Domicillary Care Options

[shivvy]

I would like to find out what options are available for care of someone with advanced dementia in their own home. It doesn't matter whether it is provided by a health trust or privately, I would just be interested to know the kinds of support that can be provided in the home setting - other than basic health care.

My mum has dementia and we are looking after her at home with the support of her care package which is 2 days a week in a day centre and carers who call to the house 4 times per day for washing, dressing and meals.
Mum likes to be able to nip off to her bed a lot during the day when she is at home and because she can't always do that in the day centre (although they try to facilitate it when they can), she gets upset which is horrible for her. She knows the layout of her own home so can mooch about by herself, but she can't get herself to bed or to the loo by herself in the day centre which must be very scary and very frustrating. She is also less able to take part in the communal activities that they offer in the day centre now because crowds are tricky for her.
However when we are with her in the house she loves us reading to her, singing along to songs, dancing, holding hands, nonsense chitchat and going out for a drive or a walk - while still being able to slope off to bed when the notion takes her!
Although one of us (her children) is with her at some stage of the day, sadly we can't be there all the time so that is what I would like to know ie is there someone who provides that type of support/company/care to people in their own home?
I'd be grateful for any suggestions.

Many thanks.

PS - I know that a lot of people reading this might thing that it would be best for Mum to go into a full time care facility however she still knows her way around her own house where she has lived for nearly 60 years and we know that she would never want to leave it. We are aware that when she reaches the stage of not knowing where she is that she will probably need to move into a residential facility but we just want to do everything we can to keep her at home for as long as possible.
Sorry for rambling but it is a very difficult and emotional situation and I'm not sure I could cope with someone on here saying that we are doing the wrong thing by trying to keep her at home!
Thanks again.

[anneasquith]

Well. I think you know your mum better than anyone. And doing the best fort her at the moment.

[bednobs]

is her place big enough for a live in carer? If you are willing to pay, you can have anything you want.

[Buenchico]

Possibly relevant:
https://www.dementiauk.org/how-we-help/admiral-nursing/
and
https://www.alzheimers.org.uk/site/scripts/documents.php?categoryID=200349

[shivvy]

Thanks anneasquith.
Yes there is room for a carer in her house and willing to pay. But what kind of a carer would it be though? An OT or nurse or other?

[shivvy]

Oh an Admiral nurse sounds EXACTLY like what we are after Buenchico. Unfortunately however it doesn't look as if they operate in Northern Ireland where we are. But I will be making a phonecall to them first thing in the morning though. Thank you, thank you!

[woofgang]

How about Christies care, sounds very good.
http://www.christiescare.com

Speaking as a retired OT, I think you are absolutely RIGHT. If people can stay in their own homes with enough care, its much the best way. The sad bit is that it is very expensive indeed and this puts it out of reach for most people.

[carrot99]

My mum has late stage Alzheimer's and although she lives with me, she has carers 3 times a day for her personal care, they wash and change her etc as she is unable to leave the bed. She no longer moves and has a hospital bed with an air mattress which moves her about to stop her getting pressure sores. She does have one of those baby toys which is a soft animal with different bits to rustle, chew on, rotate, rattle etc and I put the radio or tv on for her. With Alzheimer's the brain gradually loses all ability to do anything and so she can do no more now than a three month old baby. She can no longer chew and so lives on food replacement milk shakes.

I have spoken to her carers and they provide a full range of services for their clients who can be of any age and with any disability. They provide 24 hours care for clients in their own home with carers rotating round the clock. So if you and your mum are happy with her current carers ask the company what they can do and how much it would cost her. If 24 hour care is the same price as a residential facility she could stay at home depending on the type of dementia.

You hear such terrible stories about residential care that I'm happy with my mum taking up my lounge until she eventually goes. She's 89 and has been virtually immobile for a year now but is physically quite fit as she's not on any medication, just her brain closing down. Although mum has to pay half of the cost of her carers with the council picking up the rest, all equipment is loaned free of charge. When she still showed an interest in her surroundings she had a specially built chair that held her upright which she was hoisted into for a few hours each day. Her pads are free, as are the various skin cleansers and skin protection creams she needs, even her special milkshakes are free on prescription.

Sorry I've had a bit of a ramble too but what I'm trying to say is that home care is possible depending on the type of dementia. As I believe that with some dementias the patients stay mobile which could be more of a problem. Anyway you are doing your best for your mum and that is what counts.

[shivvy]

Thanks so much woofgang.Not sure if Christies operate in NI either but I will be phoning them in the morning.
Dad died a couple of years ago but thankfully he left Mum in a fairly good situation financially, although I know it can run out very quickly.
As a family we think it is important that we spend the money on making sure that the last bit of time that she is aware of is as enjoyable as possible. Once she doesn't know where she is then it will be time to think of residential care.

[shivvy]

Oh thank you carrot99, and you didn't ramble at all. It's good to talk about it sometimes isn't it?
Mum doesn't know us any longer unfortunately but what she has retained is her physical mobility, her knowledge of the house as well as her belief that anyone who is in the house is either carer, friend or family. Her consultant has explained that she is very far advanced in her dementia and has said that if she was to move into residential care now then she would deteriorate rapidly and we would lose the little bit of her that we have left.
so we are trying our best to hold on to the wee bit of her that we know.
A bloody awful disease.

[bunkmoreland]

I hope you can get a positive result here shivvy. My mother had this evil disease too and the heartbreak is awful :-( To be able to keep "her" with you all just a bit longer in her own home,without wrecking your own health is priceless. x

[shivvy]

Thanks so much bunkmoreland.
I was a bit hesitant to put this question up on answerbank because sometimes the 'answers' on here can be a bit harsh/judgemental. But I'm so glad that I did.
I've got my fingers crossed for Admiral nurses in the morning. Even if I can't organise it for Mum I think my mission will be to do what is necessary to set it up in Northern Ireland so that others can get the benefit of it in the future.
I hope that any carers who are out there and reading this know that there are a lot of people who understand their struggle.

[Buenchico]

There are commercial agencies offering relevant services, such as this one:
http://www.bluebirdcare.co.uk/holywood,-bangor-newtownards/about-us
(If that's not the right part of NI, try the postcode finder - at the top right- to see if there's a office closer to you).

[bunkmoreland]

bless,shivvy x. You are one strong lady :-) I dealt with mummy's awful decline,but,i could not have the strength to keep involved in charity purposes. Always give of course.