Experience with taking moms keys (78 years old) and possible community living ?

[gtyellowjacket]

I had a laundry list of considerations written up, left the computer for a couple of hours and returned to see plenty other folks already articulated my points.

Something not address, yet. Dementia is exceptionally tough on patient and family particularly in the moderate stage. Dementia can also have its silver lining, relative to the inevitability of decline and death. Typically, folks don’t suffer physical pain specific to the condition. Also, once through the moderate stage, folks lose awareness they have a cognitive condition. This can offer a tremendous release from the emotional turmoil of “fighting” a losing battle. Also, folks baseline personalities tend to emerge - if they were happy and kind by nature, that presentation will likely dominate; it is tough in the opposite circumstance, though.

My grandfather spent 18 months in hospice memory care, after seven+ years of decline from progressive aphasia (think Bruce Willis). Once he became incapable of speech, comprehending writing, or aware of anything past the last 30 seconds, his goofy, trickster personality became his presentation 90% of the time. He laughed a lot and so did family. He had a strawberry shake with every lunch, ice cream with every dinner, and savored the experience each time like it was his first.

When the dementia gets really bad, the old course of treatment was to correct mistakes in the hopes of trying to improve their condition like you might correct a child who misunderstood something. "Where is my husband?". "Don't you remember? He died three years ago." This led to heartbreak for the patient as if they had learned their husband died for the first time and the caregiver who just made their loved one feel horrible pain. The patient of course never got better leading to the same question over and over and more heartbreak.

The new course is to respond with something innocuous like "your husband ran to the store and will be back soon" and the dementia takes over as they forget and move on to something else.

Its a tough time for the kids but one nice thing is the patient can relive some very happy times for the first time over and over with you. Pull out the wedding album or the pictures of the grand kids when they were little and watch the patient smile. They won't remember but you will remember that time when they are gone.

 

[gregh1]

Sadly, in extreme cases of dementia you can pretty easily "trick" people into walking into a new "home" (care facility). The facilities are VERY familiar with the trickery. They gave us the playbook. On a weekend (without my relative's knowledge) we moved furniture, some familiar items, personal items (like setting up a dorm room) etc into a room at the facility (it already had a bed). Then we told her that we were going to visit some really nice people. We spent the afternoon there hanging around, then basically snuck out while they kept her distracted (they tell lies about us returning soon or running an errand, tell lies about it being a sleepover, etc).

We were actually shocked at how badly she'd gotten by the time "move in" weekend began, partly because her hearing was going, so interactions were already incomplete, but partly because people learn to fake their way thru conversations and things.

The next few days we'd visit a little and repeat the sneak-out. Then go back to her place sort her eon's of house-crap into sell/donate/cherish/trash to try and sell the house asap.

 

[grimes70]

Never had to deal with the keys thing. When my dad found himself halfway to Durham one night when he only had been 4 blocks from the house he hung them up. I used to tail my mom when she had appointments at times. She was slow but never dangerous. Eventually she knew it wasn't safe.

A bit of advice re assisted/memory care. If possible visit often, better every day. Eat meals with them. I would join for different meals so they never knew when I might drop by. Both my parents were in nice places. After a while you could see perceptable differences in care and general attitude by staff to those folks who had little outside oversight.

Treat even the lowliest attendees with respect and kindness. They don't get paid shit and they often have to figuratively clean it up. Word gets around and you can bet they will treat your parent better than most.

 

[mpaer]

Never had to deal with the keys thing. When my dad found himself halfway to Durham one night when he only had been 4 blocks from the house he hung them up. I used to tail my mom when she had appointments at times. She was slow but never dangerous. Eventually she knew it wasn't safe.

A bit of advice re assisted/memory care. If possible visit often, better every day. Eat meals with them. I would join for different meals so they never knew when I might drop by. Both my parents were in nice places. After a while you could see perceptable differences in care and general attitude by staff to those folks who had little outside oversight.

