Does anyone have a suggestion as to a sleep aid that will give a dementia sufferer sleep vs. increasing the agitation, confusion and only making the dementia worse? My mother is 95, a hospice patient and lives with us along with my 85 year old father-in-law and our 4 month old grandson. My mother has been up numerous nights extremely confused. Of course, everything she says is very real to her and when I try to either reason with her or try to tell her she can't leave at 3am, she digs her heels in. There is no reasoning with her and I can't tie her to the bed. I need something to give her peace from her deeply confused state. I am exhausted and it breaks my heart watching her struggle with a mind that lies to her. Last night I was up all night trying to keep her from taking the car, that she quite driving 5 years ago, to pick up her brother, who died 12 years ago. She has no balance, her legs are weak and she can barely walk yet was fighting me tooth and nail because I had my hand on her arm trying to keep her from falling down. It is extremely frustrating for not only my family and myself, but her as well. I know if I could just give her a pill during those times that would knock her out and give her a good night's sleep by the next morning life would be better......for us all. Last night, I gave her a Darvocet, two Ativan and an anti-depressant that was supposed to help. HA! I know the doctors don't want to prescribe sleeping pills because they can be deadly in the elderly. I am exhausted because I care for my grandson during the day as well as my mother and now I am up all night too. I need some rest. I love my mother with all my heart and soul and would do anything for her comfort. All her life she told me, "If I EVER lose my mind, just pull the plug because I NEVER want to live like that." And here she is alive in the shell that was once my mother. It is so, so sad because I know she is miserable, exhausted and trying to make sense in situations when there is non to be made. I sure could use some suggestions. No she is not hungry, needs to use the bathroom or any of the other issues sometimes associated with agitation. It is her mind making the unreal seem real to her. I feel so awful and it is heartbreaking to watch and deal with. Thanks!
thanks for your suggestions. I am sure all caregivers can relate that the only person that understands whats going on is the caregivers. They are with there loved ones day in and day out. So they know when something is just "off". Geriatric Psy. is one thing I have put on my "to do" list. Moms psych now is not doing his job in my eyes. She seems him once/3mths for a 5-10 min.visit. All he does is rewrite her scripts. If I ask ? he actually looks at his watch like me and mom are not important. He makes me feel like we are in line at the deli counter.. now serving number 1......lol. I googled and found only one certified credential geriatric psych. so far in area about 25 -30 miles away.At this point if I can find a "REAL DOCTOR" I would drive almost any distance. The local PCH that I mentioned about doing daycare for mom suggested their house doctor. From what I am told he is the house doctor at several PCH/NH in area and he primary deals with elderly. So I am seriously considering in checking him out too, whats it really gonna hurt.
Today was a bad day for her!!! She was so confused probably cause her anxiety was in high gear all day! I tried to do our flash card game. She usually does pretty good but tonite was bad she couldn't tell me what simple pictures like a "cat" even was. I always ask her to point to parts of her face and such. She couldn't point to her nose or ears. I also noticed her squinting a good bit today. I never seen her do that before.
To anyone that reads my thoughts here. I don't want you to think that I want mom so sedated shes in a stuper. I just want to get her to stop pacing, her heart to stop pounding out of her chest and for her to stop digging at her skin. I know lately that I have had great difficulties with her bathroom habits which in itself drives me insane but for a 66 yr old women to hardly ever sleep is of more concern!!!
I will keep ya posted if I find anything out. Thanks for taking the time to read my post and responding. I appreciate your help!!! thanks again,
Manyblessings, thanks for suggesting the endocrinologist I will definetly put that on my to do list also. As well as check on that blood panel suggested if she has or hasn't had one!!
Christina28, I am very happy your mother was taken off the Amiben and you….and she……have discovered something that works. I found it to be trial and error with the fragility of the elderly system and what works for one, doesn’t for another. The best we can do is keep plugging along and trying to find the solution that best suits each individual. I often wonder if the success or failure of a medication doesn’t all hinge on the part of the brain that is blocked by the disease process and that is why there is no easy, across the board answer. I think your suggestion to consult with a Geriatric Psychiatrist is a good one and s/he will have a better understanding of how medications work on the elder brain. It certainly proved helpful with your mother.
