Struggling to care

[Carolan1]

Hi
This is my first post. Wonder if anyone can offer some advice please. I'm struggling to supprt my 86 yr old mum who has lewy body dementia. Mum really wants to stay at home despite living alone. Her neurologist has also said that she is likely to do better at home as her familiar routines help her keep going. I live 45 minutes away haing finally found a bungalow which i had previously tried to convince mum to move to while she still had potenial to reestablish routines with me but she refused to move. I know spend 5 nights and 3 days with her trying to keep her engaged and active. Its wearing me out to the point where ive got pneumonia. The care agencies ive approached have all said they are person centred but appear to offer fixed services and time slots. Mums rreally settled since having someone around at night but slleeping nights shifts from agencies start at 10 finish at 7. Too late not to disturb her sleep a dnd too early to avoid having a personell change wjilst shs sleeping. Live in carer shifts seem to work for long minimum periods. How can i find care to allow me to continue and keep some familiarity but offer regular relif so i can get some days off 5o go to work and look after myself.

 

[ChocolateBrownie]

Hi Carolan

Sorry, I don’t have any answers for you - but was interested in your comment about the live in carer minimum periods - as I am currently exploring this option.

What is the minimum period quoted? And is this through an agency?

I have wondered about advertising/employing directly - as agencies are saying they will not let a member of their staff do a 2-person transfer with someone they do not employ (ie me).

 

[Grannie G]

Hello @Carolan1

I do hope people on Talking Point will be able to help you. It is obvious from your post the arrangements you have for your mother cannot continue indefinitely and it sounds your health is already being affected.

If the level of care available will not meet your mother`s needs then there has to be a compromise.

The neurologist might say your mother is likely to do better in her own home but the neurologist is not able to provide the necessary care or give you guidance to enable it.

It might help if you asked for an assessment of yours and your mother`s need from Social Services. However these things take time and you need help now.

Please contact the Helpline. They will have up to date information about what is currently available for you in your area.

National Dementia Helpline

0300 222 11 22

Monday to Wednesday 9am – 8pm

Thursday and Friday 9am – 5pm

Saturday and Sunday 10am – 4pm

It will be open today from 10am - 4pm

 

[canary]

Doctors and Social Services always trot out the line that people are better off in their own home, but really I wonder whether it is actually true when it comes to dementia - especially if they are living alone.

My mum had Alzheimers and lived alone in her own home. She tried to make me promise that i would never put her in a home and wanted me to give up my job, leave my husband (who also has cognitive decline) and go and look after her, but it just couldnt happen. Im afraid that i never found a way to enable her to remain at home and when the inevitable crisis came she had to move into a care home. I was very apprehensive (although also relieved) and wondered how she would cope and was surprised that she not only coped, but thrived. It took her quite a few weeks to settle, but once she did she was happy (or, at least, content). She joined in the activities, made friends, found the lack of stress and set routine of the home a comfort and was helped by there always being someone around day and night to reassure her. It was the best thing that happened to her.

I am just showing you the other side of the coin here and saying, dont discount the idea of a care home if you cannot meet her needs in her own home - they are not all bad.

 

[Beate]

People are better off in their own home IF they have someone living with them who cares for them round the clock with a good care package in place.

If they live on their own, they decidedly aren't, and professionals really should take this into consideration before they make ill-advised recommendations.

 

[Bod]

There comes a time, when you have to do what's best for the person, which may not be what they want.
You cannot carry on as you are, what is going to happen when you collapse?
It is better to make a controlled move now rather than an emergency one later.
You now find a suitable Care home, then present it as a "this is what's happening for the best".
Hard, been there.

Bod

 

[Carolan1]

Hi Carolan

Sorry, I don’t have any answers for you - but was interested in your comment about the live in carer minimum periods - as I am currently exploring this option.

What is the minimum period quoted? And is this through an agency?

I have wondered about advertising/employing directly - as agencies are saying they will not let a member of their staff do a 2-person transfer with someone they do not employ (ie me).

