Dementia Support Line
Advice
Is it typical for people with dementia to sleep a lot during the day?
People with dementia, especially those in the later stages, can often spend a lot of time sleeping. This can sometimes be worrying for carers, friends and family. Find out why a person with dementia might sleep more than an average person of their age.
It is quite common for a person with dementia, especially in the later stages, to spend a lot of their time sleeping – both during the day and night. This can sometimes be distressing for the person’s family and friends, as they may worry that something is wrong.
Sleeping more and more is a common feature of later-stage dementia. As the disease progresses, the damage to a person’s brain becomes more extensive and they gradually become weaker and frailer over time.
As a result, a person with dementia may find it quite exhausting to do relatively simple tasks like communicating, eating or trying to understand what is going on around them. This can make the person sleep more during the day as their symptoms become more severe.
Some medications may contribute to sleepiness. These include some antipsychotics, antidepressants, antihistamines and of course sleeping pills.
Sleeping disorders unrelated to dementia, such as having breathing that occasionally stops during sleep (known as ‘apnoea’), can also contribute to sleeping for longer.
What should I do if a person with dementia is sleeping a lot?
If the person is in the later stages of dementia and they have gradually started sleeping more and more, it is likely to be due to the dementia progressing.
However, if the excessive sleeping has started more suddenly, or the person doesn’t seem well in other ways, it may have another cause.
If this is the case you should speak to the GP, to rule out any infections or conditions that could be affecting the person's sleep. It may also be worth asking for a medication review with the GP or speaking to a pharmacist as medication can cause a range of side effects.
Providing the person doesn’t appear to be uncomfortable or distressed, then sleeping more during the day isn’t normally a reason to be worried.
However, if a person is lying down in bed and asleep for most of the time they will need to be looked after to make sure they don’t develop any physical health problems. This sort of care is normally done by a health or social care professional in a care home or hospice. If the person is still living at home though, then it’s important to get advice from your GP or nurse on how best to do this.
Why does dementia affect sleep?
Problems with sleep are very common for people with dementia. They can include:
- sleeping during the day and being awake and restless during the night
- becoming disorientated in the dark if they wake up to use the toilet
- waking up more often and staying awake longer during the night
- getting up in the early hours and thinking it’s day time or time to go to work (disorientation in time)
- not being able to tell the difference between night and day.
Nobody completely understands why dementia affects sleeping patterns. For some people, it may be that their internal ‘biological clock’, which judges what time it is, becomes damaged so the person starts to feel sleepy at the wrong time of day.
There are also other parts of the brain which control whether or not we stay awake, and these may also not work properly if they become damaged.
Sometimes a person with dementia might completely reverse their normal sleep pattern, staying up all night and then sleeping all day.
It's common for people with dementia, especially in the later stages, to spend a lot of their time sleeping
Does quality of sleep matter for people with dementia?
The quality of a person's sleep gradually deteriorates as they get older. They tend to get less deep or ‘slow-wave’ sleep, which helps to keep the brain healthy and refreshed.
Even though a person with dementia may end up sleeping more than a typical person of their age – even as much as 14–15 hours a day – it is unlikely to all be good quality sleep.
Sleeping a lot can also be influenced by people’s sleeping patterns before they had dementia, as some people need more sleep than others.
Sleep for people who have dementia with Lewy bodies and Parkinson’s disease
The type of dementia you have can affect your sleep.
People who have dementia caused by Lewy body disease, such as Parkinsons’ disease (PD) or dementia with Lewy bodies (DLB) are often sleepy by day but have very restless and disturbed nights. They can suffer from confusion, nightmares and hallucinations. Insomnia, sleep apnoea (breathing difficulties) and restless legs are common symptoms.
A person affected with these types of dementia may often unknowingly ‘act’ out their dreams by shouting and moving around in bed.
They can even cause injury to themselves and/or their sleeping partner. This is called rapid eye movement (REM) sleep behaviour disorder or RBD, and tends to happen from the earliest stages of the disease onwards.
This can be exhausting and often leaves the person feeling like they haven’t slept at all, so they are very tired and sleepy during the day.
It can be hard to stay awake during the day after a poor night’s sleep but, if possible, it’s best to try to limit sleep during the day to small bursts or ‘catnaps’. Otherwise the person’s body clock can become very confused and this makes sleeping well during the night even harder.
Read more about sleep and dementia
Learn more about how dementia can affect sleeping patterns, as well as our tips for healthy sleep.
This article was first published in 2019. It was most recently updated on 29 January 2024.
Joan
saysMy husband was sent to hospital by his memory care facility due high temp and heart rate. He is not ambulatory due to botched hip replacement. and is incontinent. Hospital is treating him for a UTI. Based on past experience his “memory care” facility cannot properly care for him following discharge from hospital. I want to bring him home. He responds to me. My issue is how to handle bathing, incontinence issues, etc. at home. He has the funds to hire help, but where do I find competent caregivers.
Kathleen
saysLook up 'In Home Healthcare' agencies in your area. Then do interviews with them or get recommendations from family, friends, co-workers, and neighbors. Some agencies have aids that will bathe or Occupational Therapists that will teach you how to bathe them and/or help them and you will daily needed tasks. They gave us great suggestions...we bought a toilet handle that attaches to the back of the toilet and has handles on both sides, a heater for the bathroom to help keep it warm while bathing, a walker, a cane, etc. All have nurses that can come once or twice a week and some physical therapists as well (to teach exercises to gain back strength if possible.) Buy some Depends for him to wear for incontinence, as well as mattress covers that are washable. Buy 2, second to put on while other is in the wash.