Thank you Yellowfever for you kind words of condolence. I do miss my mother everyday,
christina
Good luck, keep us posted. I hope you find an answer soon before you both loose your health under the strain. My heart goes out to you, and all those caring for a loved one with dementia, it is one of the most difficult and heart wrenching gifts of love you will ever give.
mom hasn't slept in about 8 mths. she doesn't nap during the day!! She is full of anxiety. She is awake 20 hrs a day!! None of her doctors will give her anything to help relax her. I give her NO caffeine,she has reg. eating times. I get her out of the house several times a week to go to shopping but she never tires. She paces ALL DAY long! I take her to a local PCH to get some respite care( sometimes day visits, occasionally overnites) At first her overnites there was great she would sleep(I at first thought they gave her something? ) But once she got used to the layout of the land there she no longer sleeps there as well. Since the PCH owner knows my family she is doing respite care as a favor for me for a small fee. Which is helping my sanity some but since mom is NOT a patient there I feel bad cause she has the aides chasing her all nite!!
At home I have installed baby gates, locks up high on doors, baby monitors. I have removed everything from her room except bed and nightstand, put locks on her closet doors, she had a rocking chair in her room until last nite at 5am she was rocking in her chair and pounding it off the wall. I have tried music, a nice warm bath before bed. but she won't relax. She fights sleep!!! She does take a low dose Klonopin 2x/day. I have even gave her 2-3 at nite to see what happens NOTHING!!! Mom has taken Klonopin for YEARS I think she is immuned. I tried a sleep aids however it made her anxiety worse at nite!! I have pleaded with drs (Neuro, PCP and Psych)to help her. one dr thinks that increasing her paxil will help. I however finally admited to him that I weened her off of paxil a 1 1/2 yrs ago. Mom would cry all day and seem to be in despair. Also get this her PCP had her on a diuretic 2x/day. Mom weight on average 85-90lbs and DOESN'T retain water.One doctor wanted her to go on Serequil(not right spelling sorry) But I refused due to commercials I have seen, and web articles about not to give it to dementia patients. I think that because I am younger and asking for valium or xanax for mom they think I am the one whos trying to score pills. In the area we live there has been many drs in trouble for passing out scripts. Which makes other doctors leery!! This woman anxiety is so bad that you can feel her heart beating thru her chest most of the time. She digs at her skin. will actually dig the flesh off. She looks like she has a skin lesions. I do clean her sore daily so she won't get skin infection.My husband thinks that I need to start recording moms nite time actions and take it to the doctor for proof!!!! To be very honest, maybe I shouldn't say it I have even thought of turning to the web black market for help!! But I know that is wrong and I don't want to get in trouble. I am tired, I KNOW she is tired I can tell in her actions, her mental awareness. I am afraid if I can't get anxiety undercontrol she will have a heart attack or stroke!!
UTI's I have also been reading alot about. I took mom to doctor last week, Dr said she didn't have an UTI but I think I need to persue the issue a little more. She never has pain or complains but at times her urine is cloudy and always smelly. I know mom has a spot in her lung but her neuro dr. who found that assured me that the dementia will kill mom before tumor would. well that was the last time she was there!!!!!! Maybe the spot in her lungs is getting worse? Cancer??? At the time spot was found her PCP told me he felt it wasn't cancer!!
Another thought of mine is Dental infections?? I know that dental problems can also reek havoc on your body if untreated.moms breathe is RANK even after all the hygiene daily. I guess I have to do some investigations
Prior to 8mo ago mom sleep okay, still anxious though but she would relax to sleep for longer periods at a time.
I took notes of everyones suggestions and meds. I guess it doesn't hurt to try !!!!! I recently changed mom supplement insurance. So she now has a broader selection of doctors!!
