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Advice
‘I want to go home’ - What to say to someone with dementia in care
Here are some ways family members and primary carers can approach the difficult question, 'What do I say to someone with dementia in residential care who wants to go home?'
It's not uncommon for a person with dementia to say they want to go home. This may be caused by time-shifting or general confusion, and can be distressing for everyone.
Below are a few considerations on what to say to someone in this situation who wants to go home.
5 things to remember when someone with dementia is asking to go home
1. Avoid arguing about whether they are already ‘home'
For a person with dementia, the term 'home' may describe something more than the place they currently live. Often when a person with dementia asks to go home it refers to the sense of ’home’ rather than home itself.
‘Home’ may represent memories of a time or place that was comfortable and secure and where they felt relaxed and happier. It could also be an indefinable place that may not physically exist.
It’s usually best not to try to reason or disagree with the person about where their home is.
If they don't recognise their environment as 'home' at that moment, then for that moment, it isn't home.
Try to understand and acknowledge the feelings behind the wish to go home. Find out where 'home' is for them - it might not be the last place they lived. It could be where they lived before moving recently or it could be somewhere from their distant past.
Often people with dementia describe 'home' as a pleasant, peaceful or idyllic place where they were happy. They could be encouraged to talk about why they were happy there. This can give an idea as to what they might need to feel better.
2. Reassure them of their safety
The desire to go home is probably the same desire anyone would have if we found ourselves in an unfamiliar place.
Reassure the person verbally, and possibly with arm touches or handholding if this feels appropriate. Let the person know that they are safe.
It may help to provide reassurance that the person is still cared about. They may be living somewhere different from where they lived before, and need to know they’re cared for.
3. Try diverting the conversation
Keep a photograph album handy. This could be a physical book or photos on a tablet or smartphone. Sometimes looking at pictures from the past and being given the chance to reminisce will ease the person’s feelings of anxiety.
It might be best to avoid asking questions about the pictures or the past, instead trying to make comments: 'That looks like Uncle Fred. Granny told me about the time he....'
Alternatively, you could try shifting the person's focus from home to something else - such as food, music, or other activities, such as going for a walk.
4. Establish whether or not they are feeling unhappy or lonely
A person with dementia may want to 'go home' because of feelings of anxiety, insecurity, depression or fear.
Think about whether the person with dementia is happy or unhappy when they mention going home. If they are unhappy, it may be possible to discover why. If they cannot tell you why, perhaps a member of the staff or another resident knows why.
Like anyone, someone with dementia may act out of character to the people closest to them as a result of a bad mood or bad day.
Does the person with dementia keep talking about going home when people are not visiting them in the care home? Does he or she seem to have settled otherwise? Ask the staff in the home as they may know.
5. Keep a log of when they are asking to go home
Certain times of the day might be worse than others. What seems to be the common denominator about these times? Is it near meal times (and would a snack perhaps help)? Is it during times when the environment is noisier than usual? Is it later in the day and possibly due to ‘sundowning’?
If you see a pattern, you can take steps to lessen or avoid some of the triggers.
This article was first published in 2018 and most recently updated in January 2024.
How can dementia change a person's perception?
People with dementia experience changes in how they perceive things. This includes misperceptions and misidentifications, hallucinations, delusions and time-shifting
Zeya
saysMy grandmother has trouble doing daily activities,she usually doesn't recognize people and tends to say she wants to go home.It has been hard for my mom and if any one could give advice on what to do, that would be very helpful.
A
saysSomething I would like to say to all of you who have Dementia/Alzheimer's Disease that runs in the family as I do. Do everything you can to avoid getting this terrible disease in yourself. I know many doctors and non-doctors think it is unpreventable. But I have been doing a lot of research (googling and videos) and read a lot of how to potentially avoid this disease and others. Dr. Daniel Amen is one of my favorite resources. It's all about what we put into our bodies. It's a super healthy way of life. And if I am wrong, It's still a win, win because I will be healthier for it. Processed Refined Cane Sugar is a big problem. Also, for some great help on dealing with those that have the disease, I recommend Teepa Snow! She is a leading expert and I trust her.
