Never ready for this

I know from experience with my father that getting out of bed without assistance becomes a problem for many. I am surprised that none of the facilities have gone to some sort of alert system for this issue. It does not prevent a fall but certainly would alter them that the patient needs to be checked, otherwise they might lay there a long while.

Lowering the bed, so the fall is less traumatic, was the only solution acceptable at Dad's facility. We also had them move nightstand from the head of the bed to prevent possible head hitting it if a fall occurred.

Other options such as a fall mat or mattress next to the bed were deemed unacceptable for staff safety reasons. Also bed rails were not acceptable due to patient safety.

Even a full time sitter might not prevent a fall…as much as we would like to think they are at the bedside and alert every minute, they can't be.

Does your hospice group have their own facility? Some do have limited space where they take on the responsibility of 24/7 care and are not necessarily subject to the same rules and regs.

It seems there are a never ending series of issues to try to keep out loved ones safe.

You will do the best you can for her, there is no doubt.

@M1 Dang it. Yes, I know the feeling. And that DNR. But DH is going on 2.5 years with hospice support because he was having such wild swings in his stability and — well you know the "prepare for their worst day" care philosophy. He also graduated off briefly if you recall, but in the meantime there was more streamlined support and expertise dedicated to constantly assessing and proactively addressing his needs.

I also had the Do Not Transport, as well as Do Not Resuscitate discussion. It leaves you feeling a little hollow but I know that's what he wanted and that it is also for the best. Most kind, sensible, etc. Still.

So, you possibly already tried the bed or floor alarm and learned that every time they move and/or shift their weight in bed, it goes off. All that did was serve to startle and awaken my DH when we tried that for his respite stay at MC, due to the same laws and barriers mentioned in a couple of posts above. That made no sense because I hung around for the first day he was there and no one (no one) showed up to turn the alarm off. Good thing it was a false alarm every time and he did not really need help. They were busy and also I don't think they could even hear it when his door was closed, which they preferred!

We have the same issues here at home but - I'm here doing little else but keeping him from moving too fast or falling. And still it is getting kind of challenging to keep him safe. I do wonder if at some point you could take her home with a live in helper (a tenant maybe?) Especially now that a hospice team may be coming on board. I think that would mean she should have access to at least some respite hours that might offset a month at least (Whoopee, I know. The cost is criminal and the carers do not get much of that fee or they'd be more reliable I'm sure). But I'm just wondering if there was a way to create a small-ish space for her and block off access to the rest — but I know that may not be realistic.

Well, we can never say never with dementia. I'm sorry that you are having all this to deal with, but grateful that there will be additional assessment and ideally support, one way or another. BIG HUGS TO YOU.

Ny DW's MC has electronic monitoring in her room. It doesn't record audio or video but it detects falls and it works. Won't prevent a fall but at least the staff will be alerted immediately.

Falls are my biggest fears to. I think about bringing her home all the time and if she has a serious fall while there I will feel very bad and guilty but there is no other way but I still mull it over daily.

QBC is the voice of reason - all very true.

M1, I had the same feelings about bringing on hospice but it was really a big help. DW gets more help with a dedicated aide to help her with lunch 5 days and a nurse/chaplain/social worker checking in on her. I have also had the same thoughts about bringing on a 24/7 companion, the cost to have a dedicated aide on top of the MC cost would be to much and I would definitely consider bringing her home. I hope you can find something that works.

No advice or suggestions just hoping for peace for you and your partner. Take care of yourself too.

I would start a search for live in help. If you can not find suitable then you have your answer.

I would go so far as to temporarily move to a house closer to town.

@M1 - I was so relieved when Peggy went on hospice. She got so much more attention, and my stress levels started coming down, especially once I saw how competent and helpful they all were. She got a better hospital bed, and a reclining wheelchair - both good things. I just can't say enough good things about them.

Something that I haven't seen mentioned in this thread yet, is the possibility of small group homes. I don't know if there are any in your area, or how they are licensed. I strongly considered this for Peggy. In California (I don't know about other places), they're set up in an actual home, with usually no more than six residents, if that. The few that I looked at were well-staffed. Hospice offered to get her placed in one if we decided that would be best. It was very tempting. Since Peggy also had FTD her behaviors were problematic (to put it mildly), and the thought was that with fewer people, less noise, less drama during mealtimes, it might be a good fit for her.

I ultimately decided against it because I was worried that Peggy would become even more confused about her surroundings. She really liked her room, and it was familiar. Plopping her down in a completely foreign space seemed kind of risky to me.

But maybe it's something that might work for the two of you? If small group home is well-staffed, and there aren't many residents, maybe it's kind of a compromise between memory care and trying to get caregivers (and you) to watch your partner 24/7.

It is definitely time to crunch all of the numbers.

My suggestion to a temporary move did not include selling the farm. Closer to a town would get you more help and you could do the farm commute.

I personally would do some animal "homing" now unless you were the one who wanted them.

I would not give up on finding care help even in the country.

Keep thinking out of the box.The answer will come but do not expect it to solve all of the problems.

@M1 It's too bad that there aren't any licensed small group homes where you are…. it was a thought.

I'm glad you and your partner were able to have that lucid conversation and that there is nothing left unsaid.

Dear M1, I’m sorry you are having to call in hospice. Things can change so fast with our loved ones. I don’t know if we can ever be truly ready. I don’t have any advice. Just know that you’re in my thoughts and prayers. sending hugs.

Brenda

Thinking of you today and praying too.