Care Home Worries

[francesca16]

Hi all,

I haven't posted on here since Nov 23, I guess because I've been spending all my time trying to deal with Mum and her illness.

My mum was diagnosed with early onset dementia in November 2022, and she is now 64 years old. She has rapidly declined since Christmas. Yesterday we moved her into a care home initially for 2 weeks respite to see how she adapts. If she settles, she will stay. The home is in a lovely setting and has lovely staff. She currently lives alone and cannot manage basic tasks (such as showering, washing clothes, feeding herself) anymore. She also has 2 large German Shepherd dogs which she hadn't I don't think taken for a walk for weeks. They are now in a trusted boarding kennels so they are safe and getting what they need. I have even had to lie to her about that and say that they are at my house, when they are not .

I am feeling such a large amount of guilt. I am only 27, but I feel like I am letting her down. Everyone I have spoken to or sought advice from has said it is the best thing to do, but I can't help but feel so guilty and it's eating me up inside. I called the home earlier to see how she was getting on (she was unsettled when we left her there yesterday and didn't want to stay there without us). They want to move her up a floor for safety reasons as she is pacing the whole floor (they put her on the ground floor which is the nursing floor initially as there were rooms free there) and she managed to follow someone into a life and make her way to reception on her own. The thought of her wandering around on her own is absolutely breaking my heart.

I know she only moved in yesterday and I need to give it chance. Has anyone else had to do this (we didn't get home carers first as we feel she needs 24/7 care now). Everyone I have spoken to at the home have said that she needs care and we are doing the right thing. She is just too young for this she has always been fit and healthy

Has anyone else had to do this and did your loved one settle eventually? I just want her to settle and be happy there

Thanks in advance everyone x

 

[Kevinl]

Hello and welcome to the site.
I packed our youngest off to live with his big sister when he finished high school aged 16, it was hard but I think it was for the best.
It was soul destroying for him seeing mum fall apart like that, big sister has been his stand in mum for over half his life now.
It wasn't great for me but it was for the best for him, I still think that now, your own mum not recognising you it must have been hard for all our children.
K

 

[backin]

It is one of the hardest things to do. Keep informed by asking the staff how she is doing. Don't visit. They will be in touch if there are major problems

I did the same for two weeks about 3 years ago. In that time I managed to get her house deep cleaned before the home asked me to take her back, they can't keep them by force unless a dols is applied

Take time to do what you need to and get a bit of rest yourself.

Are you UK? Are social services involved?

 

[francesca16]

Hello and welcome to the site.
I packed our youngest off to live with his big sister when he finished high school aged 16, it was hard but I think it was for the best.
It was soul destroying for him seeing mum fall apart like that, big sister has been his stand in mum for over half his life now.
It wasn't great for me but it was for the best for him, I still think that now, your own mum not recognising you it must have been hard for all our children.
K

Hi Kevin, this must have been really tough for you all, I'm really sorry to hear that you went through this.

 

[francesca16]

It is one of the hardest things to do. Keep informed by asking the staff how she is doing. Don't visit. They will be in touch if there are major problems

I did the same for two weeks about 3 years ago. In that time I managed to get her house deep cleaned before the home asked me to take her back, they can't keep them by force unless a dols is applied

Take time to do what you need to and get a bit of rest yourself.

Are you UK? Are social services involved?

Hi backin, thank you. I definitely am not planning to visit just yet, I think she would think that I am taking her 'home' even though she began to hate the house she has owned for over 30 years.

I am worried that they will ask us to have her back if she doesn't settle, but she just cannot live on her own. We would have to look at other homes perhaps a bit more specialist for early onset dementia.

Yes, we are in the UK. Social services have been involved but to be honest haven't really wanted to know and have offered very very limited support. She has an assigned occupational therapist but again there isn't a plan in place and we have arranged this stay ourselves, her OT saw her not long ago and just said we should get a carer in a few times a day, but this is not enough in my opinion.

 

[backin]

After my mums aborted stay, she had carers coming in 3 times a day. Once the routine settled in they did shower, meds, breakfast, washing, changing sheets first visit. Snack and welfare midday. Microwave meal, meds third visit. Mum was also incontinent so was checked each time.

