My mother was diagnosed with Alzheimer's this past year and it has progressed rapidly. Thus far her doctor's aren't giving us any answers. I understand this is a difficult disease for family members to deal with, but I feel like she is not getting the best care. I'm not sure what questions I should be asking. I can't understand why she has not been put on any medications. To top this, she does not sleep. My step father and I take shifts with her, but there are times that she won't let either of us sleep. How do I get her to relax and lay down? I'm open to any and all suggestions. Thanks so much!!
I am not sure what you expect from the doctor but the medications that are used to "treat" Alzheimer's do nothing more than possibly slow down the progression for a very short period of time. It does NOT make it better. It is designed for the early stages and from what you have said your Mom is not in the early stages. Please don't be upset because the doctor is not prescribing medication that will probably do nothing beneficial.
As for the sleeping. There are a several things you can try. The elderly have a depleted level of Melatonin. That is why the elderly do not sleep as much as their younger counterparts. Those with Alzheimer's usually have an even lower level of Melatonin. My Mom was a night wanderer. She was up roaming most of the night and snoozing during the day. I started her on Melatonin each night about 9:30 PM and then put her to bed. It took a while but she now sleeps all night with no problem. You can also try to keep her from napping during the day. Over stimulation during the day can also cause sleeplessness at night. Make sure you have a bedtime routine as well. They thrive on routine.
If none of that works they you can ask your doctor for a sleep medication. How is she during the day? Is the sleeplessness and extension of sundowning that starts in the late afternoon and early evening. Just know you need to get sleep in order to be able to continue to take care of her at home.
I understand at this stage the Alzheimer's medications will most likely not help her. What I am more concerned with is the doctors seem to be doing NOTHING. And my mother is not elderly, in my opinion. She is only 49. The restlessness is an all day thing. She is constantly pacing, getting up and down, moving things around the house she thinks go somewhere else. It is a full time job just to keep up with her. We do have a routine in place for the most part, though it changes from time to time as any routine will do. Mainly we try to stick to a schedule as far as waking up, bed time, meal times, bath time, etc... So far nothing we've tried has helped. Right now I am sitting at nearly 32 hours of no sleep and I'm wearing thin. I am wondering if calling her doctor will even help. I do appreciate the advice though. With any luck she will lay down soon and I can rest for a couple of hours. That seems to be about the longest she will sleep at any given time.
I sympathize. DH has early onset AD and paced constantly too. He wouldn't sleep. By the time he went into the NH, he was getting by on just dozing and we were exhausted. He'd actually sleep on his feet at times, which made him a fall-risk. He was admitted into a NH through a hospital, and the hospital nurses had reported him as a behavior problem partly due to his inability to sleep and the constant pacing.
We handled it in shifts (so each of us could get an uninterrupted 3 hours sleep every night). We hired a home care "babysitter" to keep an eye on him for a night if someone was sick or things got really bad.
We used rock & roll music to calm him. DH had loved that kind of music, and it seemed to help to have it playing quietly. The tv was useless since he wouldn't watch tv. We gave up turning down the lights, since he'd break the lamps by fooling with them. As you noted about your Mom, he was also very restless and would move things constantly. We tried to make sure that he had piles of old magazines from the 1-2 price store, which would keep him busy for awhile.
We put a bed in the family room, to try to encourage him to lay down on it to sleep. That would work about once a week.
I slept in a recliner in the same room, to try to keep him company during his pacing. It got to the point that it would wake me up if he left the room (the pacing was so regular).
Pacing and lack of sleep (combined with flashes of anger, inability to understand words anymore, the incontinence/pooping on the floor) all piled up in the same period of a few months. Medications, including the ones that were supposed to put him to sleep, didn't work at all. When DH's day care center said they couldn't keep him anymoe, we ended up making the nursing home decision. The NH that he entered let him pace constantly on his secure ward. Eventually his behaviors there required that he be sent for an "involuntary commit" to have his meds adjusted by a geriatric psychiatrist. That psychiatrist prescribed a cocktail of several drugs that knocked DH out enough to ensure he got some rest. Seroquel has been the drug that helps him the most. It's now 2-years after he was admitted to the NH, and he is not able to walk anymore but the pacing behavior continued for about 1-year at home and 1-year in the NH.
