Never ready for this

M1

I met with hospice intake today and the nursing assessment is scheduled for Monday. Part of me is protesting that it feels too soon. After all, we sat outside this morning, ate lunch in the community dining room. But: they will get her an adjustable hospital bed, which I think will be much better for her back; and they will take over her pain management, which I think will be easier. We gave her her own television in her room yesterday, and she is happily napping right now with HGTV in the background (after all, home construction was her bread and butter).

I’m still at a loss regarding 24/7 supervision or sitters. She’s not safe in the room by herself. They won’t allow a camera—interestingly not because of her privacy, but because they don’t want the aides subjected to camera surveillance!! That had never even crossed my mind. One on one is $37/hour so up to $6200 more per Week if it were continuous. She has a lot of money, but that’s ridiculous. Makes me consider taking her home, but there are so many physical hazards there that I don’t think we could do that either.

What a moving target. It’s been an eventful week.

Rocky2

M1,

I'm sorry that you are at this point in the journey. IME hospice was a huge help. I'm glad you are bringing them onboard. I think in some ways the short period just prior to my DW's active dying was the most anxious for me as she tended to get up out of bed and restlessly wander, often resulting in a fall. I can relate to your angst and wish you well in your care decisions.

Tom

loveskitties

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.

Quilting brings calm

wow M1- how quickly life can take a turn. You mention not being safe in her room. Do you mean because of her recent fall, and the possibility of a repeat of that? Can you get by with one of those bed alarms so that the staff is notified when she gets out of bed? Because $6200 a week adds up when you have no idea how long before she won’t attempt movement on her own.

jfkoc

I was relieved when Hospice came on board. They started when we started12 hour shifts. I would keep the idea of a return to the home a possibility. If not now in the near future. It will be easier on you to have her with you and with 24/7 care safety should not be a problem.

I am sorry this moment has arrived….there is no preparation for it….just one foot in front of the next.

Denise1847

https://alzconnected.org/discussion/69471/never-ready-for-this

Hi M1, I am so very sorry. Just to add to other suggestions… I used to volunteer visiting hospice patients in a nursing home. I saw some of the patients lying on mattresses on the floor. It is not optimal, but it kept them from falling.

ButterflyWings

@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.

M1

yes bed alarm has not helped…all of the falls have been unwitnessed, not clear that they’re related to getting out of bed or trying to get to the bathroom. She spends a lot of time just puttering in her room and that’s when I think they’re happening, but not sure. That’s where I really feel like a camera would help.

I still have fantasies of bringing her home- but as mobile as she still is right now it still feels overwhelming. And this is where distance becomes an obstacle- we’re 45 minutes out in the country, which may limit caregiver availability and also which hospice we can work with.

I know there’s nothing to do but play it by ear day to day.

ghphotog

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.

Quilting brings calm

@M1 - I think your concerns about bringing your partner home are valid. The MC is staffed 24/7. They may not be able to prevent falls, but they are at least present to deal with the aftermath. The staff doesn’t leave during working hours to run personal errands, grocery shop, do chores on the property or just to get away. The staff doesn’t sleep during working hours, and someone is available when other staff shower or use the restroom. There aren’t knives available for your partner to threaten them with and the vehicles aren’t accessible for PWD. These are all things you have to consider before attempting to bring your partner home. You won’t be able to prevent every fall from happening any more than the staff can.

ButterflyWings

QBC is the voice of reason - all very true.

Mint

Enjoyed your post QBC, good reminders and thoughts.

Joe C.

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.

harshedbuzz

@M1

It has been a week for you indeed. It's a difficult place in which you find yourself. I recall my mom being at this juncture and the unique sense of urgency around decision making.

I would be salty about the cameras, as that strategy to for their benefit not hers. That said, while a camera can provide evidence of a fall, it is in no way protective against one. To that end, even an attentive one-on-one caregiver, be it family member or carefully vetted professional, is going to be 100% effective in preventing falls. Like dementia, gravity is a bitch, and she always wins.

Regarding the one-on-one care— would this need to be 24/7? Is it your decision or being mandated by the facility? Would your LO even tolerate that kind of constant presence without agitation? To have a chance of catching her before a catastrophe, this person would need to be in her space when she is out of bed.

I think you are wise to focus on her physical comfort. Hospice would likely be better at the medication end of things. It's hard to say if she'd react more positively to the caregivers from hospice vs the MCF staff.

