My husband is 11 years older than I, has Parkinson's and dementia. After a stroke brought on by a fall last year and an attempted suicide overdose 10 days after completing rehab, life has settled down to a pattern and I have used an agency to provide help for several hours while I took care of errands, met with friends, played cards or whatever. Most recently I have hired two people to care for my husband for 53 hours a week and I remain the caregiver for the balance. He cannot be left unattended and I have to take him to the bathroom, dress him and walk with him whenever he wants to move.
One of the women whom I have hired is exceptionally good and caring with him. She has many fine qualities and my husband is thriving under her care. He feels as though he is making progress, is getting better and his depression has lifted. In truth I do not see a physical improvement and indeed he is worse than he was six months ago due to the Parkinson progression.
Because of this care he has become emotionally attached to her, would like her to work at least 80 hours a week for him and if I don't like it then he would like to live some place else with her. He says she is the best thing in his life now.
I have two stepsons who live 100 miles away and refuse to get involved telling me to hire the help I need. I am fortunate that I can do that financially.
Our 42 year marriage is being stretched very thin on this one. While the caregiver will cuddle my husband as if he were a little boy if he falls (having moved when he shouldn't), I will frequently get angry and insist that he gets himself up with my help, a project that can take half an hour.
Backing up, the fall and subsequent stroke took place out of state and I had to live out of state for 10 weeks while he went through rehab, no rehab center in my own state wanting to take him on as he was too needy. 4 hours after we got home he was looking for his gun which I'd given to our son. 10 days later the overdose occurred. I feel betrayed by this and although I have tried to give him 100% support for his exercises I have not been able to give the 110% that I gave during the first hospitalization and rehab.
Since July 15, the day of the fall, I have taken one week off to visit my 90 year old mother in England, other than that I've been "on duty" 7 days a week. I really would like to visit her again but can't figure out how to.
I truly don't know how to handle the nursing assistant situation. My husband is critical of my skills and puts me down publicly. I am not sure I can survive the situation long-term. I recognize that I am jealous because I have given of my best and it is unappreciated; I recognize too that it is the dementia talking but cruel words still hurt.
It has always been my plan to move out of state after my husband dies. I hesitate to totally turn over his care at this stage to someone else while I head for Florida. The down side of the very good caregiver is that she is manipulative and I always feel like she has an agenda. She is always trying to push her ideas on us. I have financial control right now of our investments and I do have some concern as to what would go on if I were not around.
Truthfully it would not be in my husband's best interest to move into a home at this stage and he will go downhill if I fire her. There are several options but none of them look good. Opinions anyone?
I have actually stopped using the agency and hired independently because I wanted to have better control of who comes. The agency was nice at first but I found that they wanted me to commit to certain hours and if I did not they took away the person they kept sending and gave me a new one. My husband found the change in caregivers difficult to handle and I didn't like the constant changes. Dazednconfused, I am so sorry! You have a scenario that no one would wish for.
Babalou, I believe you are right in telling me I need counseling. Two of you suggested I move south as I would like to. I find that daunting because of having to sell a home, find a new place, new doctors or whatever. I could handle it on my own but transferring my husband more than doubles the issue. If I knew this situation would last several years I would do that. We are actually only seven years into a Parkinson diagnosis so there could be many more, particularly as he is getting very good attention.
I like the idea of tackling the situation with the caregiver, my employee. She acts as though she works for him, not for me, yet whether she stays, gets paid or whatever depends on me, not my husband. She genuinely cares for him yet my gut has always told me to watch out. I have another CNA who works only 13 hours a week yet I trust her and she knows for whom she is working!
Eyerishlass, you are correct in her being a know-it-all. I am not trained as a CNA and have learned on the job and by observation in rehab and hospital. I do read extensively on the Internet and feel I have a good understanding of my husband's condition - certainly more than know-it-all!
She does baby my husband, even making monster sandwiches as if he were a child. I come from the land of the stiff upper lip so my approach to ill health is very different!
I will see her next on Wednesday and will have a preliminary talk with her and re-set boundaries. Not convinced that will work but I think at least it is a good first step. I will also see about getting professional counseling - although with the support you have all given me I feel better already!
Have you considered replacing her with someone else?
Have you tried discussing this with her? You could tell her that it's not good for your husband to become so attached to her because he needs to work with her as opposed to being coddled by her. However, it may be too late for such a discussion since she's already worked her way in.
She may not have ulterior motives, she just may be a know-it-all who doesn't recognize boundaries.
I agree with Baba's first point, move south and place him near you. It sounds like you acknowledge you will need to place him eventually, if you are waiting for the perfect time it may never come.
I understand that your husband is still probably competent enough to determine what he wants and where he wants to live, so you most likely can't force him to accept facility care, even if that would be the best thing for him. I really think that getting some professional advice ( an eldercare attorney, a therapist who is familiar with these issues) might be a wise course of action.
I'm hoping others will have more ideas.
2. Chris, it would be really helpful for you to be seeing a counselor during this time of decision making. You are articulate, you see the issues cleaarly, but you are grieving and need some support right now. Having someone objective who can act as a sounding board, as a straight rudder during the storm might be just the ticket. Wishing you well!