Good evening, caregiving friends…
Mom has had a really difficult couple of weeks. Her legs are not working well at all. Some days, they won’t support her weight and she’s been in the wheelchair all day. On these days, her confusion gets much worse as well…which just complicates everything. I feel almost guilty for mentioning how difficult it is getting, because I know that some of you are dealing with even tougher caregiving situations, and doing it all on your own with no other help. But, I have been having increasing back problems over the last few years and some nights I can’t sleep because of the pain.
A few weeks ago, my sister and I went to look at local nursing homes. Really depressing day, and all it did was to reinforce that my mom will never be in one if I can do anything to prevent it! I did mention to her physical therapist that I was trying to be open to other options, and she recommended an adult family home in the area.
On Wednesday of this week, I called and spoke to the owner. I was very impressed with what she had to say. She is a senior social worker with almost 20 years of experience. Her friend and co-owner is an occupational therapist. Most adult homes will not take someone with the level of care that Mom needs. (She has very little use of her hands, is very high fall risk, and on bad days needs full transfers. On good days she uses a walker with a transfer belt.) This adult home is able to handle Mom’s needs. After the conversation, I set up a visit for the next day.
On Thursday, my sister and I went to check out the home. The first clue that this might (and it’s a big MIGHT) be Providential in nature was that the property the home is located on is just across the gully from where I was born and grew up. My parents lived on a hill with a view to the west, and even though Mom loves living here next to me, she has missed that view and the beautiful sunsets. This adult home has a nearly identical view, with a huge porch along the southwest side of the house. The master bedroom is available, with French doors leading onto the deck and a private bath. Fresh air and access to the outdoors is a huge issue for my mom. My sister and I were very impressed with the house, and asked Mom to take a look.
Tonight we took Mom to see it. She did love the view, and seemed to really enjoy interacting with the two other seniors who live there. However, she was completely overwhelmed. I tried to talk to her about it after getting home, and she said, “I’m tired. I am not going to think about it tonight. We’ll talk tomorrow.” Then she fell asleep promptly. I’ve always envied her ability to do that! I’ll be up half the night with the wheels in my head going round and round.
I am really impressed with what I’ve seen of this adult home. If I could make a list of what I was looking for, this would be it. But…it is not MY home, nor my Mom’s right next door. The thought of someone else caring for her (other than the two caregivers that help me now and I know so well) is absolutely scary. This adult home will allow me, or other family members or close friends, to spend the night with Mom anytime we want. That is amazing to me, and more than I hoped for.
My sister and my brothers want me to try to trust, to try to give it a chance. They know I am tired, and that I’ve been doing this for five years, and that my back hurts frequently.
One other element of this that I need to mention is that this is a home that does not normally accept Medicaid. Mom is not on Medicaid now, but we are running out of money and it will be a necessity within the next year or two. They have said that they will accept Medicaid if we do two years of private pay. I feel like if I don’t give this a try, there is no way that I could find something as ideal (other than home) later.
I need all the input I can get to make a wise decision. Have any of you had positive experiences with good adult homes? Negatives are welcome, too, but I have heard many and my mind has conjured up more.
I am so torn. Part of me can’t imagine what it would be like to be able to be just her daughter, and not her caregiver. I’d have so much more energy if I could just be there to visit, play games, take her out for the day or overnight, and not have to do all the caregiving tasks that are necessary each day. The other part of me is thinking that she is my mom, and it is my right and responsibility to care for her.
Sorry this is so long. Thanks for listening, and please share anything you can. We only have until Monday to let them know and start paying a deposit to hold the master bedroom. I am leaning towards asking Mom to try it for a month, and then assessing how it is going.
You are a disruptor. The delivery of health care starts with you, continues because of you, and ends with you. Let's disrupt together to make the world better for family caregivers. 
Karen
My experience is not from my own family, but from fairly close friends…so somewhat second hand. We have a friend caring for a sister who had a stroke. When our friend became physically unable to care for her sister, she turned to a local social worker for advice and got a list of adult family homes in the area. She found one close to her own home, run by a family. They welcomed unlimited visiting. Although it was initially a difficult decision, it turned out to be the best thing for everyone. The sister loved it there. She made friends with the other residents. While she was able to join in, she had communal meals and activities. And the family was able to and did visit daily. After a second stroke, this lady became bedridden and had to be fed and changed. They had hospice services and visiting nurses, so that she got specialized care. Our friends and the caree herself said that the caregivers there were very kind.
Since I take care of my mom, I totally understand your feelings. Like you, I truly do not think that anyone can provide the loving care that I can. Like you, I have heard many bad stories, but this family home experience was good for everyone involved. The fact that they allow family and friends to visit anytime sounds very positive to me.
The situation you describe sounds very good. However, I know this is a very difficult decision for you.
Sharon
It seems like your heart and head is telling you to try this. If you can afford it, this place sounds wonderful. I can understand your torn emotions, however. This constant making decisions for your caree and hoping (wondering, if it is the right decison is wearing.
Denise
Hi–I think it’s wonderful that you are sharing this decision with us. Thank you!
To say that this is gut-wrenching for you would be an understatement. So, be gentle with yourself throughout the process.
My suggestions:
I believe that a care facility is an extension of a family’s care, not a replacement. Your care and involvement will be just as important for your mom if she lives somewhere else.
The budget aspect is really important. You are wise to realize your options become limited (and not in a good way) as your mom’s assets decrease.
I think your idea to try the home for one month is a terrific one. You all get a feel for how the home is run, how well you like the staff and how well your mom enjoys the environment.
Will you let us know tomorrow what you decide?
The Unit Known as Shandi
Thank you all for your input. And, yes, it is a gut-wrenching decision! I am dwelling much in the land of “what-if’s”. What if she falls during the month trial? What if the change worsens her confusion? The list is long. I know you all know what I’m talking about! Still, there are just so many things right with this opportunity that I think we need to give it a try on a short-term basis.
Karen, thank you for the positive about an adult family home. I, too, think that unlimited visits is wonderful and the fact that we can put two twin beds in her room and spend the night anytime is amazing to me. We would even be able to use Mom’s private bathroom when we are staying there! Denise, one reason I am trying to remain open to this idea is that I believe that the owners of this adult home do believe that their function is to be an extension of Mom’s family.
We can afford it now, but only if we try it now. We have enough left to meet the two years of private pay and that’s about it! That is one of the strongest motivations for trying this. Mom has said that it would be a relief to not think about what she should do long-term, which tells me that she fully understands the situation.