Looking for advice about my mother

[Gilbycat]

Hi everyone. I'm new to this forum. What's bought me here is the need for some practical support and advice from people who have been there. My mum is 84 and was diagnosed with mixed dementia ( Vascular and most likely Alzheimers ) in January. I and my brother and sister long suspected she had it but it was only after the memory clinic appointment that it was confirmed. Unfortunately in the last few weeks mum has declined significantly. She is still living at home and she has carers twice a day, meals on wheels delivered, and district nurses going in for diabetic support. Mum has been in and out of hospital for the last month, primarily due to erratic blood sugars. But it is clear she is not coping at home. She can't now do the simplest tasks like making tea and preparing a simple meal. She also gets terribly lonely and is leaving home to seek company , not ideal at the moment.

I had a long conversation with an older peoples mental health nurse specialist last week, who is now saying that mum is not safe to live at home. She is also saying that mum now lacks capacity so it's too late for us to put Power of Attorney in place. The hospital are going to discharge mum initially to a care home for further assessment, after that who knows. Any care mum has would be funded by social services as she doesn't have sufficient funds to pay for her care.

What I'm asking for is some advice on the best option. Has any one here taken a parent home to live with them. My wife said in an ideal world we'd have mum at ours and she would give up work to look after her. Unfortunately we don't think this is viable financially, unless anyone can tell me otherwise. The other option is a care home, something mum has always asked me, when she was lucid, never to do to her. Or maybe for her to come home and have a live in carer. Has anyone done that and how is it funded.

Thanks in advance

Gary

 

[karaokePete]

Hello and welcome @Gilbycat.

I haven't experience of this but know from the forum history that there can be big issues with trying to deal with such a situation at home. From the same source I also know that people often settle well in a residential facility and there comes a time when needs can outweigh wants from an earliet stage.

The membership has vast collective experience so I'm sure you will get useful comments.

 

[karaokePete]

BTW, should you like to look through the AS Publications list and the page where a post code search can be done to check for support services in ones own area clicking the following links will take you there

https://www.alzheimers.org.uk/get-support/publications-factsheets-full-list

https://www.alzheimers.org.uk/find-support-near-you

You will see that there are Factsheets that will help with things like getting care needs assessments, deciding the level of care required and sorting out useful things like Wills, Power of Attorney etc., if any of that hasn't already been done. There is also a Dementia Guide in the list.

Now that you have found us I hope you will keep posting as the membership has vast collective knowledge and experience.

Best of luck to your mum and your family.

 

[Weasell]

Hi Gary,
It isn’t many people that post and I can answer the post in four words, but yours qualifies!
ACCEPT THE CARE HOME
When she has been accepted and settled in you will feel guilt.
Re post on how to deal with that at the time.
The vascular dementia in particular develops in steps. that’s the way it works. However she is at the moment , it will get worse.
Live in care can cost more than a care home, and if you summon up your ideal live in carer, e.g Mary Poppins on Valium, that is not what you will get!
wishing you well at a difficult time.

 

[canary]

Most people who look after someone with dementia when they reach middle stages have been doing it for a while and have sort of slid into the the role and adapted. If you take it on now you will be thrown into the deep end and it will be a huge learning curve. Take a look at some of the threads in this section and you will see what you will be letting yourself in for. Your mum will not be able to be left for even a minute (honestly, I am not exaggerating) and will take up every minute of you and your wifes waking time. How will you make sure that she doesnt walk out of the house trying to "go home"? How will you deal with incontinence (especially if, as is common, she wont let you do anything)? Supposing she is up all night? Your wife will not be able to continue working and will have to take on the majority of the burden. Although she would be able to claim Carers Allowance (assuming your mum has Attendance Allowance, which she should) it consists of the princely sum of £67 and 25p a week.

This is the stage at which most people cannot cope any longer and start looking at care homes. Live in care is eye-wateringly expensive and Social Services will not fund it. Social Services usually try and keep people in their own homes as long as they possibly can (and often, longer than the relatives think is a good idea), so if SS are suggesting a care home, then I really, really do think that is what is needed.

I know that your mum doesnt want to move into a care home - Ive never met anyone who actually did - but there comes a time when you have to stop enabling their wants and start implementing their needs. If it is any help, many people with dementia thrive and are happy in a care home. My mum was one of these. She had begged me to never "put her in one of those homes", but eventually there was no choice. She too was going walkabout in the wee small hours and could not even make herself a cup of tea, so I think she was at about your mums stage. Once she was settled she really thrived - she put on the weight she had lost, made friends and joined in all the activities. I would never have believed it, but she did. Others on here can tell a similar story.

Care homes can be very positive things.