Mom said she wanted dad home with her at the end. He was a lot calmer in the last weeks of his life, and it could have worked. I don't know that it would have benefited him in any way; he thought he was clubbing with his brother and friends nightly which was, oddly, a blessing. I suspect she was a bit ambivalent in reality. She had a very hard time with the physical aspects of end-of-life and was relieved not to have been with him when he passed.

I did research options. Their home would have been appropriate for hospice care. I also talked to my neighbor who basically ran a single bed SNF next door for his first wife with MS and his second wife's mom with severe dementia using live-in caregivers.

When I moved my parents north, they lived in a 55+ apartment complex. Something like this could work for you if available in your community. According to the super, there were a number of families who eschewed the notion of a SNF and had moved their LO into one of the apartments with caregivers. He said that sometimes it was a married couple who both moved in temporarily because their home wasn't appropriate for this kind of care— perhaps it was an historic home with many steps or bathrooms upstairs. They'd move into the apartment for the duration with the intention of the widowed spouse moving back to their own home or dealing with its sale after. It's not an inexpensive prospect but compare to paying for MC and 24/7 care it may be a wash.

Thinking of you.

HB

GiGi1963

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

mrahope

Oh, M1, I feel for you. If only I had some good suggestions. Safety, finances, and your own coping abilities will all play a role in the decision you make. Hospice was a great help to us when my mom was in her last illness…but she didn't have dementia and was very clear about wanting 24/7 care at home. No two situations are alike.

jfkoc

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

Caro_Lynne

M1, if your LO qualifies for hospice, can they come to your home or is it too remote/rural? Since money is not an issue, I'm for the live-in help suggestion too, if that is a possibility. You must do what is best for both of you, and only you know what that is. We are here to support you xo

jfkoc

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

LadyTexan

Its a moving target for sure. One of the many things I hate about this disease, is that there are no perfect solutions. The options seem to be bad and bad. I tried to select the less horrible option based on DH's condition and the information I had at the time. It often felt like a roll of the dice.

Hospice was a tremendous help to DH when he was ill and a great help for me as well. I definitely had mixed emotions when it was time for hospice. In a peculiar way, I felt as if i was failing DH or giving up. Now I realize I was accepting additional resources for the inevitable progression of this disease.

I hate the falls. My mom (PWD) recently fell. Mom's caregiver and I were both in the room at the time, but neither of us was by my mom's side. Sadly, Falls are going to happen.

You and your partner are in my thoughts.

GothicGremlin

@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.

M1

I appreciate all the suggestions, i have a lot to think about. GG there are no licensed group homes here, sadly, i agree that might be a good alternative if it were available. And I'll just have to see how this evolves- not sure that moving closer to town would help, given the dog/the animals/finding someone to take care of the farm might just complicate things more. There are complicated tax reasons not to sell before she dies-plus there's no way i could take that on now, on top of everything else.

We had another pretty lucid talk today about her dying. Part of her is ready, and partly not. She says she's not scared. She has no regrets. We love each other so much and she can still express that, but i don't think she really realizes how sick she is. It helps to feel like there's nothing left unsaid between us though.

jfkoc

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.

Nowhere

M1-I’m so sorry to hear this. When did your wife start falling? Had she been unsteady on her feet prior to placement, or is this a newer problem? So many residents in my husband’s old locked wing nursing home were a hope and a pray they wouldn’t fall, and I have to say it’s the same now in his assisted living memory care. Too many with Alzheimers are weak, in pain, or have balance issues due to medication or because the disease is affecting their motor coordination. Tragically, many do not remember to use their walkers. Does her doctor know what’s causing unsteadiness? I think it would be the same risk for her at home. My husband’s friend had cancer and Alzheimer’s and the Hospice fentanyl patch to control her pain caused her to be more restless and up on her feet. It seems important for her doctor to figure out why she suddenly started falling.

GothicGremlin

@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.

Denise1847

Dear M1, My thoughts and prayers are with you. May you find solutions, peace and comfort during this even more difficult time.

White Crane

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

Vitruvius

I found the biggest benefit of hospice for my DW is the hospice RN who visits my DW twice a week. She always calls after to keep me updated. But her visits also give the MCF staff a chance to quiz her about minor issues that they would probably consider too trivial to contact an RN about otherwise. A number of times this has benefited my DW.

As for the issue of falling. I have no useful input other than to say that at sometime this too may pass in the heartbreaking decline of dementia. As such an MCF may still remain the best place for her care.

harshedbuzz

@M1 Thinking of you today.

Jeanne C.

Me, too.

White Crane

Thinking of you today and praying too.