Check-in list if you have a relative with Alzheimer's

Mundane Pointless Stuff I Must Share (MPSIMS)
#1

My mom, 82, was diagnosed about six months ago. Since the diagnosis, it’s amazing how quickly her mind has degenerated. A year ago she was driving, and now she is not allowed to drive. She is being cared for by my brother and sister, who live in her town, as I live 300 miles away. I of course knew that Alzheimer’s robs its victims of memory, but I sure had no idea that it causes delusions as well. Nowadays, she calls me in a panic about once a week, having imagined that some situation has happened to me, and no amount of reasoning will convince her that she didn’t imagine the whole thing, and she gets royally pissed if I try to argue her out of it. With the last phone call I just kind of humored her instead of arguing. This is going to become a real tangled web.

The delusions will get worse, won’t they? Any other caregivers who need to post?

#2

My mom was diagnosed in her early 60s. She passed away last October after declining for about nine years. My uncle, her brother, now has it, and was declining rapidly, but it seems some new drugs (name escapes me at the moment) have help slow the decline.

It’s the worst disease I can think of.

My mom also had bizarre delusions, hallucinations, and so forth. She wasn’t able to use the phone to call about them, but she would talk about them from time to time. Later on she would mutter constantly, usually profanity. It wasn’t unusual for her to be sitting quietly and then suddenly mutter, “Bastard, I’ll kill him!” It was difficult to figure out how much of a grip on things she had. She had always been very depressed all her life, and in the mid stages of the illness she would cry all the time and mutter about how she wanted to die. She’d alternate this with muttering about how she was going to kill everyone as well. Yeah, it was a little disturbing.

She had delusions about my dad having a whole other family with some other woman. She would tell stories about the time we painted our old house (we never did). She was terrified of things she couldn’t articulate.

It was a very harrowing experience and it was truly a blessing when she finally passed away. My father has since then become very active in Death With Dignity causes.

I wish you luck and strength.

#3

Ugh, I had a great Aunt who had it. It was the worst thing I’ve ever seen in my life. Though I do not really remember her before, when it got on she couldn’t do anything. That’s one of those repressed memories. My uncle though was there for her the entire time which was a good thing.

#4

I just found out my grandmother (she’s 75) was diagnosed last year. She and grandpa haven’t told anyone until now. They’ve kept it to themselves for almost a year, always dodging questions about how they were doing.

My paternal grandmother died from Alzheimer’s when I was 8, she was 73 I think. So now there’s Alzheimer’s on both sides of the family. They better figure out some good medication until I get old, cause with these genes, I’ll almost certainly get it too.

It just makes me so sad. And scared. I’ve always figured we’d have to worry about my father getting it, and now I have to worry about my mom too? It’s just too much, I can’t think straight. Three hours ago, I had no idea.

This sucks.

#5

My mom is 73 and has had Alzheimer’s for more than 10 years.

As far as I know, she didn’t have delusions. Or if she did, she didn’t verbalize them. She did show signs of anxiety and eventually became completely dissociated.

Dad took care of her for than eight years, but it became too much for him. She’s in a nursing home now.

#6

My father was diagnosed with the disease in 1994, I was a junior in high school. He died in 1999. I think I’ve lived through everything involved, driving, confusion, the home care, the transfer to assisted care when we could no longer keep him from wandering from the house, the time in a true nursing home, not being recognized. It’s a tough road, and anyone involved has my deepest sympathy.
Two things: These are the “good old days.” You will cry later when wishing things were as good now as they were then, no matter how hard today is, it will be worse later, so laugh at today, please, it’s not so bad. Also…
If you are involved on a day-to-day basis with someone, get some little cards made “Please pardon the behavior of my companion, she/he has alzheimer’s disease. For more infomation, see website or call phone number” He could really piss people off when the disease course was happening, but not apparent to strangers, yet. I seriously thought someone was going to get into a physical fight with my Dad a couple of times.
Jane

#7

My grandmother died of Alzheimer’s. She went through the delusions, the antagonistic behaviour, the catatonia, etc. She was cared for at home by my uncle until her death. That’s the most heroic thing I can imagine doing.

StG

#8

My grandfather developed Alzheimer’s after a stroke in 1991. He died in 1997. I never knew him even though he lived with me all those years.

#9

My grandmother had Alzhimer’s, although it wasn’t the primary cause of her death (other complications included diabetes, high blood pressure, and high blood cholesterol). With her, it was a long, slow decline: little bits of ‘her’ suddenly gone, then seeming remission, then those little bits gone again, that time for good. She thankfully didn’t have delusions until the end, but even they were relatively mild: more related to her being unable to keep events/time straight in her mind anymore, rather than paranoid/etc. episodes.

