Difficulty in Respite - now looking at care at home or care home for mum

Nickname PJ

New member
Jul 11, 2019
7
0
Hello there,

We have just started our 87 year old mum in respite, lovely place, enjoy their approach, have no issues at all if it works out for mum to settle in there on a permanent basis, I think we would be overjoyed. Mum has some savings and will have to sell her small property too - not the issue, however getting social to take some responsibility for this respite did have it's challenges which have been settled now. In 4 weeks we need to decide what next and in this first week we have seen that mum has been confused about what is happening, unsure what to do, getting disorientated, wanting to come out with us when we leave. All part of getting used to change and difficult for us as a family as we do want what is in the best interest of mum yet struggle with how we see her coping or struggling. At home she was starting to be more unsafe, vulnerable, confused etc. so we need more care than what we can provide as a family. Do you have any examples of pros, cons, positives or negatives about home care, what this could look like and if this is the best way forward rather than continue to stay with settling her in residential care home that is suitable for those with dementia.
 

Louise7

Volunteer Host
Mar 25, 2016
4,693
0
Welcome to the forum. Your Mum will need time to settle in the home, to get used to the change in routine and the staff, and it's still early days. Have you asked the staff about how she is when family are not there? Does she seem OK and is she joining in with things? Sometimes it's best to cut down on family visits when someone first goes into a home so that they start to think of it as their home and get used to others caring for them. Maybe think about reducing your visits for a while to see if that helps your Mum to settle better?
 

Rosettastone57

Registered User
Oct 27, 2016
1,839
0
Hello there,

We have just started our 87 year old mum in respite, lovely place, enjoy their approach, have no issues at all if it works out for mum to settle in there on a permanent basis, I think we would be overjoyed. Mum has some savings and will have to sell her small property too - not the issue, however getting social to take some responsibility for this respite did have it's challenges which have been settled now. In 4 weeks we need to decide what next and in this first week we have seen that mum has been confused about what is happening, unsure what to do, getting disorientated, wanting to come out with us when we leave. All part of getting used to change and difficult for us as a family as we do want what is in the best interest of mum yet struggle with how we see her coping or struggling. At home she was starting to be more unsafe, vulnerable, confused etc. so we need more care than what we can provide as a family. Do you have any examples of pros, cons, positives or negatives about home care, what this could look like and if this is the best way forward rather than continue to stay with settling her in residential care home that is suitable for those with dementia.

The sort of behaviour that you are describing is not unusual for a person with dementia who goes into care. My mother-in-law went into care last year after a spell in hospital . She took a long time to settle and was forever telling us she was being treated badly by the carers. We visited only once a week then only for short periods. She often complained about nothing to do, but the home had a Facebook page and there she was in a photo smiling taking part in the activities.

She had been at home on her own with carers three times a day but even with carers, she simply couldn't be left alone. She was anxious overnight with police being called by the care link because she would call them after hallucinating. There wasn't a choice in the end, she needed 24/7 supervision from a whole team in a care home
 

canary

Registered User
Feb 25, 2014
25,018
0
South coast
My mum refused point blank to have carers in her house. I never did persuade her to accept them.
Meanwhile she wasnt washing, changing her clothes, shopping, cooking, doing housework, or anything. She started getting into arguments with the neighbours over the bins and the woman across the road contacted the police because mum was harassing her. She was accusing me of stealing from her and mistreating her. Eventually she started walking out of her home during the night dressed only in night wear or an unfastened dressing gown and banging on the neighbours doors.Eventually she ended up in hospital with a TIA and was found to be severely dehydrated and malnourished.
I was shocked at how quickly things had spiralled out of control - it was only a few months between me realising that she wasnt really coping and her ending up in A&E. She went from hospital to her care home. It took about 6 weeks for her to settle, but once she had she thrived there - she made friends and was content. It was the best decision I made for her
 

Sirena

Registered User
Feb 27, 2018
2,324
0
My mother had (self funded) care at home for 18 months. She stared with 4 hours a day, and ended with 6 hours. The carers were great and she became 'friends' with her two favourites. But she was still on her own for 18 hours a day, and she started wandering and was not safe on her own at all. So there came a point where she needed supervision 24/7, and full time care at home is far too expensive - her funds would have run out very quickly. So she moved to a care home 15 months ago. She was of course very disorientated for the first few weeks, but once she got used to the new environment and routine she settled in really well and she loves it there. It gives her more choice of company and more activities and stimulation than she would have had at home. If you find a good care home it can be the best option.
 

