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

All caregivers need a good night's rest, at least most nights!

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."
Helpful Answer (13)
Reply to jeannegibbs

I read some of your answers to other poster’s questions and they are very spot-on. You seem to have a good handle on this awful disease.

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.
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Reply to Ahmijoy

Both mom and grandma were the same way. They would be up at all hours of the night. Melatonin helped. Trust me, I'm not one of those holistic people who jumped at it. I was a man of science. Prove to me it works in clinicals. But the doctor in the hospital prescribed it to mom during a bad episode. I've kept her on it. I've tried taking her off of it from time to time and it's clear that it helps her. She sleeps much better at night. Walking in at 3am and finding her cleaning the bathroom is now a rare occurrence instead of common. It worked so well for mom that I started giving it to grandma. Helped there too. Grandma no longer does laps around the house at 2am talking to herself endlessly. Now the sound she makes at night, most of the time at least, is a light snoring. I was afraid of using it long term but all their doctors don't have a problem with it.

Of course, talk to your loved one's doctor first before doing anything.
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Reply to needtowashhair

My dad too had Parkinson's dementia and though he protested having caregivers, in most cases, they will not protest too loudly to a complete stranger and are much more willing and docile with them than they are with you.
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.
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Reply to DutchGirl

You can try lseeping in another room for one thing. Put good locks on the exits so he can't easily get out. Talk with your family to see if any of them can donate an occasional night over for you. Also as others mentioned see if doctor can recommend something to help him sleep. Put a portable potty next to bed for his use when he wakes up during the night.
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.
Helpful Answer (7)
cajohnston Oct 22, 2018
They have given my mother sleeping pills plus melatonan (sp) and she is still up three to four times a night sometimes she will play the piano and wake me up other times she stands in front of my door coughing so that I will wake up. And other times I find her fully dressed with her purse in her hand and I'll find the door unlocked ..... I not only need sleep at night I need a night watchman@!!
My mom has Parkinsons and sometimes dementia symptoms, and I'm her 24/7 caregiver. She was getting me up multiple times a night for little things, fixing her bed, giving her another pill, helping her to the bathroom. Her doctor insisted if it continued we would need to hire an overnight nurse. The doctor said no caregiver can be up 24 hours, she said I needed to get sleep at night. She did, however, reduce mom's meds and encouraged me to keep her active during the day, and it has reduced her nighttime issues.
Helpful Answer (6)
Reply to kbuser

He is no longer in control, so it isn’t his choice if you have help at night or not. Hire someone to come several times a week, it’s expensive but definitely worth it. Or look into assisted living.
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Reply to EMM250

You first need to believe and feel you are worth getting support so you can function (sleep). Once you believe you deserve to take care of yourself, the rest will fall into place. You will make it happen.
Helpful Answer (5)
Reply to TouchMatters

Get help anyway.Obviously he is not able to make proper decisions. Let him know you must get sleep at night or you cannot help him at all.
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Reply to Levans2008

Hi. We totally understand your concern. When our parents have things going on, they do not think as well. However, we can still be impacted and moved by their words and behavior, even though we realize that it is off. If you seek outside assistance, please contact an agency. This is your best bet in getting someone who is well trained in the kind of behavior that dementia patients exhibit. This means they can handle whatever he is dishing out. The motto that we are using in caring for our mom, is that we take care of her, but not at the expense of ourselves. When our parents gave birth to us, they found ways to include us in their lives, without having to stop their own. This is the same concept that I am using with our mom. We have qualified and trained help, and it is making an awesome difference in all of our lives right now. A trained professional will also be able to understand your dad's behavior enough to learn how to help him to become comfortable with the caregiver. I would suspect that your dad, in his right mind, would want you to do what you need to maintain your own health through this tough time. If you are able to do this financially, it is well worth the effort. If you are unhealthy, then it short-circuits your ability to provide good care for your dad. Leaving it unaddressed could cause resentment to build up.........along with inadequate sleep..I pray that you decide to reach out for the support, if that is available to you.
Helpful Answer (2)
Reply to tCares6

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