This routine worked for about 18 months.

In between there were falls, infections, hospital visits until the last hospital visit saw her discharged for assessment, deemed not fit to go home and was placed into a care home

My sister and I would have loved to have got her settled in a home earlier to make the most of company etc, not to mention reduce the worry and work for myself as the one caring for her at a small distance. It's horrible waiting for over 12 hours for an ambulance when she needed picking up (refusing to let me help and trying to grab on to things to pull herself up which was never going to happen) or obviously I'll with yet another leg infection.

Hang on in there and try to make her as safe as possible, let social services deal with it but be her advocate.

 

[Ellie2018]

I think it’s natural to feel guilty, and this is probably because of all the horror stories that you hear when in fact there are lots of positive stories you just don’t hear. Different topic but I had breast cancer recently and I was terrified because all I heard was how terrible the treatment was, particularly chemotherapy but actually my experience was absolutely fine so I made it a mission to tell people. I have had two relatives in homes, physical issues for both, but both thoroughly enjoyed it and felt safer having someone there 24/7. Hopefully your feelings of guilt will reduce as she settles and I’m sure she will.

 

[jac69]

Hi all,

I haven't posted on here since Nov 23, I guess because I've been spending all my time trying to deal with Mum and her illness.

My mum was diagnosed with early onset dementia in November 2022, and she is now 64 years old. She has rapidly declined since Christmas. Yesterday we moved her into a care home initially for 2 weeks respite to see how she adapts. If she settles, she will stay. The home is in a lovely setting and has lovely staff. She currently lives alone and cannot manage basic tasks (such as showering, washing clothes, feeding herself) anymore. She also has 2 large German Shepherd dogs which she hadn't I don't think taken for a walk for weeks. They are now in a trusted boarding kennels so they are safe and getting what they need. I have even had to lie to her about that and say that they are at my house, when they are not .

I am feeling such a large amount of guilt. I am only 27, but I feel like I am letting her down. Everyone I have spoken to or sought advice from has said it is the best thing to do, but I can't help but feel so guilty and it's eating me up inside. I called the home earlier to see how she was getting on (she was unsettled when we left her there yesterday and didn't want to stay there without us). They want to move her up a floor for safety reasons as she is pacing the whole floor (they put her on the ground floor which is the nursing floor initially as there were rooms free there) and she managed to follow someone into a life and make her way to reception on her own. The thought of her wandering around on her own is absolutely breaking my heart.

I know she only moved in yesterday and I need to give it chance. Has anyone else had to do this (we didn't get home carers first as we feel she needs 24/7 care now). Everyone I have spoken to at the home have said that she needs care and we are doing the right thing. She is just too young for this she has always been fit and healthy

Has anyone else had to do this and did your loved one settle eventually? I just want her to settle and be happy there

Thanks in advance everyone x

Don't feel guilty it is the best thing for your mum. She will settle and you can visit her and have happy memories. I took my husband to daycare at a care home today for his first visit. He knows I will be back at 5pm for him. He is clean and continent but 5 years into an FTD diagnosis is becoming difficult to manage 24/7 He is constantly bored and seeking attention and argumenatatve if you dont take him out for cake or coffee. Hopefully if this works once a week we can increase it to 2 or 3 days then full time will be less upsetting for him

 

[Jake's Nan]

Hi all,

I haven't posted on here since Nov 23, I guess because I've been spending all my time trying to deal with Mum and her illness.

My mum was diagnosed with early onset dementia in November 2022, and she is now 64 years old. She has rapidly declined since Christmas. Yesterday we moved her into a care home initially for 2 weeks respite to see how she adapts. If she settles, she will stay. The home is in a lovely setting and has lovely staff. She currently lives alone and cannot manage basic tasks (such as showering, washing clothes, feeding herself) anymore. She also has 2 large German Shepherd dogs which she hadn't I don't think taken for a walk for weeks. They are now in a trusted boarding kennels so they are safe and getting what they need. I have even had to lie to her about that and say that they are at my house, when they are not .

