hi. I’m new to this forum. I’ve spent half the night listing all the things I’m not coping with. I don’t know who to talk to or which way to turn. My mum was diagnosed with Alzheimer’s a few years ago and moved to live near me in August. Until 3 weeks ago she was able to go to the shop and the park on her own but then she got a cold and although she is clearly better she is convinced she has flu and won’t go out and often won’t even get out of bed. At least she isn’t wandering as that has been a problem - she went for a stroll and ended up 5 miles away in the city centre! She really only wants me and won’t have anyone else help. She has always been incredibly unsociable and would hate any groups or activities. My husband helps a little but he is very ill having had cancer, 7 years of dialysis and has just had a transplant so is immunosuppressive and has to be very careful. He lost his job so I am the only wage earner. My main source of support was my brother-in-law but he was killed in a cycling accident a few weeks ago. We don’t have much money and have 4 kids, 2 at uni, so I’m very worried about what sort of care we can afford. My mum does have Carer’s allowance. I’m grieving for my brother-in - law, my lovely mum who just isn’t here any more, and the husband who is a shell of his former self. I’m terrified about money as I don’t earn much, and I’m solely responsible for my mum and have literally no clue what I’m doing. Everything makes me cry - even just typing this
Ceasing to cope
- Thread starter Patricia1966
- Start date
Hello Patricia
Can believe your predicament, you make mineseen so much less. My husband has end of life Parkinson's, Lewy bodies dementia and taken out of care home 3 weeks ago to hospital because awoke with nappy full of blood. Was told on Friday they are returning him to care home for palliative care as now has bladder cancer. I am 82 yrs of age, our only son aged82 hung himself last yr because he couldn't bear to see his beloved dad so I'll and thought he had Parkinson's himself. Have been a self funder for six months but money gone and so continuing care has taken up the bill. We do own our bungalow and guess that will eventually be taken but after I am gone. Meantime I have taken going to our local Baptist church these past 6 weeks and this is helping me to cope. My prayers and thoughts are with you, be strong. Goldenlocks
Can believe your predicament, you make mineseen so much less. My husband has end of life Parkinson's, Lewy bodies dementia and taken out of care home 3 weeks ago to hospital because awoke with nappy full of blood. Was told on Friday they are returning him to care home for palliative care as now has bladder cancer. I am 82 yrs of age, our only son aged82 hung himself last yr because he couldn't bear to see his beloved dad so I'll and thought he had Parkinson's himself. Have been a self funder for six months but money gone and so continuing care has taken up the bill. We do own our bungalow and guess that will eventually be taken but after I am gone. Meantime I have taken going to our local Baptist church these past 6 weeks and this is helping me to cope. My prayers and thoughts are with you, be strong. Goldenlocks
Goldenlocks, I’m so very sorry about your son. Honestly I cannot believe anything could be harder than that. I hope you find some solace with your church. Thank you for your reply
Oh ladies, what terrible times for you both.
I’m so sorry I cannot offer solution, I so wish I could.
Please know I’m thinking of you and send the kindest wishes I can. XX
I’m so sorry I cannot offer solution, I so wish I could.
Please know I’m thinking of you and send the kindest wishes I can. XX
First of all, welcome to you both. And I'm so very sorry for the circumstances you both have found yourselves in, both @Patricia1966 and @Goldenlocks . You both have so much to grieve for, including the dementia which is stealing your mum, patricia1966 and your husband, Goldenlocks, inch by inch.
I wonder if both of you would not benefit by having a chat with the very experienced team on the Dementia Helpine? They have a wealth of knowledge and contacts at their fingertips. They are open today from 10 until 4, and can be contacted on:
0300 222 11 22
I'm sure you will also find the members here on Talking point very supportive.
I wonder if both of you would not benefit by having a chat with the very experienced team on the Dementia Helpine? They have a wealth of knowledge and contacts at their fingertips. They are open today from 10 until 4, and can be contacted on:
0300 222 11 22
I'm sure you will also find the members here on Talking point very supportive.
@Goldenlocks so sorry to read your story. How very sad you must be feeling. Again, you will get support from the helpline as LadyA suggests & from here on TP. Best wishes X
I'm new to the forum too and just wanted to say hi... and how much I relate to the parts of your post, paraphrased above.
Kind thoughts
E.
The financial responsibility for care is not yours Patricia, it is your Mother’s. Have you had a care assessment and a financial assessment for her. The care one will highlight what care she needs and the financial one will show what she can afford to pay for, if indeed she needs to pay.
Very difficult if she won’t accept care, my husband was the same but as there was only the two of us to consider I managed, you have other commitments. Could you try telling Mum that you need some help and maybe she might accept you needing help and not her. We sometimes have to be very crafty when it comes to dementia. Take care and make sure you look after yourself. If you get Carers breakdown then your Mum will have no choice other than to accept outside help.
