My mom has Alzheimer's. What should I know?

[Alicia64]

I'm in Atlanta and my parents are in CA. My sister lives near them so they have help.

But can you share your biggest takeaway if you've experienced a loved one with Alzheimer's? Just a sentence or two would be great.

My mom is only 77 -- became obvious at 76 -- and this is hitting much earlier than expected. Her mom had dementia, but it didn't really get hold until she was 82 or so.

My dad is taking care of my mom which is a total reversal to what everyone -- including my mom -- thought would happen.

I'm not that emotionally close to my parents, but I'm trying to be as supportive as possible.

Thank you,

Wendy

[BlsdMama]

I think one important thing to know is the clinical diagnosis.  That sounds odd, but my family used the term Alzheimers for dementia for her and I didn't find out until later that it wasn't.  It was Frontotemporal Dementia and it was *very* different in that it moved far faster.  Also, failing to know this, didn't give us a clear timeframe or expectation.  Personally, I really *needed* this information because ALS and FTD are linked.  So, you said you are not near.  If possible, I'd want to see those clinical notes rather than having them passed by word of mouth.  

I only discovered this by piecing things together - "Alzheimers in the FRONT of her brain" means what exactly? And kept pushing, asking....

I'm not much use other than that, but felt it was an important aside.  Discard if it is not useful to you.

[prairiewindmomma]

And likewise Lewy Body dementia can look very different also. The hallucinations angle of things was difficult to wrap around initially.

My best .02 is to not completely wear out the spouse. IME they will resist change and sometimes allow/enable/encourage a not healthy caregiving situation to go on for too long.

[Storygirl]

I'm sorry. We just lost my mom after a 15 year battle with Alzheimer's, so I have things to share, but not yet. I'm posting here as a reminder to return and respond at another time.

[Alicia64]

Just now, Storygirl said:

I'm sorry. We just lost my mom after a 15 year battle with Alzheimer's, so I have things to share, but not yet. I'm posting here as a reminder to return and respond at another time.

Thank you. I'm so, so sorry about your mom.

Wendy

[Innisfree]

Your father and your sister will need more help than you can see from a distance. Being the caregiver is incredibly wearing. If you can, I would go there as often as possible, for as long as possible, and give them significant breaks. Also, you'll just understand more if you are in person seeing what it's like. They need you to understand that. My brother was never around enough to see, and it affected our relationship.

If you can't be there, any other form of support is good: financial, or something you can do online from a distance to help out. If your sister has young kids and she's juggling what her parents need with what her kids need, that's really hard, so maybe some way to help with that. But try to be involved. 

[Katy]

Get a copy of The 36 Hour Day. Maybe the paper & audiobook. Consider getting them for your dad & sister too. 

[gardenmom5]

I dealt with dementia, not alzheimer's.

a friend said her mother never talked about her childhood.   As her mind went, those were the only memories she had.  And in such detail it was as if that's where she was.  the recorded as much as they could.

I know it really varies according to what part of the brain is affected.  a friend dealt with both her parents (at different times.).  her father eventually stopped recognizing her mom (his wife of 50+ years), and would tell her he was married and he needed to be with his wife.  That was easier than one I observed in an ER waiting room.  The woman was absolutely vile in the way she spoke to her son, who was her caretaker. 

don't take things personally.  A friend recently posted the following:

[PeterPan]

1 hour ago, BlsdMama said:

It was Frontotemporal Dementia

That's really interesting. I was just reading about this. There's a striking resemblance between FTD and ASD. I didn't realize there was also a link with ALS.

For op, with my grandma they kept a notebook and anyone who came to visit her wrote in the notebook. She could review and guests could us it to talk about her week with her and make conversation. She retained her ability to read books for some time. She enjoyed continuing to have her things with her. Like the others are saying, she went back deeper into her childhood, forgetting much of the more recent. She talked about a dog from her childhood so much that they got her a stuffed version, which seemed to comfort her. 

[Jean in Newcastle]

Get documents like Medical Power of Attorney etc sorted out now even though it doesn’t seem necessary yet. For both parents. This doesn’t mean that people take over for them now but it’s hard to sort out later when it becomes evident that your dad needs it too. 
 

It sounds morbid but find out their preferences on extreme and life saving measures now. It’s so emotional to make those decisions later in crisis situations. 
 

On lucid days and moments find out if she wants certain belongings to go to certain family members. Write it down. 
 

On lucid days get her memories. Maybe on tape. 
 

Be aware that Alzheimers can mess with emotions. Very loving people can become mean and demanding. It’s not “them”, it’s the disease. 

[mommyoffive]

I don't have any advice.   I just wanted to say I am sorry.   I am sending some prayers to your mom.

