Loved one has Parkinson's and dementia. He is up several times at night going to the bathroom or doing whatever. Sometimes he will wake up at 2:30 or so a.m. and want to go outside to try to run down a noise he has heard.
So the issue is that as a caregiver I get little rest throughout the night. My immediate thought was to get a caregiver in to spend at least the early part of the night so I could get some rest. Aside from being very costly, he refuses to let anyone in the house with him at night except me.
Tired and worn out in Doldrum City
That was the straw that threatened to break the camel's back for us. Either we figured out how to let me sleep at night, or I could not continue to care for hubby at home. When his neurologist said we had to deal with one issue at a time, and which one did we pick, I didn't have to think twice -- help him sleep through the night! (Hubby's choice was improved sexual function.) The neurologist consulted with a sleep psychiatrist. Their first suggestion was melatonin. It did not work for hubby. So they came up with another drug, that did indeed work great. That enabled me to continue caring for him at home.
Parkinson's Disease with Dementia is very similar to Lewy Body Dementia, which is what my husband had.
Talk to the doctor who monitors his dementia, not his PCP. Perhaps melatonin will work for your husband. If not, continue to press this issue until it is resolved.
As for the "he refuses" issue, you really cannot let someone with a damaged brain make critical decisions. You may have to be clever or sneaky or devious to work around his refusals, but a point may come where you need to make effective decisions regardless of what he "refuses."
It must be doubly hard for you to handle this. Because he has Parkinson’s, he is a greater fall risk. Having hallucinations just adds to it. Alarms are iffy because then you just lie in bed and wait for them to go off.
Perhaps the only way is medication? You cannot lock him in his room at night because he would panic and it’s not safe. I’ve heard putting black rugs down will also discourage wandering because the LO thinks it’s a “hole”. Also, maybe getting him into a daycare would tire him out and help him stay awake during the day.
A bit of psychology may be required if you would decide to hire an overnight aide. Tell him the aide is to help you and not him.
Finally, if he’s sundowning, his doctor can help you with that as well.
You cannot function on no sleep. Despite his stubborn refusals tomtolerate anyone but you, this may be the way you need to go.
Of course, talk to your loved one's doctor first before doing anything.
The organization my mom used let us find the right "fit"--if one caregiver didn't work, we could call them and they would send someone different, no questions asked. The ones we had became like family members to us. They hugged my family when we came to visit, bought my son presents at the holidays, came to dad's memorial service and kept in touch with my mom many years after he died. They were a godsend.
The LO will get used to them and develop a relationship with them too. A lot of it is the idea that he needs help and doesn't one anyone else to see that he does. But my mom finally had to say--Honey, I want to keep you home. In order to do that, I need help to stay healthy.
PS--we use melatonin in my family too. I don't do herbs, etc. as they are unregulated and can interact with other meds we need to take, but my son's doctor prescribed it and it works very well for him.
And as our family therapist said to me in a private session (my husband ill and on disability)--you need to take care of yourself! If you don't, who will supervise the care of your LO? No one can do it as well as you so get the help you need so that you can be there for him.
Explore your health care provisions for payment to caregivers. invite possible caregiver to come over to get to meet him and develop a bit of a relationship which could help. explore your dept. of aging for possible assistance. you must take care of yourself in order to really help anyone else - don't let yourself be "guilted" into doing more - you are a person too.
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