My Dad is 74 years old and was diagnosed with Parkinson's disease almost 10 years ago, though he was showing symptoms a few years before diagnoses. He has also gradually developed dementia which has worsened significantly in the past year. My mom has been his caregiver and started having burnout about a year ago. My Dad is incontinent and has had several UTI's over the past year and was hospitalized for one last Christmas. My mom was in pretty bad depression at this time but started doing better mentally many months ago and takes anti depressants now. Over the past year she was only getting about six hours of respite care a week. A month ago my Dad fell in their apartment and broke his hip, had surgery and after three days was released to a skilled nursing center for rehab. Before the fall he was walking on his own though was clearly having balance issues, had a walker but would rarely use it. He also wandered out of their apartment the day before the fall early in the morning when my mom was sleeping. He was found by staff at their community who called my mom. After three weeks in rehab, insurance has stopped paying and the recommendation for him is long term care or 24 hour assist. They said he is a 2 person full assist with mobility (though I have seen one nurse aide be able to move him in/out of bed). My mom has hired an elder law attorney who is getting them on medicaid and my mom wants my Dad to stay in long term care. The current facility doesn't have a medicaid bed for him so we are trying to find another one. However, I am torn up over him living in a nursing home. I can't shake the feeling that he wouldn't have wanted this. He took his own mother out of a nursing home when I was one years old and my sister was three. He and my mom took care of her until she died six months later in our home. When he was young and healthy he always said that when he was old he would want to rotate living with his five children, but he and my mom never discussed his wishes once PD came. I have told my mom that I want her and Dad to move in with me, and together, along with hired help, we can take care of him. She doesn't want to do it - she doesn't want to move (she is happy living in their senior community), doesn't want to burden me, and doesn't want to lose medicaid and pay out of pocket for care (though I would help pay too). At times I am frustrated and angry that she won't do more to keep him out of a nursing home, but other times I understand that I shouldn't be asking so much of her and her own health may be on the line. The only other thing I can think of is to take him in anyway, let her keep living where she is (35 min away) and hire aides to help me. I have a one year old and a four year old and a husband who doesn't get home until 7:30 or 8pm so I won't even pretend that I can do it myself. Of course, then there is the issue of money. My husband took a new job and extremely large pay cut two years ago and we have no disposable income now, however we have a pretty significant nest egg from saving money for 10 years when he had a high paying job. We have plans to open our own business with this money in 2-3 years, and while rationally I know it may be unreasonable to spend a big chunk of it on my Dad's care, part of me feels guilty for not doing that. Part of me feels I should do whatever it takes to keep him home living with family for as long as possible. Does it make sense to insist to my mom that he move in with me, make the sacrifices on my family and spend thousands of dollars of our savings to give him home care? As hard as it may be, it is also so hard to see him living in a facility. If he stays in a facility, how do I find peace with that? I feel like we are abandoning him. I am truly torn up about this and looking for any advice that anyone may have on our situation. Thanks so much.
You say you feel guilty about "abandoning" your father. Wouldn't you also fee guilty about disregarding your mother's wishes? Guilt -- unearned guilt, that is -- seems to be a part of the caregiving situation. Your father's Parkinson's and dementia are Not Your Fault. Your mother's burnout is Not Your Fault. There is nothing you did that made the situation what it is. Often it takes a few therapy sessions to help us see that. Sadness? Appropriate. Guilt? Just gets in the way of good decisions.
My sisters and a brother and I did all we could to extend the period our mother could live on her own in her apartment. As her dementia and mobility both got worse, she moved in with one of my sisters, and lived there for 14 months. We considered this her "assisted living" period. She got worse, as dementia patients always do, and we all agreed to place her in a nursing home. And we were all totally amazed that after a kind of rough adjustment period, she perked up and fit right in. She went to nearly every activity. She loved the food. She was delighted that there was a beauty parlor right on the premises. She played bingo at least once a week. She loved the live entertainment, especially the accordion player. She had 4 or 5 family visits every week. She did not seem to feel abandoned, nor was she. At least one of us attended every care conference. We advocated for her.
