Talk to be about DVTs in multiple places in the leg…my dad is 75% wheelchair bound…leg is very swollen and they are using xarelto to break the clots up but I am worried his mobility will be more impaired which will mean a move from AL memory care to SNF…
Sorry Aekmom. Is he in the hospital? I hope he can stay where he is.
I just wanted to report that involving hospice has made a huge difference for my mother. Despite her medical problems (including severe diverticulitis, congestive heart failure and a few other things), she is on hospice for dementia.
She is still only up 4-5 hours/day but is clean and well-groomed, walks a little, and has more energy. Today she even tried an art class (well she couldn’t get out of bed until it was almost over, but she went!_
As I wrote before, she is not near death. So many people have commented that they thought hospice was only for those near death. If anyone needs these services- nurse, aide 5 days a week, social worker, volunteer, chaplain, doctor- it is all covered by Medicare. Support for me too. Highly recommend this path.
This forum has been so helpful.
He is in the hospital…they were just going to send him back to the ALF until they found a uti…he had a fever and they werent sure if dvt was causing it. I begged them to keep him anyway…if he had gone back he would have fallen and been back in the ER last night. The eternal struggle of ALF vs SNF…what is the trigger point? NPH that even with shunt significant cognitive and mobility issues plus foley Cath now plus large dvt with swelling and pain…is it time?
@Aekmom- treating the UTI may help determine his medical/cognitive status. UTIs can exacerbate cognitive symptoms in the elderly. You may be approaching the time; worth reviewing his total medical and memory picture with his team.
My father moved from AL to skilled nursing memory care; I am empathetic to the process. Do you have a specific SNF in mind? If so, is part of of the AL facility where he is now? This is such an individual thing and YMMV, so I share my experience understanding that it might not be relevant. For my father, the move was made when I realized how hard he was working to keep his head above water in the AL, combined with an increasing concern that the other shoe would drop and he would no longer be appropriate for that level of care. In hindsight, it was the best decision for him. While he had moderate memory loss then, he was socially appropriate (and remained that way until his death 4 years later) and interested in others. The built-in nursing care (he had a blood clot to monitor also), combined with the prompting for the activity options gave him the best quality of life possible. The nursing staff got to know him (and he them) and he enjoyed the routine until it was hospice time. It was having the disruption of his best AL friend leaving that made staff and I aware of how compromised he was. On auto-pilot he looked pretty good, but when the routine with her shifted, he clearly lacked the memory to make plans with others and enjoy his days. A quality nursing facility can give everyone peace of mind, with easy access to considerable medical care. While I tried to put it off as long possible, my fears about it were not realized. It was relief when the head nurse at the SNF told me that no matter what comes next, they could care for my father until his death. All the best to you and your father.
“Keeping his head above water”
That is the perfect description. It was stunning, as I’ve posted before, to see FIL’s decline when moved from his home of 50 years where he purported to be in charge of his life in his late 90s to the IL. Ten days later I moved him to AL as just the basic actions of getting up in the morning and doing life exhausted him, he could not cope.
Have meant to share this link with many useful resources: https://eldercarematters.com/
How are y’all handling dental care for the parents with any sort of dementia? Per the suggestion of @jym626 we have been given a diagnosis of Lewy Body. I find any trek out of the house is exhausting, both mentally and physically for my mother. A haircut or a check up can only happen on a good day and she may spend the next few days in bed. She is over 90 & was previously doing cleanings twice a year and rarely has had any issues, cavities, etc., she has her own teeth still. Do I stress her with cleanings? Risk waiting for tooth pain?
I’m curious to hear responses as well @somemom. My mom is stage VI ALZ and taking her out of memory care for anything “unpleasant” is awful. We had to take her to get her eyes checked this Fall, and she behaved as if she was in the ER and having painful procedures done. It was a regular vision exam. It was really difficult for her to follow any kind of instructions and totally wiped her out. She’s also become much more reactive to any kind of discomfort so I’m thinking that the dentist would be a nightmare for her, plus not so productive because I don’t think she’ll open her mouth.
She does have an electric toothbrush and the staff help her brush every day. She also has her own teeth. She’s not complaining at all and my understanding is starting in January, they’ll have a visiting dentist come to the facility to do basic checks. At this point we’re waiting for that happen even though it’s been two years since her last visit.
Again, interested to hear the experiences of others.
I’d wait for tooth pain. At her age, it is probably gum problems that will hurt anyway. My dad’s teeth are OK, but the gums receded and he has about 1/3 of his teeth left. My mom had dentures and wore them in the AL/MC place up until the last year. Then she started to fuss and hide them (and also pocket food in her cheeks). Eventually she stopped wearing them and they fed her soft food. It was fine. Less choking and less poking at her for grooming.
My BIL is in a not so good MC place. (He just moved to an even worse place, but there he has an old parishioner (he was her preacher) as head of staff so she makes certain he is well cared for. (If she wasn’t there I’d worry). But the first place NEVER got him to brush his teeth in 2 years and his gums looked terribly inflamed. When we went this year, they looked a lot better.
So I wouldn’t fuss at a person for daily brushing, but I would query the AL staff and ask that any issues for that be reported. If someone were in my house, then I’d try. Just not fight over it. It really isn’t necessary every single day, twice a day… that is to keep your teeth for 70 years. Once past that, I think you can do OK with fewer brushings. Dentist visit was out of the question by my Mom’s last year of life…but she still had her hair fixed!
I don’t take my Dad to the dentist. He doesn’t cooperate (screams,yells, attempts to hit) with simple ADL’s like taking a shower or even letting someone take his shoes off, I can’t imagine taking him to the dentist.