Annamaria
saysMy mother has advanced dementia but still recognises us.
We have always been an extremely close-knit family. Despite the fact that she makes repetitive sounds a lot of the time, she sometimes says words very clearly such as "home" or "don't want to be here". It's heartbreaking to think she might feel we've abandoned her especially during lockdown when visiting is very limited if at all. Previously she had a minimum of 3 visits every day. My question is "should we consider taking her home and try to look after her ourselves". We all have jobs so it would be on a rota basis. She is wheelchair bound and needs help to do everything. My dad is his 80s. All I want is the best for her and for her to feel loved.
M Woods
saysMy heart breaks for you. We have a similar situation with my mother. Both her and our step father moved from their own home to an independent living facility in October, 2020. Then they went into assisted living in December, quarantined for 2 weeks, then my stepfather had to get a blood transfusion, so 2 more weeks in quarantine, and then he passed away earlier this month. Now Mom is alone, her memory is failing, and none of us can visit except for 20 minutes once a week, with only 2 people. She's obviously scared and upset and wants to "go home." We've also talked about bringing her to one of our homes, but none of us are set up for that. The place she's staying is very nice, it's just that without company, I'm afraid she's going to go even deeper into the dementia world. Best of luck to you and your mom.
Annamaria
saysThank you for your reply. I'm so sorry to hear that your stepdad passed away recently and my heart goes out to your mom and you all. It's such a dreadfully sad episode in our loved ones' lives and a time when they most need their family around them. To be unable to provide the comfort they need, due to Covid-19, is so heartbreaking and the fear of them deteriorating further so worrying. My head tells me that my mam is getting the best care where she is but my heart is saying she needs to be with her family. Please God restrictions will be relaxed soon and we can all get to spend valuable time with our loved ones and wrap them in our love. I will never be able to repay the carers who look after my mam in her nursing home for being a surrogate family in our absence. I wish you all the best too.
Hello Annamaria,
Thank you for sharing this. Would you be interested in telling us more about how things have been for you and your family within a blog article of your own? We'd particularly like to know about your feelings around the long-awaited reunion with your mam. If this sounds like something you'd like to do, please email [email protected] and we'll help you to get something written up.
Thanks in advance,
Alzheimer's Society blog team
A
saysTrying to care for a loved one at home can be very problematic. My mother took care of my grandmother for 8 years with no help from her 4 siblings. It was a nightmare for her and flew off the handle many times. During this time she told my brother and I to promise to put her in a (nice) facility when the time came as to not burden us. My grandmother had make my mother promise to not but her in a facility (back then they were horrible) so my mother carried out her wishes but it nearly cause my mother a nervous breakdown. So a year after my father died, we realized that my mother could not live alone. I remembered her words and my promise to her and we placed her in a facility. Some years later I got a job as an Activity Coordinator in a different facility. I will tell you that facilities are also problematic. From the one I work at to the one my mother lives at. I hear similar stories about all of them. But for me, the bottom line is, I fulfilled my mothers wishes. I look after my residents like they are my parent the best I can. But I get to go home at the end of the day. For those that live with a failing loved one, it's torture for all involved.
Liezle Prinsloo
saysWow, I desperately needed to read all your stories! My mom has been living with me for over two years, but has regressed quite quickly in the last couple of months. I finally reached breaking point, developing a floating embolism in my aorta and nearly dying myself (I am only 46).
My mom is very young, 66, but I simply could not look after her anymore. I felt like her lifeline, we were joined at the hip. She could not cope with not being next to me - physically. I understood that this would be hard, but I thought they were talking about incontinence, not recognizing people, battling to eat, becoming aggressive etc. but the valcro-affect (not sure about spelling) was just unbearable.
She has now been at a Frail Care facility for a month. Initially she coped fairly well, but keeps asking to leave with me. It breaks my heart! My eyes still well up nearly every time I leave her there, but I do know it is for the best. And I really appreciate reading this blog - knowing how devastatingly lonely it can be to look after a loved one with dementia - it's nice to know I am not alone.