 

[Carolan1]

Thanks for your reply.the 3 agencies i approach provide 2 round the clock carers who work a week at a time with a 2 hour break daily. There was no scope for the family to supplement with care to assess mums abilities and relate to her . Having been dissapointed with 2 other agencies who weren't able to customise anything, were late, forgot about their appointment and said they would help in 3 days time which turned into 3 weeks as well as receiving an alarmingly poor review just as i was about to engage them through necessity. I felt placed an ad for a personal assistant and had lots of replies from graduates with no experience. I'd love to hear from anyone whose achieved a successful home care scenario. 2 days and 3 nights i could handle with the right support.

 

[ChocolateBrownie]

People are better off in their own home IF they have someone living with them who cares for them round the clock with a good care package in place.

If they live on their own, they decidedly aren't, and professionals really should take this into consideration before they make ill-advised recommendations.

 

[ChocolateBrownie]

I have set up a separate thread called ‘Live-in care - help and advice’ to explore this option in more detail as I couldn’t find a thread on this subject.

Maybe a moderator would know how to add a link - or you can search.

 

[Izzy]

I have set up a separate thread called ‘Live-in care - help and advice’ to explore this option in more detail as I couldn’t find a thread on this subject.

Maybe a moderator would know how to add a link - or you can search.

Here's the link to your thread -

https://forum.alzheimers.org.uk/threads/live-in-care-help-and-advice.113465/

 

[Carolan1]

I directly employ companion carers for my husband who has early onset Alzheimer’s. I have found the ‘graduates’ without care qualifications to be much the best, particularly older people with life experience. Qualified carers have been less successful because their approach is too clinical.

I have struggled to find overnight care.

For my MIL I found moving to a Care home was the only and best solution. They are set up for people her age and can rapidly become a new home in every sense. She lived in first a Care and then a nursing home for about four and a half years from around age 86.

 

[Carolan1]

Thank you for your help. I should have said recently qualified graduates. Do you mind sharing how you advertise? Thank you

 

[Carolan1]

That's really helpful. Thank you.

 

[Sirena]

If you cannot find the right care at home I wouldn't discount a care home. My mother always said she wanted to stay in her own home but there came a point where that was not possible for various reasons, and I moved her to a care home nearly a year ago. She is very happy there, and better cared for than she would have been if she'd stayed at home.

 

[Susan11]

If you cannot find the right care at home I wouldn't discount a care home. My mother always said she wanted to stay in her own home but there came a point where that was not possible for various reasons, and I moved her to a care home nearly a year ago. She is very happy there, and better cared for than she would have been if she'd stayed at home.

I agree. My Mum is now in a CH and she is well cared for and has company and has made new friends. The care workers are amazing , always bright and cheerful and always treat her with respect.

 

[MothersCarer]

People are better off in their own home IF they have someone living with them who cares for them round the clock with a good care package in place.

If they live on their own, they decidedly aren't, and professionals really should take this into consideration before they make ill-advised recommendations.

There is so much truth in your post Beate. I'm afraid I now think that a lot of "you will be better in your own home" is to do with the financing of care. Our PWD will want to stay - change is so anxiety making for them but I really believe the isolation many single people suffer - and many carers in couples - is quite cruel and does not improve their quality of life.

I don't know the answer but we should really be expecting the powers that be to put one in place. It is not going to get any easier as the generation of carers ages.

 

[Carolan1]

I agree. My Mum is now in a CH and she is well cared for and has company and has made new friends. The care workers are amazing , always bright and cheerful and always treat her with respect.

 

[Carolan1]

Thank you for your reply. How did you go about finding the right home? Did you look for a home that you knew could provide nursing as well as residential care?

 

[May30]

I am experiencing a crisis now with my Dad and it has been much more complicated finding him a place in a home and he's ended up spending a month in hospital. I tried to keep him at home for as long as possible. Looking back now it would have been better if I'd faced up to it sooner. I've been using the Alzheimer's Society factsheets about how to find a care home. I've also used www.carehomeadvisor.com to help me look for good homes in the area. It depends if you're looking for residential or nursing. I would also recommend looking at as many as possible to get an idea of the different levels of quality. Our choice has been limited as it was an emergency placement.