… ^same. I’m not introducing any additional stress at this point.
I think it’s best to think of risks/benefits. @somemom, it seems to me that any tooth/gum pain from a lack of cleaning is a long way down the road, while there are immediate and severe consequences to taking her to a dentist.
This is kind of embarrassing to admit, but the last four weeks of Dad’s life we didn’t brush his teeth. His brain was intact and he didn’t want any brushing. So we said okay. We knew he wouldn’t live long enough for it to make a big difference. If we thought he’d live for months, we might have pushed for at least brushing with an electric toothbrush. But we knew he had weeks, not months, and we let him live on his terms.
Faced this issue with my now deceased father. It seems that it is often at at the point where things begin to be mega-stressful or nearly impossible, it is also the time where it doesn’t make sense to pursue them for additional reasons.
People did the best they could; we all kept our eye on the prize: keeping a frail senior as comfortable as possible and not escalating stress or expectations. Sometimes it was poignant, but when you see it unfold, it’s easier embrace the liberating aspects of the approach.
For a little humor, my DF’s dentist told us about a patient in his 80s who broke a large front tooth. He smoked a pipe and was thrilled with the gap. Dentist didn’t argue and there it stayed. I appreciated that dentist as he was great at cost/benefit analysis for seniors and kept it real.
There was a period of 3-4 years during which my former MIL (who has Alzheimer’s disease) was not bathed. At all. It seemed that I was the only one concerned about this. Given that she survived this long period of dirtiness, I think a few months without tooth brushing and dental care is fine.
My dad, who lives in a VA home, is required by them to visit a dentist twice a year. Mom, who lives with us, hasn’t been in at least a year. Between blood sugar crashes, two hospital visits, and renal failure / dialysis, it’s just not a priority.
https://www.genworth.com/aging-and-you/finances/cost-of-care.html
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Adaptive clothing
https://www.costco.com/mens-clothing.html?features=adaptive-clothing&refine=ads_f142553_ntk_cs%253A%2522Adaptive%2BClothing%2522|
So today as I was looking for something on Costco’s website, I saw a link for adaptive clothing in the men’s clothing section. These garments may be helpful for some of our dads who are having trouble with dressing. I didn’t find any adaptive clothing items in the women’s section,but still, this is definitely a start in the right direction.
Thought this might help someone.
Speaking of adaptive clothing, I’m not sure if this has been mentioned but my father was helped by this device to put on socks: https://www.protherapysupplies.com/Patterson-Medical-Flexible-Stock-and-Socking-Aid?gclid=EAIaIQobChMI1L3kidGe3wIViCCtBh3nHgd-EAQYBSABEgIdrvD_BwE&source=googleps
I walked in to find my mother trying to raise the head of her newish hospital bed with her Jitterbug phone. Another day in the life!
We have a family meeting with the AL and hospice nurse this week. I am nervous because this was prompted by my concerns about the heavy duty meds in the hospice box, agency LPN staffing at AL with folks who don’t know my mother, and a couple of instances of inappropriate use of morphine or Ativan by both AL and hospice, with risk of falls with no real benefit. (MD doesn’t want either.)
In other words, the impetus for the meeting is a bit negative and I want to keep things positive. Doing Tai Chi all weekend!
For three years I have had to do all the PRN meds (pharmacy in my car) because the AL said nurses there could not evaluate for extra Lasix, extra prednisone, gout, pain etc. Now all of a sudden they can give morphine and Haldol.
The other issues involve communication. My mother had severe abdominal pain overnight for a full month before I found about it (and I am there almost every day). The AL never told me: I got records. Her diverticulitis was very severe by the time I took her to the ER.
And morphine this week for relatively minor knee pain could have been avoided if the hospice nurse had called me (as I keep trying to arrange). My mother is dramatic with her noises about pain. And if she wears compression stockings the edema goes down in her knee and the pain is better. Tylenol is enough.
I tried to have a diplomatic conversation with the hospice nurse about the morphine and she was defensive and asked if I had maybe given her something else! She also implied that maybe my mother should come off hospice if she doesn’t need their meds.
I have a bit of PTSD from dealing with a kid with health issues at local schools. Lots of meetings. I learned to start off with a joke, keep the focus on the person being served, and always tried to work cooperatively, but so many painful years. I am very nervous about this meeting!
I would be fine, at this point, with my mother coming off hospice if the AL aides could manage even a fraction of what the hospice aide does. I understand she is a tenant at the AL but wish the aides would push just a little more. Getting ready to deal with poop again!!
As hard as I know it is for many of you, there are times when I wish I could just live with my mother.
edited to make this shorter and take out some of the whining 
Oh, compmom, THIS IS the place for maximum whining! Go for it because even the cyber whining helps and we know that life/this season/things make it hard to whine IRL. Good luck on your meeting!
I have seen from several people that the AL/Hospice dynamic is difficult. Either they become enemies to each other (turf wars) or the AL people abandon all help (without reducing costs) and leave it to hospice. I was glad to have my mom on hospice because they could give meds, although they took Mom off almost everything, which I also agreed with. It is so tough. And I fought to keep hospice because medicare paid for it and I could keep Mom’s costs down for getting enough care.
There is/was no way on earth I would have lived with my mother, but I had often wished I lived in her town so I could get her better care daily. At the end, I just decided it was better I didn’t know and Mom was ok enough although not perfect care. At least the AL Memory care was very kind and good to her and liked her. That was about all that matters in the end.