I pray for each and every one of you, and your loved ones. May God grant peace and joy to every person, regardless of where they lay their heads tonight.
Karen
saysWow im going through this too ..but she lives at home with me ... Shes 77 ... Im 48 ! Ive worked in a memory care center for 25 years ... This is sooo hard when its your own family .... Im all by myself my brother has schizophrenic too so i have 2 big whams at once ... I wish you the best of luck ! Much luv
A
saysAre you caring for your brother too? Sending hugs. We are all in this together. I find support groups very helpful. I too work in a Memory Care unit as an Activity Coordinator.
Heather
saysI can empathize with you as I have similar relationships. My mom is three years older than yours is with dementia (and I am three years older than you) and my brother has schizophrenia. He is her primary caretaker bc he lives at home and I have my own family. It is very stressful to make sure she gets the care she needs. He is very stable with his medications. I worry all the time about my own two children and heritable conditions such as schizophrenia and AD.
Lana Smiley
saysBoth my parents had severe cognitive decline - re: the constant requests to "Go home" I would tell them that after their long hard working years they deserved to have people wait on them and help them and that is why they were moved. That always sermed to placate them. Also one time I drove them back to their house and let them wander around. After a bit Dad asked what we were doing there and seemed pleased to go back to the facility! Also an ice cream cone can sometimes do wonders... And the occasional Ativan (mild tranquilizer) can be very helpful.
God bless all you fellow carers! (Hugs)
Nancy Hurford
saysThank you for your heart warming comment!! I have a 53 year old son in a care home, I brought him from another state to live with me after he had a stroke..Got to a point I could no longer care for him..I am raising 2 grandchildren and they are a handful..He is blind now and was put on a medication that I am reading is not good for dementia and he is so very distraught..I get to a helpless point, he is so dear to me and I am in such a depression and feel like I do not know where to turn..I am sure that many are feeling this way..Thanks for my being able to vent..
Lana Smiley
saysWent through dementia with both my parents - draining and exhausting. Its so hard to make them content. You do what you reasonably can and forgive yourself for what you can't. One tip: its not what you SAY that they remember, but they will remember how you made them feel. And when they finally pass on, don't feel guilty about the relief you will experience (along with being sad that they are gone) God bless you!
Liam
saysI'm an ordinary employee, one of the most ordinary nursing homes
I am not a medical professional, but I observe a picture of one of the old people constantly making sounds of an airplane and spinning in one place, I am very sorry for the poor man ... and I am worried about his mental state, although I am not a doctor
A
saysSomeone needs to try and engage him. Probably the Activity Dept. who should reach out to the family to find out more about him. His likes and dislikes etc. Someone needs to find out how to "get inside" his head.
Wendy Aoun
saysHi my brother has been sent from hospital in early to a care home with no official diagnosis yet of dementia but an mra scan shows a lesion.
Since being admitted to hospital and the home he's started just wandering around into other residents rooms.
Is this a dementia problem?
Hello Wendy, thanks for getting in touch.
For a person with dementia, walking about can be a common occurrence. We have a PDF factsheet available to download (https://www.alzheimers.org.uk/sites/default/files/2019-05/501lp-walking…) or you can visit our webpages on this topic: https://www.alzheimers.org.uk/about-dementia/symptoms-and-diagnosis/wal…
We'd also recommend calling our Dementia Connect support line on 0333 150 3456 if you are seeking dementia information and advice. Our advisers are here for you: https://www.alzheimers.org.uk/dementia-connect-support-line
You may also benefit from talking with other people who have gone through or are going through similar experiences within our online community, Talking Point: https://forum.alzheimers.org.uk/ It's free to use, and open day or night.
We hope this is helpful.
Alzheimer's Society blog team
Kay Raines
saysMy husband is home with me. He has it in his head that he is not home and wants to go home. This is a house that we have lived in for 33 years. What am I supposed to tell him. he looks out the door and sees our neighbors houses and will know that he is home. When he goes back into the room he says that he wants to go home. This is not his home.