Tom
saysWe currently have two different in home senior care agencies assisting me take care of my wife who has dementia. The competency of your caregiver agency will depend upon where you live and availability of caregivers may be limited due to COVID. You need to be diligent in the selection process to make sure you understand their rules and billing practices. Even so, it may take several caregiver interviews and trial periods to find the right personality fit. Once you find the right caregiver , it will help relieve some of the pressure on you. You will need to have some personal time off for as helpful as an agency can be the main caregiver responsibility will fall on you.
Connie
saysThe hospital should have a caseworker /social worker assigned to your husband and can set up to have a home health agency come to your home and provide assistance. As previously mentioned , they have many services available. Make sure you tell the hospital staff you want this. Also, word of mouth is how I found 3 lovely ladies to help me with my mother, who is 83 and has vascular dementia. Don’t hesitate to ask friends and family If they know of anyone that does private duty sitting. You never know if you don’t ask. Good luck.
Irene Quinn
saysI have been looking after my husband since he suffered two massive brain haemorrhages 32 years ago aged 48 . The last 5 years he has had Alzheimer's and its 24/7 care. He has to have everything done for him ,can't stand or walk alone due to the damage to his brain he's sleeps most of the time and no conversation at all.
Cyndi Scarlett
saysI'm in the same boat with my Mom. I brought her home to live with me because of the absolutely awful care she was receiving in the memory care unit. I advertized on Next door for caregivers and found four angels who are fabulous. I interviewed them and then did background checks. I have them for about 40 hours/week; Sunday - Saturday. They come in the morning and again in the evening. Mom is sleeping more and more, eating and interacting less and less but I know she's loved and getting great care and that's what's important to me. It certainly isn't easy but she was a fabulous Mom and yes, while she's had her life, it's my honor to care for her.
Robert R Salcido
saysCyndi
I could not agree more and it was nice reading your blog..
My Mother was wonderful and still is. we have good and bad days I have been caring fir her for two years now . She has now started to sleep more and more . It is an honor to care for her I have no Family support in anyway which is unbelievable to me considering she gave her life to my sister and her children And do not live far away.
The only real support we had was from a dear friend whom we considered family who lived with us however the young man that was helping us just passed . He was with us for 18 years So things are very different and extreme lonely . I have been fortunate enough to find someone to help care for my Mom once COVID is less widespread . ( we have also both had our vaccines) She was a wonderful caregiver for a neighbor and I feel that she will give my mother the care she will need when I’m not able
As hard as this is I realize it never will get better all we can do is be there for the ones we love so dearly and try to remember how wonderful they were and make them as comfortable, safe, loved and respected as much as possible and we are fortunate enough to have them home with us
Jan
saysMy mother is now 101. 5 years ago I sold my house, quit my job, postponed my retirement plans, left all family and friends and rented a house for my mom and me near her home. I am now 70 and we are living together. My mother coped well on her own until about age 96. Then she went downhill with dementia quickly. She has no other health issues. We put her on Hospice for the first 2 1/2 years. She is a slow progressive. She is now needs total care. She is bed bound, does not communicate, totally in continent, and must be fed puréed food and spoon fed thickened liquids. She now sleeps 22 hours per day and must be turned in bed every 2 hours to prevent bed sores. I have 3 caregivers that work with me to provide her care. I provide about 20% of the direct care. My best advice is to find a great agency and hire several experienced caregivers to help you it still requires constant management and guidance of the caregivers. Set daily routines to follow. This is helpful to the caregivers and patient. I am always sleep deprived, exhausted, frustrated, and on the verge of giving up. But just keep working on it each day. Be ready to evolve with routines, procedures, feeding, etc as the patient evolves. Just do your best each day and know it will never be perfect and can always be improved. Let the patient guide your care. Even though they may not talk they can communicate if you watch carefully. Also, know that done like my mom can understand most of what we say. We have one way conversations with her when she is awake. We talk about everything with her from politics to weather to family to funny things that happen in our lives. I even share my ups and downs with her. She rarely responds but occasionally ally she will say something. A word or maybe a simple sentence. Thus may only be once a week but when she does you know there is a person on there that is as frustrated as you. I thank her when she helps by maybe opening her mouth wide enough for the spoon to help with feeding or other very small gestures. I apologize to her when I goof up with a diaper change or feed her with tears in my eyes. She sees, hears, feels, and wishes she could help. Know you are both in this together and both of you are trying your best. I dream of a future of freedom but for now this is my life. When I’m not feeling sorry for myself I realize it’s really not that bad. I am healthy and she is happy. She will turn 102 in August and I am looking forward to that great day.
Amy gemmell
saysHi all , my nan is 82 and has had Covid has come out of her isolation period now she’s not slept for 3 nights and just can’t not settle she’s hallucinating , she’s on sleeping tablets but don’t seem to be working ! No one will come out to her due to ‘Covid’ , does anyone know of any techniques of how to try and relax someone with dementia
Came across this article
saysMusic, singing, reading, rubbing hand, talking about good memories.
Marie
saysHello if you ask her doctor for Rivitrol drops and/ or tablet form it often help calm down people with dementia
Aurora Carballo
saysHI Amy
We have similar issues with my father in law which is 94 with Congested Heart Failure some dimentia and very aggressive . The toughest challenge is he can no longer live alone we watch him on weekends and hired Monday Thru Friday help it’s expensive but we are sacrificing a lot to keep him from going to a senior facility his challenge is he don’t sleep at night . Huge problem for caretaker . After failed prescribed sleeping pills , we hear that putting peeled garlic clove under his pillow nightly he would sleep some and or calm down . It’s been a week and most nights it’s huge improvement . Last night was a little setback he was hallucinating that someone was in his room but caretaker managed to assure him no one was hiding in his closet and went back sleep . Try the garlic clove it’s cheaper than meds and may work for you !
