My mother won't stay in her bed a night and won't give me space during the day. What can I do?

Diane - great information.

One simple thing that I did for my mom when she moved to IL
was to set 2 torch-style lamps on timers. Timers that you can set for 2 on/off cycles.

They both go "ON" at 6:45 AM and stay on till 8:45 AM - so that every day starts the same with light in the same place no matter what the weather & light is like outside. By 8 there should be enough daylight that the transition is done.

Then at night it goes on at 4:30 PM and off at 8:00PM. Again
another set cycle. And if the weather is dark when she comes
in from an afternoon outing there is always light in the apt -
so the cue is it is not time to go to bed even if it's dark.

First this was done with regular table lamps but those ended
up getting off schedule as she and others would want to use the lamp to read. Torch style is great as for whatever reason NOBODY ever tries to change it. They are both IKEA's "NOT" lamps which are under $ 10 w/a 60W bulb so it's light but not a strong, bright light.

It's amazing how this can work for the earlier stages of dementia. My mom has Lewy Body dementia - so it's a bit different in that there tend to be episodes of dementia rather than an consistent downward pattern. They used to be every 4 - 6 months and now are every month or so. The brain in really amazing, isn't it!

Sleep problems in the mid to later stages of dementia are common. For the care giver they are so difficult to deal with, because we really need to be on our toes to do our best. IT is difficult to do that when our sleep is interrupted all night long.

Individuals with dementia lose their sense of time- and their sleep/wake cycle for what ever reason gets off course.

I cannot tell you how important it is just to be rigid about a schedule when your family member reaches these stages of dementia.
Lack of sleep results on unwanted behaviors, such as aggression, agitation, sun downing, poor appetite and general tiredness ( to name a few)

So, how do you re set that internal clock? Patience and discipline and creativity.

Before I give you some ideas, this is a time when you need to get outside help. Realistically you cannot do this task alone. So , I hope you will look into community services and outside help, for your health and well being.

Now, here are a few suggestions:
It is important to encourage a good sleep environment.A warm cloth to the face and hands,some personal hygeine, if it can be done without a ruckus. Make the home a comfortable temperature, no TV, perhaps soothing music, dim lighting, and a quiet surrounding.
Sometimes a bed just is not the answer anymore.A recliner or chair might be more comfortable than a bed, especially if the person has breathing difficulties. Many elderly people have numerous simultaneous health problems. Due to illness, other disease process, or personal preference, if they prefer to sleep in on the couch, they feel safe and sleeps better, don't make an issue of it. Just make sure you provide enough warm blankets etc to keep them comfortable.
Avoid heavy meals within several hours of bedtime. As we all know, a full stomach interferes with restful sleep. The digestive system needs to "wind down" when the rest of the body is trying to.
I believe that medications should be a last resort. Sleeping medications can help at times, but not always. There is always the possibility that they can have an opposite affect , or make matters worse by making your loved one more confused.

Of course if sleep deprivation is causing other behavioral problems, talk to your neuropsychiatrist for advice.

Psychotropic medication, if indicated, can help take the edge off undesired or destructive behaviors that occur in conjunction with sleep loss or sleep disturbance. But, as noted in a point above, use with extreme caution and be very aware of how the person acts when started on a new medication.
Establish a bedtime routine. It's hard to overestimate the importance of good, established routines. Dementia patients who go to bed "whenever" are not as likely to rest well as those who have a dependable pattern.
Do not forget to assess that pain may be causing the lack of sleep.try to observe for nonverbal cues to pain, such as grimacing or other similar facial expressions, holding a body part, and of course, complaints of pain.
I hope some of these suggestions will help you find a way helping your loved one get a better night's sleep.

Diane

I know exactly what you mean igloo572! Grandma and Grandpa did decide their fate. Daddy and Mom wanted to do the same thing in the same retirement community but Daddy never got the chance. I think part of it was that Mom didn't want to give up her freedom. She never drove and Daddy was her means of transportation. He was way into the Alzheimers when I rode with them one day. I could tell he was petrified and he got on the expressway going 25 mph! When we got home I told Mom in no uncertain terms that he could not drive any more. She argued that she could navigate but I told her that wasn't enough. Ultimately, I think her deciding not to go to the retirement community when they both had the opportunity was because she didn't want to. So many of her friends were there - I know she would have enjoyed it but she just wouldn't.

At this point, it is what it is. I'm just trying to keep her safe and as happy as possible until God is ready for her. Given that Daddy has been gone for 22 years now, I hope it is soon.

JollyJ - what a wonderful story. One essential to this is that
your grandparents WANTED to move/downsize/simplify.

After dealing with "the moms", my DH & I have done what we can in advance to be in a senior setting that so that we aren't being a burden for our family.

The problem for many of us is that our parents will not accept the reality of their aging, many wrongly assume that the kids will revolve their life around their needs and then find themselves in increasingly dangerous situations in their home and about in their community but refuse to change or adapt & you can't make them until a crisis occurs & then force them to move.

