An Old Question With Many Answers

VKB

When I took care of both my parents at home, I certainly did not always make the right decisions for them and for myself. I understand everyone here must find their own way and no one should criticize. I tried to do my best and certainly there are many here who are doing the same.

I often write about and admire loving, caring at home caregivers who are giving up large chunks of their lives out of love or loyalty or both. I have often wondered, when does Memory Care or a Nursing Home Care become the kindest decision for the person cared for, the caregiver or both of them?

Ed1937

I have a simple answer for that. That's when the person cared for would get better care from a facility than they would at home. That could be for different reasons, like caregiver burnout, progression, or multiple other reasons.

MrBurns

This topic arose at the most recent caregivers' support group meeting I attended. One participant was nearly at the end of her rope, but had such guilt over the possibility of sending her husband to a care facility that she hadn't been able to do it. She's struggling with his incontinence, having trouble lifting him to help him in and out of bed and chair, etc. Her husband's physician and her grown children are all advising her that it is time. The consensus in the room was that it's past time.

One person mentioned that once she has him where others can take care of his basic needs, that will free her up to provide him with the extra care she can't do now. It can help her move back into the role of "spouse" instead of "caregiver".

I'm still very early in the journey with my wife, so I certainly don't know it all, but I'm learning all I can. One thing I learned early on, which I keep repeating to myself: "This disease will take one life. If you're not careful, it will take two."

I think about my Dad's last few days of life. Though his mind was sharp, his body had given up. My sister and I were taking turns staying with him 24/7, but we knew we couldn't keep that up. We had trouble getting him to the toilet, because we aren't trained about the right way to lift, etc. He said we were hurting him when we tried. When we were able to get him to hospice, the loving professionals there took over. They treated him with dignity, and they knew the proper way to handle him to avoid unnecessary pain and discomfort. He passed away peacefully 29 hours later.

Again, I'm still early in the journey with my wife, so take my advice with a grain of salt. But if caregiving is slowly killing you, and you're no longer able to give your loved one all the necessary care, it's probably time. I'm sure when my time comes I'll have the same feelings of guilt, but there are no easy answers or good outcomes with dementia. Sometimes we have to choose the "least bad" alternative.

You have my very best wishes.

jfkoc

Just my thoughts;

Selecting care is a terribly difficult task fraught with uncountable ins and outs...And on going situations make for changes along the way.

Home was the right choice for both of us but at any time it could have been the wrong choice and changes would have to be made.

I think each of us weighs the situation as best as is possible and then hopes the best decision is made all things, all persons considered.

I was able to have my husband in his own (or later a Hospice) bed. However I had Plan B at the ready.

I think the element of choice in the equation is an important factor. You and I both chose the home care path. I do not think that I gave up anything to do that and I certainly do not deserve any admiration for being at home with my husband. There was no other place I wanted to be. Others will feel differently. They certainly deserve a pat on the back. Especially those who feel they are giving up their lives and have no options.

One thing that we seldom discuss is the possibility that our loved ones might have done better living with others in a facility. Some do thrive.

We also almost never discuss that placement is not permanent. If it turns out wrong we get a do over.

M1

Glad to see this discussion. Having been forced by circumstance into placement, I have to say that I think/sense that there is still some anti-placement bias in the forum. I feel guilty that I wasn't able to keep my partner home, or keep her home longer.

I am lucky that I could afford it. But that wasn't the deciding factor; i know it is for some. The deciding factor for us was her threats of aggression/violence--which have never been repeated in MC--and inability to hire help at home in our rural area. I don't think that has made me any less loving or less loyal to my partner than someone who manages to keep their LO home.

I do think we need to acknowledge that every circumstance is different, and we all make different choices for different reasons. As you said VKB when starting the thread, this has been answered a thousand times over.

Joe C.

I agonized over placement before pulling the trigger. I never would have believed this beforehand but placement was absolutely the best decision for my wife. Placement provided so much enrichment to her life through activities and socialization that I could not provide at home. I am very fortunate that DW is very happy in MC, I visit her 5 days a week and often find her smiling, singing, dancing or laughing. My cell phone is full of short videos of her enjoying herself. I have attempted to upload some of these videos to this site but it does not appear it allows video uploads.

It is true that placement allowed me to stop being a caregiver and return to being her husband and advocate. When DW was home I attended to all her personal needs which often made me the bad guy. She hated bathing, taking medications, help needed with bathrooming, etc.This always made me the bad guy and created stress for both of us. I learned through my experience that placement can provide the best quality of like for our LOs.

BPS

I am sure this has been an issue discussed many times but I appreciate hearing what others think and have done. I know each case and situation is deferent but by hearing what and why other have done or think helps me in dealing with my unique situation. I will be checking back to see what else is posted. Thank you.

sandwichone123

I think when a family member is burned out and feeling guilty for considering placement it's certainly understandable. No one wants to think someone else could care for our loved one as well as we can. One thing that's sometimes overlooked in this situation is that no one would be caring for our loved one. The caregivers at a facility have a team--they have someone they can call for help, they're only on duty for 8-12 hours at a time, and they have days off. These are all advantages that home caregivers typically do not have.