My troubles seem very poor whe reading your circumstances I just want to say how sorry I am for all your going through and get as much advise as you can as others have said, you can’t do it all by yourself. Thinking of you
take care.hello @Patricia1966
a warm welcome to TP from me too
my condolences on the death of your brother-in-law; such a shock and so much sadness for your family
it's lovely of your husband to want to help with your mum, but right now he needs to stay away - and actually maybe you need to do that as much as possible too
has your mum been checked for a UTI or chest infection - any infection can cause havoc to the system of a person with dementia (PWD) increasing confusion and anxiety - my dad now takes some time to recover from a cold as it makes him so tired, so it may well be that your mum feels that way
and sadly many a parent with dementia seems to focus on one child to be their desired carer not wanting to accept a professional carer, which puts a massive strain on that person ie you - it is time to override your mum's wishes and concentrate on providing for her needs - not being rotten, but if she is in bed, as you say, she's not wandering and she can hardly block any home carer from entering the house - think of having a cleaner and ordering groceries etc online to be delivered; anything to take some of the pressure from YOU
as jaymor says, contact your Local Authority Adult Services for an urgent assessment of her care needs - here you need to be brutal, tell them you HAVE to work and your key concern is looking after your husband so you are unable to provide the care your mum needs, indeed you fear you are heading for carer breakdown - let them know she is currently house and bedbound and you are worried - ask for home care visits, a sitter/befriender and, I suggest, a spell of respite because YOU NEED a break from caring and at the moment your mum needs to be monitored 24/7 - tell them you feel your mum is 'vulnerable' and 'at risk' (mention the wandering, as if she does get out of bed she may well do this again) and you believe the LA has the 'duty of care - those buzz words should get attention
as for finances - YOU should not be funding your mum's care - for care at home her house, if she owns it, is not taken into account - if she has savings over £23250 she will have to self fund her care and I'd suggest you get carers organised asap, still going ahead with contacting the LA to flag your mum up as vulnerable and not letting them know her financial situation until after the care assessment has been done - if her savings are below that figure, the LA will at least part fund her care and will broker a care agency to provide whatever care package they suggest is put in place
you say your mum is receiving Attendance Allowance, that and her diagnosis may well make her eligible for a disregard of Council Tax so contact her council about this - have a look at their online info
you (or maybe your husband) could look into carer's allowance - for you this will depend on how much you earn, but you say your husband is not working
https://www.gov.uk/carers-allowance
I hope you have Powers of Attorney in place so that you can help manage your mum's affairs - if not get these asap as they will give you legal authority to support her
sorry to write an essay
keep posting - we can't make your situation go away, but we can help out with suggestions and sympathy
a warm welcome to TP from me too
my condolences on the death of your brother-in-law; such a shock and so much sadness for your family
it's lovely of your husband to want to help with your mum, but right now he needs to stay away - and actually maybe you need to do that as much as possible too
has your mum been checked for a UTI or chest infection - any infection can cause havoc to the system of a person with dementia (PWD) increasing confusion and anxiety - my dad now takes some time to recover from a cold as it makes him so tired, so it may well be that your mum feels that way
and sadly many a parent with dementia seems to focus on one child to be their desired carer not wanting to accept a professional carer, which puts a massive strain on that person ie you - it is time to override your mum's wishes and concentrate on providing for her needs - not being rotten, but if she is in bed, as you say, she's not wandering and she can hardly block any home carer from entering the house - think of having a cleaner and ordering groceries etc online to be delivered; anything to take some of the pressure from YOU
as jaymor says, contact your Local Authority Adult Services for an urgent assessment of her care needs - here you need to be brutal, tell them you HAVE to work and your key concern is looking after your husband so you are unable to provide the care your mum needs, indeed you fear you are heading for carer breakdown - let them know she is currently house and bedbound and you are worried - ask for home care visits, a sitter/befriender and, I suggest, a spell of respite because YOU NEED a break from caring and at the moment your mum needs to be monitored 24/7 - tell them you feel your mum is 'vulnerable' and 'at risk' (mention the wandering, as if she does get out of bed she may well do this again) and you believe the LA has the 'duty of care - those buzz words should get attention
as for finances - YOU should not be funding your mum's care - for care at home her house, if she owns it, is not taken into account - if she has savings over £23250 she will have to self fund her care and I'd suggest you get carers organised asap, still going ahead with contacting the LA to flag your mum up as vulnerable and not letting them know her financial situation until after the care assessment has been done - if her savings are below that figure, the LA will at least part fund her care and will broker a care agency to provide whatever care package they suggest is put in place
