinner out, visits with great-grandkids) but it messes with her sense of what time of day it is, and then she doesn’t go eat in the dining room because it is too early for breakfast (at 4pm or 8pm or whatever other time space she is in at that moment). She never knows what day it is, even with a big calendar on the wall (we X off each day) and a big clock on the wall that shows time, date, and day. Right now I have to explain to her why it is cold outside (it is winter, Mom. Really? I thought it was still spring…?).

With my dad, because he has a different kind of dementia, and lots of medical issues, we never know what will happen. With my MIL, which each day is new and exciting, we know what will happen in the end. Alzheimer’s is a nasty disease. Unfortunately, my MIL is healthy enough to last through to the end stages.

29

My dad is an interesting story. Honestly, I started keeping a journal because if I had no way to vent I would have killed him or myself. I’m only half joking, there. And as I watch him turn into this person I don’t always like, I wonder how much of it was there under the surface all of his life. His particular dementia affected his judgement center first. But he’s always had trouble making logical decisions, or common sense I should say. I think my mom kept him pretty centered, although as her dementia took hold, he had nothing to tether him down, so to speak, and he started acting in ways that were not … good.

But the biggest problem with him right now is his behavior. He was kicked out of two Assisted Living facilities, for stalking staff in the hallways and trying to kiss them, threatening legal action if he were not allowed to date staff, yelling at everyone about the evil tyrant running the place - oh, and his constitutional right to date whom he pleased. This was all right after my mom died, and I realize that part of it was that he missed her and wanted to find a replacement. But that didn’t make it any easier when two weeks after my mom died he wanted me to take him to the dentist so he could ask one of the office ladies out. I will forbear to describe my reaction and his reaction to my reaction… but he has been on a quest to find a replacement wife for 3 years now, and sometimes I can hardly take it.

Like I said, I started writing. I would come home and type furiously, angrily. I repeated a mantra to myself whenever I was alone: It’s not his fault; it’s the illness. I tried to find humor in his actions (and there is a lot - I’ll tell stories later). I wanted to have nothing to do with him. I apologized to all the women he hit on when we were out. It was a rough time. It took months, but I came to terms with it, pretty much. It’s NOT his fault. It IS the illness. The way he goes about getting his own way, though, and the way nothing is his doing, everything is someone’s fault (not his), and the way he has started hitting other residents and yelling at staff if he doesn’t like what they are doing (cleaning up after him, or sitting in a chair he wanted) seems so familiar to me… I think that this might be his core personality, and he just covered it up before with civilized behavior because he was told he had to. And the thought that this is maybe who he truly is? I don’t know how to deal with that.

My mother’s core personality, which came out more and more when she got worse, was just the gentlest sweetest person ever. Maybe that makes it harder to watch my dad degenerate into this selfish aggressive demanding person.

30

Oboelady, has your Dad seen a geriatric psychiatrist? Not so much for therapy, but to adequately manage his meds. Some of the medications (one in particular, but I am not going to name it because I have seen this med do a lot of good and this is a rare (maybe 1 in 200 people I’ve seen on it) side effect) basically makes some men randy as hell. To the point that myself and another staff member would have a molestation case against one patient. A medication adjustment can reduce some of this, but again, best case scenario the underlying personality can be managed but not “cured.”

31

Reading this thread makes me glad there’s only one of me that D has to deal with. Right now, it’s forgetfulness (the latest is taking a shower with my socks on), and she does the driving since I almost killed 3 people (including me) back in April. But I feel for her, because with her pulmonary hypertension she can’t get around in the supermarket without a motorized cart or a wheel chair, which I push.

But you know, it’s her pride and no way will I ever take that away from her.

Thanks

Quasi

32

I’d like to go in a bit of different direction.

Old age dementia is one thing. Early onset of dementia is another. Pat Summit (women’s basketball coach at U of Tenn. co-holder of this year’s Sport Illustrated Athlete of the Year) for example.

If someone is diagnosed with early onset, what do you think about doing genetic testing on the family. The diagnosis of early onset dementia is difficult for children. They worry about their parent but they also worry about themselves.

