Missing mum now she is in a care home.

[Choux]

My mum was diagnosed with Alzheimer’s 5 years ago. She was in her 80s when diagnosed and it has progressed slowly. Dad looked after her and as they got older they started having care visits and I visited when I could as I live 200 miles away. When not there I called 5-6 times a week.

Dad started to get sicker and frailer about six months ago and I upped the frequency and duration of my visits and they got more care visits too. I also called at least daily. Sadly dad died seven weeks ago. I went to stay and looked after her for two weeks while waiting for a place in the care home we wanted. I was there for a few more weeks clearing out their home so could visit almost daily.

But now I am home and I am struggling with not seeing or speaking to her daily. I miss her. I worry now I can only visit every couple of weeks she will feel abandoned. Or that she will forget who I am - she sometimes takes a while to remember now. I know she is in a great home with caring staff, activities etc but from looking at the visitors book none of the other residents were getting as many visits as I was making. Do children just have to let their parent with Alzheimer’s go as it is better for them to live only in their care home world?

I called at the weekend to find out how she was doing and they said she was settled and fine. I didn’t actually speak to her but they said they would tell her I had called and that I was visiting this weekend. They didn’t offer for me to talk to her and I didn’t want to ask in case it was hard for her to hear - she has hearing aids - or she was having a bad day memory wise.

Not being close to mum is harder than grieving dad as he is gone but mum is still here but not really in my life iyswim?

Oh how difficult

Does she have other local visitors? My friend's mum moved to a care home near her rather than near her old home, but that might not be right for your mum.

I think it is OK to ask to speak to your mum more often, you can always hang up quickly if the call is not good.

Also maybe some other gestures, like send regular postcards#, so you feel connected.

I'm also sorry for the loss of your dad.

That's so sad. Can you move her nearer?

It was a conscious decision to keep her in the area she knew rather than move her near me as she will recognize local accents, can talk about local towns and areas and will have other visitors than just me.

Plus this care home came recommended (and I am truly happy with it and think it would be really hard to find an equivalent place close to my home) and moving all mum’s medical care - she sees two departments at the nearest hospital - and starting afresh in a new area seemed like a large task.

I could send cards but her sight isn’t good so she would need to have the staff read to her. My aunt has sent a postcard so I will see if I can see that in her room this weekend.

I could send cards but her sight isn’t good so she would need to have the staff read to her. That sounds quite nice, as then she can talk to them about you.

I think I would move her closer tow if I was in your situation, family is more important than a few visitors and understanding the accent isn’t that important.
if she becomes more unwell it isn’t going to be tenable to visit her more so sounds like moving her now could be a good option for you both, hospital visits can be moved.
hope things get a bit easier

Could you get her something that you can video call on? Maybe something where you could drop-in, or if not, would the staff be able to help answer or make those calls? That might make you both feel better than just a phone call.

I work in a care home,

Is it possible to set up a weekly skype call between yourself and your mum? The activities teams should be able to advise you with this.

I have had a brief chat to the manager about FaceTime or Skype calls. They said they could do it but didn't really go into any details. It's a small home of 25 residents and the manager only arrived after Covid lockdowns so wasn't doing video calls when visits were not allowed.

Maybe I need to just call and ask to speak to mum and then take it from there. A weekly video call would mean so much to me. Although I am aware that what's really important is what's best for mum.

My Mum has dementia too and still lives at home. I have set up an Alexa Show beside her seat in the livingroom and it lets me "drop-in" and chat to her on camera whenever I want. She doesn't need to press anything to answer it. Maybe you could set one up in your Mum's room and chat to her every evening or whenever she tends to be in her room. It gives me huge peace of mind.x

I think everything would be so much easier if she was near you. You could go and see her regularly and you wouldn't have that huge drive. It's going to be so difficult if she isn't in her home anymore and you have to find somewhere to stay. I think she would benefit from seeing you regularly over, recognising local accents.

I really feel for you. This is something we all dread. 💐

I have several places to stay when I visit and it's possible to go there and back in a day on the train if I need to.

I live in London. Quite central. I can't imagine how I could find a small family feel care home where there is a garden and regular activities for residents without spending weeks calling and touring homes. Plus that would mean making it difficult for anyone else to visit her. But if people have recommendations of London homes I will take a look.

Some of the staff in her home have been there for decades. I imagine that the staff are much more transient in London homes. Although that doesn't mean they are any less dedicated but it's potentially regular change for mum.

Feel you for @Choux you sound like you are doing your best in an awful situation she must be really missing your dad.

You could bake for her @Choux her fave thing when you go, you could make het a cd of het favourite songs , Skype is a great idea

Thanks. I have told her about 50 times that dad has died but she still talks about him in the present tense and never asks where he is. So I don't know if she has forgotten him now she isn't in the house she lived in with him or just chooses not to talk about him.

