Oof on the omission of the medications. How in the world does no one notice that at the facility!
Good luck with the hospice meeting.
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Is there any activity you could distract her with? coloring? TV? Simple craft?
Looking at coffee table type books with lots of pix (ones with cars?) Music? My dad liked the newspaper read to him. Podcast where they read stories (to put you to sleep?)
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Tried tv, tried reading, basically what caught her attention was discussing the apartment we are (not moving to. I talked about her grandchildren, her old boyfriends ( a favorite). She refuses to listen to music because she was a pianist- figure that one out! She used to like musicals. I bought a CD and player but no interest. She cannot do a craft.
Gin is a big love 
A couple of times this month I have gotten her in the wheelchair and taken her to the pub, sick as she is.
@gouf78 I appreciate it. I am trying to address quality of life versus sedation which will be the topic of the family meeting I think. My brother wants sedation all the time. He may be right but I am still trying to catch her interest.
Her hearing is so bad that reading the newspaper is frustrating but the sound of my voice might put her to sleep. Of course she would say it is silly because she can read it herself (she cannot). One time I told her that pride is her downfall!!
Can you spend less time there since she is in a facility? She is bedbound and you need to care for yourself as well. The hospice people should be able to give you an idea when things get closer for her . Even with that, itâs not uncommon to not be present when the end comes.
When my mother transitioned to hospice from her regular nurse that visited off and on for her last few years when she had issues, the last thing she said to my sister and me was - Your Mom is a nice lady , I hope things go quickly for her.
I hope your mom will find peace soon, if it is her time. Youâve been a wonderful daughter . She is lucky to have all your support and care.
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Just found a website called DailyCaring dot com. that has suggestions for all sorts of scenarios in Alzheimers and dementia (oneâactually several-- being repetive questioning). Maybe it can be some helpâor at least youâll know you arenât the only one (not a solution but it helps sometimes).
This may or may not apply to your situation:
It is EXTREMELY frustrating to not be able to hear. Not just for them but for you. Repeating things over and over is terrible. For you and themâand theyâll give up eventually trying to tell you what they actually need. Does she have hearing aids? I couldnât even get my dad to the doctor near the end of his life and I MADE (tiger mom mode at the other end of life spectrum) the hearing aid place readjust them without him being there because something was absolutely better than nothing. And it made such a HUGE differenceânot just for him but for me (and my sister) too.
Just hugs from me to you. This is hard and fighting with medical people just makes it harder.
Bring gin in and make her a drink (or two) -have a mini-party!âyou both need one. Bring everyone in for a party.
Enjoy every last moment you can.
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I donât understand how a facility that you are probably paying big bucks for can not be giving the medications as prescribed or answering emergency call buttons. This needs to be reported though I understand your energy is with your mother right now.
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She has a good hearing aid but 30% of her hearing issues are comprehension.
@momoffour I met with the assistant director first thing this morning about the issues and a report is being filed about the gabapentin.
@gouf78 thanks for the siteâŠ
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I have zero advice, but just wanted to say I hope the meeting with hospice is fruitful. Donât forget to take care of yourself as well
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The combination of dementia, deafness and a terminal situation is tough and one many caregivers experience. I used to paint with her, take walks and sit in the sun, and have interesting conversations about the past. She is just fading- physically and mentally. But agitated every afternoon about leaving and âgoing home.â I discuss with her what âgoing homeâ means to her but it is not a metaphor for her! The âhomeâ varies: childhood, house where she raised kids, retirement house. She is homesick without an actual focus. I donât want her life to end in sadness. I am hoping she will feel at home in some way. Holding her hand comes close.
I forgive the facility a lot. One nurse for 68 residents and the staff of aides are heroes. There are a lot of cooks in the kitchen with hospice involved. But that doesnât mean I didnât deal with it I was satisfied with my meeting and conversations and all meds were given tonight.
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Talking about different places, people, is quite common. Her life will not end in sadness. She has you and love at the end.
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Can you just go with it when she says she wants to âgo homeâ? Tell her, after her visit to the pub, you and she can make a plan? Just a thought. I found with my stepmother that her most âirrationalâ needs were easily satisfied. I am sure I told this story before: she always wanted her pocketbook with her; of course it had nothing of any use to anyone whatsoeverâa little change, keys that opened nothing, etc. It used to drive my dad crazy, and then I suggested he just go with itâremind her to take her purse, bring it to her when she left it in another room. Much better. Hope you find the right little tricks to give her some comfort.