I am feeling such a large amount of guilt. I am only 27, but I feel like I am letting her down. Everyone I have spoken to or sought advice from has said it is the best thing to do, but I can't help but feel so guilty and it's eating me up inside. I called the home earlier to see how she was getting on (she was unsettled when we left her there yesterday and didn't want to stay there without us). They want to move her up a floor for safety reasons as she is pacing the whole floor (they put her on the ground floor which is the nursing floor initially as there were rooms free there) and she managed to follow someone into a life and make her way to reception on her own. The thought of her wandering around on her own is absolutely breaking my heart.

I know she only moved in yesterday and I need to give it chance. Has anyone else had to do this (we didn't get home carers first as we feel she needs 24/7 care now). Everyone I have spoken to at the home have said that she needs care and we are doing the right thing. She is just too young for this she has always been fit and healthy

Has anyone else had to do this and did your loved one settle eventually? I just want her to settle and be happy there

Thanks in advance everyone x

 

[Jake's Nan]

Hi all,

I haven't posted on here since Nov 23, I guess because I've been spending all my time trying to deal with Mum and her illness.

My mum was diagnosed with early onset dementia in November 2022, and she is now 64 years old. She has rapidly declined since Christmas. Yesterday we moved her into a care home initially for 2 weeks respite to see how she adapts. If she settles, she will stay. The home is in a lovely setting and has lovely staff. She currently lives alone and cannot manage basic tasks (such as showering, washing clothes, feeding herself) anymore. She also has 2 large German Shepherd dogs which she hadn't I don't think taken for a walk for weeks. They are now in a trusted boarding kennels so they are safe and getting what they need. I have even had to lie to her about that and say that they are at my house, when they are not .

I am feeling such a large amount of guilt. I am only 27, but I feel like I am letting her down. Everyone I have spoken to or sought advice from has said it is the best thing to do, but I can't help but feel so guilty and it's eating me up inside. I called the home earlier to see how she was getting on (she was unsettled when we left her there yesterday and didn't want to stay there without us). They want to move her up a floor for safety reasons as she is pacing the whole floor (they put her on the ground floor which is the nursing floor initially as there were rooms free there) and she managed to follow someone into a life and make her way to reception on her own. The thought of her wandering around on her own is absolutely breaking my heart.

I know she only moved in yesterday and I need to give it chance. Has anyone else had to do this (we didn't get home carers first as we feel she needs 24/7 care now). Everyone I have spoken to at the home have said that she needs care and we are doing the right thing. She is just too young for this she has always been fit and healthy

Has anyone else had to do this and did your loved one settle eventually? I just want her to settle and be happy there

Thanks in advance everyone x

 

[Jake's Nan]

You know your mum better than anyone and if you feel it's the best place in the care home to be stick with it. We moved my brother to live near me 8 months ago not realising how rapidly he would decline (he's nearly 61 yrs) in hindsight assisted living or care home would of been better from day 1. We now have carers 3 x daily and I also care for him, he gets anxious lonely still and has once left his home and wandered.

 

[Sarasa]

@francesca16, it might take your mum more than two weeks to settle, so I'd be inclined to extend her stay. I don't know that my mum actually ever really did. However a care home was still the right place for her as she wasn't managing at home anymore and would have refused to let carers in to help her as she thought she was fine. If your mum did go home, you'd probably be having to move her back into care quite soon.
It's difficult not to feel guilty, but it's the dementia that means your mum now needs to be in care, not anything you've done. A good care home will cope with her wanderings and try and find out what she likes and help her start to enjoy living there.
It took a while but in the end I could visit mum and have a good time joining in the activities with her, or taking her out for a coffee.

 

[Ellie2018]

Don't feel guilty it is the best thing for your mum. She will settle and you can visit her and have happy memories. I took my husband to daycare at a care home today for his first visit. He knows I will be back at 5pm for him. He is clean and continent but 5 years into an FTD diagnosis is becoming difficult to manage 24/7 He is constantly bored and seeking attention and argumenatatve if you dont take him out for cake or coffee. Hopefully if this works once a week we can increase it to 2 or 3 days then full time will be less upsetting for him

Oh my word Jac, I thought that is written this! My husband is exactly the same, although I’m just having to move to a different day centre as the one he was at didn’t specialise in dementia so struggled when he was argumentative. We started at one a week and went to between two and theee, evenings are also easier because he has been busy all day. It makes such a difference to me and how I feel.