Genetic testing is a two edged sword. One one hand, if the child knows they carry the genes it can be traumatic. On the other hand, with medical science advancing as it is, there can be a real benefit in banking the date early on.

Any experience or opinions?

33

My doctors are 90% sure I carry the gene, knowing what they do about both my parents, so yes, I wouldn’t mind me being tested if it will improve the chances my son and grandson may not have to deal with this disease.

Q

34

Thanks. I appreciate your input. I would like to hear more from others. My sense is that genetic testing is good but I’m not sure about imposing it on the children. Should it be left to entirely their choice?

35

I’ve heard that as well - that people become more who they really are as they age - but I’m not sure if I believe it. My dad’s dad could politely be described as a ‘stong personality’ when he was younger, but was honestly more like forceful and overbearing when he wasn’t getting his way. As he’s lost his short-term memory and general cognitive abilities, he’s gotten happier and happier. He’ll occasionally try to order people around, but will quickly stop when he’s called on it. He loves his family, thinks every meal is the best he’s ever had, and things just couldn’t be better. He’ll tell you that his wife is the best person in the world and they’ve never argued once in their 60 years of marriage. My grandmother just smiles and rolls her eyes. The more handicapped he’s become, the happier he’s gotten.

My dad’s mother was also a ‘strong personality’, and has become more so as she’s aging. She absolutely refuses to consider the possibility of moving to an assisted living facility, and has told people to never bring it up in her hearing again. Never mind that their retirement savings are nearly gone, and full-time in-house care is barely able to meet their needs any more. She tried to get my grandfather brought home from the hospital when he was still unable to stand enough to move from a car to a wheelchair. We couldn’t have had the knowledge or equipment to get him out of the car and into the house, let alone to the bathroom, the dining table, or anywhere else. She’s developed selective hearing and selective memory. If someone tells her something she doesn’t like, she either doesn’t hear them (“my hearing aids aren’t working right now”) or phones another member of the family ten minutes later with a different version of the same story in an attempt to get the reaction she wants. It’s maddening. And we can never be sure of what she’s really forgotten, what she’s being manipulative about (and would best be called on the carpet for), and what’s genuinely mental decline. Aaargh.

I’ve come to the conclusion that when it starts getting tough for me to do the heavier house chores I’m moving into a retirement home immediately. I want to be good and comfortable there by the time I start needing daily assistance so that my family won’t have the burden of trying to convince me to move.

36

No. Not that specifically. He has an upcoming visit with a psych nurse. Honestly, he takes so many meds for his many problems that I would not be surprised if they are interfering with each other. And we have recently added one to calm him down some. He cannot keep acting out like this - it is not safe for the other residents and I don’t know any other place that will take him.

37

Both of my grandparents are, too. They can still run circles around me to this day.

My grandma was the sweetest person ever and is heading in the other direction. I don’t remember much from when I was a child and my great grandma lived with us, but apparently she did the same thing and in addition she was known to yell at my grandma and hit her.

Gah.

I have determined that I never wanted to have children because I am bipolar 2 and I never wanted to pass it along so if I have Alz, it’s going to stop with me. I honestly don’t think that I could handle knowing in advance whether I had early onset or typical. I’ve been through this twice (although I’m learning my memories of my great grandma are fewer than I suspected) and I honestly don’t think I’d be able to handle this sort of information about myself or my dad right now.

38

I’m reviving this thread, because it just seemed too much to dump in the MMP. I’m tired of posting depressing things in the MMP, and most of my depressing stuff comes from taking care of or dealing with my dad.

December was a bad month. Dad had a couple of episodes where he woke confused and anxious. He didn’t know where he was. He went upstairs and found my mom, and she determined that he kinda/sorta recognized her, but it took a couple of minutes for him to remember her name, and another hour or so for him to re-orient himself - remember where he lived, who his children were, and other major life details.

