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looking after my mum with dementia, 24/7, is causing severe depression and I also have ptsd through a robbery on my dads home were I and my dad were nearly killed, my dad is also ill ptsd and depression and needs a hip replacement suffering severe pain and can hardly walk, so im looking after both, I get no sleep of a night what so ever im up and down the stairs all night as I put my mum to bed she gets up all the time, I put her back to bed and shes up again, this carries on till about 7 in the morning while im following her sobbing and exhausted, I tried all tablets but they don't work, she fights it, then I out her on nytol bingo, it worked for so long now the effect has worn of, she is on the go all day and all night and will nod of for an hour or so in the day, surly to god there's got to be something out there, I genuinely feel as if im having a breakdown but cant fully because there's no way I would put my mum in care, I will carry on till I drop, she needs to go into respite care just the days only, but she wont go and I no she will be looking for me and crying, I don't no what to do maybe it wouldn't be so bad if she had a normal sleep pattern, you wouldn't let a dog suffer in this way never mind a human being alzimers and dementia are horrible cruel life destroying illnesses I feel for for you all who care for your loved ones, don't no how much longer I can cope this is cruel so cruel

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A day program sounds like a great idea for your mom. Mine attends one Monday thru Friday and has been for about a year. Each morning is a battle to get her to go, though. But, I have become quite clever, I'll tell her we need to meet with the nurse, someone needs her to help the today, we are going shopping, whatever I think will work on that day. My mom really enjoys the program, they keep her busy, and tire her out with many different activities. She still gets up and down for a couple, three hours after she goes to bed, but then sleeps pretty well. Have you tried chamomile tea to calm her, this has worked with my mom in the mornings, just to take the edge off.

I would also talk to her doc, could be sundowning, and there are many medications that will help with that, and maybe you can get some sleep too.
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What does her doctor suggest?

I absolutely could not have kept my husband home, no matter how much I loved him, if his doctors had not been able to solve the challenge of his restless nights. You cannot be an effective caregiver with continuous sleep deprivation. It is not fair to you and it is not safe for your loved ones.

I see only two safe solutions:

1) Get medical assistance to solve the problem. This may take trying more than one solution until one works.
2) Hire a night caregiver.

That's it.

Having both parents go to a day program and getting your sleep during the day may be useful, too, but most people have a very tough time adjusting to that reversal of normal sleep patterns.

You may be willing to carry on until you drop, but what will your mother and father do with you gone? You need a solution that protects your sanity and health, for your parents' sake as well as for you.

Start with Mother's doctor.
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thank you for the advice, to jean and dadimhere xx it is definitely sun downing, is there anything they can take for the sun downing, I didn't know you could get night time care, I don't think our doctor who deals with mum is helping that much, she is on diazepam to help calm her anxieties which helps but just the constant walking all day and night, if she sits down she stands straight away would love to no what makes them do this, she is so exhausted but still carry's on, thank you again x
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if I'm not mistaken diazepam is xanax. My moms doc did not want her on it for treatment of sundowning. While it is addictive, it caused lethargy in mom and she had very hard time getting around. That said, do not just stop the diazepam, it takes tapering off. You should get her to another doctor, a neurologist that specializes in dementia, the earlier the better.
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And Xanax because it is addictive, requires monitoring to increase dosage when necessary if prescribed by a doctor. Another reason why you should get her to a doctor that specializes in treatment of the elderly, more specifically one that knows dementia.
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my mum is under a dementia doctor, what is Xanax, and also they done a few tests with mum and said she failed and wasn't aloud the drug, that they give for Alzheimer's, the diazepam, help with her panic attacks, my doctor also told me she can only have the diazepam tempory as they are addictive, hang on addictive my poor mum is dying, she has no life her dignity has gone for god sake what does it matter, if they are addictive she cant even say a sentence I just don't get it, who are these doctors to pick and choose weather there addictive or not, the carer knows best, thank you all very much for the time you have given to write back and god bless you all, x
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Where is your Mother going to go, when you are no longer able to care for you. I am not trying to be mean, but you mention it yourself?