Margaret
saysHi Amy, I'm so sorry you are going through this. My mom is 90 in late stage dementia and started hallucinating and sleeping a lot and has lost interest in everything. Her doctor put her on an anti-psychotic med which seems to have reduced the hallucinations a bit, and do make her groggy. We switched her from a regular GP to a doctor who specializes in elder care and a office staff who also understand the needs of elders with dementia - they are a good source. Music does seem to calm her a bit - we will put youtube on the Andrea Boccelli station and she likes that. Good luck!!
Gail
saysBe careful of sleeping tablets as the elderly it’s not supposed to use most sleep aids. I think they could backfire on them. My 90 yr old mother can be up for a full 36 hours and then sleep for an entire day. she is bedridden so at least I don’t have to worry about her wandering.
Sheree Byrd
saysMy husband76 also has dimentia and he went thru that staying up 3 days and nights. I remembered after a while that his GP had given him a steroid injection, once it was out of his system he calmed down and started sleeping much better. It totally
takes a toll on both the patient and caregiver.
Beverley Griffiths
saysMy mother has dementia and alzheimer's she stays in her bed most if the time, she has a bad back ,probably because she will not sit in the front room as she says it's cold in there ,it is no colder in there then the bedroom
So she has no back support due to lying down all the time
Such a worry
Jothi Ernest
saysMy mom is 78 yrs old. She sleeps all day but having tubs feeding. The doctor have started her on awake tablet but waiting for the result.It is sad to sleep her sleeping.
Esmeralda
saysI need hug 😭
Terry
saysMy 88 yo mom has dementia and like many of your loved ones is sleeping between 17 to 20 hours a day. She tires so quickly and it’s gotten to the point that she rarely eats more than 1 meal a day. God bless all of you and I wish you and your families much comfort.
Ginette
saysHi Terrey. my mom is same do I understand your situation. She sleeps all the time. She doesnt even answer the phone anymore. Her two other children live 2000 miles away. My sister believes that there is absolutely nothing wrong with mom and that i am just not Caring for her properly. (my sister has visited mom twice in the past 20 -25 years). Awaiting assisted living place with nuns. Waiting list is long. Mom has lost weight and is very weak. She is confused and just wants to sleep.
Annmarie Muir
saysMy dad has just slept for 48 hours is this normal only eating once a day and that's a struggle to get him to do that hes 86 and has dementia for 8 years
Russell Baum
saysI understand your concern. Over the Christmas season my mother who also has dementia slept twice for for about 35 hours waking up two days after she went to bed much earlier in the morning than she normally does. Her neurologist thinks she may have depression because her husband died a month ago. The neurologist is evaluating whether an antidepressant might help. He previously had her using a regimen of neurological drugs in early stages of dementia which he took her off about two years ago when they no longer appeared to be helping. The excessive sleeping leading up to the full day sleeping episodes is new in her case following her husband’s funeral.
Robert fifield
saysMy Nan 97 dementia has also just slept for 42 hours over Boxing Day And the 27th.It’s apparently late stages but they do advise to try keep them awake and to sleep at normal times annemarie.Good luck
S Tucker
saysMy mom is 80yrs old and lived by herself after my dad passed with lung cancer at age 59. She has a lot of medical problems such as heart failure, diabetes, blood pressure, Afib,Copd,Sleep apnea and on oxygen all day .In 2017 started having issues with headache confusion not being able hold body functions. Took her to neurologist had fluid removed from spine thought they might have to put shunt in head but didn’t.0ver course next 3 years memory got worse started retaining fluid and breathing got worse and in 2019 coded on us 2 times . And when in hospital first time trmived 20 lbs fluid and Dec last year 40lbs and was diagnosed with pulmonary Hypertension put on silenafield and two kinds fluid medicine and has to have round clock care . She was also diagnosed with early onset Dematia and her sister had full onset Alzheimer’s at age 80. We promised dad we would take care mom but as the sibling that is with her half week lately has become very exhausting.She recently back in August 2020 all of sudden develop a back fracture and everything has went down hill. She constantly getting Uti , memory is worsening , went to sleeping lot during day Being up and down all night . Doesn’t want to shower. Doesn’t want to go bathroom want to use potty chair . Had become very weak shuffling feet when walking. Has starting hearing and seeing things doesn’t think that it is her home and refuse to wear her trilogy mask . Becomes very angry argumentative and tells other how mean I am and lies . I am oldest and some some siblings help and some don’t and ones that don’t wants to give advice as how to do it .Like make her stay awake and she might sleep. Being only one that is caregiver 24hrs a day for half week and others on and off the rest it is very exhausting for me and I have health problems also and 62 yrs old . Her Demetria has worsened the last 3 months and I don’t know what to expect if she doesn’t get this back surgery because covid has thrown wrench into it because when does have because she is high risk and has to have breathing tube and would have to be put in ICU can’t do it yet. I hate seeing my Strong Loving and independent mom full of life go to being like a child in so much pain begging someone to help her and being afraid . Even tho she is so mean at times to me at other she is so sweet doesn’t want me go home. Any advise or suggestions cause at times I feel like I’m losing my mind not knowing what to do or say.
Deborah Bolger
saysMy heart goes out to you. I feel I know exactly what you are going through. My mom had Alzheimer’s and my 4 sisters and I cared for her for over 4 years, 24/7. There were a lot of disagreements between us and now probably a lot of regrets. My mom died in November of 2019. When my husband and I moved mom in with us in 2017, there was little help offered by my siblings and it was not unusual for me to be relieved only for 5 hours each week and that was to go to work. I got angry at times and even with my mom. Misdirected anger! Looking back now I know I did what I should have done, take care of my mom. She needed me and I was there for her. I have learned a lot about compassion through this experience and LOVE. I have been helping a friend care for her mom since December of 2019. Hang in there. I hope you know how rewarding it is to care enough to give so much of yourself.