Jaded'n'faded

Registered User
Jan 23, 2019
5,259
0
High Peak
Now that your mum can't decide for herself what help/care she needs, you have to do that for her. At this stage it's about what she needs, keeping her safe, etc, rather than what she might have said she she wanted many moons ago. Things have changed and sadly, she isn't going to get any better than she is today.

You want the best for your mum and a care home would provide that - 24 hour monitoring, always someone to help or calm her anxiety, make sure she gets food and meds. And she may not think she wants other people around but she will probably enjoy the company.

People do usually take a while to settle but were often unsettled in their own homes before the move.

It will also be good for you as a family, to know that she is safe and to be able to visit her without the anxiety that caring often brings.

Good luck and do not feel guilty! You are doing the best for your mum!
 

Jessbow

Registered User
Mar 1, 2013
5,680
0
Midlands
I felt exactly the same as you when my mother first went into care- then I reminded myself exactly WHY she had required the respite in the first place
 

Nickname PJ

New member
Jul 11, 2019
7
0
Welcome to the forum. Your Mum will need time to settle in the home, to get used to the change in routine and the staff, and it's still early days. Have you asked the staff about how she is when family are not there? Does she seem OK and is she joining in with things? Sometimes it's best to cut down on family visits when someone first goes into a home so that they start to think of it as their home and get used to others caring for them. Maybe think about reducing your visits for a while to see if that helps your Mum to settle better?
Hi Louise7, thank you so much for your reassuring words and suggestions. Yes, you are right in that mum does need to get used to the change in routine and I have been taking on board the advice of those who do this every day - hence getting in touch with people like you who have already gone through this. Thank you very much for taking the time to reply and I will take on board your suggestions. Best wishes PJ
 

Nickname PJ

New member
Jul 11, 2019
7
0
The sort of behaviour that you are describing is not unusual for a person with dementia who goes into care. My mother-in-law went into care last year after a spell in hospital . She took a long time to settle and was forever telling us she was being treated badly by the carers. We visited only once a week then only for short periods. She often complained about nothing to do, but the home had a Facebook page and there she was in a photo smiling taking part in the activities.

She had been at home on her own with carers three times a day but even with carers, she simply couldn't be left alone. She was anxious overnight with police being called by the care link because she would call them after hallucinating. There wasn't a choice in the end, she needed 24/7 supervision from a whole team in a care home
Hi Rosettastone57, thank you very much for sharing your experiences of your mother-in-law going into care last year. It is reassuring to know that people have had similar experiences and it will take time to settle in different routines. Our situation is similar in that we don't think mum can be left on her own now as her unpredictable behaviour is causing concerns for us and her neighbours as well as mum expressing she was becoming more frightened in the evenings, hence the choices are limited for care at home. Thank you so much PJ
 

Nickname PJ

New member
Jul 11, 2019
7
0
My mum refused point blank to have carers in her house. I never did persuade her to accept them.
Meanwhile she wasnt washing, changing her clothes, shopping, cooking, doing housework, or anything. She started getting into arguments with the neighbours over the bins and the woman across the road contacted the police because mum was harassing her. She was accusing me of stealing from her and mistreating her. Eventually she started walking out of her home during the night dressed only in night wear or an unfastened dressing gown and banging on the neighbours doors.Eventually she ended up in hospital with a TIA and was found to be severely dehydrated and malnourished.
I was shocked at how quickly things had spiralled out of control - it was only a few months between me realising that she wasnt really coping and her ending up in A&E. She went from hospital to her care home. It took about 6 weeks for her to settle, but once she had she thrived there - she made friends and was content. It was the best decision I made for her
Hi Canary, thank you so much for taking the time to reply to my question and it seems that you are having a positive experience of the care home now which is great and what our family are hoping for as the options of being at home look limited. The LA suggested a 6 week period to get a proper assessment of if mum is settling in. Week two is far better than week one which is reassuring so thank you for your response, it helps. PJ
 

