96-year-old Mother

Karen Kindness

After 35 years of living independently in her townhome, following our father's death, my mother had a fall last November which resulted in hip and wrist surgery.  Since then she's had two more falls and is in a senior center, needing care for dressing, bathroom, meals, etc. She now mainly lives in a wheelchair.

She's always been a very private person, and doesn't want to see or talk to anyone other than  my brother and I.  We both try to call her every day and visit once a week as essential caregivers. The facility provides monthly doctor evaluations.

While she continues to read books and somewhat carries on conversations, we've seen many new symptoms which appear to be related to Alz.  My brother and I are trying to figure out what we should and should not say.  She frequently questions why we "put her in prison" and won't tell her when she can get out.  We have tried to explain that she needs a lot of care and we don't know the future.  We also understand most of her thinking is not logical.  She doesn't trust anyone and won't participate in any activity other than reading and watching tv.

Her faith has been her greatest value her entire life but she has now pretty much given up on that because she doesn't know why God would do this to her.  We've offered having a priest or spiritual advisor talk to her but she refuses.  So we are trying to be patient and mostly just listen to her repeated conversations and are thankful when we can share a smile.

Appreciate your listening and will be pleased for any suggestions.

Rescue mom

My mother was almost exactly like this, except it came on more gradually. She was also very religious, and extremely reserved/private, was not at all sociable. The staff at her facility worked hard at coaxing residents into social interactions, even transporting in wheelchair and kind of joking and teasing her along. She didn’t do much once there, but at least she was “out”. Musical programs, and radio/or someone’s phone,  was one thing she did enjoy.. 

I went through maybe a dozen private pay companions until finding one that clicked, to spend more time with her. Same thing with faith leaders. Many would come visit, chat a bit, but “I don’t like him” was the response—until one came that she did. (May be harder now for ministers b/c covid restrictions)  But once the right person was found, she really did blossom (relatively speaking). Staff may not have as much time to spend on “socializing” with individuals as we would like, but that also depends somewhat on the place.

It’s so hard when our LOs are so “unsocial” (not the best word but) or reserved....my mother would just sit for hours if allowed. OTOH, we can’t judge what’s boring for them. They are unwell, their brains don’t work right, and we can’t judge them by what we might think or feel. It’s great she can still read! Seriously. So many dementia patients lose that ability early. That and other regular activity may be enough for her now, in her condition. Probably not for us, but for her now.

You already know that reason and logic don’t work when they ask why they’re “in prison” or cry to “go home.” You learn to agree and then distract. Say something positive like “oh but the nurse is so nice/the great room is so pretty/the music is good” etc. or if she wants to leave, say “ok, we’ll go tomorrow...when the car is fixed/when the road repairs are done/when the rain stops”  etc etc. “we can go when your doctor says it’s ok”, assuming she realizes what “the doctor” is. No use arguing, or presenting logical reasons, they can’t understand.  it’s all just really hard, but sounds like you have a good grip on things.

zauberflote

Karen, your kindness shines through your post. I wouldn't say one single word regarding any kind of dementia to her. Peace and quiet and hopefully contentment are your goals here. 

Many on here use a technique called "therapeutic fibbing" when confronted with the unanswerable question of when will LO get out of this prison. (Common phrasing, btw!) Come up with something that will comfort her and take the responsibility for having done the dirty deed off of family. Many say that a doctor wants her there until she becomes stronger. Others are using Covid, if LO makes sense of that. Others use catastrophic plumbing/electrical/structural failures at home as the reason not to go home yet. Yet!

My mother preferred, above all other activities, to sit quietly in her room with a book, magazine, or paper in her hands. She hated television. Both activities directors were able to coax her to musical events, and as her dementia deepened, the male one flirted with her quite shamelessly to get her to come to napkin folding. She'd smile for him. 

Mom's faith was the defining fact of her life too. We arranged for someone from a wine-drinking church to come by every 5-6 weeks to give her proper communion, which I think gave her deep satisfaction. She came to a juice-once-a-month church with us, and the tiny plastic cup and tinier cracker meant les than nothing to her, despite the spoken words being familiar. Towards the end, we hired some companions, all of whom were happy reading either her Bible or some children's bible stories to her. She liked that too. Her brain forgot who God was, but her heart never forgot. All that to say, is the pastor of her church willing to come visit when you come? Specifically with you or brother, so she doesn't have the chance to say no. Perhaps the pastor could bring communion-- they all have travelling kits, I'm sure!

Have you looked into hospice yet? You don't tell her ANYTHING, just that a friend wants to meet her. Hospice personnel are in my experience very skilled at making a person have a bright moment in their day. Having hospice doesn't mean mom is at death's door; in fact, she may not qualify. My mom was on for 8 months, MIL for 18.  

You are so right-- sharing a smile is one of the best things to have the memory of!

harshedbuzz

I am sorry your mom and your family are living this.

We had a freakishly similar situation with an aunt. She had a fall in her independent living apartment in which she broke a hip and wrist which resulted in a hospitalization and stint in rehab. It was as if her MCI went on steroids and emerged in moderate dementia. After rehab, she was moved to a "Personal Care" wing of the CCRC where she lived because she needed physical assistance with ADLs. 

The former party girl became something of a recluse who refused to join meals and activities while in personal care. It turns out, the other residents there did not have dementia which resulted in a bad fit- she couldn't keep up with conversations and other ladies avoided her and the activities were beyond her cognitive abilities so she didn't understand or enjoy them. Life for her improved greatly when her daughter was able to get her into a SNF where staff was trained in dementia and activities were things at which she could feel successful.

Dad thought he was in prison when he went to rehab for a time. "By whose authority am I incarcerated in this place?" were his exact words. We explained the stay as temporary "until the doctor feels you are well enough to head to Florida for the winter". It wasn't the truth, but it was the answer that brought hope and comfort.

Karen Kindness

Thanks for sharing your thoughts.  One recent suggestion I made which so far is going very well is for us to say the Our Father prayer each time before I leave after visiting her.

Karen Kindness

Thank you for your kind words and all the best to you!