Cheryl Pierce
saysMy dad is doing the same thing. He’s lived in his house for 48 years. We will walk outside and look back at the house and he recognizes it as his. As soon as we’re back inside, he wants to go to his “other house”. We have the conversation numerous times per day. I wish I knew what to do. I explain to him that he’s lived here for 48 years and he says I’m lying.
Dee
saysDear Cheryl,
My mom has Lewy body dementia, I’ve never seen a more aggressive form of dementia in my life. In only a few months, my mom calls me the girl upstairs, but only me! She knows everyone else. Funny thing though, on the phone she knows me, it’s just when she sees my in front of her, she gets extremely confused. (With the other girls or a cousin)
My mother says the exact same thing, “I want to go to my other house”. I asked her to look outside and all the same neighbors. I asked,”did we take all our neighbors to this new house”? She laughs. She says that “I fixed this house the same as me as the other”!
The worse is when mom starts packing. I go downstairs and shopping bags are full of paper, remote controls, phones, everything she needs... I finally find in her to go bags.
We never thought of ever sending mom into an adult care facility, we cared for my grandmother for a long while, till her passing. But this Lewy body dementia surpasses grandmas dementia, by far. Having a husband waiting to be placed on transplant list, being disabled myself, I just can’t do this by myself any longer. It’s all killing me at a fast pace.
I truly don’t think mom being by herself, I see and talk to her several times, all day long..... but, actually being alone all day, when not with me, is it fair to mom? She could be in a mice place , right near home, so I can visit every day. (As long as COVID restrictions are lifted). I can take her out for breakfast, lunch, or dinner. She’ll socialize and make friends, crafts, outings and shopping. She’ll be happier and healthier. Being here is holding her back from living the rest of her life with those who understand, more than I.
I cried many times about this decision, but then thought about the whole picture. I think about how much fun the residents have, making things with each other, even entertainment! Everything mom loves.
So, I got the application and I’m almost finished. I have just a couple more questions to answer.
I’m 53. Five shoulder surgeries from carrying grandma in my arms, I never regret and would do it all again. But, I truly feel happy with this decision and mom seems ok with it. Even got her the only first floor room, afraid of elevators. They accommodate for her diabetes, special diets.
There comes a time in our lives where we truly have to trust our Heavenly Father and leave our most precious in His hands.
With love and gentle thoughts ......
A
saysI work at an assisted living facility and during in-services we are taught to say things like: Your house is under construction (be creative as to why, maybe a pipe burst or something), Another one is... We are expecting a storm, I have a room for you to stay in tonight and you can go back home as soon is it's safe. This is called THERAPEUTIC LYING, and it works much of the time. I am a person who is not comfortable with lying but I found this THERAPY helpful. They are not in your reality, they are in theirs and there is nothing you can do to change it. So you may a well settle them down any way you can.
Diane Mulraney
saysThanx so much for this advice and information about Therapeutic Lying👍 This is so helpful to me when responding to mum who has gone into a care home as she is moving into the advanced dementia stage. I have been her full time carer for the past 4 years and I was finding it difficult to find ways to tell her that this was now her new home and that she couldnt come away with me at the end of the visit. I was struggling with my Buddhists ethics of truthful communication with being kind and compassionate to mum at the same time. This has opened up a whole new area of dementia care for me to explore and allows me to find new and creative ways of responding to mum during this next stage of her journey. It also helps me to process my feelings of guilt around this issue, reduces my anxiety, thus allowing me to tap into what I call MumsWorld. Lots of love to all you wonderful caregivers out there. Diane🙏🌈🌹
Julie Jones
saysI have the same problem with my husband. Everyday all I hear is ,are u ready to go, I'm goin home, everyday,all day. Its hard to get him to agree to come back in our house after we have been somewhere. So stressed out,
Jan
saysGoing home they say is not a house or the last one they had. It could maybe be a childhood one or their last one they lived in. Also it’s not current time but all the memories of the past that they want/remember. days when they were younger, healthier. Like asking where her mom is and she’s been gone 30 yrs. House torn down yes ago, siblings deceased. Have to try not to figure it out just go along. YOU CAN NOT EXPLAIN, impossible! Love them where they are and treasure the old memories. Happened to my MOM, Aunt, another aunt and my now with husband PD with some dementia. Im doing good but diagnosed with MCI. Just take a day at a time, don’t take things personally and pray for wisdom and peace. Focus and remember the good times. God bless you
jan
saysHome is whatever they remember from the past. Childhood, 1st home. maybe not a home but familiar things they loved from the past. A lot of patients pack up to go home everyday. maybe not their last home but one they loved and a great time of life for them.