Whatever that answer is, needs to happen now. I applaud you for trying to take care of her, but you have done it as long as you can. We have all been in a similar position and we appreciate what you are going through.
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Ativan can have the opposite effect than desired in the elderly. I don't think the addictive effect is very important at this stage. If there is pain you have to give what it takes to relieve it, it is the same with anxiety and agitation. but giving huge doses of anxiolitics does not work you need to change the medications. You just have to keep trying till you find the right drug and dosage. The rules of the game are that you start with a small dose and slowly increase as needed. you are your Moms advocate so don't let the Dr set the rules without an explanation that you can understand. Take someone with you who is not emotionally involved to help you remember what was said and work things out. I am sure there is help out there for you and your Mom. Are you getting proper treatment for your PTSD? there is hope don't give up
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Diazipam is the generic of Xanax.
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Debbiebell...I'm not sure if really at this point anything works...for some reason with my mom. The drugs had adverse reactions to her. Plus if she is overmedicated there is risk of her falling. Mom was so drugged at times she could hardly stand up but that still wouldn't stop her from trying. The dementia that she had was LBD (lewey body dementia) and as with Jeannegibb's husband the solutions are very limited. But having someone take on night care would be a great help to you. Is your mom or dad on any kind of assistance? Do they have Hospice? When mom was delusional and would be up all night long. She was in her last stage of dementia. At this point Hospice was a great help with setting us up with equipment, hospital beds with rails, medications, and other devices as bed alarms to help with alerting us of her getting up.
The exhaustion will tear you down..you need sleep. I know exactly what you are feeling...was there only a year ago. So try and get someone to sit with her so you can rest.
Keep coming back here for advice..or if you need to just to vent. We all know what you are going through....and its so nice to know that you can relate to someone who has been there or is currently there. God Bless...and Good luck.
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One suggestion - from an amazing nurse practitioner who specializes in seeing people with dementia: Make sure a person takes TWO naps a day - one after breakfast and one in the late afternoon. This goes a long way toward helping that person sleep at night. My mom took two naps a day and it really was helpful.
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my mom also with dementia is in a day program that is wonderful for her, lots of activities that wear her out. Most of the time she sleeps well at night after up and down for a few hours. She also takes 75 mg of Seriously that has really helped with sundowning.
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not 75 mg of seriously, darn spellchecker, but seroquel.
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Diazepam is actually Valium, not Xanax. Xanax is called alprazolam. They are in the same family of sedatives known as benzodiazepines, but valium (diazepam) is longer acting and "stronger" than Xanax.
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Ahh, that's right diazepam is valium, Thanks KMCY
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You must either get someone to come to your home at night or place her in nursing home where of course there is care 24/7 so that you can get some peace back in your life and/or seek another opinion re meds for your mother.
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Sleep deprivation is so awful. I feel your pain. I was in your situation not long ago. My mother was going to daycare and I was working fulltime. She started not sleeping as well and going to daycare and me going to work exhausted. She ended up gettting sick from that and ended up needing skilled nursing in a nursing home.. Once in the nursing home amazingly she slept, she was always well, she was never happy or adjusted. So knowing there is no way I could bring her home again, we looked into a memory center. She was placed last week and is doing wonderful. I can't explain the feeling of going there and seeing her happy and wanting me to leave so she could get on with the activities.. The staff is amazing with the patients.. I really feel that this life is a better life for her then being at home. She told me she feels safe, clean and so much better. They have at least six activities everyday to keep them busy.. I needed to share this with you for some reason. I hope it helps and wish the best for you..