[EKS]

I'd read Being Mortal by Atul Gawande.  

[skimomma]

I second the Being Mortal recommendation.  

Also, do try to grow a thick skin.  It may not happen in your case but as others have said, sometimes people can get mean.  Really mean.  I am not one to be easily rattled but some of the vitriol that has been directed at me has been very hard to deal with.  

 

[prairiewindmomma]

Jean makes a good point about getting things in order for both spouses. A crisis in your dad can spark the need for an emergency placement for your mom.

[Scarlett]

7 minutes ago, skimomma said:

I second the Being Mortal recommendation.  

Also, do try to grow a thick skin.  It may not happen in your case but as others have said, sometimes people can get mean.  Really mean.  I am not one to be easily rattled but some of the vitriol that has been directed at me has been very hard to deal with.  

 

Yes I was rattled when my FIL said to me, ‘well you broke up J and S’s marriage. ‘ (referring to my Dh and his first wife). I said, ‘ No I didn’t. I did not even meet J until he had been divorced for 2 years’.  He looked thoroughly confused....but never repeated that to me.  Thankfully.  That would have been a hard one  to ignore if he insisted it was true.  
 

 

[Scarlett]

2 hours ago, Alicia64 said:

I'm in Atlanta and my parents are in CA. My sister lives near them so they have help.

But can you share your biggest takeaway if you've experienced a loved one with Alzheimer's? Just a sentence or two would be great.

My mom is only 77 -- became obvious at 76 -- and this is hitting much earlier than expected. Her mom had dementia, but it didn't really get hold until she was 82 or so.

My dad is taking care of my mom which is a total reversal to what everyone -- including my mom -- thought would happen.

I'm not that emotionally close to my parents, but I'm trying to be as supportive as possible.

Thank you,

Wendy

I am so sorry.  My FIL just died from Alzheimers the first of October.  My MIL says it is definitely a long goodbye.  And just when you think they are ‘gone’, out pops the person you always knew, speaking completely coherently. 

[Tree Frog]

13 minutes ago, Scarlett said:

Yes I was rattled when my FIL said to me, ‘well you broke up J and S’s marriage. ‘ (referring to my Dh and his first wife). I said, ‘ No I didn’t. I did not even meet J until he had been divorced for 2 years’.  He looked thoroughly confused....but never repeated that to me.  Thankfully.  That would have been a hard one  to ignore if he insisted it was true.  
 

 

My mom's mom had dementia and accused Mom of not telling her when Mom got married and had kids. At the time, grandma's grandkids were all nearly adults and my mom was divorced. I think the only way mom was able to handle it was looking at things with humor, so she thought it was funny instead of getting upset about it.

[Scarlett]

1 minute ago, Wilrunner3 said:

My mom's mom had dementia and accused Mom of not telling her when Mom got married and had kids. At the time, grandma's grandkids were all nearly adults and my mom was divorced. I think the only way mom was able to handle it was looking at things with humor, so she thought it was funny instead of getting upset about it.

Yes, we did a fair amount if that with FIL.  I mean ya gotta laugh to keep from crying.  

[East Coast Sue]

I also found the book, Being Mortal, to be very helpful. Some cases progress quickly and others linger a long time. Neither is easy. 

[HS Mom in NC]

I helped my mother care for her mother who had Dementia for about 4 years.

1. Adult children of Alzheimer's patients (and other elderly people) should read Being Mortal to get a sense of eldercare issues that are coming at them hard and fast.

2. There are support groups for caregivers of people with Alzheimer's.

3. Don't let the brainwashing of Hollywood fool you, decision making in many difficult circumstances is not good vs. bad, it's bad vs. bad.  Make the best decision you can about the options that you have access to with the information you have available to you at the time. Don't beat yourself up or second guess yourself after the fact.

Edited November 11, 2020 by Homeschool Mom in AZ

[Laura Corin]

1 hour ago, Scarlett said:

Yes I was rattled when my FIL said to me, ‘well you broke up J and S’s marriage. ‘ (referring to my Dh and his first wife). I said, ‘ No I didn’t. I did not even meet J until he had been divorced for 2 years’.  He looked thoroughly confused....but never repeated that to me.  Thankfully.  That would have been a hard one  to ignore if he insisted it was true.  
 

 

My friend's dad became convinced he had played football for Scotland.  Everyone enjoyed listening to his totally imaginary stories.

[Jaybee]

I haven't personally dealt with Alzheimers closely. But with dementia in general, I think it is helpful to me to reframe things when the personality changes. They aren't being (mean, hateful, foolish, argumentative, etc.) on purpose, but their brain is damaged. It isn't (as pp said) the "real" person coming out, it's the brain damage showing its effects.