Christine
saysI’ve been reading all the stories from so many people and I recognise the same issues. My husband was diagnosed with Alzheimer’s in 2017 but he was having memory losses for a long time prior to the diagnosis. He is 73. He has gradually forgotten who our friends are and more recently he has forgotten who our daughter, son in law and grandchildren are. He doesn’t really know who I am and often asks if I’m married, or where I live. This is hard and upsetting for our family. I understand the illness and have found patience I didn’t know I possessed. He gets obsessed with going into town for something each morning but he doesn’t know what he’s going for and doesn’t understand lockdown. Every morning I divert and distract. It’s like Groundhog Day. The most upsetting thing for me is that he’s recently started one day a week at a memory loss centre where there are several very frail people who are more advanced in their illness. My husband still looks fit and ‘young’ and I have had to be very strong when he resists going in but comes out later in a really happy frame of mind. When the familiar and satisfying shared married relationship changes to Carer instead of Wife, it becomes a lonely place no matter how much help is available from family, friends and services. Thank you all for telling your stories and thank you for reading mine. It feels reassuring to know I’m not alone.
Snehashis roy
saysI don't understand my mom know my name and she know her name, l am taking my mom lot's and talking like fairy tales
A
saysHer brain is malfunctioning. Nothing you do or say will change that. Just go to her world and try to make that world as pleasant as possible.
LINDA JOHNSON
saysI feel for all of you as my mum 93 yrs old went into a carehome 2 weeks ago i always said while she knew me i wouldn,t let her go into one ,it all seemed to happen quickly after a fall and cutting her head open in October for 11 weeks she had carers 4 times a day was bedbound due to peripheral neuropathy ,i was there twice a day and sometimes overnight ,i done her washing ,shopping ,bill paying and cooked her food for 4 plus hours a day 7 days a week no day off being an only child i was frazelled and lost two and a half stone ,we went through the same thing every evening before i left ,is the backway locked ,is my cat in ,is the light on in hallway downstairs ,i want to go up to bed when she was already up in bed ,could not recognise her upstairs and thought she was downstairs ,kept asking me are you going out again tonight ,no mum i have to go to my home ,as soon as i got home the phone would ring sometimes 11 times in 4 hours when i was trying to cook or eat, i have dropped the tv remote can you come over and pick it up for me ,can you come here i feel nervous when are you coming home ,the last straw was trashing her bedroom 3 times due to hallucination ,she then managed to get herself downstairs on her bum this is where the carers found her sitting on the bottom step, she also spilt water on the wall socket and fused the lights ,her GP got her into hospital as she was concerned it may be a hematoma ,mum stayed there for 2 weeks the brain scan showed brain shrinkage most likely dementia also 2 fractures of the spine and numerous mini strokes ,the physciatrist said she needed 24 hour care ,it broke my heart as we spoke on the phone sometimes 4 times a day now thanks to covid i can,t visit she has a mobile in her room but due to failing hearing and eyesight can,t use it so i let them know when i will be ringing and a carer will be in her room waiting for my call ,sadly she is totally confused but seems happy enough in her own little world ,well looked after and safe ,this is all i can ask for now ,yes i,ve felt guilty and sobbed my heart out but know my lovely mum is where she should be ,i truly know what everyone on here is going through ,but you have done your best you need to look after you now ,you need the weight to be lifted off of your shoulders .