Treat even the lowliest attendees with respect and kindness. They don't get paid shit and they often have to figuratively clean it up. Word gets around and you can bet they will treat your parent better than most.

This is a great post
Presumably the lowest attendees have the great majority of interaction with residents..They are very important

 

[shonuff]

She’s had two days of anger and mean voicemails and texts but last night and today were better. She wants to be able to go somewhere once a day she said. We are going to start looking at communities Monday and take her to the doctor together. We feel like at least in the short term that could be a good negotiating tactic for some home care visits. She may say no to a community from the start but then agree for us to hire some qualified home care to come in a few times a week and check her medicine. I feel there needs to move into a community soon.

She was at my sisters last weekend visiting for the grandkids soccer tournaments and wasn’t always sharp about what was going on. My sister told her we were taking her keys. She drove her back home and stayed a few days with her as she has been doing for months. When my sister left Wednesday the anger started. Anger we had never seen. Words she has never used. Never heard her use the f-bomb and that was used several times. Mean texts and voicemails but sometimes she had trouble completing the same thought or point she was trying to make. Kept saying she was a prisoner in her on home and she was not our mom anymore.

Life360 the previous few months were not great on how lost she would get and her speeds sometimes in slow neighborhoods that have kids. 50 in a 30, 70 in a 50, 15 in a 35, etc. Once that was seen last week we made the choice for her and others safety.

She was mad Wednesday and Thursday and then apologized to my sister last night. My brother gave her a ride today and she seemed better. She knows we took her keys. Not sure how well she will remember her outburst. I know she would not be able to tell you she was with us last weekend at a tournament. It’s been almost a consistently getting worse the last year.

We haven’t mentioned the community yet, but that will be next, but we will not use the word ‘nursing home’ or ‘assisted-living’. The doctor will be a great help I hope with all of us there (her three kids).

She also has diabetes 2 and doesn’t eat well and sometimes is more confused if her sugar spikes. She now has sodas at the house for her bridge club and we think she forgets she can’t drink them.

We really think she will enjoy a community because she’s so social.

I’ve learned so much from you stories, thanks for taking the time to post and have to relive some of these tough memories.

I’ll update when there is more.

 

[shonuff]

She's still all over the map. A ton of anger we took her keys. Dozens of angry voicemails about her keys. Her primary care was a Nurse Practitioner only 35 years old. Was not very accessible. Wanted her to come in for a memory test. We told her no need because we know there is some short term memory issues already. I spoke to my Primary Care and she said to get a referral to a Geriatrician and to get a Neuro psyche eval. We have her NP refer us. We just booked an appt with the Geriatrician in two weeks. The Neuro psyche can take a month to three months since there are so few. We got the appointment to the Geriatrician primary side and not the memory side. They said some people keep their Primary Care doc and just use them for the memory side. We just got an appt with the Geriatrician primary care and will let her guide us since she will know best. There may be some medicine to slow the onset of dementia down or help with mood, diet, etc. I am happy to get some more specific help and advice from a specialist like this.

 

[Callatoroy]

Anyone have any experience with taking their parents keys and possibly having them go to community living? We recently had to take my mom‘s keys and she’s furious like I’ve never seen her furious but she was a danger to herself and others in the road and was getting lost all the time. She is slowly getting dementia and is gradually getting worse. She also has diabetes 2 and we are worried about her not taking medicine correctly. House is starting to be a mess and conversations are tough.

I’ve seen where you can purchase a place in community living and have fees. 5-8k a month is too much just for a room.

Has anyone gone through this and have any suggestions or advice ?

Debating on using care.com and having someone come in twice a week but she is saying no way. I’m sure she will change but may have to bite the bullet and put her in a senior care home.

Tough, tough situation for you and I feel your pain as we had something similar but not the same and not as bad as yours because we had the local and family resources to weather it until it resolved itself. Wish I had words of wisdom but I don't other than to suggest contacting social workers who are trained to help with this kind of thing and are able to offer options. Best of luck to you, your family, and your mom.