No TV at night. Am I being selfish?

I don't believe you are being selfish at all. My sister and I have been caring for Mom for 3 months now. Debra was able to keep her job in an on-call capacity but I had to give mine up as I live in a different state. The one thing we have learned along the way is regardless of the situation the caregiver MUST but themselves first. If you don't take care of you, you might not be able to be as productive as you need. It's not quite the same thing but maybe switch to a radio? Good luck and God bless you.

I'm going to unsubscribe. I can see where some people need help but outside of legal advice, I see so many questions like this that have common sense resolutions, i seriously doubt how some questioners manage in life. Unfortunately i have given much more advice here than i ever received.

Sleeping pills.

Ear plugs. End of problem.

I truly know what it is like not to have sleep and how badly it is needed. My mother has moderate+ dementia and has gone on some wild tangents where she is not sleeping and roams the halls and is in my bedroom flipping on the lights looking for the dog to feed it and it is asleep under my bed. This goes into wild screaming tantrums and she did this for two weeks straight and we all thought we were going to literally LOSE OUR MINDS over it!!! So I do know how important sleep is.

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!!!!

Could you let him stay with his kids for a while? Or take an extended vacation and let them move in so they can experience him as he really is?

Moxie wrote you a wonderful blueprint for taking care of YOURSELF in all of this. Your wants and needs are as important as your husband's are. You need to make sure you take care of yourself. Good luck and keep us posted.

You can get wireless tv headphones at Walmart, Walgreens, Target, Best Buy, etc. get them.

Oh gosh, what a terrible situation. Have you talked to an eldercare attorney about the situation? You are going to need medical and financial POA's or - his kids will need these. Yes, you may be right this has been caused by his alcoholism. It is all just so terribly unfortunate and you really don't need his adult children working against you. Being the second (or third, etc.) wife really sucks. Often, you wind up being a blank where the first wife once was, disregarded by your spouse's children, even if the first wife was an absolutely awful person. Just to give you an idea of what to expect, my mother was in the same stage you are describing your husband as being in - late stage 5, early stage 6, two years ago. Her disease has progressed rapidly and she has lost most of her ability to speak. She has become doubly incontinent in the past 2 weeks and now is clearly transitioning to stage 7 - the final stage. In a short matter of time, she will become bedridden and I will have to call in hospice. My dad is having trouble processing this. They have been married 68 years and known each other since mom was 4 and dad was 5 years old. Dad has told me that it seems unreal to him that mom has become what she is now. Of course, he is devastated that she is no longer the person she was. Really, dad and I lost her 2 years ago. I'm not even sure she knows who any of us are now and she's also an elopement risk - which is why I have 24x7 caregivers in the house with my parents. There is no telling how fast or slow your husband's dementia will progress. It's highly individual. He is going to need 24x7 care no matter how you slice it or what happens and he's borderline in need of this type of care now. One way to get this care is through Medicaid, another is through the VA, if he was ever in the military. But there is your future to consider, which is why I think you need the advice of an eldercare attorney. You can't work forever and you will need to have some money to live off of for yourself. Your cannot allow your husband's needs to destroy your own financial security or your life, no matter how much you love him.

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.

Thank you all so much for the wealth of ideas and comments - so very helpful, to clarify a couple of questions -
It is not so much the noise of the tv that keeps me awake - more the fact that he is up and wandering around and will possibly fall or need me - the TV seems to stimulate him and keep him up - if it is turned off - he has no choice but to eat a snack and go back to bed and will usually sleep for another 2 or 3 hours, which is like a long winters nap for me. So far he has not ever wandered outside but of course I never know what tomorrow may bring.
He refuses to wear the med i alert device that I got for him, so that is useless, I doubt that he would use headphones, but I am going to try putting a tv in his bedroom with headphones - perhaps that would help.
He does not take any sleep aids, I, the sleep therapist we saw and his neurologist all would like him to take some Melatonin, but his children refuse to let me give him Melatonin.
It is a complicated situation, they are my stepchildren and are in denial that he has any kind of dementia, refuse to listen to anything the doctors say, refuse to admit that he was an alcoholic - I am convinced his extreme abuse of alcohol is what has done much of this to him. They are looking for the magic pill or fix that can bring Dad back - and while we have an ok relationship because I cater to them because I think it is very important that they are in his life right now, they resent me for accepting the fact that he indeed has dementia and is most likely in the moderate to severe phase of it.
He has had many many tests all which indicate dementia, but no definitive diagnois
his movement disorder neurologist has requested that he take a neuropsychology test that will further determine what dementia we are dealing with - they are leaning towards frontotemporal or lewy body along with alcoholic dementia. The kids of course don't want the test done, cause they don't want to know, they would rather think that he has depression, or lyme disease or that one of the best neurologists in Houston doesn't know what she is doing. That said, I have little help or support,
they do take him to some doctors appts and take him out to lunch on Saturdays but that is normally a 2 hour session of being critical of me and I get him back with a "I don't have to do anything you say", (like take his meds - help to dress himself - etc) attitude that lasts for a couple of days, they of course are upset at me for the no tv rule and tell him that he can watch tv all night if he wants.
He does not read - and has lost the ability to really use any electronic devices, I even had to have an old fashioned phone with handset installed next to his chair because he could not/would not use a remote phone. If I or the kids would call him during the day to check on him, he would get himself up and go the to handset phone in the office to call us back as he could never get there quick enough to answer it.
I am going to contact the Harris County Dept of Aged and see what help that I can get - and keep on plugging - hopefully I will get enough sleep to keep on going.
Thank you all for such wonderful input.