Linda
saysI totally understand where you are coming from as I am in the same situation .now my mum is very distressed and is abusive to staff now.. the staff are very concerned about her as she is not wanting to eat or drink..she just wants to stay in bed..due to covid I can only get an outside visit for 20 mins one day a week..last week she refused to come out and see me..told staff no one wants her..I have been with her all my life and I think she misses me and its causing the distress..she will be 98 in may..and well as dementia..her eye sight and hearing is very poor. It's so hard being separated from her..but she is getting 24 hour care which I couldn't give any more and it was affecting my own health..we have all done our best as carers and that's what we have to keep telling ourselves..take care
LINDA JOHNSON
saysAwww Linda i thought i was reading about myself for a minute ,maybe the GP can give her something to calm her ,mum had a bad few days when she first went in two weeks ago ,she played them up and threw a salad at the carer ,she seems to be on the right meds now as we had a heart to heart conversation yesterday and it made me think have they diagnosed her wrongly ,although she says about going home ,she says she likes it there they are looking after her very well but she says i can,t stay here forever ,i told her why not you like it or would you rather be at home with carers that you can,t understand ,on your own most of the day and all night and not being able to look after yourself ,i told her you haven,t been out for 2 years now the carers can take you out in the gardens you can have your hair and nails done once the lockdown is over ,we can visit ,you will have all of the parties that the home arranges and you have company when you want it ,all of that she agreed with ,i know she misses the day to day contact with me being the only child too ,i also miss it ,but she is in the best place for her now the same as your mum is ,i went from 11st 12 to 9 stone since march 2019 when she broke her hip ,the weeks from october since she was bedbound the weight just fell off me ,being over there twice sometimes three times a day cooking and feeding her i forgot to eat myself ,i survived on a sandwich ,it nearly broke our relationship up due to mums demands and on the phone constantly ,but we got through it ,i still feel guilty her being there but it is best for all of us ,i can sit and have a meal without the phone going and relax now knowing she won,t be falling over twice a month and us going to pick her up off the floor my stomach was in knots everytime the phone rang ,she has little appetite hardly has any of their cooked food as she hates peoples cooking ,she will have crackers ,sandwiches ,crisps ,cake, biscuits but as long as she is eating i don,t mind what she has ,can you tempt your mum with something she likes ? i made a bread pudding took her up some and the carers said it didn,t last long ,maybe if they told your mum that you made it and took it up for her it might encourage her to eat,it is difficult and heartbreaking for you Linda ,but know you need to get yourself back on track you like me have done your very best it is now up to the people who know how to deal with dementia ,i worked as a domestic in a carehome for dementia for 7 years and watched relations go through the same thing that we are going through now but it still didn,t prepare me for what i had to face ,go easy on yourself and hopefully just like my mum yours will enjoy her new surroundings .
elisa
saysthe guilt is the hardest part....I hate that I have had to place my mother in a home. But I am a single mother of a 6 year old and it was just too hard...
Pam Hvizd
saysI just had to put my 86 year old mom in a nursing home yesterday. Gut wrenching is all I can say.
I was her caregiver for 8 years and this past year her dementia worsen and bc of chronic pain she could not walk , along with so many health issues . 24/7 care. I am not so young anymore and my husband has health issues too. She keeps saying she wants to come home . Breaks my heart. I saw her for 30 min this morning and she was happy. Now she called and said she waiting for me. Gosh I hate this . My sister will see her today for 30 min.
Jo
saysHi Pam , I have just put my 91 years old mum who has Dememtia in Aged Care Home , and the only words she is saying to to me constantly and repetively I want to go home , please take me home I hate it here take me home , it is so sad , need someone to talk to it’s so difficult.
Jo
Hi Jo,
Thank you for sharing, we're really sorry to hear you've been having a difficult time.
Remember you can call our Dementia Connect support line on 0333 150 3456 whenever you need to talk. You can find more detail and opening hours here: https://www.alzheimers.org.uk/dementia-connect-support-line
Some people also find it helpful to connect with others with similar experiences. If this sounds like something you would be interested in, check out our online community, Dementia talking point: https://forum.alzheimers.org.uk/
Hope this helps,
Alzheimer's Society blog team
Sue Davey
saysIt is so nice to read these stories and know you are not alone.
My Mum is 88 she has Alzhiemers she has poor mobility and oedema.
She has other health issues too gets short of breath.