Cherjer

I am very fortunate to have wonderful caregivers that help me take care of my DH at home.. I could not do this alone as my DH takes two of us to care for him...getting him up in the morning and to bed at night. Plus helping him walk during the day and meals.

My DH was not one to engage in activities that are provided at the MC facilities. Even at day care he would not engage in any activities. I knew that a MC facility or a Board and Care would not be an option for him and that is why I have chosen to keep him at home. He has been on Hospice for a year...that has been a life saver for me. If I did not have the caregiver help, there is no way I could keep him at home.

We all have different circumstances on our decisions...there is no right or wrong way on how we handle this difficult disease. Everyone on this forum has unique situations.

Whatever you decide will be the right decision.

ButterflyWings

Our situation is similar to Cherjer's. We have been so fortunate to have circumstances allowing me to keep DH at home which continues to be the best setting for him and is my preference as well. Also fortunate because he depleted assets in early stages before we knew what was happening to his brain, so I could not afford MC even if I wanted. The difference in our ages would make me at risk and well below the poverty level if I had to spend down to what our region allows surviving spouses to retain. I'd be foolhardy to do that.

His condition was volatile at more than one point immediately before and during early days of the pandemic and what was happening in facilities made that not even be something I'd consider unless and until it was the only option for his safety or mine. His status landed him in hospice by Stage 6 and that has been a godsend -- with the help he deserves and I need as 24/7 primary caregiver. The last 5 years on this journey have been hard but manageable with help, and it is clear that the time and energy required of our forum mates whose LOs are in MC is still significant. I applaud the strength and self-lessness of those who make the MC move. None of this is easy.

M1, its interesting what you mentioned about an apparent home care bias here (my words not yours). I think this forum ebbs and flows. When I joined, there definitely seemed to be far more members favoring and using MC, and the sentiment seemed almost like it was a given. Lots of encouragement or assumptions that "placement" is inevitable, and it was often discussed as the expected or even only solution to managing our LOs progression at some point as in, someone would post a dilemma and hear lots of "it's time to place him/her" responses. I even recall some hurt feelings expressed by a few people who felt like they were judged for keeping their LOs at home as if they were denying them socialization or automatically better care from "the professionals", which is not necessarily the case as we know. Every situation is unique just like when you meet one PWD, you've met one PWD as we say.

It is gut-wrenching either way, and all of us are just making the least worst choice among the limited options -- both of which suck rocks. What I / we really want, is a cure or just a miracle so our LOs and we can wake up from this nightmare and get on with our lives dementia-free.

Ed1937

This is another situation much like Joe C's. My SIL was in a MCF, and she thrived there until just before death. She would often dance with the personnel there, and was always happy. Maybe that had something to do with her normal personality because she was always the life of the party. But being in a facility was good for her.

Jeanne C.

I'm glad to read this discussion. I often worry that I'm wrong to keep my husband home. Yes, I have definitely moved from wife to caregiver. More so because we've had so much trouble getting reliable in-home help (we're currently without an aide). But I feel like it's the right decision for now. He is ambulatory and mostly (knock wood) continent. With med adjustments, we've been able to keep anxiety and agitation manageable. He gets activities and socialization through his daycare in the morning and we've got a good routine for afternoon and evening.

But, I have a plan B. I have two nice MCs within 15 minutes of home and will place him the moment I feel it's better for him. I think all any of us can do is hope for the best but plan for the worst.

I'm adding a link to this thread to the new caregivers group. I think it's a valuable one that people may want to look at in the future.

ImMaggieMae

I think how to care for a spouse is a very personal decision and there are so many variables. The best setting for my husband is in our home and as long as I’m around, that’s where he will stay. Lots of challenges, but I will find a way. He is around stage 6/7. I don’t bother worrying about stages anymore. It is what it is.

My sister has lived here for over 20 years and while I do most of the caregiving like dealing with meals, medications and incontinence, she is around to keep an eye on him (sometimes a falling risk) while I’m preparing meals, paying bills, or dealing with household repairs. We have a caregiver through an agency who is here 3 days per week for 4 hours at a time. As Cherjer mentioned, we will probably need additional caregivers in the future to help with getting him in and out of bed and doing more heavy lifting as it becomes necessary. I’m renting a hospital bed for him since late last year when climbing 15 stairs to our bedroom became too much for him. I sleep on the couch next to him every night. I can hear him breathing. He needs help with all of his ADL’s now, but is mostly cooperative when he understands. His empathy which disappeared for a time in the early stages, returned with changes in medications and still remains.

We are lucky to have a good neurologist who treats me as a partner in managing the couple dementia medications he takes, including Risperidone,nwhich has been a wonderful drug for him, and Memantine. Dosages and schedules have changed over the past years but have been very helpful without making him drowsy most of the time. I’m thankful that I can make changes in the meds within certain parameters and I check in regularly the their office in addition to appointments every 4 months or so. He sleeps soundly all night.

Yes, my life and moods revolve almost totally around him. But I know he gets enough to eat and has a healthy appetite and his pants are checked and changed if necessary every couple of hours and he’s clean. There’s much frustration with the disease and knowing no matter how hard I try, things will get worse and his time is limited. I want every minute I can have with him. I love him dearly, even as he is now. I feel much sadness. I still hope for miracles. We all do the best we can. For me, this is it.