Early Alzheimers

Factual Questions
1

I did a quick search and saw very few mentions of people dealing with family with early Alzheimer’s (younger than 70), so I’m hoping to get a little more input here.

We had always joked about MIL being Edith Bunker. For years she was notorious for throwing out cordless phones and remotes or leaving her reading glasses at people’s houses. She put a paycheck in the garbage and left shells in the scrambled eggs. A sweet lady but a real dingbat.

Last year we suggested that she get tested for Alzheimer’s because it seemed like she was slipping more. She told us that she was OK. She was lying.

Her GP did some tests, sent her to a psychiatrist for more tests and they confirmed that she has AD. They put her on Aricept and she seemed to do OK.

Last week she finally came clean to us that she has AD. She is 65, active and healthy in all other respects. She told us that in the past year she has done nothing else besides take the Aricept: she hasn’t gone to a neurologist, has had no further testing done, hasn’t talked to a support group, lawyer or financial planner. Nothing.

My wife and I have told her we will work with her and get her set up with all of the people she needs. We are taking her to a caregivers meeting this Sunday for first stage AD. We have also told her that, when the time comes, she is moving in with us (my FIL barely tolerates her now and he will only get worse as she does).

My question to the Dopers is, what do we have to look forward to :dubious: as this progresses? It’s bad enough when you are watching an 80+ year old slide downhill because you expect the elderly to become senile and out of touch. But what will we see with a 65 year old woman who loves to travel and read and go to concerts? She walks the dog a couple miles every day and is very active. What kinds of signs should we watch out for? And, not to be too morbid, how long (or short) will she have?

What kinds of planning should we do? I know she needs to take care of her finances (pension, stocks, personal savings), power of attorney, living will, regular will (she has a lot of expensive jewelry, crystal and artwork), health care planning, potential nursing care when we can no longer provide the kind of care she will need in our house, even with assistance. Anything else we need to take care of while she is still cognizant?

Thanks for your help.

2

You might want to have this moved to IMHO because the factucal answers need to come from the doctors. To put it bluntly, Alzheimer’s is among the worst ways to die IMHO but it can take a while (years or much more). One mental process after another slips until the body is there but the person is not. At the end, people with Alzheimer’s often can’t recognize family members, even their own children, can get lost in their own house, and lose control over their own body functions. They can also be belligerant and abusive to family and caretakers sometimes saying very inappropriate things (like sexual or horribly abusive in nature). It often takes some time to get to that point and you may not be able to keep her at your home the entire time at least not without live-in care.

My BIL (who oddly is almost 40 years older than me and in his early 70’s) has started the downward slide into Alzheimer’s. He is about to lose his ability to drive which is devastating to him and he still has enough of his facilities left to know what is going to happen. He has a 13 year old daughter sadly enough too.

My sympathies for you and your wife. Maybe modern medicine can blunt the blows enough to make things more bearable.

3

I echo the above.

My mom started going going downhill fast at maybe 70. Just a little ditzy at first, progressively worse. My dad swore up and down that he’d take care of her until the end, he lasted almost 5 years and nearly killed him. Towards the end she (aside from ALL the symptoms addressed above) wouldn’t get out of her favorite chair to do bodily functions and it was almost impossible to move her without her screaming like we were killing her.

In the end, she didn’t know us. She became very belligerent and even combative. The only thing that would calm her down was my little dog. She always loved that dog and seeing it would usually put her in a calm state.

Dad finally put her in a home, she lived 2 months after being placed there. I’ll never forget how she kept screaming, wailing “No!!” while they were loading her up to go to the nursing home. We couldn’t really tell how much she could comprehend, it sure seemed like she knew she was leaving home for good. Died 5 years ago this month.

A neighbor’s wife survied 9 years in the nursing home after he was no longer able to care for her. In retrospect, our 2 months was a blessing.