you say your mum is receiving Attendance Allowance, that and her diagnosis may well make her eligible for a disregard of Council Tax so contact her council about this - have a look at their online info
you (or maybe your husband) could look into carer's allowance - for you this will depend on how much you earn, but you say your husband is not working
https://www.gov.uk/carers-allowance
I hope you have Powers of Attorney in place so that you can help manage your mum's affairs - if not get these asap as they will give you legal authority to support her
sorry to write an essay
keep posting - we can't make your situation go away, but we can help out with suggestions and sympathy
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hello @Goldenlocks
and welcome to TP from me too
what a heart-breaking situation you find yourself in - my condolences on the loss of your son; such a sadness for you to carry
if I understand correctly, your husband is receiving CHC funding, which should therefore be covering all his care fees, which hopefully means you don't need to be concerned about paying fees - in any case, if your husband's savings (only his, and half any joint savings) have fallen below the £23250 level, the LA would at least part fund his care - YOUR savings are not taken into account and you are not responsible for paying his care fees
your house is the marital home and NOT taken into account an any financial assessment of your husband's care needs - please don't let anyone make you think it needs to be sold or a charge put on it - it is your home and as your husband's spouse you have the right to live in it without worrying that it will be taken from you - whatever arrangements you and your husband have made in the event of your deaths will be followed
keep posting here - it helps to share your experiences with folk who do understand
and welcome to TP from me too
what a heart-breaking situation you find yourself in - my condolences on the loss of your son; such a sadness for you to carry
if I understand correctly, your husband is receiving CHC funding, which should therefore be covering all his care fees, which hopefully means you don't need to be concerned about paying fees - in any case, if your husband's savings (only his, and half any joint savings) have fallen below the £23250 level, the LA would at least part fund his care - YOUR savings are not taken into account and you are not responsible for paying his care fees
your house is the marital home and NOT taken into account an any financial assessment of your husband's care needs - please don't let anyone make you think it needs to be sold or a charge put on it - it is your home and as your husband's spouse you have the right to live in it without worrying that it will be taken from you - whatever arrangements you and your husband have made in the event of your deaths will be followed
keep posting here - it helps to share your experiences with folk who do understand
Thank you for all your kind comments and support. I have tried the helpline but they are busy so will try again later
Thanks @Shedrech we do have LPA and although Mum doesn’t own her home she has savings but I will definitely follow up on your advice. My brother is supposed to help with this sort of thing but since she moved here he has basically ducked out except to veto everything we try and put in place. Ostensibly he is supposed to be keeping an eye on my Dad, who has Parkinson’s, but he seems to busy to do that very often so I’m trying to distance Care for him too. Apparently my brother won’t be able to come and see Mum until late February as he has too much on. Just as well I have so much free time!
Thank you for your reply. Regarding continuing care I received a letter only last week in which they said they will review my husbands condition on 27th December? Meantime I am still receiving bills from care home for December £4,200. Phoned cc they said don't pay but are arguing with home as fee now gone up. Cc want to move him and I don't have transport.. This conversation took place 3 weeks ago before my husband was taken to hospital but now returning tomorrow. I didn't place him there I have been his carer for 6 years with no help. Gp sent 3 people to access our needs hubby in bed listening to voices got out and fell I. Picked him up was told no no I said I am not leaving him there they said ring for ambulance, I replied this happens 10/12 times a day. With that he was whisked away almost immediately and I was told you are too old and frail to carry on must think about yourself. Well after 61 years of tremendously happy marriage I don't want to carry on without him. For the past six months have visited on average 5 hours a day just to be by his side. Now after change of pill issued by consultant being second one not agreeing with him he appears in a coma but could go on for months. But easier Hal hours walk to care home than half hour walk and 2 changes of bus to visit hospital. Thank you for reading this episitle, hat phone as have hearing impediment.
hi again @Goldenlocks
that's quite a lot to try to take on board
please consider calling the AS Helpline so that you can actually talk to one of the very knowledgeable folk here - they have a lot of useful contacts and will be able to help you
0300 222 11 22
Helpline opening hours:
Monday to Wednesday 9am – 8pm
Thursday and Friday 9am – 5pm
Saturday and Sunday 10am – 4pm
If you have speech or hearing difficulties and have a textphone or an adapted computer, you can use Text Relay to call our Helpline on 18001 0300 222 1122.
that's quite a lot to try to take on board
please consider calling the AS Helpline so that you can actually talk to one of the very knowledgeable folk here - they have a lot of useful contacts and will be able to help you
0300 222 11 22
Helpline opening hours:
Monday to Wednesday 9am – 8pm
Thursday and Friday 9am – 5pm
Saturday and Sunday 10am – 4pm
If you have speech or hearing difficulties and have a textphone or an adapted computer, you can use Text Relay to call our Helpline on 18001 0300 222 1122.