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Sylvia, I really do not know how you worked full time and cared for your mom too. I take mom to a day program, but it is on her time schedule to say nothing of appointments. She loves the program, they keep her busy with many different activities and wear her out, she sleeps fairly well after 2-3 hours of up and down. If I tried to get her on a regular schedule, it would never work so I could find work. I get her there anywhere between 930 and 11, just depending on her. Do you think that your mom might have slept better if it had been more on her schedule? Just asking, because believe me, I get tired of people asking me "so, do you work?" It is kind of like that old statement, "so you are just a housewife."
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Ya I think maybe it would have been better, I had a caregiver come at 6:30 am to help get her ready and on the van by 8:15 , we were put on a schedule because of the transportation, and it was pretty long days that is for sure. The caregive got here again at 3:30 and was with her till I arrived home from work at 5:30. She started out going to bed around 7 and being fine.. I think it was too much to put her on a schedule. She started getting sick all the time and it was hard to deal with all the er visits and late nights and my boss was getting upset because it was affecting my work so much. I was very verbal telling him that my mother was just as important as the other employees kids that were always sick with them missing work and having issues as well.. I just became exhausted, depressed , angry, defensive and very scared of loosing my mother. My father passed away suddenly on christmas night 2012 and it was then we realized how progressed she really was and I chose to have her live with me and my son who is 16. She wasn't the best mother , but she wasn't the worst.. She started having sundowning as well and could just drive you to want to run out of the house.. I went through such a sense of loss when she had to go to the nursing home. Her case manager insisted she stay there until she could be managed at home. Then she decided her level of care was too much for homecare , maybe if I didn't have to work that would have made all the difference in the world, but being a single parent that was not an option. My parents did not plan for the future and after living with my mom my dad had to have been to overwhelmed to care about anything.. he was the silent type and to give you an example he never even told us he suspected dementia years ago,, we finally came to our own conclusion and took her to banner alzheimers and she was diagnosed with frontal lobe.. I agree with you,, they need to be on their own schedule and people who ask you do you work? They have no clue how much you work or they wouldn't ask,, it takes living with someone with dementia to ever truly understand the work involved. I didn't have any help on the weekends and I think work was my actual saving grace.. Keep your chin up, you are doing good.
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Debbiebell. I hope you get help right away. You WILL burn out trying to do everything. I tried for my husband, and it turned into a nightmare here. I should have gotten help long before, but wanted to keep things at home as "normal" as possible for my sons and for my husband, who has advanced stage brain cancer and dementia from 4 brain surgeries. If you don't get the help you need it will break you. And I can tell you from experience now it is a long road back. You are important too- please don't forget that. You matter too...
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Sylvia, we too did not realize how bad mom was until two years ago when her husband of 5 years had to have a major surgery followed by 4 months of rehab. He too is the silent type and we have discussed this many times. When he was released home, he wouldn't have been if I weren't there, he was absolutely astounded by the change in mom, he had not been around it 24/7 for a number of months, and was in denial. Still he has problems with acknowledging that mom has dementia. When I bring her home from the day program he still sometimes asks her what she did that day, just to test her, he says. She is never able to answer him, she just does not remember. I have asked him to stop asking that it embarasses her and depresses her. Most of the time he will not ask now, but it still happens sometimes. I think he keeps hoping that one day she will, magically, be able to tell him, more denial.
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Try, the new Nyquil for sleep, the liquid, faster absorbing in liquid form, if you aren't giving her something for sundowning. But it sounds as if you need to get something for the sundown symptoms which should take care of sleep too.
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I had my husband 8 years with Altizheimer, and he used to sleep all the time, he did not know me, and we had carers every day but they would not come after 7pm at night, my son and cousin used to wash him at bedtime, and he would sleep all night, He could not eat or hold utensils to eat with he had 24/7 care from me and my cousin, we used to buy Pureed food and I had to feed him,
But if I could have those days back I would give all, he passed away on June 6th this year, and I suffer myself with anxiety panics for many years, and have taken valium myself for over 30 years, Just to have him back, it would be worth it to have him with me, I suffer more now he has gone.
