Advice

‘I want to go home’ - What to say to someone with dementia in care

My 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.

Something 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.

My 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.

Wow, 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.

Both 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)

Went 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!

I'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

Hi 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?

My 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.

I’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.

I 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 .

Hello. 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.

My 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

I 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.

Our 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.