4

My grandmother lasted a couple years after getting the the non-verbal/not recognizing family members stage. And my uncle and his wife, her son, cared for her at their home until her death. She went through a progression of paranoia, then hearing and seeing things, then belligerent (at this point, the belligerence with the paranoia made it hard to get her to take her meds, because she thought people were trying to poison her). She stopped recognizing family members, then stopped talking at all. She’d sit in her chair and cry for hours. It’s horrible.

One of my aunts was diagnosed this year with a frontal lobe dementia. I have no idea how her family will cope, because she’s been the caregiver in the family.

StG

5

My father, a very intelligent and creative man, began acting a little “befuddled” around the age of 70. Within a couple years, he was diagnosed with Alzheimer’s. My mother took care of him singlehandedly, which of course took a tremendous toll on her health. He lasted till the age of 81.

The important thing is to avail yourselves of all the support and resources out there. Don’t try to be martyrs and do everything yourself. There will be times when you’ll have to watch your MIL, to prevent her from doing dangerous things, like cooking and driving. For us, the most difficult thing was to get my father to stop driving. He’d become very angry at the suggestion. Finally, his doctor told him that he shouldn’t drive “for a couple months.” That’s all it took. My mother also had to keep the doors locked, to prevent him from wandering away.

Just be prepared for a lot of heartbreak, seeing the person you’ve always known just gradually slip away. I agree, it’s the worst way to go. Good luck.

6

First, my heart goes out to you.

No matter how hard you try, there will come a time when you no longer can care for her yourself. She will need professional help 24/7.
There are special homes for patients with Alzheimers. It’s been my experience that these homes usually have waiting lists, so it might be a good ieda to start looking into them now.

In the meantime there are things you might start into motion. Consider looking into a living will. And at some point someone in your family will need durable power of attorney.

IANAL, so please consult your family attorney about this.

And the driving part…yes, that was one of the hardest.

Good luck and God Bless.

7

My aunt doesn’t have Alzheimers but is failing mentally. From my own experience, please get all her legal affairs - will, power of attorney, etc - sorted while she is still reasonably compos mentis. And get what in the U.K. is called the protection of the court for her so that evil lawyers or care home staff can’t bugger with them.

8

My Sister, age 80, has alzheimers. I live in Colombia and she in California. She used to write to me at least once a week by email, but now, I never receive anything from her. Sometimes, she calls me and says that she was looking in her address book and found my name, so she calls me. Sometimes she looks in her address book several times during the day and so she calls me several times in the same day and doesn’t remember her other calls. It is so sad for me to realize that she is sick with alzheimers. I think her husband ignores her a lot. My nieces say that she doesn’t even know them anymore.

9

My father was diagnosed with Alzheimers in his early 50’s - he died after a few years in a nursing home at the age of 62. Some of the early signs of problems involved mood swings, which were very hard to take at first - someone who is normally loving and kind can just turn on you for no reason. Obviously, it’s not personal but it’s hard not to think that.

I have to echo the previous posters - take all of the help you can get - there’s probably going to be a support group or association out there to offer help. Don’t let yourselves get run down physically. Any kind of respite is a godsend. Physical activity is great - walking the dog (or any exercise) will be really beneficial for your MIL. Get all of the legal paperwork squared away now while she is still able, it is important that you have the authority (particularly if your FIL isn’t going to get involved) to direct what happens to her care and assets.
There will probably come a time that you can no longer care for her on your own and she will have to go into a nursing home. The guilt was intense for my mother, but realistically it was the only way. Please don’t (metaphorically) beat yourselves up about the decision if and when the day comes, you have to preserve the quality of life for everyone in the family.

You have a hard road ahead. Good luck.

10

I feel for you, erie774.
I’m taking care of my grandmother now. I’m her caregiver, and she lives with us.
She is 91, so I really can’t be of much help with anything regarding a younger person having AD.
I just know that it is a difficult thing to do…taking care of someone with AD, every day and every night, no matter what their age is.
When we go somewhere for the day, I must call in someone to stay with her.
You have to get out and have time for yourself and your family, so remember that.
It doesn’t make you a ‘bad person’ to take time to spend with your family when you are a caregiver.
Remember that.

