Hi, new here. My Mom has lived with my husband and myself for 11 years. The last 5 years were rough and we got the diagnosis of vascular dementia. The last 3 years have been a downhill slide but the last 1 has been hardest. My husband works out of town and is home on the weekends. My sister will help twice a year for 2 weeks. Brother is in denial. I have had help with a day care center for 4 hours a day and some help with a home sitter. It is now to the point that Mom has to have help with all her ADL's and I am having a hard time continuing care. I feel guilty but have to think of myself and my health as well. My stress level is out of this world and has now raised my BP to unhealthy ranges. So, I have discussed care with my sister and we have decided to place Mom in a nursing home soon. What I don't know is how to discuss this with Mom and how to prepare for this time/day. I realize that is situation is only going to continue to decline but I never thought I would place my Mom. Any ideas? Thanks for opinions in advance!
My siblings and I started our caregiver journey with our parents around 15 years ago when they were in their early 70’s. As the years progressed, the caregiving became more intense until they needed 24/7 care over the last 6 or 7 years. At this time one sister moved in with them and announced that she was there for the duration. We continued to hire professional caregivers, in addition to our taking turns on a regular basis in order to keep the stress off my sister. Even so, we began to realize that our idea to keep our parents at home for “the duration” was becoming more and more difficult. As each crisis presented itself, we would have a family meeting (without the parents) to discuss what action to take.
It was probably a year and a half ago that we started to talk about Long Term Care in a nursing facility. They were too disabled for Assisted Living. A year and a half, maybe two years was how long it took. Not because of difficulties in finding a place or for financial reasons, though getting that taken care of does take time, but because it took us that long to let go of the dream. And it took us that long to get totally burned out. We did start to talk to our parents about how difficult it was becoming and we would drop hints. They both have dementia in addition to my mother’s Bipolar Disorder, but at times we were able to have reasonable conversations.
Placing my mother happened easiest. She went into the hospital for one of her numerous hospital stays, followed by several weeks of rehab at a nursing facility that we had already checked out as having long term care. It took us longer for my father because first, we had no hospital stay as a catalyst, and second, because we just couldn’t bring ourselves to take the final step.
My father joined my mother about two months ago. Guilt? You can’t avoid it. Just accept that it will be there. We all had rosy dreams of our parents living out their last moments at home, but the reality was bigger than our hopes. Some of the guilt has been relieved as I have come to realize that this is not a black or white issue. Care for parents at home = good children. Place them in a nursing home = bad children.
Know that your caregiving doesn’t end if your mother becomes a resident of a nursing home - you are no longer the primary caregiver. She is not abandoned, as you have to be there often to advocate for her or just to keep her company.
You asked how to discuss this with your mother, so I assume she is capable of having some coherent conversation. You might start small, with comments about your health, or somebody you know that lives at (some nursing home). Just know in advance that it will not be easy. Taking baby steps might allow not only her, but you, to get used to the idea.
Obviously, abruptly moving a parent into a facility without a prior discussion would not be appropriate in every case, but it may be the best alternative for a parent (or spouse) whose memory of places is nearly gone. Being prepared to stay with your parent in the facility for as long as the adjustment takes is a good idea. I visit my dad in memory care at least once every day and my wife visits him multiple times each week. I still consider myself to be his primary caregiver, but now I have a large, well-trained staff to help with his care (highest staff/resident ratio) and he has the added benefit of a lot more visitors (e.g. residents, staff and family of the other residents) to occupy his time. I truly believe he is in the best place for his condition and my only possible regret is that maybe I should have moved him into the facility a little bit sooner.
As it turned out, given how smoothly it went moving my dad to the facility, preparing for the move was the more difficult task. Over several months, I researched many such facilities, visited most of them, some several times, and visited the one I chose at least a couple of dozen times on various days of the week and various hours of the day and night. I have seven siblings, four of whom wanted my dad to continue living with me (at almost no cost to him and almost no visits from them) or for me to move him out-of-state to a veterans home where the monthly cost would have been less than half of what he is now paying. I refused to do that because it would be impossible for me to visit and help provide his care every day (even monthly would have been hard) and my out-of-state siblings would not have done that either.
And tell her as a family. You need their support and your mom will need their support. It's not going to be easy.
I had picked out a place well in advance. Mom went to hospital after a fall and I had her discharged to assisted living “Just till you get better”.
On day 4, I moved Dad, with moderate dementia, into the room with mom. “Mom needs you to stay here and help her”
Neither of them would have ever cooperated if I had tried to explain or get their approval. It was still HELL week for me as I was on my own.
This will be tough sledding for you but from your post it’s clearly time for facility care. The staff at my folks place were wonderful in helping with the transition.