She has been through so much the last few weeks that I want to be there for her. She is so lovely and I am so used to daily contact with her. Sometimes she wouldn't really talk to me when I called mum and dad but he would fill me in so I got regular updates. And now I'm just wondering how she is. I don't want to be a nuisance to the staff and I don't want to unsettle her but I want to stay in touch with her if I can.

I have told her about 50 times that dad has died but she still talks about him in the present tense and never asks where he is. Don’t keep telling her. Every time you tell her it’s new news, causing new distress. Play along with her world, where he’s still alive but not in the room.

I could send cards but her sight isn’t good so she would need to have the staff read to her. I send a letter to my dad once a week which the care staff read to him -the manager tells me it gives them a way of connecting with him and is nice for them too.

I send a letter to my dad once a week which the care staff read to him -the manager tells me it gives them a way of connecting with him and is nice for them too.

Thanks - I am going to try this. I think it might work better than calls as the staff can read it at a time when she is going to be receptive. And read it more than once if it helps her.

Re the 50 times telling him he had died that was in the house when she kept asking where he was. In the care home she rarely does that so we gloss over it when it happens.

you have done so well to find a place where your dm is content and you are confident she is well cared for. Such places are priceless. A move would confuse and upset her. The ideas from others are v good. Perhaps explain to the staff what you’d like and see what they suggest? And please be kind to yourself.🌺🌺

I understand the sense of loss you feel. For me it was a little more complicated as mum lived with me and I was her carer so I really appreciated getting my life back but still felt lost and guilty. My sadness now is for mum and the things she is missing out on. Although I tell her the family news she doesn't understand and she is missing the excitement of our my adult children growing up and starting families of their own.

You say her sight is not good. My kids send Moonpig cards to mum - the very big photo cards and she loves them because she can see them. She also has a couple of photo blankets. The photos are large and she can recognise individuals and they are a talking point with staff at the home.

Those are things that benefit mum but what helped me was counselling through Cruse, the bereavement charity. I don't know if it has been rolled out everywhere but in our area they were offering pre bereavement counselling for people in our situation - where you have lost a loved one who is still alive. You might find that helpful?

The good news is her concept of time is not the same as yours so it’s probably worse for you than it is her.

There’s so much you can do that will make her day to day better. Creating a memory box of meaningful items, having her favourite familiar things in her room, photos and photo albums, sending her favourite music and a music player, writing down as much of her life story as you can remember for the care team so they have starting points for things to talk about.

When you visit it can be really good to do a motor activity that she can do with her eyes closed. Ie. Something she’s been doing her whole life. It’s a bit like driving a car on the motorway and contemplating life. If you can find something which she can do automatically it can subconsciously open the mind and memory. Like visiting a stables if horses were her thing, or cooking, or baking a cake. Or knitting. Or gardening. Or even folding laundry. Or whatever it was that are her most familiar or frequent pastimes.

Yes the bereavement is a difficult one. Some say you should say as they have a right to grieve even though they have dementia. Some say you shouldn’t.

I think a balance is right. It sounds like you have done that. It’s near impossible to get it 100% right so you can only do the best you can and take each moment as it comes.

@Choux your post has made me cry (for the millionth time) as I’m basically in the same situation.

My dad died last year and then after a series of medical issues and a stroke, I’ve had to put my mum in a care home. The stroke damage is presenting like dementia, so she’s not really aware of much.

We talked every day before she got ill, and like you I just miss her so much. Also like you, I’ve made the decision to leave her in her familiar area for the same reasons. She’s got lots of friends and family there, and she gets lots of visitors, and in her mind she’s still “home”. We asked her to come and live with us after dad died (when she was still compos mentis) but she didn’t want to leave her much loved home town, so I’m confident it was the right decision. I think it is for your mum too.

She talks about dad in the present too, and we do tell her that he’s died. I know it’s not necessarily what is recommended, but she’s never upset by it; she just says ‘oh ok’ and moves on. It’s like she doesn’t really have any emotional connections any more.

Anyway, I didn’t mean to take over your thread with my story but it just struck a chord. 💐

I know you said her sight isn't good, but is she able to look at photos? If so I really recommend a digital photo frame. When my dad isn't well and can't do much else, he still loves looking at the different photos, and it's easy for you to add new ones all the time.

I understand just how you feel however whether you go once a day or once a month, the progression will mean your mum won’t remember you like she used to.

I was just 50 miles from mum and after dad died in September I spent week’s travelling daily to see her.

One day I went and had a lovely visit, and the staff said she could do with more underwear. I went to the local M&S and purchased some things and went back to drop them off.

I was met with stoney silence. Apparently she’d had no visitors for weeks and her daughter didn’t come at all. It broke my heart as I was running myself ragged trying to visit and it was now obvious she didn’t recollect my visiting.

The staff said to step back and try once a week then once every 2 weeks. This was for my sanity. I felt dreadful but knew she was receiving amazing care whether I was there or not.

Wishing you all the best x x