 

[Jale]

Not quite the same but we had Mum come to stay with us twice since being diagnosed with dementia. The first time she was getting over skin cancer and she stayed with us for 8 weeks. Because she couldn't get upstairs (she had a stair lift at home) we moved a bed downstairs and I slept on the settee at night in case she got up and was confused or fell. Initially it was ok(ish) but as the time went on I found it harder to cope, it was like being on call 24/7. It wasn't Mum's fault but like canary said you cannot leave them alone. The second time was after a discharge from hospital with pneumonia, and we did the same again, this time for 3 months. Things changed big time. Mum's dementia was worst but she actually verbally turned on both myself and my husband - she said we did nothing for her, only her son cared about her(he lived with her but didn't visit once whilst she was with us) and various other things that really hurt us.
After another stay in hospital the social worker there said that Mum wasn't able to stay at home and we would not be able to cope with her needs, despite having carers going in 4 times a day. I didn't want her to go into a home,( I promised her once that it would never happen) and I would look after her, but at what cost that would have been I'm not sure.
Please, please please think very carefully before you commit to looking after someone with dementia, Mum has been in a nursing home nearly 2 years now and she is thriving (think that's the right word), she is eating, drinking, is safe, yes she has bad days and she still has a sharp tongue and can be aggressive, but the staff are really good with her.

As canary has said if they are saying that your Mum is going to be discharged to a care home (she may need a nursing home) for assessment, then believe me this should be listened to as they do prefer to keep people in their own homes if possible. Looking back I now accept that the right decision was made for Mum
Good luck with whatever you decide

 

[Hayley jane]

Hi @Gilbycat , I agree with @Weasell; accept the carehome. What everyone is saying above is right. It will only get worse. We have been trying to care for my 89 year old father and even with Carers 4 times a day and my family taking turns to go each day adding extra support we couldn’t manage. Dad moved to a carehome a week ago and we have all the feelings of guilt and sadness which we will have to deal with however the safeguarding issues start to increase and as canary said it stops being about their wants and you have to focus on their needs . This is so hard to do because of the emotions we feel , believe me I’ve turned myself inside out With them. If SS are suggesting a home then they must think it’s in her best interests. If you don’t take it now and a few weeks down the line you realise you can’t cope it will big a slog to get SS engaged again. it might seem like you have to make the decision to quickly but try and think of it as a period of respite , then take it from there . My dad is not settling at all and never wanted to go in a carehome but we are sticking with it as the alternative is really not an option because of the safeguarding Issues. I am saying to myself , at the very least he is safe, clean, warm and fed. He’s being cared for by a team who can support his needs much better than we can. Thinking of you , keep coming back here and posting etc.. it’s been invaluable to me . Take Care x

 

[Rosettastone57]

Hi everyone. I'm new to this forum. What's bought me here is the need for some practical support and advice from people who have been there. My mum is 84 and was diagnosed with mixed dementia ( Vascular and most likely Alzheimers ) in January. I and my brother and sister long suspected she had it but it was only after the memory clinic appointment that it was confirmed. Unfortunately in the last few weeks mum has declined significantly. She is still living at home and she has carers twice a day, meals on wheels delivered, and district nurses going in for diabetic support. Mum has been in and out of hospital for the last month, primarily due to erratic blood sugars. But it is clear she is not coping at home. She can't now do the simplest tasks like making tea and preparing a simple meal. She also gets terribly lonely and is leaving home to seek company , not ideal at the moment.

I had a long conversation with an older peoples mental health nurse specialist last week, who is now saying that mum is not safe to live at home. She is also saying that mum now lacks capacity so it's too late for us to put Power of Attorney in place. The hospital are going to discharge mum initially to a care home for further assessment, after that who knows. Any care mum has would be funded by social services as she doesn't have sufficient funds to pay for her care.

What I'm asking for is some advice on the best option. Has any one here taken a parent home to live with them. My wife said in an ideal world we'd have mum at ours and she would give up work to look after her. Unfortunately we don't think this is viable financially, unless anyone can tell me otherwise. The other option is a care home, something mum has always asked me, when she was lucid, never to do to her. Or maybe for her to come home and have a live in carer. Has anyone done that and how is it funded.

Thanks in advance

Gary

I can only agree with other posters. Accept the care home . There comes a point when the person with dementia's needs outweigh what they want to happen. You have reached that point . If you want a life for yourself and your wife, let professionals care for her.

 

[Louise7]

The hospital are going to discharge mum initially to a care home for further assessment, after that who knows.

Welcome to the forum @Gilbycat you'll find lots of friendly support and advice here. The assessment period is usually 4-6 weeks (it may be longer due to lockdown) and during that time there will be a thorough assessment conducted to establish exactly what your mum's care and health needs are. That will provide a much better picture of the level of support that she needs and it will only be towards the end of the assessment period that discussions will take place as to what happens next. These decisions will be made on a 'best interests' basis with input from social services and other health professionals, and also family input. If it's agreed that the care home best suits her needs (not her wants) then funding will be arranged by the local authority following completion of a financial assessment. It may be that your mum will also qualify for funded nursing care and that would be paid directly to the nursing home. Don't worry too much about the finances at the moment though as the important thing is that your mum is safe and will be well looked after. Keep posting as there are plenty here who have been in the same position and can offer advice.

 

[Gilbycat]

Thank you to everyone who's responded to my post. You've all given me a lot of sensible advice on the best way forward. I know it's not and is never going to be easy but your support has given me encouragement. Thank you

 

[lemonbalm]

Hello @Gilbycat . Most of us who have been through it feel dreadful about our parents having to go into a care home. My parents asked me to promise that I would never do it to them. I don't think it ever really feels right but we have to do what is best for them because we love them. The care home option sounds the only viable one and anything else you try will just be putting it off. You say your mum is lonely, so she may well be much happier surrounded by other people.