Thanks @oldmom4896 Dad is doing quite well. There is no discernible evidence of a sense of loss. But, that being said, with his aphasia, it’s difficult to understand what he is communicating. He is soon moving from the double room and queen bed he shared with mom, to a single room and bed. I wonder if we will see a change at that time.
I am doing well too. I can more easily remember mom pre dementia since she died, and the reflection on her life has been helpful. Lately, I’ve been second guessing my decisions on her care and wondering if I did the “right thing” and thinking I should get bereavement counseling to help with this second-guessing myself.
I became quite good at lying to my parents back when my brother died 4 years ago. It didn’t seem helpful and maybe harmful to remind them they had a son and he died. He was really just forgotten.
@gtalum, I really feel for you, My dad died in 2014 and I still think of things I could have done better. I try to think of it in the same way I thought about being a “good enough mom”–we do the best we can. Certainly you’ve had more than your share of losses with your brother dying suddenly in the midst of your parents’ downward spiral, and our sister-in-law’s puzzling (to put it charitably) behavior. One thing I noticed several months (or maybe a year? not sure) after my dad died was how his (and my stepmother’s) deterioration was pronounced during their final two years. It was hard to see it while it happened but some time has given me much better perspective.
I am just amazed that you managed to go back to school and complete your Ph.D. in the middle of all this! I could not have done that, no way, no how. It took a while after my dad died and after my brother died before I was ready to go back. I am so lucky that I found an amazing therapist a couple of years before my dad died. She helped me deal with my very mixed feelings about him so that I felt at peace when he finally passed away.
I appreciate how often oldmom has mentioned counseling. It can be a godsend.
If you do this, try to find one experienced with grief and the (common) second guessing. Last thing you need is a knee jerk approach.
The lying issue is about the kindness in not stressing them with something they can’t process. First time I’v eheard brutal honesty is supposed to be some grace.
We never told my brother that our mother had passed away; he was very advanced in Alzheimer’s and apparently didn’t try to call her (they used to call each other about every five minutes); he only outlived her by eight months.
I look back with regret on the times I told her the truth instead of a gentler lie, but I honestly didn’t realize how far gone she was; she hid it well and I was under so much stress I accepted that she was better off than she was.
FIL is fading, but the hospice nurse thinks it will be a few days yet. He’s in pain & has blood in his urine, but there’s a pulse in his ankle and his feet are warm. (I didn’t know those were signs.)
MIL is spending time in the recliner next to his bed. She’s ok, but doing a lot of moaning and worrying. The two of them together made up most of a single person, but recently it’s been like 75% her/25% him, where for the past 6-7 years since her stroke it’s been the reverse. Hospice warned H and SIL that she could have a rapid decline once he’s gone. She’s never pictured herself w/o him, so they are ready for that possibility.
He was able to have a couple of brief convos with his sister, which was good for both of them. He’s ready to go.
I’ll probably go over tomorrow. I was there yesterday & MIL was telling me to go home the entire time. Just trying to be here for my H and our daughters.
For those of you with an elderly parent in your home, and perhaps for those struggling with issues at the AL (if this is allowed), I have added a camera to my mother’s room. The idea was that I could see if she fell when I was busy in other parts of the house or outside. It’s only been a few days and I wish I’d gotten in much sooner!
I bought a WYZE camera for $20 and it is fantastic. There is an app on my phone, it notifies me of sound or movement and records for 12 seconds each time plus there is a live stream.
I ran errands over the weekend and DH worked outside all day, I checked my phone every so often to verify all was well , as it was only the 2nd day with the camera, so still figuring out the system. He did not have to wash up and check her, he could go in when needed. I also saw, as I suspected happens, that I would peep in and she would appear sound asleep and then 3-5 minutes later she’s up, checking in did not work.
I can put her to bed and go to a neighbors for a visit, I can go run local errands and see if I should hurry home or keep going, I can work in the yard, etc. I’ve also noticed that having the advance notice that she is getting up means a 2-10 minute warning before she appears, allowing me to have a better attitude when seeing her
I’ve also discovered her on the ground after a fall much sooner than normally. I am thrilled with the freedom this is giving me, I feel both less trapped and less guilty.
What a great idea, @somemom. It gives you peace of mind while allowing you more freedom to live your life. My mother’s in a nursing home, so I have no use for it, but I’m sure there are other CCers who would find it useful.
For the shoppers, I found WYZE via my AirBnB/VRBO groups and figured $20 was a great way to try it out, everything else is so expensive. I am finding the app easy to use, the picture quality is great, and they have a $30 unit that pans. I got that one for my family room and keep it off all the time unless i am checking on my mother and she’s left her room. I don’t want to record DH & I all the time!
@zeebamom I understand about this “death watch.” I’m to recent from the experience to offer much insight besides having hospice, who has been through it countless times, helps. I would have bet that my parents could not survive without each other. They were always so close and they only needed each other for their happiness. I am pretty shocked at my father’s resilience. Is this a “good” aspect of dementia? It makes me a sad as I have no family to reflect on my mom’s life.
I had a camera in my mother’s living room for several years before she fell; I put one in the bedroom but wasn’t watching it when she got out of bed and fell, of course. Luckily I went back to check on her before going to bed myself. The camera saved me many, many steps; I could also check on my phone and from my office computer.
If the parent is younger and/or more healthy but you still want to monitor and you are concerned about privacy, I have heard of people placing the camera closer to floor level so it shows where they would commonly walk but they don’t feel like someone can see everything.
Yah, @curiousreader, this camera is adding so much freedom, I wish I’d gotten in sooner, and yet prior to a few months ago and definitely prior to a year ago, it would have been an invasion of privacy. Floor level is a great idea. My app notifies me if there is movement or sound, so I should be aware she is up for a fall; however once she is up, it stops notifying until she has been still so she could still fall. And the sound thing I might turn off as it notifies me when the dog barks to go out or repeatedly when she has her TV on, so I am already becoming inured to the buzzing notifications?
Definitely saving steps, but also sanity. I can see myself check her and then 4 minutes later she is up. Now I am checking her less in person, but at the right times.
Camera sounds like a great idea. I am trying to get my mother to remember to use the walker inside the apartment. She is using the wheelchair, leaning over the back and holding on to the arms, and the AL keeps calling me about it. The PT keeps training her but it doesn’t stick. I wish they would all understand that.
Last night she called me to say she was using pliers to take a bracelet off. Heaven knows what I would see.
Her dementia is worse- all visiting therapists are discussing. Can pain worsen dementia? Her fracture/bone bruise/bursitis are painful. Everyone says to wait and see if it gets better, but I am looking at memory care places.
I wonder if there is a financial agenda to keeping her in her current room: it is one of the expensive ones and the AL has a lot of vacancies.
Hopeful about a place that is all memory care, great reviews.
ps Wonderful Greenhouse-based AL said no colostomy without any questions about overall status
Yes, pain can affect functions/thinking. But I think you’ll never get a clear answer, with the dementia. Unfortunately, I think you have to deal with what you do know.
Does the wheelchair adequately help her move around? Could it be moved away and only the walker next to her?
“Wait and see” seems awfully hard on her- and you. I’m dealing with something where all you can do is wait and heal, deal with OTC. It’s entirely different with dementia, where she can’t describe, can’t find her own workarounds. (And my doc gave me an informative chat about how emotions can worsen pain perception.)
I’d be tempted to ask her doc, voice this new question about the pain, see what can be done, or even tried, if it is the pain, not rely on staff. Best to you both.