The BEST (personal, NONdoctor) advise I can give is to use a powder called D-Mannose as a DAILY regiment to prevent UTI's.
I can tell you from personal experience that this helped my mother TREMENDOUSLY, and can't stress enough how much it helped her attitude NOT to have a UTI!
My heart goes out to all of you still fighting this fight. My journey is over with my mother (she has passed). God bless ALL of you.
Honestly I don't think doctors do know. Their advice is based on some law of averages. Medicine is not an exact science and I always got the feeling that when they saw 86 and Alzheimer's on her chart it was like..."Eh". She's not 25 and no one's gonna sue. I tell ya. I'm rethinking this whole care situation. Look how many posts and and suggestions there are that come from patients and their experiences with how many "specialists". I'm convinced there isn't an "answer".
I'm just going to try to keep my sanity and keep her comfortable and safe.
Pillowsonic has an inexpensive pillow speaker that will attach to almost any device with a standard 'plug'. It helps for those with hearing deficiencies, since it doesn't disturb anyone else in the room. Even for the caregiver, this speaker allows you to relax, yet still have 'one ear open' to listen for them.
God Bless.
I've been slow to post on this topic because I've been enjoying my newly found rest. Since my mom's bladder infection has been treated she is sleeping like a baby. It's been a long year. As I was going through her things this morning it came to me that in reality I had had two problems with her at night- insomnia and agitation. The insomnia problem was a hard one but much easier to deal with when she was calm.
When she was on hospice a harpist was sent to play for her. I was amazed at the effect it had on her. I had tried new age music, various dvd's with rain sounds and waves etc. None of them had worked. But this music was different. The first thing I noticed was that it didn't have a melody, any kind of tempo really or any kind of pattern to it. The harpist said it was based on the chants of Gregorian(?) monks. I asked her if it was something could buy and she said she would get me a cd but she never did. After much searching I found Paul Baker's "The Tranquil Harp" which was pretty close and it did the job. I even loaded it on an ipod for her when she got crazy during the day (it put me to sleep- I couldn't listen to it).
It was last March that I was searching for it. Maybe there is more available online now, I don't know but it's something to consider. It really helped us with the agitation part of her nights which was much worse than her simply being awake. Sorry I didn't think of it sooner...I haven't slept in a year :)
Now God is taking are of her, that is a relief.
Trazodone is very popular with my clients (MICA). It keeps them from ambulating throughout the night.
BLESSINGS:
Talk with her doctor first. In this great pharmaceutical country of ours, no doubt there's a pill out there to alleviate her discomfort ... and yours.
-- ED
Sadly, I lost my mother Dec. 11. I deeply miss her, but glad she is finally resting peacefully and with those who have gone on before. I am grateful her torture has ended and, once again, she can think clearly and no longer has to deal with the horrible confusion. I wish you all tremendous peace, strength and much joy, as you continue caring for loved ones who struggle so with this horrific and ugly disease. Blessings and love to all.
She still has her days and nights mixed up, not sure that will ever straighten out. Currently, she is on 10mg of Valium (Diazepam) and Darvocet~N every evening, plus a 100mg. Zoloft daily and 0.5mg. Ativan every 4 hours. I can give her up to 6 Ativan in a four hour period, but usually two will do the trick if she is really on a roll. The Valium and Darvocet take a while to kick in, like a couple of hours, however they do help quiet her mind and body for the night. I know this sounds like a lot, but I just learned people of Scandinavian decent do not react to medications to the degree others do. So, compound that resistance with the dementia and what would take down an elephant, doesn’t faze Mom. Even at these doses, she is still highly agitated at times.
She has been in the Hospice House this week because I had a house full of family for Thanksgiving and knew I couldn’t handle all the holiday activities plus her. Sadly, she wouldn’t know the difference or be able to participate and, most of all, she never wanted to be remembered like she is now. I am so deeply grateful we have such a wonderful facility in our area to provide respite for families dealing with the stress of being 24/7 care givers to patients dying from these cruel diseases. It is like Heaven having a few days to be normal, breathe and regroup so I can have the strength to continue helping Mom find peace and give her all the love and care I possibly can as she struggles.