If he has a kindle, get a subscription to Amazon Prime where he can watch movies and tv shows on it. Then get him comfortable ear plugs and that might solve the noise problem. I do this as to not disturb my sleeping parents when I want to stay up later than they do. It may even lull him to sleep if he's comfortable enough.

Honestly, I don't know how you do it. My 88 year old mother was keeping my dad up all night every night and finally, I had the caregivers put her to bed in the guest room. (Illogically, my dad protested this, but I put my foot down and the caregivers started doing it and it worked from the first night onward.) Dad now sleeps in the master bedroom with the door closed. I have caregivers in the house 24x7. Until I made these changes, mom would wake dad in the middle of the night by shouting "Help" in his ear or punching him or she would wander into the TV room and shout "Help me, help me, help me!". Dad was completely exhausted from dealing with this and after 3 weeks, despite his protests that he could handle it, I stepped in and forced some changes. My biggest fear for your husband is that he might wander out of your house at night or during the day when you are not at home and you might wind up with a "Silver Alert" situation on your hands. I get it that you don't have much money, but is there anyone in your family who might help you? If not, could you possibly put your husband in daycare while you are not home. Perhaps the activities at daycare will keep him busy and awake during the day so he will sleep better at night. I am also concerned that the TV may be all that is keeping him in the house at night. If you take that away, might he wander and leave the house? Of course, he could wander with the TV on, too. It seems you really have a difficult problem. I guess my only other thought would be to setup a TV room for your husband as far away from the master bedroom as possible and have him watch TV in there with the door shut. Hopefully you have a burglar alarm you can engage so that if your husband tries to leave the house it will go off and alert you. I'm just so very sorry you and your husband are having to go through this.

If he won't wear earphones... maybe you can wear ear plugs?... just a suggestion

It keeps him busy which is good for both of you-what about earphones-they just go into the jack on the tv and you can sleep and he can hear...

I understand how you might think of the no-TV arrangement as selfish. But underlying this seemingly trivial conflict is your very basic need for sleep which makes it truly more of a survival issue.

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.

The tv is the only enjoyment he has. I, too, am a light sleeper. I take a benadryl and nothing wakes me up. I am able to wake if the granddaughter needs me, but then I go right back to sleep. I use a cheap generic one from Amazon. Good luck.

My very hard-of-hearing dad wore wireless headphones to watch TV. I could hear what was going on from across the room (he had them on so loudly). But they would have worked in your situation being in another room. So I'm another vote for headphones.

I like your idea and think it's a healthy option.

Can he read? Also, if so I had given my mom a kindle. She would read quietly and when she fell asleep the kindle would also sleep. She could also make it brighter or softer light and the type face could be made bigger for her to read. She really loved it, particularly for company in bed at night.

I'm so sorry for the changes that have happened in your life. Wishing you strength, health and happiness in your future.

How's about headphones for him during this time?

Hs his sleeping patterns always been so erratic? Maybe try giving him a natural sleep aid at night. Perhaps you can shift his sleeping habits a bit so he isn't so restless at night.

The tv being off from midnight to 7am is a very reasonable compromise. However, with Ear's dementia, does he retain this request? Does he keep the tv off between midnight and 7am? If not, how about unplugging it? If his dementia is such that he doesn't remember the midnight to 7am request would he accept the tv not going on if he tries to turn it on?

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.