Nickname PJ

New member
Jul 11, 2019
7
0
My mother had (self funded) care at home for 18 months. She stared with 4 hours a day, and ended with 6 hours. The carers were great and she became 'friends' with her two favourites. But she was still on her own for 18 hours a day, and she started wandering and was not safe on her own at all. So there came a point where she needed supervision 24/7, and full time care at home is far too expensive - her funds would have run out very quickly. So she moved to a care home 15 months ago. She was of course very disorientated for the first few weeks, but once she got used to the new environment and routine she settled in really well and she loves it there. It gives her more choice of company and more activities and stimulation than she would have had at home. If you find a good care home it can be the best option.
Hi Sirena, thank you so much for replying to my query about care home or home care. Like you, we feel that to keep mum safe in her own home would demand 24 hour supervision and whilst we take on some of that between us, it would need someone overnight now as there have been times when she has gone out in her nighty or rang me at 3a.m. unsure if it is morning, evening so the worry about what could happen is coming from all sorts of behaviours she has been presenting with recently. My mum is still happy to engage in various activities and try things out and there have been positive examples in the first two weeks. So thank you, I feel we have found a good care home. It pulls on the heart strings when we hear her saying, 'I'm ready to go home now' and we had this whilst she was in her own home too so it is all part of the dementia. Thanks PJ
 

Nickname PJ

New member
Jul 11, 2019
7
0
Now that your mum can't decide for herself what help/care she needs, you have to do that for her. At this stage it's about what she needs, keeping her safe, etc, rather than what she might have said she she wanted many moons ago. Things have changed and sadly, she isn't going to get any better than she is today.

You want the best for your mum and a care home would provide that - 24 hour monitoring, always someone to help or calm her anxiety, make sure she gets food and meds. And she may not think she wants other people around but she will probably enjoy the company.

People do usually take a while to settle but were often unsettled in their own homes before the move.

It will also be good for you as a family, to know that she is safe and to be able to visit her without the anxiety that caring often brings.

Good luck and do not feel guilty! You are doing the best for your mum!
Hi Jaded'n'faded, thank you very much for your considered response to my dilemma. You are absolutely right in that mum was getting anxious and unsettled in her own home before this, ringing in the early hours not knowing what time of day it was, going out in her nighty, not sure how to do regular things and in what order. We know there will be ups and downs wherever she is living and for me it is wanting to know that we have tried all options and keep her safety and wellbeing at the centre of those decisions - mum would never opt for a care home, yet she gave us that responsibility when we went through the poa 5 years ago - just felt tough last week and this week is more settled which is good for us. We know she will enjoy the company and she was asking not to be on her own over the last few weeks and you are right, she isn't going to get any better - thank you for your reassuring words. PJ
 

Nickname PJ

New member
Jul 11, 2019
7
0
I felt exactly the same as you when my mother first went into care- then I reminded myself exactly WHY she had required the respite in the first place
Hi Jessbow, thank you for those words of wisdom - it is always helpful to remind ourselves of why we are doing it rather than picking the feelings of guilt, uncertainty, doubt. Thank YOU PJ
 

Sirena

Registered User
Feb 27, 2018
2,324
0
I'm so glad to hear you feel you have found a good care home for your mum. It is of course a relief to know she is safe - if she is content too, that is a real bonus. Hopefully her requests to 'go home' will diminish as she becomes settled in her new environment.