Some of you have shared how you keep track of your loved ones when they begin to wander. We moved Mom into the walkout, lower level of our home so she could have a feeling of independence in an entire area all her own. We brought her furniture, pictures and belongings so it would feel as familiar, homey, welcoming and comfortable as possible. She has a living room, dining room, TV room, kitchen, handicapped bath and her own bedroom, plus other spaces. When she arrived, she was doing fairly well, but did need assistance at times when she wasn’t upstairs with us. Our first step was the clip on alarm at night, which meant to hear it, I had to sleep down there with her. After a while this got old. Next we progressed to a sound monitor (like a baby monitor system) so I could hear the alarm while in my bedroom two flights up. That worked for a while but found I was running downstairs for no reason as sometimes the alarm pulled off while she was simply wiggling in bed, resulting in both of us needlessly loosing sleep. When Mom was still mobile but slipping, what we found worked wonders, while maintaining the integrity of our home, was to reverse the locks on all doors leading from her area. This gave her mobility and freedom, yet kept her in a safe environment. Finally, we purchased two video monitors and placed one in her bedroom and the other in the hall leading to her bathroom. I stopped using the clip on alarm and pinned the sound monitor to the down comforter, so every time she wiggled the rustling would wake me up, but it didn’t disturb her. I could also see if she was getting up or just readjusting in bed. When she was up, I knew if she was wandering and agitated or just making a potty run. I know this may sound terrible watching her, it was the only way we could keep her safe. I get enough exercise running those stairs every day and this saves unnecessary trips that only disturb her when, in reality, she is perfectly content.
One last little story. There is an open area where stairs lead to the upper floors. We needed to find a way to keep her from climbing them, wandering the house in the pitch black at 3am, like she was doing for a while and possibly going outside. Thinking an old mattress turned on its side would do the trick nicely, as it just fit across the opening. We tied it to the closet door handle on one side and to the locked freezer door handle on the opposite side. Well, this little, frail, old lady, who couldn’t remember how to pour a glass of juice, figured out where to find a pair of scissors, cut the ropes and head up stairs. That was when the hall video went in and all sharp objects were promptly removed. It’s absolutely amazing what they can do!!! We certainly learn how to be creative protecting them, don’t we? Now that she no longer has the ability to move on her own, I still use the monitor in her bedroom to keep an eye on her during the night. I waken every time she moves, but this way, I can see if she is moving to reposition or if she needs me to come down and take her to the bathroom or help her in other ways. This system has saved my sanity and allowed me to get a few hours sleep. Sorry to have rambled so long, but when I saw doors being cut in half, I thought I would share a few of our less drastic solutions.
Thank you all again for each and every suggestion, I will try them if our current solution begins to lose its effectiveness. I pray Mom doesn’t have to suffer much longer with this insidious disease and she will soon be at peace, released from this hell where her mind has her imprisoned. My thoughts and prayers are with all of you as you too traverse Dementia Mountain with your loved ones.
Oh and by the way, I had to take Mom to the ER to be unimpacted!!! So take care of this problem before that happens ok. be right back
Just a little side note: A few months ago I started sleeping on an air mattress on her floor. She has a child's bed rail which I've read IS A BIG NO NO because they'll hurt themselves climbing over them and I'm sure that's true. In our case however she just rattles it and starts yelling (she could slide down and around it if she was really trying to get out). Anyway, that wakes me up and it only takes a minute to give her the Lorazepam (same as Ativan I think??) and we're both quickly back to sleep. Made a world of difference to me. Sleeping in her room on an air mattress sounds awful but it sure beats chasing her through the house at 3 in the morning and trying to get her back into bed. I could never get back to sleep after wards.....
Scottie