When an Alzheimer's patient losses a loved one

Jerome Likes Pie

Hi All,

My mother who is Stage 4 and advancing quickly lost her only sister a couple days ago.  Emotionally, she is doing ok, but this event seems to have accelerated her Alzheimer's. She continues to forget about her sister's death, the arrangements, etc.  Her long term memory is good, but her short term memory is gone, even after 10 reminders.  I think attending the services will be difficult as I expect a lot of confusion, repeated questions, potential anger, etc. that may affect other family members and friends attending.

I know I will need to attend to her emotions to help ensure she is calm and comfortable as much as possible.

If anyone has any advice for me, please let me know.

Thank you kindly, 

Pie

MsReliable

what a difficult situation! I feel for you.

Now, I am going to suggest something that you might not like. I get that. Please try to give it a moment's thought. 

Does she really have to go to the funeral? At Stage 4 and already suffering emotional distress from the separation, you are correct in thinking that it could be quite hard for her and the people around her. 

My dad has vascular dementia, not AD, but the wonderful professionals at his MC community have taught me that sometimes it's better to enter Dad's world than to try to bring him back to mine. My cousin, whose husband recently died from AD, calls this 'therapeutic fibbing.' 

If you walk this path, you would stop talking about her sister's death. Instead say that she will visit tomorrow, she is busy today, and perhaps encourage your mom to talk about good memories of times with her sister, or to make a plan ("She's coming tomorrow. What would you like to do together?")

It all comes down to helping her feel happy, even if she isn't 100% accurate in knowing what is going on. 

I use this with my Dad, who gets wound up about seeing people who live on the other side of the country, or seeing his girlfriend from MC, as he is just out of 6 weeks in hospital and is now in rehab. His GF is in MC too and cannot come to visit him. Instead I say that we spoke w her this morning, we will all go for dinner tomorrow, and I deflect him to talking about where we should eat and some of our favorite meals. In a few minutes he calms down and forgets about it. 

It took me a few weeks to stop feeling guilty about doing this, but I realize that stepping into his world is an easy way to make him feel like he is still in control of some things. And for my dad, that's very important.

I hope this helps you. Whatever you choose to do, I am sorry for your and your Mom's loss and wish you strength on this road.

M1

Jerome, my partner lost a close sister a year ago this week when she was stage 4 edging into 5 (she's now a pretty solid 5).  She still occasionally forgets the death, and it gets rehashed nearly every day, so I would tell you not to expect it to settle down any time soon.  We did not have any services because of COVID, so I can't give you any advice about negotiating those.  Nearly every day we have the conversation about what happened to Becky, what did she die of, was it contagious, was there anything that could have been done differently.  I am not very successful at diverting her when she gets on this topic.

Good luck....

King Boo

Jerome, her sister's death did not accelerate her disease.

It just reveals that she is more impaired and further along than you realized.

It's easy to chalk off day to day little things, eating, remember to brush your teeth.

But the fact that she does not have the ability to remember and process such a significant life event is like a splash of cold water in the caregiver's face.

Having been down this road before, at Stage 4, you have mentioned it once, now let it go.  Reminding her will not get her to retain it, only cause repeated upset.

I would recommend that you leave her home since she is not asking to go to services and most likely will not remember she was there.  It will bring no comfort, no processing, no closure and is a huge undertaking for you.

But of course, it is your decision to make.

Jerome Likes Pie

https://betterhealthwhileaging.net/avoid-delirium-reduce-alzheimers-decline/

https://pubmed.ncbi.nlm.nih.gov/17099599/

I attached a couple of articles on how stressful life events may accelerate Alzheimer's symptoms.

Also to say that a PWD's sudden increased impairment is absolutely not due to a traumatic life event is like driving on a road trip for 400 miles, getting a nail in your tire on mile 399, and then saying the nail was always in the tire from the beginning.  

We monitor our loved ones with dementia closely every day so saying she has been worse than I thought all this time is possible, but not likely.  

Lor2014

There is no easy answer. My mother has forgotten that her husband (my father) died 15 years ago. There was a time when she would ask me every 4 minutes where her husband was. I answered that he was on a trip or he went to the hardware store. On one occasion when she looked in my eyes and asked if he was dead, I replied, "yes." She started grieving as if it was the first time. I will never make that mistake again.

For 6 months, I told her he would be back in a few days, repetitively. The questions about him have lessened, but she still has 2 pictures of him on her wall. She's taken down all of the other pictures of family members because she doesn't remember them anymore.

Dementia sucks. You are not alone.

Emily 123

Hi Jerome,

This is sad, but...if she doesn't remember, don't force it.  Reminding her could be making her confusion worse. I'm sure there's a lot going on and she's asking about the preparations, but perhaps a fiblet might be deployed.  She's clearly not remembering her sister's passing.

I'm sure your 'old' mom would have wanted to go honor her sister, but you have to make plans based on how your mom is now, not how she was.  Would she thank you for taking her to the funeral in her current state? It sounds like you're concerned that she will be pulling focus to herself--would she want that, and at her sister's funeral?  This is a hard choice, I know.  Why not consider taking her to the graveside at a later date?

I'm sure people would understand if told that her Alzheimer's made it impossible to for her to remember your aunt's passing, and she was confused and grieving anew each time she was told. 

robinja

Hi, Jerome. I am sorry you and your mother are going through this. Earlier this year, my father passed away - he was my mother’s caregiver (Mom was stage 4 or 5). Like your mom, my mother had difficulty remembering and processing his death. Since they were together all of the time, she did notice his absence, though. She did attend the funeral and graveside service, and although it was a difficult time, it seemed like the right thing to do at the moment. Getting her ready to go wasn’t easy, but she behaved like a normal grieving spouse at the services. We did not bring her to the visitation because we thought the stress of greeting everyone would be too much. In hindsight, it really wasn’t necessary for her to be there - she doesn’t remember it. But there wasn’t any harm in it either. 

I don’t know the right answer for your situation, but know that whatever your decision is, it will be the best one you can make under the circumstances, and it will most likely work out fine either way.