 

[francesca16]

After my mums aborted stay, she had carers coming in 3 times a day. Once the routine settled in they did shower, meds, breakfast, washing, changing sheets first visit. Snack and welfare midday. Microwave meal, meds third visit. Mum was also incontinent so was checked each time.

This routine worked for about 18 months.

In between there were falls, infections, hospital visits until the last hospital visit saw her discharged for assessment, deemed not fit to go home and was placed into a care home

My sister and I would have loved to have got her settled in a home earlier to make the most of company etc, not to mention reduce the worry and work for myself as the one caring for her at a small distance. It's horrible waiting for over 12 hours for an ambulance when she needed picking up (refusing to let me help and trying to grab on to things to pull herself up which was never going to happen) or obviously I'll with yet another leg infection.

Hang on in there and try to make her as safe as possible, let social services deal with it but be her advocate.

The worry with Mum is that something terrible would happen in the periods of time that someone wasn't there (she kept putting things in the oven and also dry teabags in the kettle and turning it on).

Just trying to go with the flow and trying not to worry too much, thank you x

 

[francesca16]

I think it’s natural to feel guilty, and this is probably because of all the horror stories that you hear when in fact there are lots of positive stories you just don’t hear. Different topic but I had breast cancer recently and I was terrified because all I heard was how terrible the treatment was, particularly chemotherapy but actually my experience was absolutely fine so I made it a mission to tell people. I have had two relatives in homes, physical issues for both, but both thoroughly enjoyed it and felt safer having someone there 24/7. Hopefully your feelings of guilt will reduce as she settles and I’m sure she will.

Gosh, hope you are on the mend now. Thank you x

 

[francesca16]

Don't feel guilty it is the best thing for your mum. She will settle and you can visit her and have happy memories. I took my husband to daycare at a care home today for his first visit. He knows I will be back at 5pm for him. He is clean and continent but 5 years into an FTD diagnosis is becoming difficult to manage 24/7 He is constantly bored and seeking attention and argumenatatve if you dont take him out for cake or coffee. Hopefully if this works once a week we can increase it to 2 or 3 days then full time will be less upsetting for him

Thank you. I hope that your husband had a positive stay for the day and it will make it easier for you in the future x

 

[francesca16]

You know your mum better than anyone and if you feel it's the best place in the care home to be stick with it. We moved my brother to live near me 8 months ago not realising how rapidly he would decline (he's nearly 61 yrs) in hindsight assisted living or care home would of been better from day 1. We now have carers 3 x daily and I also care for him, he gets anxious lonely still and has once left his home and wandered.

I just can't see how she can live at home anymore and carers whilst good would not be enough of the day I don't think, live in carers are not really an option either. Sorry to hear about your brother he is also so young just like my mum x

 

[francesca16]

@francesca16, it might take your mum more than two weeks to settle, so I'd be inclined to extend her stay. I don't know that my mum actually ever really did. However a care home was still the right place for her as she wasn't managing at home anymore and would have refused to let carers in to help her as she thought she was fine. If your mum did go home, you'd probably be having to move her back into care quite soon.
It's difficult not to feel guilty, but it's the dementia that means your mum now needs to be in care, not anything you've done. A good care home will cope with her wanderings and try and find out what she likes and help her start to enjoy living there.
It took a while but in the end I could visit mum and have a good time joining in the activities with her, or taking her out for a coffee.

I think it will, but yeah she would never manage at home now on her own. I'm really hoping that I can enjoy visits to her again because when I visited her at home they weren't really social visits it was more sorting out her food, finances etc and she would get a bit annoyed with me about it, but it had to be done. Thank you x

 

[Ellie2018]

Gosh, hope you are on the mend now. Thank you x

Thank you, It’s some time ago now, had 4 clear mammograms since.