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It is a dreadful illness, and he would get cross with me, but just to have him with me I would be so happy, We bought a mobility Car to take him out, jhe did not know where he was, and he could not see, but I would never have put him in a home
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I too care for my Mom 24/7. When I asked her to move in with me 3 years ago she had the beginning stages of dementia, sundowning, and was in a wheel chair because of lower leg amputation. Her dementia is now in the later stages and she lost her eye sight 2 years ago due to wet macular degeneration.
Overall she is content and easy going, but when she lost her eyesight she was hell on wheels at night and would doze on and off during the day - making us both extremely irritable and exhausted.
After several months of very little sleep I begged the Dr's for something to knock Mom out for even a litttle while. All of the sleeping pills they perscribed just made her agitated and hallucinating . . I figured it was better to be awake all night than to make Mom crazy.
Process of illimination led me to Melatonin at 6:00pm, a banana at 7:00 and she is ready for bed at 8:00 . . .Melatonin helps to keep her from getting to an agitated state and I read somewhere that banana's help with sleep along with making sure she has a full stomache before heading to bed. For today this is working for us and Mom is asleep usually by 10:00 and stays asleep until morning :) .
I hope you too can find a combination of things that will give both you and your Mom a peaceful night . . . until then hang in there and know that there are people who understand and care.
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Sylvia - How wonderful that you found a good memory center. I quit work to care for my mom but I still believe she would have done even better at a good Alzheimer's-oriented facility --- only I did not know of any in Chicago. Of course, POA sister would have had to make the decision anyway and now it's a moot point. Still, I wish I had known of a really good placement. You are very lucky!!!
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Thank you cbhillman, it has been a long hard road, she was so miserable at the nursing home waiting to get her needs met,, she left the most heartbreaking messages for help.. I feel really blessed to have her in this great facility, the main thing is the people seem to love what they do, they are not understaffed and they have constant activities to keep them busy.. She actually wanted us to leave yesterday so she could go to the activities. When they have dementia they need that extra attention and to feel like they still matter. She always loved daycare and that is how this place seems except she lives there. I did the best I could but I really feel like this is a better life for her,, she didn't do good at home , she always has to be doing something that is her personality so on the weekends with no daycare for two days she would start fixating on things and and that was never good. I just want to see her happy, we lost my father suddenly christmas night he died in his sleep and she found him, so basically overnight she lost her husband of fifty years, the daycare center she loved and was used to (she had to move in with me, they only had a one bedroom condo), we had to give two of her dogs away. (she had three). and she had to leave the place she lived in for over 25 years. That is so much to contend with alone and then add dementia.. So heartbreaking. And now ten months later she is finally in a safe place. Thank you jesus. I am sure some people with dementia are better at home, they can keep occupied,, my mother was not that type. Are you still caring for your mother?
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My mother was just in the hospital to have her gall bladder removed and her dementia became worse. The doctors tried, Ativan, Seroquel, Morphine and many other drugs and every single one of them acted the reverse of what they were intended for. She was hallucinating, she was climbing over the rails to get out of bed and chewed off the restraints. It was a nightmare from hell!! I was up for 36 hours straight with her trying to care for her and keep her in bed. It is now almost 11pm at night and Mom was given medication to put her to sleep at 7:30 and she is up walking the halls. She has been in my room 27 times to check on the dog. She will flip on my light at night after I am asleep and wake me up to check the dog or feed the dog who is asleep. I swear I need help as well because I just cannot keep going like this with no sleep. I do not want her to be a drugged out zombie, but PLEASE GOD I NEED SLEEP!!!!!
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Raven1, I have heard that before. Meaning the dementia gets worse after they are put under. Yes you need sleep, do you have anyone to help? I'm sorry things are tougher for you now.
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Years ago, when first dealing with dementia-type issues with my dad, I found this article on the New York Times: If only more places recognized the unique needs of dementia patients re: night-time respite cover, perhaps this would no longer be a unique program itself.

I hope for the best for us all: caregivers and patients alike.
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