You’ll get the hang of it, as it won’t take you and your family very long to get into the routine, but it might possibly be rather difficult for her.
AD patients don’t do real well in an environment that isn’t their own, right away.
Meaning, the place that they have lived in for years, then moving to a new place…even though she may be well aware of your home and your family right now, as time goes on, she’ll sort of ‘forget’ all that stuff, and she may be quite uncomfortable in her new surroundings.
But, it’ll work itself out eventually.
She’ll get used to all the ‘new’ faces and sounds of her new home.

Just remember to be patient.
Being patient is the key.
I didn’t think I could EVER be as patient as I am now, but I learned to be.

I just hope that when/if my turn to get AD rolls around, I have someone that really cares about me, to handle me and my situation when I’m no longer able.

It’s not at all easy.
It’s tough.
Very tough.
But, it can be handled, and handled quite well.
You should be proud of what you are doing.
Lots of people just ship off their aged loved ones to a nursing home, or some other care facility.
It takes guts to do this on your own!

Godspeed, erie774!

11

This wasn’t Alzheimer’s, but my mother-in-law (mid-70s in age) has mild to moderate dementia brought on by a number of health-related conditions. When she was admitted to the hospital because of a major heart attack and need for stents in three major blood vessels around her heart, she was really out of it, far more than anyone had ever seen her (the nurses thought it was what they called “hospital dementia”); she thought she was at home and would pull at the IV to get it out, she tried to leave the room to fix dinner, and nothing you said would tell her otherwise. She got really mad at us for not allowing her to go out. We finally had to leave her for the night, and when we returned the next day, we were told that it took 4 staff members to restrain her when she figured out they weren’t going to let her leave. So even a frail-looking woman with major health problems can put up a hell of a fight if her delusions about the situation make her think she’s in danger.

Best of luck to everyone in this situation, and my sympathy.

12

Hubby’s stepfather’s parents were very hale & hearty folks physically, but both went down fast mentally due to AD. It made it so hard, because they lived for years with it. Like a decade or longer. And they were in their 60’s when it hit.

It was harrowing for my MIL and her husband. The former FIL has asked to be shot when he develops AD (he wasn’t really kidding, either).

I have to second? third? tenth? the suggestion of some sort of power of attorney for personal, medical, etc. Do it right now, just in case some disgruntled family member later wants to claim that you waited until she was addled & forced or tricked her into signing something funky and that’s why they don’t get a say in what happens… :rolleyes: I know, but it seems to happen in families a lot.

13

My grandmother died of Alzheimer’s. IIRC It hit her in her sixties and she hung on for twenty or so years.

My father got hit in his seventies. Luckily, his physical health was so bad that he died while still relatively mentally sharp. Had he been in better physical health, I would have sat him down and convinced him he had AD and of what to do about it. Then we would have all gone for a meal at his favorite restaurant. Full of Chinese food and feeling loved, dad would go home and kill himself- making it look like an accident so that the insurance paid off.

I’m 32. If, in my senior years, I think I’ve got Alzheimer’s I will take my own life. I haven’t discussed it with my sister, but my gut tells me she feels the same way.

14

My aunt was diagnosed with Alzheimers a couple years ago, she’s 70 now and the disease has progressed quickly. It’s likely that it went undiagnosed for a few years since it has progressed so quick.

They have a caregiver (very expensive) while my uncle is at work and then he takes care for her the rest of the day. I’m thinking that it’s quite a bit harder to handle someone that’s young (50-70 years old) and has Alzheimers than an older person since they may still be physically strong. My aunt hits him and has screamed for help in public saying that he was trying to kill her-- it’s horrible to see. They had to install special locks on the doors because she runs away if she’s alone for more than a couple minutes. She managed to get out of the house the other day and the cops found her several hours later and about 6 miles from her home.

I’m not sure what medication she’s on. It makes her a lot less combative though… unfortuantely it wears off after a few hours and she’s back to being confused and combative.

The whole thing has taken quite a toll on my uncle, who looks worse everytime I see him-- and I don’t think he knows what to do anymore… I honestly think it’s killing him.

Best of luck…