Esmeralda
saysI’m new too all this and I’m learning threw reading and just hands on experience. My mother has dementia and for the last two years been hard on our family. , it either brings us closer or it parts us . It’s really hard and I’m dealing with a roller coaster of emotions and I can relate with the comment you said about misdirecting anger . I’m guilty of it I know I need to stop. Can someone tell me of any support groups out there I would really appreciate it thank you ....
Hi Esmeralda,
Thanks for getting in touch. We're really sorry to hear things are hard for your family.
We'd recommend calling our Dementia Connect support line on 0333 150 3456. Our dementia advisers can provide information and advice specific to your mother's situation. They can also provide you with support whenever you're dealing with that rollercoaster of emotions: https://www.alzheimers.org.uk/dementia-connect-support-line
You may also find it helps to talk with other people who have gone through or are going through similar experiences to share ideas and tips. Visit our online community, Talking Point, for peer support: https://forum.alzheimers.org.uk/ It's free, and open day or night.
In the meantime, you may find our Dementia directory helpful for local support: https://www.alzheimers.org.uk/find-support-near-you Our directory also lists online, telephone and some face-to-face services operated by third party providers. Please check directly with the provider to see if the service is running and if you have any questions about the safety measures they have in place.
We hope this is helpful.
Alzheimer's Society blog team
NELDA BARCHERS
saysI am in a similar situation and was able to see my mom in assisted living after she fell and hit her head by asking that she be put on hospice. The nurse there suggested methadone for her pain instead of morphine as it allows her to be awake and aware during the day. I ended up bring her home but as you say extremely exhausting even with some private care and the hospice care. She needs 24 hour care. Grateful to have her with me even though she argues and is difficult at times. Also incredibly sweet. My thoughts are with you.
Mark Haberle
saysGreetings! I understand your sadness, my mom at 85 is now 5 years dementia. It is absolutely heartbreaking when her mind takes her back 80 yrs and she is 4 or 5yrs old full of fear, helplessness and confusion. Hardest thing is to stand by exhausted hitting ability bankruptcy. In my 49 years I have never really been away from mom. And since she was really the one who raised me, next to an unwilling unaccepting alcoholic father, it is no wonder I have trust issues with other respite workers, as well as my own separation anxiety. I feel like my bond with her has taken me there walking through this evil hell cast disease. All I do is my best to accept, and try to find ways to be around her as much as I can to assist.
Kari
saysI'm sorry, we had my mil living with us for 10 mths after her husband passed. We finally had to put her in a nursing home which was a hard thing to do since I had promised her husband we wouldn't do it but it just got to hard. She's about an HR away and we go every week to see her. We also have an echo so does she so we're able to call her and see her. Oh and the 4 siblings who didn't want her or have even seen her in almost a yr and a half use to try to tell my husband what should and shouldn't be done was finally put in their place by my husband, who just had enough of they lack or concern. Please consider a nursing home. It will be a huge relief, yes you will feel guilty but she is only going to get worse and need more care.
Al Valle
saysYes.
I have a warm suggestion for you. It'll help like nothing else ever will. Because when we're desperate and worn out to the point where we feel emotionally exhausted, physically drained, burdened and angry (and guilty for feeling burdened and angry), we definitely have reached a point where we need help to cope.
My name is Al, and I live Stateside. I'm 54 years old. I, too, have been diagnosed with dementia. My diagnosis is Lewy Body Dementia. My wife if 30+ years is now my caregiver, and she sleeps in a separate bed at the other side of our bedroom. That's because of one of my symptoms --- Rapid Eye Movement Behavior Sleep Disorder, makes it disruptive, even dangerous, for her to sleep next to me.
Your personal health and well-being are just as important as that of your dear mother. So it's my hope that this comforts you.
In the Bible, there is a promise made by our Father. It's found at Isaiah 41:10 ---
"For I, Jehovah your God, am grasping your right hand,
The One saying to you, ‘Do not be afraid. I will help you. I will really hold on to you with my right hand of righteousness.'"
Do you know why that helps my wife and me? Because it is in direct contradiction with what priests and ministers will tell you. They'll say:
"God is testing your faith."
"The Lord works in mysterious ways."
"God needs another angel, so he's calling your (family member) to be with him."
"God is punishing you because of something you did."
They. Are. All. WRONG.
This verse helps us visualize God as stooping down in front of us, face to face, extending His very warm, gentle hand to you. And He promises He's not letting go.
All of the badness in the world? He isn't causing it. But He has promised to end it. Psalm 37:10, 11 ---
"Just a little while longer, and the wicked will be no more; You will look at where they were, And they will not be there. 11) But the meek will possess the earth, And they will find their exquisite delight in the abundance of peace."
Also, at Isaiah 33:24 ---
"And no resident will say: 'I am sick.'"
That's a magnificent hope, isn't it? And when we have hope, we can cope.
You're not alone. Your Father sees you. He wants to help you, without letting go. He will get rid of wickedness on this planet. And He will permanently cure every illness known to man.
Your friend in enduring, Al
Valerie Chastain
saysDear Al, bless you for your uplifting message!
Al
saysYou're very welcome.
I'm actually very happy someone read this posting and drew comfort from it!
Truth has a soothing affect on humankind. It helps us regain our rationale. It answers the "Why?" questions so we can have peace.
Meekness is a very strong quality, because it requires self-control. It is a humble quality that shows a readiness to be taught, as well as a willingness to be readjusted.
That is why God promises at Psalm 37:11 to allow those type of persons to "inherit" an earth where sickness, selfishness, hatred, inequality, retaliation, and even DEATH become "former things".
Revelation 21: 4 "And he [God] will wipe out every tear from their eyes, and death will be no more, neither will mourning nor outcry nor pain be anymore. The former things have passed away.”
