@SOSConcern yes, my moms handyman stole a lot. While convincing me and her and my brother that he was looking out for her. My DH thankfully saw through it and got my moms preacher to tell me the handyman was a con man!
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Back from four days caring for my mom. Boy, she is worse. Her occasional sundowners episdoes are now nightly occurrences. She insists that she wants to go home, that her parents are worried about her. Sheâs so bad that I donât feel compelled to tell her the truth as she canât hold information for more than a few seconds. That makes caring for her easier, at least to me.
She is down to less than 112 pounds. I wish I knew how much more time she has left.
Do you think someone in this state has an actual quality of life? I mean, we still laugh and laugh, and she loves when I make her an ice cream cone. Is that sufficient quality of life?
I am really sorry. Your mom sounds like my MIL but unfortunately it may be awhile. My MIL has been at this level or worse for several years now. She weighs about 112 now too and she is - or was - 5-9. In July her o2 was in the 60s and I think her heart was functioning at 25% percent. And yet, she still lingers. Itâs awful I know.
The fact that she canât retain information for more than a few seconds means that she probably isnât really aware of her actual quality of life. Thatâs not a bad thing (as opposed to my 96 year old MIL who is well aware of her lack of quality of life and just wants to die). Keep giving her those ice cream cones. Her happiness in the moment is what you want to focus on. The bad stuff will eventually fade away, and your memories will be filled with the little moments of happiness.
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@Youdon_tsay I think if she is laughing, and enjoying ice cream, that is quality of life. Toward the end my mother did not eat for 3 months except for a bite here and there of ice cream. She lay in bed and always remarked how beautiful the sky was outside the window. She watched a tree turn. For her, this was quality of life. For someone else, maybe not. When the days of moaning started, this balance tipped, but she still had good days and we did what we could to maximize them when they happened.
I did some dementia training (rudimentary) and read some books. I learned that we really donât ever need to tell our loved ones with dementia âthe truth.â My mother cried and wanted to go home to her long dead parents. She obsessed about a car being parked at a mall that she had to go get. I just told her I would get it for her. She wanted gin every day and I used the eternal tomorrow as in âOh, I forgot today, Iâll bring it tomorrow!â
There WERE occasions when a small amount of truth helped with anxiety. Since the car thing kept coming up I did finally tell her there was no car, and she was relieved. So despite what the training taught us, it is always a judgment call!
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Itâs very moment to moment, but that counts. It is absolutely wrenching for you, but until she is uncomfortable and needs management of that, it still counts as a moment worth having. You are a good person to stand in the gap and see your mom through
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The deal is I donât find it wrenching. Sad and frustrating, yeah, but I guess after seeing my dad transition I am prepared for this. As I say, Iâm ready for her to go but not ready for her to be gone.
I think my question about quality of life is me thinking what I want my final years to be like. Iâm not sure I want to live like she is now. 
Iâve done a long webinar on dementia care and just find the whole thing fascinating. At one point, I would see how information affected her or didnât. Like when she talked about my dad, if I told her that he was gone she might say, âOh, thatâs right!â Another time she might say, âWhen? Why didnât anyone tell me?â but doesnât get super upset. The most upset she gets is if she says, âYDS, why do people keep saying that? Donât say that.â And then a minute later it could start over again. So now, I just agree with what she says â that heâs at work, etc.
The most difficult thing for all of us is that now every night she wants to go home, call home or her sisters to tell them where she is so they donât worry. Sheâll get dressed to leave and thank me for taking care of her but now sheâs ready to go home and WONâT drop it. THATâs a concept she can hold on to. I think thatâs part of what I mean by quality of life. She is so agitated every night that that feels like a horrible way to live. And, interestingly, she DOES remember some of that the next morning. Like yesterday, she got up and was so chipper but talked about how the woman last night (me) wouldnât let her leave, but she thinks itâs because the woman (again, me) was young so maybe she was scared so my mom was OK with staying with her. I find that fascinating as I am the youngest child. Does part of her remember that it was me who was keeping her home? That night, she thought I was my SIL or cousin. I just feel sad that so much of her evening is spent agitated, but, like I said, in some ways itâs a blessing as you feel like no matter what you say or do it doesnât matter as her mind is a sieve.
Anyway, thanks for letting me dump my thoughts.
At one point, my mom told me that she saw her parents, and they told her that it wasnât time yet. I asked her if my brother, who had died less than a year before, was there. She looked at me like I had two heads & asked me, âWhy would he be there?â I was actually glad that she didnât remember that he was gone.
I definitely donât want to live the end of my life the way my mom did, but we unfortunately donât get to choose. Thatâs the scary part.