For advice… find the humor where and when you can. Take pictures. Get her to talk about older days, and record her voice. Be sure to keep in touch with your siblings, and compare notes. If there is any chance that you or your siblings will no longer be able to care for her (either she’s gotten too ill, they or you have gotten ill, etc.), look into alternative care now: don’t wait. If you find a really good place that has no problems with taking care of an Alzheimer’s patient (even if they decline in health), you may want to look into moving her into there even before it becomes a necessity. That way, she’ll have time to adjust to the situation, rather than running the risk of a very painful situation arising later. (Not to say it won’t be painful if you do it ‘early’, but it will be easier to manage.) (Also, this isn’t to put down those who were able to care for their relative/friend until the end: but more of the awareness that not everyone has the strength to do so, and it’s best to realize that before you’re burnt out and wind up regretting your actions during their last days.)

As for your question… yes, unfortunately, the chances are they will get worse, especially so if you’re already seeing a decline. New treatments and medications may help: look into the medical schools nearby, see if there’s a way you can get her into experimental treatment, especially if she isn’t responding to what’s already available.

Best of luck.

#10

My grandmother has it. She is my moms girlfriends mother and has never been anything other than a grandmother to myself and a great grandmother to my children.
And the good news is that she just came out of the closet a few weeks ago!
Married forever with six girls and she leans over to my moms girlfriend and tells her that she is a lesbian and now Vette knows where she gets if from.
She also points out good looking women to her now.
She hates my grandfather and won’t let him touch her. This bothers me and makes me wonder exactly what is going on in her head.
I guess grandpa used to abuse them all and when she started really going down hill he started again. Now she is in a nursing home.
She has acussed him of having a girlfriend and tells him on a daily basis that she hates him for what he did to her.
And she talks about a child they either lost or he made her give up.
How much of this could be the past comming out?
She has her good days and bad, but most of the time when grandpa isn’t around along with two of her daughters she is a riot and a joy to be around. When they show up look out.

My aunts have all decided not to tell her that their sister, my favorite Auntie Pam, has non hodgekins lymphoma and is in the last stages and will leave us soon.
The bad part is Auntie Pam feels bad for not going and visiting but she doesn’t want to stress grandma. Any advice?

I also think my husbands aunt is going through this but her children won’t let us in. As in the family affairs.
She called us not too long ago and told us that her car was stolen, and then she said someone bought it and towed it. He son said she wrecked it but never told us what he did with it.
She has also told us that she has had surgery but can’t remember what for and that they are taking her to a new doctor and he changed her medicines. She doesn’t know who he is or what the meds are for.
Should we contact local DHS or something? She is my mother in laws only remaining sibling.
MIL just lost her huband and brother within two days in December and then her brothers twin sister and a brother in law within a week a month ago.

Yes, my life is a soap opera.

#11

My grandmother has it. No delusions yet, but the person who was my grandmother has left. It’s sad, and it takes a lot out of you. My mother has done all she can and yet still feels guilty for not doing enough for her mother.

I just hope she dies peacefully and soon, before it gets much worse, as I’ve heard it can. I’ve already said my goodbye’s to her, which makes visiting hard :frowning: To me she is already dead, since the person I know has long gone, with no hint of her left, but my mother with her day-to-day care can’t see how I feel, and is sure that with enough care and ‘parenting’ her mother can function and be a mother still… I don’t argue about it, because I just don’t see the point, but it hurts to see what my mother is going through, and what may be to come.

It’s a cruel disease.

#12

My uncle was diagnosed with early-onset Alzheimers at age 45. He died last year at age 48. It hit so quickly, which is very indicative of early-onset. He left behind a 16-year old daughter whom he didn’t even know at the end.

My family is still recovering from this loss. Losing someone so young to a disease so horrible is indescribable.

#13

My grandmother has Alzheimer’s and she is now in a nursing home. She will turn 84 later this month. It all started two days before Christmas Day of 2000. She was in her kitchen and she fell and broke her hip and wound up in the hospital. It seemed that she had some beginning signs of Alzheimer’s before this. My grandfather (87 in July, still doing well) told us that he had seen the signs for quite some time and the rest of the family was also noticing things. On Thanksgiving that year she hardly spoke to anybody and didn’t eat much. She was talking about people and events that made no sense to us, and she was becoming forgetful of people’s names and places she had been to. It seemed that this accident with her hip breaking accelerated the onset of the Alzheimer’s. She was admitted to a nursing home. A couple weeks after having visited her in the hospital on New Year’s Day she was barely able to even recognize that we were there when we visited her at the nursing home for the first time. We were all thinking that she was ready to go soon. She had her meds changed and she has gotten better since. She seems happier and more alert and she has come to accept what has happened, whereas before she was down on everything and everyone, even threatening divorcing my grandfather after 63 years of marriage, which we knew she was just saying because of her condition. She still confuses things from time to time, but we can talk to her again as we did before. She was even brought over for Easter this year. Last weekend I joined my grandfather and we took her with us on a springtime drive to let her get out and see the places she hadn’t seen since being admitted to the nursing home. We hope to have her join the family on Mother’s Day.