---Al
Pat McDowell
saysDear Al
you must be a faithful servant of Jehovah. So sorry you and your wife are experiencing this disease. My 87 year old mom has it as well. Like you looking forward to fulfillment of all of Jehovah's promises soon to be done😀
Suzanne
saysWe lost our beloved dad to pancreatic cancer in October 2017. After dad died mum had a a break down due to the grief as he was her only boyfriend & she had been with him since 15 & for 60 years. We noticed mum started behaving in very strange ways but we put it down to the grief but she was getting worse & worse & not better over time. After managing to persuade her to go to the GP & after many in depth tests including a CT scan she was diagnosed with Altzheimers & vascular dementia last December 19. As a family we were totally devastated by the news but both my brother, myself & my husband took on juggling caring for her. Sadly she has deteriorated so much & just had a UTI, she has taken antibiotics but it has really knocked her. health. She has absolutely no self confidence & wont even try to do anything herself, even simple tasks & so we have to do it all for her. She struggles to walk & shuffles her feet. She can’t remember words so finds it very hard to put a sentence together. She can’t read, write, watch TV, she doesn’t want to do anything anymore & it is a real nightmare getting her to have a bath or shower. Washing her clothes is a bit of challenge as she hovers over the machine so I can’t put the clothes in it & so I have to watch her do it but she gets very cross & stubborn. She hallucinates all the time & says there are people all over the house living there & she talks to them. She vividly dreams all the time & tells us & she is adamant the dreams are real. Her appetite is really shrinking & she has lost about 5 stone since my dad died. She is sleeping pretty much all the time now, can’t keep awake at all in the day so goes to bed after her breakfast. She begged us after her diagnosis that we would never put her in a home which we agreed to of course but we know what the end will be like & we all work so will have to look into some home care as we can’t be with her 24/7 as we all work & have kids. Unfortunately with Covid 19 we have been left to sort her out all on our home even though I have made numerous phone calls to ask for someone to phone me back but never had a return call so we feel very isolated with what the progression of her decline will truly be as mum seems to have declined very fast this last year.
Any advice for mums stage & her care coward would be really appreciated
Thank you so much
Suzanne
Hi Suzanne,
Thanks for your comment. It sounds like you are all going through such a difficult time at the moment.
We would strongly recommend calling our Dementia Connect support line on 0333 150 3456. You'll be able to speak to a trained dementia adviser who can learn more about your situation and the challenges you've been facing. They can give you information, advice and support.
There are more details of the Dementia Connect support line, including opening hours, here:
https://www.alzheimers.org.uk/dementia-connect-support-line
Wishing you all the best, Suzanne.
Alzheimer's Society blog team
ann
saysi found using theses web sites very helpful
to release the stress that we going through
as some times the doctors cannot answer your questions full
it also helps to read about how other families coped with the same problems
Louise
saysI cant believe how much this sounds like my mum.
My dad died 5 years ago from the same cancer and my mum is lost without him. They have been together since they were 15 and married for 49 years.
My mum has now got Alzheimer's and the things you wrote is just what we are going through.
I hope you are coping as its so difficult.
My heart goes out to you..
Louise
Anne Carroll
saysI'm not sure if I'm.right but it sounds like the amount of grief suffered by elderly parents following the death of their life long spouses, somehow precipitated the inset of dementia/Alzheimer's. I noticed little changes in my. Dad's behaviour prior to.my Mum's passing 2 years ago but he has worsened in.the interim up till now. His memory has worsened. He is now living with my hubby and me as he can't luve safely by himself any longer. He's 85.
Zoe
saysFeel for you. My mother 85 has moved in with us (AustraliaMelbourne), having had a large bowl bleed, taken by Ambulance to hospital, then from aged care evaluation and then discharged to my home as deemed not able to-live alone by medical assessment team was traumatising indeed. Has vascular dementia as well as as this compounded by death of her son first, then husband within a short period of time then moving and leaving her home being disorientated is ongoing, so many losess, is sleeping more needing to rest she says. I was not aware that sleeping more is part of her condition as I was not very tolerant of her extra sleeping. Carers shower her daily also keeping her company as I work. It’s hard work as I see her changes and know her lossess and sadness.
Lisa H
saysWe are just having my mother assessed as she has recently suffered falls and advanced significantly beyond a few memory problems. We have worked out that she had problems before my father died but that he actively covered for her. I wonder if couples who have been together so long adapt to accommodate their partner's difficulties and it only comes to light after one of them dies.
Susan Lansley
saysWe are having much the same with mum. She was beginning to have memory difficulties two years ago but following two heart attacks and progressive heart failure mum developed vascular dementia. She seems to be in a cycle she will be quite communicative and social, showering and getting up and dressed and then it’s like a jeckle and Hyde. She sleeps continually for about three days, shouting at the carer to leave her alone, that she doesn’t need help. It’s a struggle at this point to get her to take her medication, eat and drink. Then she will change again and have no recollection of the previous days.
We could t look after mum, we live too far away and do not have the space for mum or not the right facilities. The decision was made to try and keep mum in her own surroundings. Carers three times a day did not work, as it never coincided with when she was cooperative.. we have a live in carer which works better but has not had the positive effect that we had hoped for. She still puts herself to bed for days on end and won’t communicate. Reading the other posts on here it helps to know that this is not unusual. We can only in the end do what we can to keep them safe. Care unfortunately costs a lot of money. Resources are not infinite
Nanette
saysI just found this blog and I am grateful for it. I am a member of an Alzheimer's group in the US that meets once a month, but sometimes we all need to share our journey with others more often. This is something that we may all face at some time. It is worldwide and sometimes we need help every day. I feel for each and every one of you and your loved ones.
