Alzheimer's - how to deal?

[Alaerian]

I've been facing a pretty tough situation here recently. I knew it was coming, but I chose to ignore it instead of prepare.

My grandmother was very important to me growing up. She painted, cross-stitched, made Christmas ornaments, and always involved her grandchildren (4 of us) in anything she could. She told stories, had a wonderful laugh, and was meticulously organized in her own spastic way. She had eccentric tastes and had so much joy in what she did.

My grandmother was diagnosed 10-ish years ago with the beginning stages of Alzheimer's Disease. Up until approximately about a year ago, she was still herself, but with a progressively diminishing memory. Nothing else was different. For the past year, she's gone downhill very quickly ... until just 2 months ago. Something sparked or misfired in her brain, and she's gone.

Two months ago, my grandfather noticed that she was listing to one side and very unstable on her feet. She fell carrying laundry and was subsequently taken to the Emergency Room via 911. Her primary care physician had her admitted inpatient - by doing this, it ensured that admittance to a nursing home was medically necessary and enabled us to seek aid from Medicare. After her 3 days in the hospital, we swiftly moved her into a nursing home where she has been able to transition into the dedicated Alzheimer's wing.

I've gone and seen her a couple of times, and I knew that she was different. She could remember who we were, but not our names. She was still her happy-go-lucky self, but fairly alloof. However, we brought her home for a few hours on Thursday so we could all enjoy Thanksgiving together. She was speaking in "almost gibberish," and saying things that made absolutely no sense. I remember hearing "Did you order the boxes?" at one point. She did know Alex, her 3 year old grandson. He was almost the only reason she smiled.

I'm 29 years old, and this is by far the scariest thing I've ever dealt with in my entire existence. I have never had a close family member die, and all of my grandparents are still with us. I don't know what to do, or how to make this any less scary. Is there anything that anybody can tell me from experience? I just want to know how I can cope with this, because I don't think I can even get myself up to the nursing home now to see her.

 

[MacDawg]

My heart goes out to you in this situation. I never had to face it having lost both my parents young (64 and 58). Hopefully you will be able to draw on the strength of other family members and friends. At times like these, you will all need to support one another.

 

[rdowns]

Your story sounds so similar to mine. I feel for you. My grandmother lived until she was 96, 6 years after she lost her memory.

I don't know what was going on inside her head, but she did smile when we visited and seemed especially happy when my brother brought his kids.

Your grandmother will light up when you go see her. Nursing homes suck and are not nice places be but go see her. For both of you.

 

[Thomas Veil]

I feel for you. We took in my mother-in-law for about nine years when it was clear she was starting to lose her memory. She was a delightful woman and was able to take care of herself for the most part, but there were a lot of things you had to put up with, from the obvious minor things such as having to repeat what that you just told her two minutes ago (and two minutes before that), to her waking us up in the middle of the night asking to be "taken home" (to her village in Europe, where she hadn't lived in fifty years). There were times when she thought her daughter (my wife) was her sister, because she just didn't know.

Cancer took her before the ALZ could finish the job, and although that was a faster way for her to go, it was also a lot uglier.

The things your grandma is saying aren't necessarily gibberish, they're probably old memories that are coming to the fore because her mind is just so scrambled. Just be there for her if you can, especially if she still has any lucid moments. You really can't make this any less scary; you can only steel yourself for it.

 

[iJohnHenry]

She may be "gone", but you can still brighten her day by visiting.

Please don't attempt to have her remember you, or anyone else.

If she asks, just say you are a friendly visitor inquiring as to her health, etc.

And good luck. Not everyone can do this simple thing.

 

[Alaerian]

The things your grandma is saying aren't necessarily gibberish, they're probably old memories that are coming to the fore because her mind is just so scrambled.

That's the just thing - it actually IS gibberish. Completely nonsensical and nonexistent words. It's not just saying things that don't make sense (like "Did you order the boxes?"), but actually nonsense (think "soiej oiwefwopo opwiefjowei"). I don't know if that even makes a difference.