#14

My grandmother’s husband was diagnosed several years ago; he became very violent and she and my mom put him in a nursing home. He died about six months later due to kidney failure… the last few dialysis treatments were awful because he kept yanking the needles out and trying to hit the techs.

My grandmother began declining after that, and within about 3-4 months she was diagnosed with Alzheimer’s as well (being so far away, I had the luxury of watching this from the outside- I’d been telling my mom for over a year and a half that something was wrong, but my mom didn’t believe me). She lived on her own for a little while, but once she got into the wandering stage that simply wasn’t possible. So she lives with my mom and dad now, has for the past year. My mom’s completely turned her life upside down (side rant: 'cause that’s what mom does… she’s the ultimate martyr); bought those special alarms to keep my grandmother from wandering out of the house, made a deal with my sister to where sis drives my grandmother to day care every weekday, put up with the confusion and yelling and crying and bed-wetting, basically stays home on the weekends 'cause it’s not like she can trust my grandmother alone for a few hours. My grandmother keeps asking where her children are, and my mom keeps having to tell her that she’s her daughter, and that her son is in X town. My grandmother never believes her.

I went to a family reunion this past August, and my grandmother had no clue who I was. No matter how many times we told her. I sat and had a lovely chat with her about how she goes to work every day, and the bosses are nice but some of the other workers don’t work as hard as they should. She asked me if I worked at the sewing factory, and I replied no, that I “kept books.” About three days after I left, she asked my mom “When is Bobkitty coming to visit? I haven’t seen her in a long time.” :frowning:

It’s a horrible, horrible disease.

-BK

#15

My grandfather had it for about 2 years before it finally killed him in 1999. The worst part was that physically he was one of those older guys you look at and say “Wow, I hope I am built like that when I’m old.” He walked, he was active, but his mind just wouldn’t keep up. The worst part for me was having a conversation and answering the same question 10 times. The whole time I knew what was going on, but he didn’t have any idea.

The ultimate frustration.

#16

My father was disgnosed three months ago. My family and I had suspected this for about a year. Mom is taking care of him with a whole lot of help from my sister and two older brothers who live in the same town. I visit whenever possible so I can help. It is a horrible disease. Dad has really gone downhill these past six months and I am afraid that it’s getting to the point of needing to put him in a nursing home. He’s on medication (Remembrex, I think) but it appears it isn’t helping much.
pugluvr thanks for starting this thread. It feels good to be able to post about my father and to read the posts of others who have loved ones with this awful disease.

#17

Thanks for posting, everyone. It helps to talk a little about it. Everyone’s posts help me feel a little less guilty about not being able to do anything to prevent mom’s decline. My living so far away aggravates the guilt, as I’m not there on a daily basis to help out. It’s a dreadful disease, but there’s just nothing you can do to stop it. I believe mom tried some of the new drugs that are supposed to slow the onset, but they made her feel sick so they were discontinued.

Yeah, Mullinator, my mom is at that stage. During each phone call with her, she’ll ask me for my phone number about ten times. She’ll write it down, forget it, and lose the paper. Next phone call, we go through it all again. She has also forgotten where I live and doesn’t recognize the words “San Francisco” anymore.

Wow, that early onset Alzheimer’s sounds vicious. I’M 45, for pete’s sake. At least with folks who get it when they are very elderly, they’ve had a full life. My mom beat cancer twice and has had a double bypass, and now this comes along.

#18

pugluvr, there isn’t anything you can do, but there is one thing. Say your goodbyes early. The nefarious thing about Alzheimers is that it essentially kills the person years before they actually die. So you see and interact with a person that looks like your loved one, but isn’t. You’ll never know when your “last conversation” with that person will be, because it’ll happen long before they actually pass away.

#19

My Dad has it. He is in the final stage of the disease, and has to live in a Care Facility now. He no longer recognizes me, and can’t really communicate any more.

I can no longer stand to go visit him.

I tell myself that the visits would have no value to him. That does not make me feel better about it.

My goal is to live 13 more years to see my kids out of High School. After that I hope one of my two medical conditions kills me.

I have a horror of ending up like my Dad.

Good luck.

–jack