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Yes I âgo with itâ in many ways, depending on how she is expressing it. There is a mythical apartment in a nearby town that I am looking at with an agent, for my mother and me to live togetherâŠI have been looking at it for several months now! Or maybe her old house is available. Etc. The desire for home is an opportunity to discuss the past. The thing is, she expresses this over and over, in person and on the phone. She is never satisfied, no matter what strategy is used. I just hope for some kind of acceptance.
Today I told her that her assisted living is beautiful and she might not find a garden or friends or a window with a view of trees, anywhere else. I told her the story of how she looked at it and loved it and chose it herself, and did all the work of moving without any help. She agreed it was the best place for her and then went right back to wanting to leave and âgo home.â
I have gotten her to the pub twice in two months, and it is an ordeal. Right now she is bedridden and has trouble taking a step.
Do benzos (Ativan?) help when she gets agitated? Just a thought. Itâs not like you have to worry about addiction, and they work pretty quickly. I mentioned the pub because I believe you mentioned that you got her into a wheelchair one day and brought her there; of course if that is too much of an ordeal, never mind. So very hard when you want her anxiety relieved and there doesnât seem to be a solution. Since it always seems to happen at the same time of day, maybe you and someone from Hospice can cook up some relief. And if not, well then at least you know youâve tried your hardest!
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We have tried Haldol (for perserveration), Trazadone (loose stools in colostomy, weird color) and Ativan. Ativan used only a few times has significantly affected cognition. And it only lasts a few hours, then her agitation seems worse. We are discussing scheduling it twice a day. At bedtime she has gabapentin and Lunesta. I also want to talk about gabapentin. Morphine is also in the kit I have from hospice.
The meeting will focus on meds mostly, as long as she can stay in the facility. My brother has wanted her fully sedated for a few months now, and I have been trying strategies for quality of life. But at this point my brother may be right. It feels like losing her already. The meds have to be for her comfort and not the convenience of staff or anyone else. We also need to discuss private aides for respite because she needs someone with her most of the time.
Thanks for caring!
For others: I find alzconnected.org to be helpful. I was just looking at a thread about Purrbles, furry toys that have a fast heartbeat and when you cuddle or pet it, the heartbeat slows and it purrs. For ages 3-103. Thatâs an idea! Maybe that would be of interest to othersâŠ
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Last night nurse called BEFORE giving Ativan at 1am (I requested a call before meds, yesterday). I asked the nurse to avoid Ativan if possible. Since my motherâs cell phone was removed (after she called emergency by mistake) she has been calling front desk/nurses non-stop, even at 1 am.
I said call me in an hour if she is still awake, and try tylenol as a placebo. The nurse also gave her some bites of muffin (she ate no lunch or dinner). Yay she went to sleep. No Atiivan for 32 hours. Maybe she will be more coherent today.
My brother emailed from Ireland trip to ask me to look into the hospice house. No, that is not appropriate. The hospice said a family member would have to be there in this situation. And today my brother said he is âall for ramping up the morphine or anything stronger that provides comfort.â It is hard because he just doesnât really understand. Morphine is for pain or breathing and causes nausea. Every drug we have tried for anxiety/agitation has difficult side effects or rebound or affects cognition to the point she has no resources to occupy herself but remains restless.
I arranged a family meeting so professionals can tell him this. I always like to have a third party convey info!
Iâll stop with the play by play. Many of you are in the same place or have been. I am just problem solving as we go and putting out fires. Today the emergency button goes on her wrist so she doesnât push it as much, and I am going to advocate for restoring her cell phone to relieve staff.
Please feel free to do play by play here. This thread was closed due to a CC transition during the week my father was dying, and for sure I could have used it during that fraught week! Sometimes itâs just a relief to have an easy place to type it out. xoxoxo
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Yes, donât be worried about writing down the play by play. I found that very helpful when my mom was dying.
FWIW, you are asking the right question, and advocating amazingly well.
Big hugs to you!
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Thank you! It is immensely helpful with a group who understands.
I donât want to dominate the thread and my motherâs strong will is stretching this out! This could become a compmom diary!!!
Looks from google search that you can disable emergency call on a iphone so it doesnât get called accidentally.
And I was serious about bringing gin to her rather than going to the pub.
Deep breaths!