Mom, a dedicated R.N. for many years, is 92 and diagnosed with vascular dementia for the last two years although her symptoms began years earlier. She lived alone (so she hid it well), then I cared for her for a while, and soon it was in full swing when an MD finally put a "label" on it. She survived Covid in April '20. She now has 24-hr care but is declining very rapidly and barely able to stand on her own, yet bolting out of bed at night during dreams etc. She broke an arm while struggling with her nurse to get out of bed. I am not sure what to do in regard to her care as some of her nurses are having trouble with keeping her safe. She can be so weak one minute and have the strength of a bull the next. She can at times articulate that she feels weak and tired, but seems to just continue going through the motions of life (with the help of her nurses) as though it is just a routine she has to follow. It is heartbreaking.
What kind of care is suitable for this "next level"?
Susan Blanchard
saysHello all, my 85 year old widowed mum has dementia, I have just read that sleeping a lot could be a sign of worsening. I am living in France but fortunately my brother has moved in to care for mum. I understand how difficult it must be to be a full time carer, he has his own problems to deal with too. My sisters and I are trying to be supportive, with suggestions and ideas of activities, but he tells us that we have unrealistic expectations. We thought that a proper routine was key, but it seems that it is difficult now to get mum up and dressed before lunch! My sister is adamant that the radio should be on all day 'for company' (my brother is often listening to podcasts with his ear pods whilst mum is in front of the TV falling asleep again...). We think that our brother needs support, for his own mental well being, but he is not open to any professional help. With Covid 19, he is effectively all on his own with mum. Does anybody have advice?
Judith Dominguez
saysHe needs help, we too are struggling. My mother is 92 and was diagnosed with dementia the beginning of this year, but her GP thinks she too hid it well. Now she has hallucinations slurred so each and can’t do many things on her own anymore! It’s heart breaking to see our mother a strong vibrant woman to go to a helpless woman. She barely has allowed me, my two sisters and my older daughter to clean her up after using the bathroom. It’s been a very big pill to swallow! My mom also suffers from CHF, emphysema and RA. She now talks about her death, what she expects from us 4 and that she knows she will die soon because she sees my dad whom died over 20 years ago! This yanks at my heart! She was released from the hospital a few days ago due to a fall and fluid buildup. Now she will be visited by RN’s , physical therapist and a social worker. We definitely need the help, I realized I can no longer lift her due to my CHF and my two older sisters, well they can’t do it either! Only my daughter who is in her early 40’s can do it but sometimes it’s too much! So yes get the help but keep her at home, let them come to you since you have control of hygiene, and sterilization better! May God soon get rid of all this suffering, I know he keeps His promises Isaiah 55:11 and Revelation 21:3,4... these I hold dear to my heart! Bless all of you who are caring for your parents, just like they cared for all their kids!!!
Nancy
saysPrayers for strength to all of you. We have cared for many years for our 98 year old mother. She fell two months ago and broke her leg. Was hospitalized for 12 days and with Covid no one can visit. Information was minimal. She went to rehabilitation home for 4 weeks. They did not take good care of her. She is home with us now, but don’t know for how long. Whatever you do don’t move your loved one to a home. Do your best to keep them home where they are safe, respected and loved..
Tracy
saysHello - My mother has been suffering from vascular dementia for 20+ years. She hid her condition for the first 10 years until it was obvious things were wrong. Please listen to what your brother says. Those with dementia cannot be placed on a schedule (I have read many articles about this but believe the authors never had to care for a dementia patient!) because they have no concept of time - day, month, year. Having a routine may help some but my mom has fought any semblance of a routine from day 1. She will do exactly what she wants to do. Sleep all day and awake all night. Her neurologist said not to bother with a routine because it's not going to happen. One thing that is difficult to understand and accept is that our parent doesn't have the ability to reason any longer so trying to be logical with our parent doesnt work and only causes conflict. I am lucky if my mom agrees to shower every 3 days. If it is within your and your sisters' finances, the best thing you can offer your brother is to give him a break from caregiving throughout the year. Perhaps each sibling can care for your mum for one week every 3 to 4 months? I promise you this one week of caregiving will give you insight to what your mother and brother are experiencing. Those who have never cared fulltime for a loved one suffering from dementia have absolutely no idea what caregivers must face every day. You can read about it but reading about it doesnt even come close to the mental anguish your loved one can put you through every day. Also, even if your brother does see a mental health professional it doesnt change the daunting reality of caring for a parent who doesnt act like the parent who raised you. This is the most heartbreaking part of this difficult journey - for your mum and your brother. Prayers for your mum and brother.
ann
saysi am going through the same my brother cannot face it he is in deniel but it makes it harder for me and it makes me feel angrey with him
Nicki
saysI, too,, am thr caregiver for my mom and I can totally relate to how you csregiver brother is feeling. I have pretty much, by trial & error, learned to care for my mom. It is no cake walk & I absolutely resent suggestions from my siblings who have dodged requests to help or relieve me. Yet they somehow think their suggestions constitute as support. Caregiving is exhausting, so suggesting that I adjust my routine or other activities is insulting and annoying, especially when I'm struggling just to maintain the basics. If they can't/won't help, then it's actually more if they'd keep their suggestions to themselves. Call it ungrateful, unappreciative, but until they can contribute in person, their input is nothing less than annoying. IJS
Natalie Mustoe
saysI completely agree with you Nicki unless there willing to be there helping you and giving you a break you don't need there input that doesn't help ,I'm lucky i have support,as my sister and I take in turns every other day with our mum going into her 6th year of vascular dementia and its mentally draining exhausted most days both of us so to be the only caregiver I can imagine just how hard it is xx
Mrs Kaye Roberts
saysHi, my father died on 12th Sept 2020 of vascular dementia. He was 90yrs old. We managed to keep him in his own home till the end. We paid for carers and also did approx 7hrs daily. I promised my parents that I wouldnt put them in a home. One of his GP's said to me when leaving after a visit, "why hes living so long is that your looking after him so well". My husband and I did our best. The latter end of his life he just wanted to stay in bed and sleep. I sat him on the bed and bathed him and changed his pj's sometimes he would let me shower him. He had an electric bed downstairs and was lucky to have wet room downstairs which was an absolute gid send. I don't know how I'd have coped without that. All I can say is that I miss my dad but he isn't suffering anymore. I think of all carers out there who are still looking after their love ones, it's a horrible condition and very sad. My admiration to you all.