She gets very frustrated and upset as she is aware that her memory is not good.
She confused who all the family are.
I have done her a memory book and go through it with her photo's of all the family and her friends.
She has been in rehab for over 2 weeks and due to covid been unable to visit her.
They also did not have facility for me to speak to her.
She came home to her flat yesterday I have had to put 24 hr care in for her now but was very upsetting to see the deterioration in her.
She had 3 falls in a week before she went to rehab.
I do her washing, shopping pay Bill's correspondence and appointments etc.
I also have my mother in law who is bed bound and has carers so support her to as well as working full time.
Can be tiring and worry if you saying and doing the right thing.
She does not want to go in care home so doing my best to put in care I can for her at her flat.
A
saysIt sounds like your mother needed a bed alarm so the caretakers would know when she was out of her bed. I'm so sorry you are all going through this. Brain disease are just horrible!
Sue Davey
saysMum only had carers twice a day at that time.
I have now put 24 hr care in for her.
Yes so sad and so many families coping with this disease.
Difficult times when you see them deteriorating in front of you .
Makes me feel helpless xx
Nico
saysIt’s an impossibly painful decision... my mum wanted to be allowed to stay at home and pass away at home with her family close by. She was sectioned to a dementia unit of a hospital in order to protect and give rest to our frail father who came home after a stroke and needed carers. My mum was his sole carer for years! It is heart breaking to split them up, devastating, after she has managed so well. You could not have done more. Acknowledge the feelings yes, but know you tried your absolute hardest. No one could do more. We know them the best, we love them the most, but you cannot carry everything. God bless you and your darling mother 🌷🌷
Ty
saysHello. My mother was pretty independent at about this time last year. She was living by herself still in the house she had been living in for 25 years. We noticed some small memory things at that point, and we thought it was prudent to have her move into an independent living facility and out of the large house, and she understood and was willing to do so. However, right as we signed the lease, COVID came. We could not in good conscience have her move there with other people and potentially be at risk of COVID. So we had to have her remain at the house and wait out the virus. That was 10 months ago.
Throughout the summer and fall we had her groceries delivered and kept her safe. She only really went out to walk her dog. Even though she was physically safe from COVID, she was negatively affected in other ways. I think her isolation and the fact that everything was suddenly being done for her was very detrimental. She lost a lot of self-sufficiency. She's only 79. By the time the Chicago winter came, we were just too nervous to have her stay in the house any longer. We noticed odd things and couldn't wait out the virus any longer. So we had to move her to a senior center - in the middle of winter during COVID. There's probably been no worse time to do this in history. She has been in senior living now for about a month and a half, and it has been a mixed bag. Her memory and cognition are definitely affected now, and it is exacerbated by being in a new space and having to learn new routines, and being basically trapped in her apartment. She's technically independent living with personalized service, but I think that's already being stretched too thin, and I don't want them to resent her. but we just had no idea where she was from a memory/cognition standpoint until she moved in. And I wanted to give her every opportunity to live independently. So we are already talking to the facility about her going to the Assisted Living floors. It's just crazy how much she has changed in a year because of the COVID factor. I do feel a lot of guilt and shame for taking her away from her home. But it was necessary. What if she had fallen and nobody found her for days? What if something happened with the stove or oven? What if she had gone crazy and gone out on errands and gotten COVID? I'm glad she made this move, but it breaks my heart every time she says she wants to go home.
Carole ALTIN
saysMy mother has alzheimers shouting every day and nights she does not want to do anything with me drawing colouring puzzles etc as I have tried every thing all she wants to do is to go out and when I take her out around the corner and the 2 of us give her walks to as I cant take her anywhere else at the moment because of the lockdown . When we go back into the house she starts again shouting and she wants to go out again can any body tell me what I can do with her to try and stop the shouting I love her so much and I dont want to put her into a home as my sister has gone into a home at 68 with vasalur dementia and lonely on her gone it is so sad as I can't look after the 2 of them
Hi Carole,
Thanks for your comment, and sorry to hear about these recent challenges with your mother. That sounds really difficult for you.