Yes, we could have taken him to the hospital, but to what point? He was clearly having a trans-ischemic attack. He’s on blood thinners and five categories of blood pressure medication. By the time they saw him, he probably would have been mostly recovered, and even if they did see him while he was symptomatic, there’s no way to treat the symptoms. All they can do is assess the damage. Which really wasn’t too hard too spot.

His short term memory is shot. He’s also become more resistant and hostile to me when I bring him his medications. The last time, he pretended to take them, and then hid them from me (it was late, he was in bed, I saw him empty the pills into his hand and take a sip of water, so I thought we were good). That probably precipitated the last event. Mom found the pills in their dish on his nightstand, untouched.

Between that, his unwillingness to answer questions I ask (“What would you like for lunch, Dad? Do you want a sandwich? Some soup? I could go get you a burger.”), his little “jokes” (“You should walk three steps behind me, since you’re my daughter.”), that he went out for lunch while I was cooking Christmas dinner, that he’s accused me of stealing money (which I found later in his change bowl), and that he can hear the exact same advice from a male relative and find it cogent, wise, and worthy to act upon when the same words from me are automatically dismissed. I finally get it.

It’s not just the dementia. It’s not just resorting to the gender roles and expectations of his childhood. It’s not just frustration with his loss of freedom or the fact that I make a handy target.

My dad does not like me. Personally, that is. He does not like who I am as a person, and if I weren’t his daughter, he’d probably have nothing to do with me. (Well, except, I suspect that if I were his waitress or health aide or anyone but his daughter, he could tolerate me.)

Case in point: he has a very old computer that he types his stories on. He is constantly messing something up and panicking. He’s rousted me from a dead sleep, or the middle of a shower, or a phone call with a friend, and I always go in, figure out what he did and fix it - usually with a CNTRL-Z. I’ve shown him the difference between INSERT and OVERWRITE about twenty times. He always forgets. Always. At the same time, he gets angry with me when I patiently explain and demonstrate what I did, and he gets angry with me if I tell him not to worry, just come get me if it misbehaves again.

This morning, Mom mentions that he made an appointment with a guy to come fix his computer. First I’d heard of it. Dad hadn’t said a thing to me. Apparently, his computer “is stuck on page 1”. What this means is that he opened his document, and it’s empty. If he’s lucky, he opened the wrong document, or he accidentally deleted the document contents, but hasn’t saved it, and a CTRL-Z will bring it back. I’ve done this for him about thirty times.

He invited over a guy he met at Applebee’s. To look at his computer. The one I fix five or six times a week. He would rather a complete stranger come into our home, take money from him, and maybe fix the problem than ask me, his daughter, for help.

Mom says it’s his loss of processing skills. I disagree. She says she talked to him and that he promised to be nicer. Well, he’s been marginally more polite and pleasant the past few days, but then, I’ve also gone into full avoidance mode, since Mom is home and can take care of him.

I don’t even know what I feel anymore. It’s like someone handed me an extra-large Gordian knot and said, “here are your emotions on the subject. Good luck.”

And you know, out of his six children, only I and my oldest half-sister spend any time with him, and she only does it on special occasions. My two brothers have as little to do as possible with him. My older half-brother has been downright hostile towards him. My other half-sister tolerates him, because her husband shares a hobby with Dad. I’m the one who fixes his medications, brings him his pills, goes to the grocery store, has taken him to the ER and run interference for him, fixes the tv settings when he fouls them up, and does any chore or odd job he needs if he just asks.

But, he doesn’t like me.

39

This. There are many kinds of dementia; Alzheimer’s is only one of them, the one that gets the most press. My mother had multi-infarct, which I believe is actually more common than Alzheimer’s.

She was fine till she had a stroke when she was 83, then it was six years of steady decline till she died: at-home nurses, then assisted living, then nursing home. As with Alzheimer’s, there is not a goddam thing you can do about it, just strap on your seat-belt and get ready for several years of candy-coated hell.

40

Yeah, Dad’s is vascular with probable multi-infarc behind the scenes.

Why can’t the strokes hit the brain stem and take out something vital? Why does it always seem to nibble away at the “I’m a human” part first?