@Youdon_tsay Your words are exactly how I feel with my husband-ready for him to go, as that is what he wants, but not ready for him to be gone. While my husband doesnât have dementia, his behavior at times is the same. There is one thought he is fixated on, but it makes no sense to any of us. A week ago he was very angry when we wouldnât do this thing he wanted; now he has only mentioned it once, and we can say, âI will do it as soon as your sister leaves,â and he will forget about it.
Hospice really pushed for Ativan for agitation, but I only used it close to bedtime to allow his mind to rest. Now he no longer has the agitation, so havenât needed it, but we still give a very small dose at bedtime.
My mom just kept asking same Qs often because NO short term memory. She didnât forget who we were not get agitated. I was so relieved when we could give her morphine under her tongue so her last memories wouldnât be so pain-filled as the cancer progressed.
Some months before my mom died of dementia, while I was helping her with her shower, she asked if âthat manâ was a cousin (it was my brother). Then she later asked me if I was a cousin and I answered âno momâ. She was very accepting that everything was being taken care of, she was in her house, and had her dog âSeppiâ (which was a Swiss nickname for Joe, which was my dadâs name).
Working with what the confused person has going with their thought train. If she is ready to âleaveâ, and is dressed, open the front door and act like you are going somewhere with her. Maybe a short car ride and then back - whatever can work.
Hugs!
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We would be taking her on drives 10 times a night. Sheâd get back and think she had to go again. My SIL tried taking her out on occasion to no avail.
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Ready for her to go but not ready for her to be gone.
Perfectly put.@Youdon_tsay you seem to be doing such a wonderful job. I also found it fascinating.
The repetitive behaviors are sometimes âperseveration.â My mother was on hospice a long time and none of the meds: ativan, haldol, morphine, addressed that.
But sleep meds were a god send: Lunesta and later 100mg gabapentin was added as a booster.
Ativan really made the dementia worse. Some docs wonât use it for a person with dementia. Also a fall risk.
My mother called me 40 times in a day with no awareness. Nothing helped. After trying meds and having volunteers visit and trying to get her up, I finally used smoking cessation techniques. I made the phone harder to find, put it in different places and generally confused her. She had a hard couple of days and then forgot about the phone. I felt cruel but in the end it saved her some distress.
Yesterday was the first anniversary of her death. I hope you all donât mind my reminiscences and hope they are helpful. @Youdon_tsay you are valuing the moments and it will serve you well.
I saw this on another website and thought it was a great idea. Iâm going to fill it out and keep it with my living will and healthcare POA paperwork. Iâll make sure my husband and kids know about it and where to find it.
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Thank you for this! I just downloaded two copies so H & I can complete them.
I donât judge what others do, but there is no way I would want things like cancer treatment if I had dementia. There is a host of other things that I would not want, and this will allow me to carefully consider them & put my wishes into writing.
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Oh, my H would definitely want to complete this form. He fears losing his mental faculties more than any disease. Thanks for sharing this, @patsmom.
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There is a whole movement toward valuing life for those with dementia, which means improving environments, activities, community and attitudes. This is a complex issue but every time we say we donât want to be around once we have dementia, what are we saying about the value of the lives of those who have it now? I am asking, not lecturing! It is complex and individual. And depends on the type of dementia, how advanced and so on. My mother didnât know she had it and was happy. Canât say I was as happy as she was at times 
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This is something Iâve really struggled with as well. And yes, super complicated, and I agree that I worry about what message it sends.
This may be an overshare but when my mom was first diagnosed, she attempted suicide. (Her mother and grandmother both had dementia so she saw that first hand.) When she wasnât successful, she begged us to âhelp herâ. I couldnât do that but I promised her we would only do comfort care measures, which is essentially what this form is saying. She still lived another 8 years, the last 2 in a memory care unit. While I do firmly believe she still had moments of joy, and while it was really hard, I also treasure having that time with her and being able to say a proper goodbye, but it was also so hard knowing that this was not how she wanted to end her life. Ideally I think we should get a choice and a say in how we leave the world.
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As someone who saw my grandmother suffer with Alzheimerâs.
I would not want to be a burden to my family. To my husband or my children. I would not want them to suffer even if I wasnât because I didnât understand what I was going through.
I would never ever want my family to suffer with a person who is less than what I am now.
My neighbor had dementia, he was subsequently diagnosed with cancer. His family decided not to go to treatments. They prayed and had thoughtful conversations. And decided not to make him suffer. And let him go.
My mom is so afraid of running out of money. She would not want to linger. Especially with a diminished quality of life.
For myself, I wouldnât want my kids to have to deal with what Iâve seen friends go through.
We arenât meant to live forever. Iâm at peace with that.
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I donât know if anyone remembers this article from Dr. Emanuel from almost a decade ago, about refusing all medical intervention at 75, but there was a recent update: Does Ezekiel Emanuel still plan to refuse medical treatment after 75?.
This really stayed with me when I read it the first time around and I can totally see myself taking the same approach.
I donât think it devalues old age, but is realistic about quality of life.
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