Your mother has provided the "assisted living" level of care for your father. Now it sounds like it is time for the Skilled Nursing level. It is unfair to expect her to provide that, and it would certainly be unfair to your father, your husband, your children, and you, to expect to be able to provide that level of care in a private home, with children who also need and deserve attention and care.
Maybe your dad will be miserable in a care center. Or maybe, like my mother, he will surprise you by settling in just fine, and even blossoming. There are five of you plus your mother to visit and call and send funny cards and email. He will not be abandoned!
Is he reasonably content in a nursing home and are his needs being met?
I assume he has been a loving father to you. Do you think he would have wanted you and your family to give up your future to take care of him when there are other viable alternatives?
He is only 74 and i assume your Mom is about the same age fully competent and more than capable of making her own decisions for herself and the rest of the family. She is a wise woman and has had time to experience the pitfalls of life in general and understand how the world works. I am 78 and know that at a younger age especially when I had children the same ages as yours. As many people say "if I had my time over I would do things very differently"
Even if you do have 24 hour care you will still lie awake wondering what is going on with Dad or you will hear noises that wake you up and make you feel compelled to get up and investigate or help. Perhaps the caregiver fell asleep .......again! and Dad fell out off bed.
Little kids often get sick suddenly and you are up all night comforting a little one with an ear ache the other one is crying with a fever of 104 and you have to rush to the ER.
You were very sensible in saving up that money for a rainy day or to start your own business.
Hubby could loose his job again or heaven forbid become disabled what happens then? It happened to us and I can assure you it is no fun. You dread the arrival of the mail every day for fear of the inevitable bills there is no money to pay. You may be able to pinch a penny till it screams but there is nothing you can do about the utility and tax bills.
Right now your husband has a job that at least pays the bills, a nest egg for the future, a Mom who made a wise decision to move to a senior community where she is happy and a father who is being well cared for.
Your Dad's illness is very sad for him and for all of you but don't make things worse by robing your nest egg and running the risk of also loosing your marriage and damaging your children.
There is nothing to be guilty about. Listen to your Mom she has made the best decisions so far.
Realistically he will need 24/7 care and supervision soon if not already at that point. If you take him in, the possibility exists the he will attempt to stand again and fall, or wander & risk his safety as unfortunately he is unable to decide what is best for himself. Therefore, respect the decision his spouse (your mom) has made and move forward with her decision.
PD unfortunately a progressive, debilitating disease. His care needs will only increase.
It’s hard not to feel that you are abandoning him, but you are not. He can have frequent visits from his family and I am sure he’ll be happy to see his grandchildren grow up.
My brother & I had to wrestle with this as well, but in the end felt is was the best decision for her. To handle my guilt for placing her in a NH I had to put my “reality” cap on vs “emotional” cap; she was safe at the nursing home & that was most important to me. Mom was served 3 meals a day, she was kept clean, & had socialization. Was it a perfect NH? No. But once the staff there saw that mom had a family that visited often, we all became familiar with each other and this was a huge factor that helped assure her needs were being taken care of.
Plus, you don’t want to have your young children have to cope with witnessing their GF deteriorate and become incontinent, etc. Their memories of their GF should be happy ones. They are too young to understand Foley catheters, bedpans, etc.
Placing our mother in a NH was the hardest decisions we ever had to make. But I don’t regret it.
Good luck to you & everyone in your family.
You may want to see a therapist regarding your feelings of guilt. You are not abandoning him. He will get 24/7 care in a facility which is what he needs. You can still visit and advocate for him.
IMO, it makes no sense "to insist to my mom that he move in with me, make the sacrifices on my family and spend thousands of dollars of our savings to give him home care? "
My mother is in an NH and getting good care there.