Isabelle McKinnon
saysMy son is 54 and has vascular dementia. Diagnosed in 2016. I took him in to live with me a year ago. He is sleeping most of the time since two weeks. Hs is normal one minute and the next minute he is confused. He just gets up to take meds and eat, then right back to bed. He lost his interest in games, puzzles and even television. He also has a heartboroblem, the heart is not pumping like it should be. He had a scan on the brain and we were told the dementia is progressing. He is also a type 2 diabetic. We were told the dementia was caused by uncontrolled diabetes. He ate loads of sweets and sugary drinks until just lately. I worry that he is in the late stages but I am not sure. Does anyone have any advice about this.
mary brooks
saysmy dad has vascular dementia. he is 90 yrs old he sleeps most of the day and night. also my mum is quite unwell she has had a few falls and chest infection called the doctor he said its end of life for her. so we have both parents so unwell we r doing all we can for them to keep them together at to stay in there own home. it is very hard for us.
Hi Mary,
We're very sorry to hear this - it sounds really difficult for you.
Please know that you can talk to our dementia advisers if you need support. You can call our Dementia Connect support line on 0333 150 3456 for information and advice.
More information about the support line (including opening hours) are available here: https://www.alzheimers.org.uk/dementia-connect-support-line
Best wishes,
Alzheimer's Society website team
Lisa
saysLord, Father, thank you for all these people who care for their loved ones. It is a kindness that doesn’t go unnoticed by You. Please give them the strength physically and mentally that they need each day and wisdom how to dare specifically for their loved one. Bring them closer to you and bless their last days knowing how much You love them. Give them all peace and comfort that only You can give. In Jesus’ name Amen.
June Scott
saysMy mum has vascular dementia, 85, and she is sleeping more, especially in the mornings and afternoons, and some times doesn't feel like going out, so I have to stay in, as I can't leave her in the house, by herself
LILIAN
saysLilian, we're really sorry to hear this. This must have been incredibly hard. Please know that support is available and our Dementia Advisers are here for you.
You can call our Dementia Connect support line on 0333 150 3456. Find more information about the support line, including opening times and other methods of contact, here: https://www.alzheimers.org.uk/dementia-connect-support-line
You might like to talk with other people affected by dementia within our online community, Talking Point. You can browse and read others' experiences or create an account to join the conversation: https://forum.alzheimers.org.uk/ It's free to use and open day or night.
We hope this is helpful for now, Lilian. And please do call the support line if you need us.
Alzheimer's Society blog team
David Coleman
saysRose
saysHello. My grandpa is 86 years old going on 87. Just recently he came back from my aunt's house (his daughter's) for two weeks. For a week he seemed very out of it and won't stop sleeping. I am trying really hard to get him active. I feel guilty when he sleeps a lot because I do not know if that is normal. If there is anyone that can give advice please let me know. Is it worth waking him up or should I let him keep sleeping. I do not know anything about dementia and I do not know if things are just a slip up or small signs of progression.
Mrs Amanda smith
saysHi ,my dad was diagnosed with vascular dementia,in sept 2017,he's 76,his speech is v mumbled at times v difficult to under stand,he is v wobbly on his feet ,therefore he doesn't go out any more ,he sleeps allot now,just recently he is shouting out in his sleep throwing himself around in the bed and sweeting vv heavily,and now as well as sleeping most of the day he goes up to bed at 7.30 in the evening,then getting up at 10,thinking its the next day getting dressed and going down stairs,making tea spilling it all over himself ,then my mum has to try at get him back to bed,its happening most days now,its heart breaking ,my mum is struggling ,can't even go and give them a hug,feeling broken
Caz
saysMy mum is 87 had a stroke 18 months ago , she moved in with me & I care for her, we were going out for walks & had quality times but now she’s sleeping all day & night only wakes for food & drink with encouragement. She needs reassurance I’m her daughter & I’m staying & talks of the past .
She has vivid dreams & talking loudly in her sleep, gets up distressed looking for me. I’ve never wanted a confirmed diagnosis of dementia or whatever but she’s obviously declining & wonder what the future holds? It’s upsetting to witness & feel helpless just waiting for her to wake. Thought I’d share my experience as feeling isolated.
It’s good to read everyone else’s experiences & feel we’re all in the same boat one way or another , thanks everyone for sharing has been helpful . X
Debbie
saysMy mother is 85 and has lived with my family since she was 62, and although sh has not be diagnosed as having a stroke, she is doing the same thing! She’s tired and she doesn’t want to shower. She doesn’t want to move without help or direction. And now she wants to spit every morning and putting tissue in the trash as opposed to in the toilet. Very stressful.
Caz
saysHi Debbie, thank you for your response & I feel your frustration what you’re going through on a daily basis & like you it’s the tissue issues that drive you silly , I’m picking up tissues all day but try hide my irritation & usually try to be cheerful & sympathetic. Motivation is a daily chore & has to be the right time to shower or wash down because of tiredness.
I’m so pleased to receive your message as caring is a lonely place & at the end of the day a conversation with your nearest & dearest at the end of the day revolves around the health of mum & all goings on which can make even me glaze over!!
I’m always thinking I’m doing my best & I’ll have no regrets ever .