I'd strongly recommend talking to one of our dementia advisers about the situation, who can give some advice and ideas that may be helpful. You can call our Dementia Connect support line on 0333 150 3456, and read more details here: https://www.alzheimers.org.uk/dementia-connect-support-line
Hope this helps, Carole.
Alzheimer's Society blog team
Linda
saysI had the same situation..you can ask social services for a companion to come to the home and they give you a break for 2 hours so many days a week..they will keep them company and take your mum for a walk..sadly my mum had to go into full time care..I will live with the guilt forever as itwas a hard decision to make....she has good days and bad and is always asking when she can come home...its heartbreaking but she is getting 24 hour care and I know she Is safe...if it wasnt for this covid i would be able to visit her as often as i wanted too.i hope you get the help you so badly need ..take care
Carole ALTIN
saysMorning Linda thank you I get a carer on a Monday and Thursday for 4 hours it gives me a rest .My carer takes my mum out but when she comes back again she wants to go out again and she is shouting all the time because of the Covid she cant do what we use to do as I can not take her to a cafe or post office or go shopping as she cant go into shops it is very hard as they dont know what is going on . Putting your mum in a care home must of been very hard for you and that you cant go and see her as you say she is in a best place and you know she is safe you did all you can and soon you will see her
A
saysTry music, especially Sing-alongs from her generation. They especially love Frank Sinatra. If you don't know the lyrics, print it out for yourself. Maybe she would like to dance with you as well.
Rosemary
saysI am caregiver for my husband. We are now in about year old. He is not bedridden but unable to really do anything. The wanting to go home, we are at home, used to start in late afternoon, now we often start with it in the morning. To be honest I am mentally and physically exhausted, I am 74. I can cope mostly with the practicalities but find the verbal abuse is depleting my will to continue caregiving or even living. I am afraid to put him in care it feels almost like throwing him away, but at the same time have lots of pent up anger inside me. Is a care home wrong at this stage.
Katy
saysI think it’s totally acceptable and normal to have the feelings you are having. It is so extremely hard to deal with a dementia sufferer asking to go home. I am dealing with the same situation multiple times a day. It is my dad who has lived in his home for over 50 years. When I say he is home he shouts and accuses me of confusing him and gets very angry. Today I shouted back as I am so frustrated at times. It is so hard to keep your cool. For anyone dealing with this situation you can only do your best. Guilt and anger are unfortunately a natural part of dealing with this situation. Guilt at losing my patience sometimes. Anger at the way he shouts at me. Then I see his upset and feel devastated by the whole situation. What a horrendous disease for everyone involved. I am sure you are doing your best. I am 44 with a young family who I am home schooling too. You need to look after yourself too, if there comes a point where you cannot cope then only you know deep down if you have reached the point that you cannot do anymore. You are only human, I’m sure whatever you decide it is not a reflection on your love for him. Nobody knows what it’s like unless they’ve experienced a loved one with dementia for themselves.
Take care, you are not alone x
A
saysI felt the same way with my mother when she was in her right mind and the caretaker for my grandmother with Alzheimer's Disease she made my brother and I promise, when the time came, to put her in a facility as to not burden her the way my grandmother (unintentionally) burdened her. So we carried out her wishes. If she lived with me, we would both be suffering. It was her wish, as it is for my son, for us not to both suffer. Living with loved ones is problematic and so are facilities. That said, having experienced both, having your loved one at a facility can save YOUR life.
Deborah Lueth
saysOur Mother recently had Colon surgery and it is Cancer. Due to Covid we were not allowed to spend time before her surgery. She is now in a Skilled Nursing Facility. We just found out she has Alzheimer’s and had no idea due to Covid. Assistants Living she was at didn’t tell Us this. My brothers, sister and I just did Zoom to talk to her and all she kept saying is that she wanted to “go home.” I’m now understanding why she couldn’t figure out why she couldn’t dial her phone to call Us, why she had mood swings and why she kept telling Me the “food wasn’t good” at her Assisted Living Facility before having surgery. She had Cancer and Alzheimer’s. My heart aches for her and I pray to God she doesn’t suffer much longer.