I don't think anyone should feel guilty about their loved one living in an ALF or SNF. My grandma and grandpa moved into one while they were still able to have their own apartment and enjoyed the activities and social situations provided. They then were also cared for when they needed 24 hour care and in their final days in the nursing floor.

My daddy had Alzheimers and the last two years of his life, he was in a nursing home. He could no longer walk and didn't know any of us but Mom was there all day every day with him. Mom was only 69 when that happened and totally healthy so we sold the farm and she moved in with my brother. After Daddy's stay, Mom said she didn't ever want to be in a nursing home (although she loved the people there and even volunteered there doing sewing, etc.). Mom lived with my brother (the "saint"!) for 24 years before I brought her to live with me in May because she needed 24 hour care.

Going through this experience, I've now decided that if anything ever happens to my husband, I will sell my home and move into an ALF that has apartments, like my grandparents did. I don't want my children to take on the burden of my care 24x7 and I'd rather be in a place I consider my home as my aging progresses. If I make the decision like my grandparents did, then my children don't have to feel guilty. My children still remember the frequent visits to see Great Grandma and Great Grandpa and they all, kids and adults, loved the visits.

Luckily, my mom can afford a nice ALF, where she has been for the last 5 months. I feel a little guilty at times b/c I have the room for her but I know that she would drive me nuts b/c she is a very dependent person, w/o any intterests now, and would want me to constantly pay attention to her, include her in all activities such as going out to dinner at a friends house w/ my husband, etc. I know that some of you will think that I am selfish and uncaring, but it's not true. I found a very nice ALF less than 10 minutes from my home and only 5 minutes from my job. It allows me to visit her 3-4 days a week and I often take her out to have dinner with me or to visit w/ her great grandbabies. This solution keeps me from being irritated by mom's neediness, the ALF has activities everyday, bus trips to restaurants, etc.
So, I just want to say that no one should feel guilty if they can't have a parent live with them. If mom didn't have the money for the ALF, I would have her live with me, but I am lucky that she can afford it.

JollyJ got that right, the loss of freedom and sense of engulfment by another is akin only to child rearing in the first five years I imagine only with the skills fading not increasing, the needs greater and well the snappy ness only an adult looking at the end of the life and a daily loss of faculties can provide...

I definitely had to get used to my mom being right beside me all day. It wasn't a terrible transition for me though but at times it can be frustrating. Now I am just used to it - at times she is even in my way when I am cooking, for example, but I just walk around her now.

I also found early on that the busier I keep her during the day, the less she will get up at night. If that doesn't work for you though, you should check into medications because I agree with several here who have said that you have to get your rest or you won't be any good as a caregiver anyway.

Good luck! I know it is intrusive!

I can't say enough for Remeron. Technically it's an anti-depressive but does alot more and it is not as intense as other
psych ones IMO. Gerontologist prescribed it.

This is what it's done by my mom:
increased appetite - her weight is finally stable not decreasing;
relieved anxiety; no more insomnia - she is ready to go to
sleep within an hour /hr & 1/2 of taking it. She gets a full at least 7 hrs sleep and is actually rested and not wandering or fretting about in the night.

Also she seems abit more proactively social than when she first got to her IL - e.g. she will sign up on her own to go/do rather than having a staff member nudge her to do so.

Key is it takes 3 weeks or so to have it in their system and be balanced - they can have vivid dreams/nightmares and imagery & dizziness right at the beginning some do/some don't.
But mine was doing all those before so whatever......She has Lewy Body so visions are just a part of that dementia.

The down side is dry mouth and intense hunger for breakfast.
It runs $ 100-125 for 30 days but with co-pay it's about $20.

You really need 2 mos to see a real change - might be worth trying. If she's not as anxious during the day, she won't be
as needy. My mom now can actually watch a complete movie
on TCM so I know she's more relaxed.

She had been on Megace for weight gain - no where as good
as Remeron for that. Plus all the cancer info on the prescription paperwork had her freaked out. Good luck!

Yes definately daycare to keep her busy and awake. Also ask the dr about something to give at night. It can be as easy and an Acetaminophen PM pill sometimes to get them back into days and nights routine.

The ALZ assoc. near you may also have some good info & suggestions. I understand they have classes for caregivers & referal services.

Does your Mom have alzheimer's disease or dementia? Many times sleeping is an issure for folks with AD. Does she nap during the day? It is possible that she just has her days and nights mixed up. Talk with her Dr and get his best advice. I do think respite care is a great idea. If you can take her to a senior center that does care that can help both of you. Otherwise check to see if respite care is available at home from your local home care agency or check with the local Area Agency on Aging. take care....

Ask her doctor and get some help so you don't make yourself ill trying to do it all alone 24/7...

Turn the lights off, if she has dementia this could be the reason, but you definately need respite. You cannot caregive 24 hours a day you will be unable to do before long. There are lovely assisted living homes that are awake 24 hours, that will care for your mom, and you can visit her often but have a life of your own.

did you try night nights, leaving lights on, or tv set on a timer?