As Tanookie mentioned both my father (55) and my grandfather (82) have been diagnosed with Alzheimers.
My grandfather is in the late stages right now - he is in a nursing home and can’t really do much on his own. We visited him last weekend and he didn’t recognize me at all - whenever I’d talk to him I’d just get a blank stare. Oddly enough - he did seem to remember my 2 year old daughter so she must have made a bigger impression on him - I know that my grandmother talked about her constantly.
I’d say that my father is in the middle stages - he can still do basic things but anything complicated is beyond him. He has trouble finding words much of the time and can barely find anything in the house. He can still get himself dressed but has to be reminded about basic hygene fairly often.
The thing I find the most depressing is how much they’ve lost - my grandfather was a printer and a musician his whole life. My father knew all about electronics and was a very technical guy. Both of them were good with construction - they could build just about anything. They each completely remodeled their entire houses over the years and did excellent work. Now for both of them that is all gone. My father who couldn’t sit still for a second (always needed a project to work on) spends his days watching TV and gets confused if the VCR isn’t setup exactly right. I expected this to hit eventually - but not for at least another 20 years or so.
With my father this has all happened within the last 2 to 3 years and he seems to be on a steady course downwards. I hate to think what things will be like in 5 years.
One of my greatest fears for both of them is that their bodies will hold out a long time. My grandfather has congestive heart failure but my father is more or less healthy. I hate to think of him sitting around for 20 years or so after his mind gets so bad that he is pretty much gone.
One of the most important (and hardest) things is to be patient. It gets very frustrating after he has asked the same question or made the same statement for the 10th time in 2 minutes.
What I find amazing is the way people change when they find out what is wrong with him. It seems that when people first run into him they are kind of wary trying to figure out what is wrong - but when they find out he has Alzheimers they attitude changes right away and they are very helpful. I think many people know someone that has it and they can sympathize. Luckily when he is out and has trouble he is open about telling people and asking for help - people have been very good to him.
My grandmother died of Alzheimer’s. At first her behavior seemed just erratic, but over the years it declined until we were no longer able to care for her and she moved into a care facility. There were alot of difficult times and frustrations but there were some good times too. My Grandma amazed me with her ability to recall music. She would flawlessly sing hymns and music popular during her youth even though she didn’t know what day it was. She could generally remember things from the earlier parts of her life but nothing about more recent events. Also, sometimes she said or did things that were really funny. We allowed ourselves to laugh without guilt, because it was a good tension reliever and Grandma didn’t realize why we were laughing. One thing I was absolutely not prepared for was her extreme reactions to what she thought was happening. At one point I had to stop visiting her because she thought I was my mother at a much younger age. They had a major falling out when my mother was a young adult, and my Grandma would start screaming at me and get very agitated if she even saw me walk by. It was actually a relief when this phase passed even though it meant that my Grandma didn’t recognize me at all. From my experience I would also recommend getting whatever help you need. Help from caregivers of various sorts over the years allowed us to enjoy our time with Grandma without the stress of her care taking over the relationship.
I agree wholeheartedly with the advice not to take what she says personally. Remember, she’s scared and confused. It’s very very very unlikely that she’s saying what she’s saying to deliberately hurt you. She’s just lashing out as a way of expressing her frustration and uncertainty. At work I try to console myself with the knowledge that when an Alzheimer’s patient says something incredibly cruel to me, in a few minutes they will have forgotten they said it and I should too.
Same with the repeated questions–they can definitely drive you nuts, but it’s just her way of trying to reassure herself. She needs to know who/what/where she is, so she keeps asking in an attempt to hold on to the answers. It’s kind of like if you told yourself “I can do this” over and over before a scary, difficult task.
As Alzheimer’s progresses it can become virtually impossible to reason with someone who’s convinced that, for example, they’re 30 years old and their brother is coming to pick them up for their job at the airplane factory. Trying to convince them otherwise will just make you both upset. The best you can hope to do is redirect them, and if that doesn’t work, just give them the easiest answer like a previous poster said. Tell them that yes, they can go home tomorrow, but we’re staying here tonight so let’s go get ready for dinner. I often half-jokingly say that I hope God forgives me for all the white lies I’ve told in an attempt to calm someone down.
Be prepared for what is called “catastrophic reactions”–she’ll flip out over a seemingly minor request or task. Again, this is an expression of fear and frustration. Remember the three r’s—remove what’s upsetting her, reassure her, and redirect her.
I’m probably wearing out my welcome in this thread by now so I’ll close by saying don’t hesitate to ask for help wherever you can get it, up to and including a nursing home. The time will come when you have to ask yourself if you’re really giving her a better quality of life by keeping her at home.
I lost my dad to Alzheimers. Not a day goes by now that I don’t miss him. The worst part was that for the last 5 years or so of his life he did not know who I was. Not his fault I know, but it still brings tears to my eyes. This is one of the reaons I hug my children every chance I get.
My sister took care of him for the last 10 years of his life. If the church ever starts taking nominations, I’m putting her in for sainthood.
Anyway ask for help, ask early ask often.
Do lots of research on the net, there are new discoveries every day, maybe one of those will help.
I’m not sure, but my sister and I have developed a plan if we think we are getting it.
[ol]
[li]Rob a bank[/li][li]rob a post office[/li][li]steal a postal truck[/li][li]kipnap a minor [/li][li]drive minor across the nearest state line[/li][/ol]
All of these are federal beefs, and there are enough of them, they can’t just say “well he/she is old we can forget about it.”