In fairness I have to back up a bit with Mom. Mom (Alzheimer's) and Dad (Vascular Dementia) moved to AL shortly after Mom was diagnosed. Mom was Dad's caregiver at the point of her diagnosis. In AL she also became a pacer, wanderer, and always on the move. She had to go go go! It did get to be a day and night issue with her and yes she moved things. She packed her stuff to go repeatedly. Mom then developed the paranoia, angst, and finally hysteria which eventually lead to her move to a locked unit. Dad was also wandering due to delusions. Mom too went through a Senior Behavioral Med Unit that specialized in dementia behaviors. They were able to calm the angst and hysteria but the need to go remained. Even on medication she still wandered and moved things. This was never medicated out of her, as with Beginning's hubby. Our final attempt was the Melatonin. It did help Mom sleep at the right time but that was over 2 years after she started the pacing. The very symptoms you describe is the reason many end up in a care facility and why I said what I did in the end of my post. Sometimes it does have to get worse to get better. At this point Mom is sleeping more (the Melatonin just helps that sleep be at the right time) and sits more.... but she is still on the go as much as physically possible. This behavior is just part of the disease with many. Perhaps a night care giver would allow you to get more sleep at night.... or maybe a respite weekend in a care facility. What I do know is that you are going to need some relief eventually because Mom will out pace you
As for treating your Mom... unless she has other medical conditions that need treatment there is not much her physician can do medically. You may want to get a referral to a good geriatric psychiatrist if you need to address her behavioral issues. One of the worst parts of this disease is that it can affect an otherwise healthy individual. Mom has no other medical problems. All of the medication she is on is related to her behavior.
It sounds to me like I am in for a long road with this. I am in the process of finding a good placement for my mom, but it seems there are no beds in our area and I don't want to put her so far away that we can visit regularly. It's a very hard decision. I would love to be able to care for her at home as long as possible, but I'm realizing quickly that that may not be an option much longer. She is also having bathroom accidents and will get agitated at times and can be physically violent. We've tried music, routine, even cammomile tea that she's always loved. Nothing seems to be working. I put in a call to her doctor this morning and we are meeting next week to discuss what needs to be done to help her. I'm just keeping my fingers crossed that I can find a good placement for her where she can get all the care she needs and, though a little harsh sounding, so I can get one night of solid sleep. I'm so exhausted most of the time that I'm worried I will miss something she does and she will hurt herself. It's a very scary feeling.
Sleepless, we would all like to keep Mom at home but this disease, in so many cases, makes that impossible. Knowing our limitations and when we need help is so very important. Pushing ourselves to the point of physical and mental exhaustion only makes it worse. We are too tired and worn out to deal with it and that doesn't help. Not to mention if we get sick it!! So there is nothing selfish or harsh about knowing that you can't provide all that Mom needs. It is actually very responsible.
I am glad you have an appointment with her doctor and hopefully he will be able to help you find medication that will help your Mom. I am going to go ahead and tell you my thoughts on anti psychotic medications. I was dead set against them at one time. In my limited wisdom I though I could do it all, make it happen, outlast it, and fix it. This disease in my Mom changed my thinking. Dementia patients are stuck in a world they don't understand. It is a scary place for them. As scary as it is for us I can't imagine what it does to them. They have lost so much and nothing makes sense. Beyond that they do not have the cognitive coping mechanisms to deal with what they are experiencing. Their acting out is the only way they know to deal with the distress they feel. As the psychiatrist explained to me... if Mom was in physical pain I would move heaven and earth to help her handle that pain. Mom is in emotional pain so why would I not do the same? I learned that treating her emotional distress was not for me... it was for her. If it took a medication to create contentment for her then that is what we needed to do. Yes, my Mom was all that your Mom is now and worse. My only regret is that it took so long to find the right combination of medications that helped her. Yes, she still wanders and is constantly carrying random items around with her, but she does it with a smile and without the angst of the past.
