Hi,
I'm trying to figure out how to handle my situation and surviving live-in caregiving. I am 58, on disability for spinal deterioration from years of landscaping although I am quite mobile and I live with my father. I came here 5 years ago to help my now 87 year old Dad with Mom, who has since died (3 years ago). I stayed on to keep Dad company, because it's affordable (I trade care for room and board) and I'm able to help Dad seeing I don't work. Very long story shorter, Dad has been deteriorating. Although still able to get around pretty well he's been diagnosed with mild to moderate dementia. Dad and I have always been close, but since Mom died he's becoming more and more clingy. He has a close friend who lost her husband the same year Mom died and they do spend a lot of time together. But I'm the one he depends on. I do have a sister in CA that helps as best as she can, fielding a lot of calls, supporting me and coming out when she can. My dad is narcissistic, dependent on others for his happiness and suffers from life long insecurity and self hatred which he has hidden behind a front of bravado. He also, for most of his adult life, had channeled that insecurity into being a caring minister and has helped both the community and people. About 20 years ago, just after he retired, he was charged with sexual harassment stemming from his strong personality (not sex) and deposed. He has never recovered from that and as time goes on his grief, guilt and shame increases. He will not forgive himself. He has always been one to verbally self abuse himself (that's where my negative tapes come from) and has suffered from deep depression and lack of self worth that only his job and family relieved. Now his wife of 62 years is dead and he's been deposed. Plus he's aware of his increasing dementia, which terrifies him.
Just before Christmas he fell and broke his pelvis, not his hip. My sister immediately flew out and after 2 weeks in the hospital after an operation to repair his pelvis he's been moved to a local rehab. It's been a very painful and slow recovery while we wait for this big bone to heal. All during this time he's been miserable, scared, verbally self-abusive, and his dementia is worse. The staff and his personal doc of 30 years are taking good care of him. But he clings to me. Even though his friend spends hours a day with him, he wants me. I've gone back to school part time in hopes to supplement my income plus I take care of the house, our 1 yr old Lab and my cat. I'm a recovering alcoholic with a great support system. I also go to other 12 step programs to help with my enmeshment with my dad. I'm also in therapy and we're actually at the stage of looking deeply into my enmeshment with Dad and my own self hatred.
I'm suffering from burn-out. Even when I get respite (I go away several times during the summer for 4 days to camp alone and visit my dear friend in the Berkshires for a few days many times a year) I feel this connection and tug so I don't feel recharged. My dad is a master manipulator, trying to get my constant attention, and even though I've learned how to not give in, it's exhausting to have to constantly have this battle going on between us.
Dad calls me around 6-10 times a day, starting as early as 6 am. I've learned to not always answer the phone and I don't answer it before 9am. Most of his calls are to beg for me to bring him home, to ask what he can do to hurry things up or to ask me to do things the nurses do (so I redirect him to them). My sister and I are preparing the house for when he comes home and she'll return in mid-March to finalize the set-up of caregivers for Dad so I won't have to do it all. But it's his clinging need of me that's wearing me down. Because of his dementia, it's hard to reason with him or give advice. He's constantly hanging up mid conversation because he doesn't want to hear what I'm saying. I'm trying to be supportive, compassionate, and empathetic for I know he's scared but his behavior makes it hard to do. I've started to limit my visits to take care of myself (still going every day but for shorter times) but this makes him weepy and more clingy. He can't understand that there's not much to do other than his PT and wait for the bone to heal. He doesn't understand, even when it's explained, why he can't come home to heal. He fluctuates between wanting what he wants NOW and being a stubborn, arrogant man and realizing that his demands are hard on me, so he then beats himself up. He's a drama queen and extremely self-centered. He now thinks the nurses don't like him because he doesn't get their constant attention. It's a vicious circle dealing with his mood swings, most of which are negative. He does try every now and then to be cheerful and to accept his situation but that never lasts long.
How do I handle this? How do I remain his caregiver yet break the enmeshment? I's appreciate any advice y'all can give!
Thank you!
Not answering the phone before 9am is a great way to draw a boundary. You need boundaries with your dad. YOUR boundaries, not his. Know that he will not have some kind of emergency in the NH that only you can fix. That is what the staff is for. My dad used to call me at midnight from his NH to tell me he couldn't find his pants. I stopped taking those calls as they would get me stressed out right before I went to bed.