She may be "gone", but you can still brighten her day by visiting.
Please don't attempt to have her remember you, or anyone else.
If she asks, just say you are a friendly visitor inquiring as to her health, etc.

And this is exactly what I don't think I can handle. I know she would smile and enjoy having a visit with somebody for half an hour, but she'd forget all about it 20 minutes later and not remember that anyone was there. I know this isn't uncommon. I'm just not sure I can handle this -- I will remember it in 20 minutes, in 20 hours, in 20 days.

I know this is something I need to do and need to deal with, I just don't know how.

 

[Rt&Dzine]

And this is exactly what I don't think I can handle. I know she would smile and enjoy having a visit with somebody for half an hour, but she'd forget all about it 20 minutes later and not remember that anyone was there. I know this isn't uncommon. I'm just not sure I can handle this -- I will remember it in 20 minutes, in 20 hours, in 20 days.

I know this is something I need to do and need to deal with, I just don't know how.

Could you handle the guilt you'd feel after she's gone if you don't visit her? This situation is temporary, but that guilt would be forever.

 

[iJohnHenry]

I know this is something I need to do and need to deal with, I just don't know how.

Which is why I said "good luck".

I remember "sitting" my paternal Grand Mother one Saturday afternoon, in my late teens.

She didn't know who I was, but told fascinating, detailed stories about when she was 17. I still have that with me.

 

[Alaerian]

Could you handle the guilt you'd feel after she's gone if you don't visit her? This situation is temporary, but that guilt would be forever.

This may have been what I needed to hear.

She didn't know who I was, but told fascinating, detailed stories about when she was 17. I still have that with me.

She seems much worse than when I visited her with my dad a few weeks ago, and she wouldn't have been able to do this then, let alone now. Anything you or anyone else could suggest that would be pleasant for her to do while I sit with her? Just talking and telling her about me and what I've been doing?

Edit:
A recent picture of her. Just because even though she's not herself anymore, I still think she's beautiful and wonderful. This is a few days after my cousin's wedding, which she was unable to attend. We went up to see her and found that she was wearing the flower that Katie (my cousin) had made just for her.

 

[iJohnHenry]

That sounds good, and respond if she shows interest in something.

And hold her hand, if she will let you.

 

[r1ch4rd]

Could you handle the guilt you'd feel after she's gone if you don't visit her? This situation is temporary, but that guilt would be forever.

It's not quite the same, but when I was a teenager my Granddad was really ill and had been in and out of hospital with heart problems. One afternoon he wanted some help with gardening and mowing the lawn. Being young I almost very foolishly passed up the opportunity to go help, but thankfully my Mum made me go. We had a great afternoon and it was a really beautiful day. He died four hours after we left. I would really regret not having gone to see him that day. It still chokes me up writing this now (it must have been 12 years ago) - I don't know how I would feel if I had stayed home. Don't miss the opportunity while you still have it!

 

[The.316]

My grandmother had it too. My mom, Barbara is her name, would go visit her, and she would tell my mother, "Say hi to Barbara for me." It sucks, but its a part of life. Everyone deals with things in their own way, and Im sure you will figure that out. Good luck with everything, and sorry about the pain this definitely causes.

 

[kurt4330]

Alzheimer's - how to deal with it when she forgets?

Okay, my mother in law is showing signs of memory loss and we are not sure how to deal with when we tell her something 10 minutes ago and then she forgets. SHould we pretend we didnt tell her or should we say "we just told you"! my wife and i have different ideas on this and we need to know how to deal with it??

Thanks for any help!

Kurt

 

[snberk103]

... she'd forget all about it 20 minutes later and not remember that anyone was there. I know this isn't uncommon. I'm just not sure I can handle this -- I will remember it in 20 minutes, in 20 hours, in 20 days.

I know this is something I need to do and need to deal with, I just don't know how.

In 20 days it will still be an uncomfortable memory, however in 20 years you will be really glad that took the time to visit, and that you made effort to overcome your unease/unhappiness at the situation. Some things just need time to be seen in context.

There are many support groups for family members. Even just knowing that there is group you could call may help.

Good Luck. Tough place to be in, but the fact that you visiting and pushing past your fears seems to be a good sign.

 

[barkomatic]

That's the just thing - it actually IS gibberish. Completely nonsensical and nonexistent words. It's not just saying things that don't make sense (like "Did you order the boxes?"), but actually nonsense (think "soiej oiwefwopo opwiefjowei"). I don't know if that even makes a difference.

Well, its not really gibberish. Everything that she says makes sense in a certain time and place--its just her time and place no longer matches the rest of the world she is in.

One thing that strikes me is that a few posters noticed that relatives suffering from this disease become happy when children/grandchildren enter the room. I'm not sure what meaning that holds, but its interesting.

In any case, I'm sorry you have to go through this OP. She still loves you and is fortunate to have family like you to take care of her and visit. You're doing everything you can.

 

[ErikCLDR]

I'm sincerely sorry to hear about your situation. My Grandmother was also diagnosed with dementia/Alzheimer's. She had the disease seriously for the last 4 or 5 years of her life, she died at 89. My grandfathers death really seemed to trigger it (they were married for over 50 years).

I completely relate to your situation. As a teenager it was unbearable to think that your Grandmother had forgotten who you were, or where she was, who your parents were, etc. By the end of her life she was very often confused and it was difficult for her to hold a conversation but she did her best. In my opinion, seeing her in her condition was worse than attending her funeral.

I find comfort in the fact that whenever we visited in the nursing home she was always happy. Even though she didn't always know who we were, she knew that we cared for her. She didn't always know where she was, but she made comments about how nice the decor was or how nice the weather was. She was often asleep and would awake when we came. She would tell us that she just got back from a trip to italy or other foreign country (her and my grandfather traveled the world), or that she had just had lunch with her mother, or that she was going to go shopping (with a long deceased) friend. It was almost beautiful, that happy memories from her past had somehow made there way to her perception of present life.

It's hard for us to imagine life with Alzheimer's, but in the case of my grandmother, it was at least relieving to see that she could relive her best memories and not necessarily have to think about friends or family she had lost along the way.

It's not an easy thing to accept, you just have to find whatever good you can in it. That's life isn't it? Whether my Grandma was living in the present or past, whether I was me or my dad or my uncle that day, being there for her made her happy. My suggestion, just be there for her whether you're her grandson/daughter or just a stranger that day. It's the best you can do. She'll know you care.

 

[Alaerian]

Wow, what a pleasant surprise to have this thread dug back up. No, seriously - thank you!

It's nice that amongst all the absolutely ignorant people that other parts of this forum are home to, there still exist some pretty awesome people in the Community section.

Thank you for the advice, stories, and comfort.

 

[Tomorrow]

I lost my grandmother to Alzheimer's several years ago. I'm sorry you're going through this.

Stay strong for yourself, and be a friendly face and voice for her. I wish you the best.

 

[rumbletum]

Okay, my mother in law is showing signs of memory loss and we are not sure how to deal with when we tell her something 10 minutes ago and then she forgets. SHould we pretend we didnt tell her or should we say "we just told you"! my wife and i have different ideas on this and we need to know how to deal with it??

Thanks for any help!

Kurt

My grandmother who died in 1989 suffered from alzheimers, and I also worked in a care home for elderly mentally ill for about 5 years until 2006, the general rule of thought was that you shouldn't say things like 'we just told you' or tell people theyre wrong etc, as all this does is cause distress for the person, they never suddenly say 'oh yes, so you did', its just makes them frustrated and upset, which helps nothing.

 

[ApplFTW]

I lost my grandma a year ago coming up this march. She had dementia and was getting pretty bad. It's definitely tougher on you than it is the person in that state of mind. I hated going to visit the nursing home, knowing in my mind that it's a place for death. However I would have felt guiltier not going to visit.

Your grandma will have high months and low months in terms of how her overall health is and she'll eventually get worse so just be prepared for that. I was with my grandma the night she passed away and was happy that most of the close family could be there.

I know how you feel though, she was the first real close family member I lost. Just remember all the good times you have had with her, and show support for her. Best advice I can give.