The A-typical Anti Psychotics that have helped Mom are part of that list of meds which are not recommended for the elderly dementia patients. There is a very slight increased risk of cardiovascular events in the elderly dementia patient that takes these meds. Yet the major risk factor for cardiovascular event is AGE! The increased risk from these meds is just above the the significantly important percentage (less than 2%). So if Mom's chances of these cardiovascular events is greatly increased by her age... do I want to withhold what will give her contentment for the rest of her life because of a very slight increase over that? In the land of dementia... I will take contentment over the slight possibility of a little longer in the disease! Mom's psychiatrist did let me know of the risk but his thoughts were much as mine. I will take contentment for the time I had over the possibility of a little more time of discontentment! I do know some doctor's don't want to take the chance but I bet those are the ones that never lived with this disease and are just reading research
I am originally from close to your area and I do know there is a great shortage of beds in that corner of the world. Hopefully something will come available. Put your name on every waiting list in every facility that you find suitable. It is sad to say but bed availability can be quick and unexpected. I am sure there are names on the list that are just waiting and may not accept a bed so you can move up faster than expected. The important thing is to get her name on every list possible as soon as possible. Hang in there... something will turn up!
sleepless, you have endless hugs and towels from me. Towels are the most valuable things you could have. You can use them to cry in if necessary, you can strangle those that need it with them, you can pop those that annoy you with them, you can wrap up in them when you need to hibernate,... and the list goes one. We have truck loads are really nice ones in every color so pick your favorite and know you have towels, hugs, and support from here
The following 2 users give hugs of support to: Gabriel
debbie g (01-04-2012),luyingjie (01-25-2012)
The Following 2 Users Say Thank You to Gabriel For This Useful Post:
luyingjie (01-25-2012),sleepless84 (01-04-2012)
When all of this first started my mother was put on Prozac, a cholesterol medication and something to help her sleep. But she was still able to communicate at that time and I'm not sure the doctor realized it was AD. That was less than a year ago and she has deteriorated mentally so quickly that I'm not sure what is going on. It's like one minute she was a completely healthy, mentally stable person, and then she wasn't. I'm concerned she may have had a mild stroke but her scans have shown nothing. Does AD hit all of a sudden like that? And for that matter I'm wondering if AD is what is actually happening. It's all so very confusing. My mother never did sleep very much and she's always been an on the go person. It's just now she seems to wander with no true purpose other than moving. During the day it is easier to handle because we're up and able to keep a closer eye on her. But when bed time rolls around and we're all so exhausted we can't stand ourselves, it gets to the point that I'm worried we're going to miss something or she is going to slip outside, which she has tried on several occasions now. I have sliding locks and door alarms ordered and with any luck they will be here this week. Other than that, I'm not really sure what to do to ensure her safety and our peace of mind. I'm hoping her doctor will put her on something that will help her sleep. Are there any activities I might be able to do with her that will wear her out? We've tried music and dancing and she seems to really enjoy it, but it also seems to give her MORE energy. I'm just at a loss, lol.
The following user gives a hug of support to sleepless84:
The Following User Says Thank You to sleepless84 For This Useful Post:
There is a youngish gentleman in good health on the same floor as my mom, he also has Alzheimer. He paces constantly, the hospital has someone with he 24/7 as he could walk out or hurt himselve. I think of him as being lost in a fog trying to find his way home. He sits for a few minutes and then he is at it again, it is so tiring for the caregivers that they di it in 4 hour dhifts only. I can only imagine what you are going through.. I do know that they give him something to sleep. He can out pace anyone. Perhaps when the dr. Undstands what is happening you can request something to help him sleep. Do not be afraid to ask the dr. For something as they are there to help not only your mom but you also. Try to have a chat without mom present, tell the receptionest that you need to speak to the dr. Before your mom goes in. Be brutly honest with him, and make sure he knows that you are coming to the end of your rope and need his help..
