We have reached a new stage. I have been supporting my dad for a number of years but more recently it has been overwhelming. Dad got a diagnosis of Lewy bodies dementia in April this year and after a succession of difficult months it has all culminated in a small fall that has resulted in him breaking his hip. Dad has been in hospital for 7 weeks now and his mental state has declined loads, I can't talk to him anymore about normal stuff his mind twists everything because of the lewy bodies or delerium. I feel like I am actually going mad myself. Tomorrow he is being discharged to a nursing home to be assessed (we are in the Uk), currently he is 1:1 in hospital due to risk of falls and behaviour. I can't talk to him about it because he is not in this world/time zone but I feel so cruel but in my head know I can not cope with his needs. I go to sleep crying at night thinking of him curled up like a lost boy frightened and alone. What should I do?
Lewy Bodies is a fairly aggressive dementia, and it might help you if you do your research on it, so you can better understand what your dad is going through. Things with your dad will only continue to get worse, so just try and be there for him, and let him know that you're by his side and will be his advocate to make sure he gets the best care possible.
You have nothing to feel guilty about. What you are actually feeling is grief. You are grieving the dad you once knew and is no longer. That's hard. So be gentle on yourself, and allow yourself to grieve, as that will help you get through this journey that you're on with your dad. Praying for God's peace to be with you.
I will tell you that his being in care in ALF helped him enormously and Lewy's is something that can get better and worse intermittantly (which makes it somewhat unique in the dementias) so don't give up all hope.
Of course you are not experiencing guilt unless you are an evil doer that caused this for your Dad. You are experiencing the other G word which is grief. The correct word truly DOES matter. I so wish you the best.
The others are right, too -- anesthesia messes with someone's head something awful. (It took me a full month to feel normal after surgery when I was 45.) Add to it the trauma of being in an unfamiliar setting like a hospital, and it's totally understandable that he'd be pretty messed up.
Just know that he may improve after a while, but it'll be a long while (months at least), and it's unlikely he'll get back to where he was before all this happened. When older folks with dementia-related illnesses have a traumatic experience like surgery, a hospital stay, or an emotional trauma like the loss of a spouse, they tend to take a big step down cognitively. My mother's had dementia for seven years, and while she's been declining bit-by-bit all along, my dad's death, the move to a nursing home (twice), a few trips to the hospital that lasted anywhere from four hours to two weeks, and a bout of COVID have all resulted in deep dives cognitively from which she has plateaued but never recovered.
That's why after her last hospital experience (the two-week one) I said, "we're done," and I put her on hospice care. Anything medical that crops up will be handled at her nursing home as best as possible, but we are not going to the hospital again. Her quality of life is about gone at this point, and she could go any time -- or not, because she's feisty on her good days.
My mom recently died with end stage Parkinson’s disease in a hospice house. There is no way that she could have remained at home. The care simply becomes too much for family members to care for them.
Does it break our heart if we have been caring for them? YES! Of course, it does. But let me share something with you that may help.
Like you, I cared for my mom with Parkinson’s disease (15 years in my home), then my brother stepped in for about 14 months and mom was at his home with he and his wife.
Mom absolutely hated being a burden on us. Yet, because we felt that we should care for her, she wasn’t sure how to feel. I seriously believe that when adult children are caring for a parent in their homes, an unnatural codependent relationship develops. At least that’s what I saw in my relationship and my brother’s relationship with my mom. It’s not always best for the children to care for a parent in their home.
Anyway, mom prayed night and day for a viable solution to remove the burden from her family. Those prayers were answered in the way of an incredible hospice house that provided excellent care for her.
Do I miss my mom? Yes, I do. I take comfort knowing that she is at peace, and is no longer suffering and reunited with my father and brother.
I truly believe with all of my heart that your dad doesn’t want you to grieve over this situation, even if he can’t express that to you now. He would never want you to feel responsible for this.
You did the very best that you could for your dad. God knows that we are not responsible for every incident that goes horribly wrong. Please don’t blame yourself. There is nothing to forgive here. You’re hurting for your dad, which is totally understandable but in no possible way should you be held accountable.
A facility is the best place for your dad. They will oversee his care 24/7.
Wishing you peace during this terribly difficult time in your life.
2. Ask yourself if your are really being cruel. How does un-cruel look? Did you ask for him to have Lewy syndrom? Did you push him to fall? No, No, No.
3. it sounds like you are worried about his care at a nursing home. Everyone is. But the good thing is that you can have some peace at night --and get a good night's sleep.
4. your dear Dad is slipping out of this world already. His mental state is leaving, his medical issues are complicating even a simple life. His good behavior is failing him.
5. Yes, you are going mad in your own way. This is not good. You need some self-care to get strong. You REALLY need to start focusing on the GOOD things in life and in your memories with your Dad.
Next, give it some time. After he's transferred to the NH, let them do the assessment. As others noted, hospital and anesthesia delirium is common in elders, even in those who didn't have any signs of dementia. If he already was on the dementia journey, this would make it worse. Some do recover partially or even fully, going back to the level they were at before or perhaps a bit diminished. Seven weeks is a long time to be in an unfamiliar place - moves and being in unfamiliar situations takes a toll on those with dementia.
Let him get settled in. Provide comfort as best you can when visiting. Decorate his room with mementos and trimmings from home - those that might spark some memory for him. Hope for improvement, once he has settled in. He might not get back to his previous levels, so the best you can do is be there for him when you can.
second, i hope you are taking care of yourself too. Quit propping your dad up, or he will always say he can live by himself. Talk to someone maybe a social worker, about having a needs assessment done. I send healing blessings to you and your dad.
Dad is in the NH, I have visited but he slept. I will take heed of what is said and try to stop beating myself up with pity and remorse. I will continue to be his advocate and daughter but also remember my husband and children who need me too . Thank you all xx
Our thoughts go into a thousand different directions. So, know that is normal.
The dangerous part comes when we get stuck in hopelessness. There is hope. There is help out there. Utilizing the services provided by mental health professionals can be a lifesaver.
It sounds like you realize that you have been torn in different directions.
Yes, you have a sad situation with your dad. You also have your own family that needs you.
All of us struggle at times in prioritizing situations in our lives. Just remember that you aren’t neglecting your father by doing what is necessary for yourself and your family.
You’ve been confused. This is where therapy can help greatly. Please don’t be overly critical of yourself. It takes time to sort through difficulties in our lives. Nothing is resolved overnight. As long as you strive to continue to move forward, you’ll make progress. One step at the time, one day at a time is all you need.
Wishing you all the best. Be at peace.