Boundaries, boundaries, boundaries. Make them clear to your dad and stick to them. My dad was very dependent upon me as well although he stopped short at being clingy (barely).
Your dad's personality problems, his issues, are not your problems to solve. You can justify his actions all day long but that won't solve your problem. He's not going to change so you will have to be the one to change. I am a recovering alcoholic as well so I know you know where you can find a lot of answers to problems ;-) Open the book, work on your steps, talk to your sponsor and take care of yourself. Your dad is safe, fed, warm, and cared for in the NH. Don't be a participant in his little dramas where he's the star. There's no need for you to spend your days putting out his fires. He's monitored, there's staff available if he needs help, there's not a lot of trouble for him to get into.
There's a book called "Boundaries". Simple, yes? But it's a great book and I bought it when my dad lived with me. Your dad's issues are his issues, not yours. We don't have relationships where we accommodate ourselves based on other people's issues. Why your dad does what he does isn't relevant. How you react to it is the only thing you need to worry about. Exercise those boundaries and it'll become easier to set them.
Why are you and your sister (ohmygod a helpful sibling! - hats off to her!) so hell-bent on your father's returning home to live with you as his primary caregiver? It's already not working, and not only for you: your father fell and injured himself while in your care, don't forget. Not your fault, no; but how much clearer could it be that he isn't safe at home? It's going to get worse. His sojourn in rehab is the ideal opportunity to move him to long-term care where his growing dependence can be managed well - why aren't you seizing on it?
Dementia or no dementia, it sounds to me as if your father's psychological issues are too deep for you to plumb. If it were me, I'd call a minister in. I have no idea how you would feel about that, or of what calibre of religious counsellors you have in your part of the world, but your father needs to address his life in sophisticated spiritual terms and that requires a professional. Drama queen? He sounds more like a soul in torment.
I particularly agree with pstegman, who wrote, "You break it by not picking up the phone, and limiting your visits to once a week."
And, Countrymouse hit the nail on the head with "Why are you and your sister . . . so hell-bent on your father's returning home to live with you as his primary caregiver? It's already not working, and not only for you: your father fell and injured himself while in your care, don't forget. Not your fault, no; but how much clearer could it be that he isn't safe at home? It's going to get worse. His sojourn in rehab is the ideal opportunity to move him to long-term care where his growing dependence can be managed well - why aren't you seizing on it?"
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You have identified your own life's issues. Among them, you have stated that you are a recovering alcoholic. I cannot imagine that your recovery program would consider it beneficial to your long-term recovery to take on the role of long-term caregiver to someone as physically, mentally, and psychologically troubled as your father.
Irishlass wrote, "Your dad's personality problems, his issues, are not your problems to solve."
It's time for you to get on with your life, and enslaving yourself in a hopeless caregiving situation is not the way to go about it.
I have to ask...."What would you like to do?" I sit and I live through a lot and I know I do love my mother but if I won the lottery, I would hire round the clock care and I would not be sitting here going crazy over what do I do next. I too am on disability and I am POA but I was thrown into care giving because I was the person at home, not working, so I was expected to care for my aunt, my brother in law, my father and now my mother. I am OVER caring for sick relatives and wonder if I will EVER HAVE A LIFE AGAIN.
I too think your best bet is to cut your visits to your Dad and if possible, I would find another place to live and find caregivers to take care of him. You need long term respite and so do I. Your past problems make you rather fragile and having to try to handle all of this in my opinion is just too much.
I think you need to have a very long heart to heart talk with your sister and let her know that you just cannot keep this up, it has become too demanding and although you love your father, to keep your sanity and sobriety you need to step aside.
You have no idea how long it will take for your Dad to heal and you have no idea how much harder caring for him may be when he gets home. His personality and the love of beating himself up may change greatly and will with the dementia, pain and medications. I do have to say that your father definitely needs medication to calm him down and soothe some of his behaviors. My mom drives me crazy when she asks 50 times a day if the dog has been fed, I do not know how you can live with what you are enduring.
God Bless you in whatever you decide to do, you are a very strong person, but you have to take care of yourself. What if your Dad lives for another 20 years? I would hate to think about you still sitting there holding his hand when you have so much to offer.