The following user gives a hug of support to jagsmu:
The Following User Says Thank You to jagsmu For This Useful Post:
these patients do not sleep well. i really have insomnia and cant even count the years. meds help and the fresh outdoors may help. my mom used to get up all the time at the nh and she would pace and then steal and hide things. she was never a great sleeper either. dont know what to say but the more meds she is on will in my opinion will make her "more out of it" every day is a challenge and we just have to go with the flow. i know easier said than done. debbie
The following user gives a hug of support to debbie g:
The Following User Says Thank You to debbie g For This Useful Post:
Sleepless, my Mom was high functioning for a long time. When I look back there were signs of the dementia for years before her diagnosis. Yet she came up with ways to cope with the inabilities. She was a bookkeeper and suddenly she stopped doing books for others. She had good excuses at the time but now I realize her ability to manipulate the numbers was disappearing. But she said she just wanted to retire and do other things. Her computer always gave her trouble and it had to be the computer. Made sense to me. She did have the benefit of Dad having Vascular Dementia so what she didn't remember doing, he must have done because we knew he didn't remember. When she was finally diagnosed, like so many others, she was well into the mid stages. She was still holding it together most of the time. Then there was the super slide down. She lost her ability to deal with anything emotionally and quickly lost her ability to communicate and became incontinent. It was a super slide of just a few months. Since then she has leveled into a slow slide.
I did ask the geriatric psychiatrist about this super slide I saw. He explained that there is more than one way for the brain to do something. With those that are smart and brain trained (as he called it) the brain will take one path to do a task. If the tangles and plaques block that path the brain will find a second path. It might be a bit slower but it works. If that second path is blocked then the brain will come up with yet another path. It may seem a bit confused and a little slower yet but it works. Then when that last path is blocked it is like the "fell off a cliff" when in fact the brain was shutting down systematically over time. Beyond this our brain is filing away information. At first it catches most of the information. As the disease progresses it will start missing bits and pieces here and there. The brain will "fill in the blanks". This creates a reality that seems real to them. As the disease progresses less and less is filed away. It's not constant. Today they may get 75% and tomorrow it might be only 25% and the next day back up to 80%. But as time goes on the average of what they retain reduces. So yep, there are good days and not so good day. There may be a slower decline or a fast decline. You have to look at the average over time.
Then you have the other dementia. Dad was initially diagnosed with Alzheimer's. He took a sharp decline but then leveled off for a long time. Then I realized he took another sharp decline related to a cardiovascular even. After that more leveling off with another sharp decline with yet another cardiovascular event. Hummm... his was Vascular dementia not Alzheimer's. He was misdiagnosed for years. Vascular dementia can be slow and it's affected areas of cognition is dependent on what areas of the brain is affected. It can also be very fast.. depending on the underlying cause.
So there is no set time line. You just deal with what you are given.
As for the aimless wandering... Mom is the queen of aimless wandering. She literally walked for over 2 years. She was going "home". Long after she stopped even knowing where that was she was going there. Now she just says... "Let's go!". There was a time she walked day and night no matter what we did. She would sit, doze for a few minutes, and be back up and going. She wore the soles off her shoes! The anti psychotic medications did help. She just wandered with contentment What helped the most was the Melatonin. She got her dosage and they would wait about 15 minutes to put her to bed. For a while they had to put her to bed a few times but eventually she would sleep. Eventually she would go right to bed and to sleep. I was there tonight at 11 pm shift change. I love to show up at odd times!! The night shift girl told me tonight that Mom is always sleeping when she gets there now rather than wandering around all night as she did before. Part of this is also due to the deterioration in Mom's condition but part is the Melatonin as well. So you might want to give this a try before you go with pharmaceutical sleep medications that can have drowsy aftereffects.
The following user gives a hug of support to Gabriel:
The Following User Says Thank You to Gabriel For This Useful Post: