My husband has some kind of dementia - no real diagnosis yet along with a movement disorder and has arthritis all of which keeps him up a lot at night. He sleeps and naps a lot during the day.
I am his primary caregiver and our financial situation is such that I have to work full time, so he is home alone during the day, I am very fortunate that I work just a few minutes away so I am able to go home at lunch to check on him and help him with dressing etc - he spends most of the morning sleeping and the remainder of the day in his lift chair watching tv.
Our home is small and I sleep with my bedroom door open so I can hear him when he calls me for help getting in or out of the bed, or if God forbid he falls. He gets up and down all night long and likes to go to the den sit in his chair and watch tv. I am a light sleeper and even though he is fairly quiet, it wakes me up.
A couple of weeks ago I came down with a stomach virus and was sick for 3 or 4 days and I am never sick, I felt like a big part of getting sick was that I have not been getting enough sleep.
So to help me get a little more sleep and to encourage him to sleep more during the night, I have said that the tv needs to be off between midnight and 7:00 am in the morning, which is when I sleep. He is not happy at all with this - and feels like I am being mean to him and we struggle with it almost every night, I am trying to stick to my guns, but he is wearing me down.
Before this illness - Earl had a bigger than life personality and while he always liked to get his own way - we were usually able to talk things through and come up with some kind of solution. He is now very resentful of any decision that I make - be it the TV or anything else.
Am I being unreasonable in saying no TV at night?
Working full-time and caring for your husband you do need a lot of rest. I would imagine that you're working your fingers to the bone trying to take care of everything. Have you considered lightening your load a smidge by hiring someone to come in each morning to get him up and dressed? If you go through an agency they usually have a 2-hour minimum. In 2 hours a caregiver could get Earl up, help him dress and fix him breakfast. It's not much but it's something.
My dad lived with me. He was very hard of hearing. The first few days after he moved in were a nightmare because his tv in his bedroom would blast out throughout the house. I bought him some headphones with a long cord and he was able to sit in his chair with the headphones on. I'm talking actual headphones, not ear buds. And the cords came in different lengths. I bought them at Radio Shack.
Some thoughts:
As a compromise, your husband could use a listening system for the TV. I've tried several for Mom and the best we found is the Sennheiser DirectEar. It's wireless and easy to install. And if he were to resist using such a device, then THAT would be selfish.
Are you familiar with the "sundowning" that often comes with dementia? If he becomes restless at night, a sleep aid might help. Before resorting to a prescription from the doctor, you may want to try an herbal tea. My favorite is Yogi brand "Bedtime" tea.
Another approach would be to keep him busy, and awake, during the day and then he might be tired and sleepy at night. Perhaps you could get him in a day program. If he is old enough to qualify for their services, you might start with the Harris County Area Agency on Aging. Go and visit if possible and get an overview of what they offer. Such organizations often have grant money for a variety of purposes. Also they probably offer caregiver groups which could provide emotional support for you.
For a while, before we had to resort to medications to settle her down, my elderly mother roamed the house at night. As you said you do, I left my bedroom door ajar so I could hear her if there was a problem. Then she started to make a habit of opening my door, turning on the lights, muttering about wanting to check and see if *she* was there. Enough already. Certainly my mother’s wellbeing is important to me, but I wouldn’t have been much use to her if sleep deprived. So I started closing and locking the door, with a sign posted on the outside saying I was sleeping, please do not disturb. There are limits to what one person can do.
By the way, if you do decide to seek help, it might be useful to get an official diagnosis for your husband’s mental condition. The word “Alzheimer’s” opens a lot of doors in terms of getting services. And whatever solutions you find for your current challenges, be prepared for something else to pop up; it doesn’t get easier from here.
I send blessings to you for peace of mind as you resolve whatever difficulties come up. And remember, it’s not selfish when caregivers care for themselves.
This may help you figure out what stage of dementia your husband is actually in. The stages overlap, but whatever behaviors from the latest stage listed are apparent indicate the actual stage the patient is in:
http://www.alz.org/alzheimers_disease_stages_of_alzheimers.asp
In addition to the Dept. of Aged, I would suggest you contact your local Alzheimer's chapter.
I do wish you the very best and I'm so deeply sorry about what you are going through. This disease is absolutely awful like a nightmare that you can't wake up from and it is not helpful what his children are doing to him ...and you. They should be ashamed.
It sounds like your husband sleeps in a different room than you do and if that is so, then I wonder why you don't just put a small tv in his room with earphones. Then he is not walking around into another room and if he remembers enough to use the earphones, he shouldn't be a problem. Although the best laid plans are bound to go astray no matter what you do.
You need to hear him or I would say get one of those noise machines where you can hear "white noise, or rain, or ocean waves etc. then it might help to mask a bit of his moving around.
The best thing for him would be to be able to go to a Senior Day Care where he is up in the morning and doing activities during the day so he....like you, would be tired at night and actually sleep. Have you asked the doctor for a sleeping pill for him? If he got enough sleep at night, then maybe he would get up earlier and not sleep til noon. He is like a baby who has his days and nights mixed up. This does happen easily to us all when we no longer work. Would Medicaid help to pay for in home care? If so, you might be able to find someone to come in and work with him during the day while you work.
Best Wishes to You Both!!!!
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