So you will get thrown into the federal pen, once the alzheimer’s kicks in you won’t know the difference between that and the Ritz Carlton. Three hots and a cot, at no charge to the family.
My dad died of Early-Onset Alzheimers at the age of 62 (I was 29) - he had it for more than 10 years that I know of - his workmates used to cover for him in the early days, and we thought he was just stressed out from work.
My mum looked after him as long as she was able but eventually this was too much for her and he moved to an assisted-care facility nearby.
He recognised me a little longer than my mum & sister but the last couple of years were very hard. The mood swings were the worst - he would get very angry and as he was a fit and healthy guy (other than the Alzheimers) he actually injured a couple of nurses.
My advice would be to enjoy every day you have left with your grandmother, and keep a sense of humor - sometimes the things Alzheimers patients do can be quite funny and laughter can help ease the tension a lot.
As other posters have said - don’t take it personally. Make sure you and your family ask for support (you will need it) and find out about any help (such as respite care) that may be offered in your town.
I miss my Dad and I am angry that this awful disease took him away so young…
Thanks, everybody, for the advice and stories so far. It just helps to know that there are other people who have gone through this, you know?
Right now at least half the family, probably more, is unwilling to even hear the words “nursing home” or “assisted living”. Grandma has 8 kids, and they’re all in various stages of acceptance. Some are fully on board with “Yes, let’s at least check out the options locally as far as full-time care” and some are still saying, “She’s just getting old, it’s normal memory problems, why are the rest of you so upset about this?” (The latter comes from people who don’t visit her that often.)
In the meantime we’re doing the once-a-week make dinner for my grandparents thing, which honestly I think mostly just makes people feel like they’re doing something helpful, and gets people’s butts up to my grandparents’ house to give my grandpa a break from constantly dealing with my grandma. Mom took Grandma to her weekly choir practice last night (the choir members are all aware of Grandma’s condition and are supportive of her continuing to go to practice as long as she can, which may not be long at this point) and told me afterward that the whole time, Grandma only talked about the various hallucinations she was seeing. She saw crowds of people, she saw a construction site (in the choir loft?!), she saw a HORSE (ditto), and so forth. Mom said it was pretty tiring but she just kept agreeing with her and that seemed to make her happy. (“Yes, that does look like an interesting horse. Anyway, here’s where we are in the music…”)
Rick, I like your thinking, and will be sharing your plan with my siblings the next time I see them. At least maybe we’ll all get a good laugh out of it.
I worked in long term care for 10 years, I was in the kitchen most of time, but I still got out and made friends with quite a few “old” folks. I’ve only dealt with one family member that went that route, but I was younger and it didn’t have a signifigant impact on me as far is this thread is concerned (I was too young). Most of my expierience comes from my mom who has been a nurse for going on 30 years now. For the past 10 years she has worked on an Alzheimers unit, state run, that deals only with THE( they must be rejecterd by 3 standard nursing homes to be accepted) most troubled alzheimers. Once they leave where she is they either have other problems phyically that make them manageable or they go to the little rubber rooms out East(It does happen).
Anyways, in her and my limitied expierience, It sucks. From what I’ve heard from my mother is that the hardest part is the fact that most family members can not accept the fact that “MOM” is not “MOM” anymore. “MOM” will now do wierd things, beat up Esther across the hall, Try picking the roses in the carpet, Pee in the corner, make sexual advance to the guy sweeping the floor, masturbate with the toilet plunger, really crappy stuff. As JSGODDESS said don’t take it personally, it is not their fault. However I take a HUGE exception to not visiting them. For some wierd reason, people with alzheimers (I almost said simply “they”, but it didn’t seem right) seem to know who “belongs to them”. They may seem confused when you, as a family member are there, they are (they have alzheimers). I think, that what seems to frustrate them so much is that they know they should know, but they don’t, have you ever had something stupid on the tip of your tongue, drives you nuts right, well imagine your son standing in front of you, you KNOW its important, you KNOW this person has been in your life for a long time, you just CAN’T remember where you know this person from, you just know that you should. This affected person may seem agitated while you (grandson, etc…) are there, but afterwards, they are just happy that someone familiar (somehow) was there.
Its wierd, it sucks, hey, I don’t know, it just sucks, but I do believe that they actually have a clue who you (family member) are, they may not act the same. But if they really don’t know who you are, at least they made a new friend.
My grandmother, for the last three years of her life, had to be restrained and sedated if she had visitors. She ended up on strong anti-psychotics and at a specialized facility. Yes, she probably did recognize her family at some level (she didn’t have such severe reactions under most other circumstances), but that recognition wasn’t something I’d wish on anyone.
Just offering the other side of the visit/not-visit coin.
I’ve been caring for my parents for three years - my dad will be 81 next month, and I’m beginning to wonder if he isn’t developing dementia of some sort. I took him to the doctor today (he had a hip replacement a few years ago and it’s not “right”) he was telling the doctor he’d seen the consultant not that long ago, sometime this year, and not only had he seen that consultant, he’d seen another consultant at the same time and they were both talking over each other. The GP wouldn’t look at me (I was shaking my head - “meaning no he hasn’t”), and seems to be under the impression that Dad has seen the “hip” doctor a few weeks ago. This isn’t the first time he’s rambled on about something that never happened (I know it hasn’t because he’s housebound, if he goes anywhere I have to take him in his wheelchair or the car). He’s also taken to asking “did the cat come back in yet?” the cat is 16 y/o and doesn’t go out any more …