I’m sending you all best wishes & thanks again . Caz x
Sandra Remmy
saysI feel your pain. My mother is 90. She has dementia as well. She had covid and when she came home I stayed with her the 10 days of quarantine. Since then her dementia has worsened. She use to make coffee in the morning. She loves coffee. She hasn't made it or even thought about it. She doesn't attempt to find anything to eat. Its like she doesn't realize she's hungry. My mother was a cleaner. She cleaned our house all the time. She used bowling alley wax on our floors. Now she does nothing. She just sits there. She may ask you a question but but not remember your answer. Its very sad. Its hard on me trying to take care of her and being at her house all the time. I also have a home and husband. So trying to care for her and her home and mine makes me exhaust
Caz
saysHi Sandra, thank you for responding & I also feel your pain too, it’s such an awful position to be in ,as you feel torn between your mum , her safety & wellbeing , your own life with your husband & home , you just don’t know a way forward, I actually sat in a room within the hospital with the occupational therapist watching mum being tested for her abilities to make a cup of tea which was awful as mum had no idea how to coordinate herself so it was then I said she’s coming home to ours as I wanted to take care of her , she has no memory of where she came from or her past . ( only if her younger days ) we had a nice summer as I’d get her in the garden where she enjoyed the trees & blue sky’s & sunshine but times have changed & now likes the security of her bedroom & loves her bed & sleeps all day & night with my interruptions for food, drink & meds. Life is difficult to deal with mums questions on repeat & curiosity of who I am ? Am I her mum? Or friend? Where’s dad & has he gone to work ? ( passed away 2013) is he wrapped up warm as he’d gone to work ! I now know how to react to her questions but I admit it’s very wearing ! Yesterday I showered mum & did her hair lovely , changed her bedding as she’d had a nightmare that spiders were all over her face , I give her the pillows & she put on the cases so makes her feel like she’s helping me . This is what I chose to do as caring is in my bones & heart. Professionals & my sister said to get mum into care but mum didn’t want that & I wouldn’t be happy either so this is my lot & thankful I can write on this wonderful site sharing my highs & lows , sharing it with others like yourself , I’m grateful if it helps others who can identify with my situation, I’m in limbo & search on here for anyone’s life story that resembles mine & issues that now affects mum . Thinking of you & hope you can manage to sort something out that makes life easier for yourself & family & it all depends on your strength, finances & what’s in your heart. Sending all my best wishes x Caz x
Phoebe hansen
saysMy mom is now 92 . We have gone thru the early on set , stage 2, stage 3 and now the very end stage of dimentia since 2015. In 5 years she declined so rapidly compared to other people . She is now bed bound because she forgot how to walk a year ago . She went thru the angry stage emotionally . Now because of Covid we are not able to visit her except my sister . She is sleeping more and more during the day , the time my sister is allowed to be in the home for visit .
We are constantly reminding ourselves that we all have to face that day , when she decides to leave us . It’s still hard !
My heart goes out to everybody who are in the same boat!
Caz
saysHi Phoebe, thank you for sharing what you & yours are facing, it’s so interesting to hear all the different situations we endure on a daily basis & it’s awful to think about the direction our loved ones are nearing, having to mentally preparing ourselves , every morning I take a deep breath before entering mums bedroom & relieved when she responds to me . Phoebe I’m thinking of you & sending all my love & best wishes . Caz x
Pauline
saysI know exactly what you are going through. My mum is 93 and in march when lockdown started I looked after mum at mine. I noticed things were not right so I rang her dr who said we will put her down for memory tests. Mum wanted to go home so reluctantly I let her. Arranging meals on wheels and visiting her regularly. In the heatwave she let herself get dehydrated and ended up in hospital with water infection and irregular heartbeat and while in there diagnosed with Alzheimer’s. hospital asked if I would look after her for two weeks and then go home with a care package. Mum came out of hospital a different woman with medication changed given one tablet particularly digoxin I think doesn’t agree with her but medics say no. I never heard about a package and arranged it myself for carers to come in twice a day to wash her and arrange her tea. The water infection came back and antibiotics were prescribed and then I had to have carers 4 times a day. Mum was very tearful saying whatever she does is wrong. When with me at mine for Sunday’s she ate all her food taking her home in the evening she always changed. Not eating and taking to her bed getting up only when carers came. Week before last Christmas she decided she couldn’t walk and nobody could manage her. I called the dr who sent her to hospital. They kept her in then she had to be isolated in there because a person who she was with in hospital had COVID thankfully mum never caught it. They kept her in there 5 weeks waiting for a care package I rang everyday asking as well as talking to mum. Monday of this week I had a phone call from a care home to say my mum had arrived safe fully, I didn’t know she had left nobody told me where she was going or choice of home . Nothing at all . I was hurt and shocked I feel so guilty I’ve let mum down as I’m an only one and I couldn’t cope with her and promised her I would get her to the home in our village which I kept asking the hospital for and never had a say. I can’t see her at the moment but she is having the vaccine tomorrow so hopefully if it’s not too late I will get to see her. She’s on soft food as she won’t eat. What a nightmare I wouldn’t wish this on anyone. It’s good to read comments knowing I’m not the only one going through this. What a cruel disease.
Stylishgirl
saysThis is a reply to Caz
I wrote my mums story a few weeks ago & I really do appreciate everyone that has replied to my post which is so appreciated
I completely understand Caz why you are reluctant to get a named diagnosis but after our family, worrying for years what was wrong with mum, it was a complete shock to be told as mum has both Altzheimers & vascular dementia so it was a double blow. Because of Covid we have been left to care for her ourselves but mum takes drugs now since her diagnosis last December 19 for her condition which of course doesn’t stop it or is a cure for either but it does, I feel help to ease the symptoms. It’s very hard caring without help & in the new year as mum has deteriorated so much we are going to have to employ some carers as my brother, myself & hubby all work & have kids so it’s sadly impossible for us to be there 24/7 which I know very soon she will need
Please take care of yourselves as you can’t help the person you live if you are completely mentally & physically burn out
Suzanne