I am struggling mentally with caring

[mejulie123]

Hi all. I'm Julie and i care for my 92 year old Mum who has Alzheimers paired with vascular dementia. Please bear with me as this is a long post. Iver the last 5 years my disabled son has been hospialised in intensive care twice, my partner suffered with intense back and leg pain and has had two operations to fix this. He still struggles now. My sister was diagnosed with Leukaemia a month ago, and i am struggling to cope. I had to sell my home, to come and live with mum, snd also change from full to part time work. My partner decided he would move in with his dad so the responsibility for mums care is all mine. There wasn't a huge amount of equity in my house as i still had an £88k mortgage. My elder sister comes most Saturdays so i get a break, but Mum can no longer be left alone. Her condition has worsened and she now needs help bathing and needs all her cooking and cleaning doing for her. I don't want her to go in a care home as she is insistent she will nog leavd her home, but i can no longer manage myself. I will have to give up work if Mum stays at home, as mum is self funding, which would cost more than i earn and it woukd not be worth me going to work.
I am terrified about where i will live. Will i have to move out? I know i can get carers allowance if i give up work but that is so little.
I cry myself to sleep each night and whdn i wake up i dread the day ahead. I am feeling so very low. My head is so full i am waiting for it to burst.

 

[karaokePete]

Hello @mejulie123, I am not surprised that you are struggling as there is so much happening there.

I wonder if a chat with your GP would help you through this tough time.

As to the care arrangements, there does come a time when needs outweigh wants so a full assessment of needs and finances may be required. There is a fact sheet about this that can be reached with this link

https://www.alzheimers.org.uk/media/8211

Otherwise, I think it may help you to talk things through with the experts on the help line, details as follows

National Dementia Helpline
0300 222 11 22
Our helpline advisers are here for you.
Helpline opening hours:
Monday to Wednesday 9am – 8pm
Thursday and Friday 9am – 5pm
Saturday and Sunday 10am – 4pm

 

[Daffy123]

I suggest you also contact the CAB. Does you Mum own her own home? If you gave up your own home to live with you Mum you could get a discretionary disregard. Also if you are over 60 the home would be disregarded too.
I also think a chat to the GP and perhaps a local carers group might be a good thing.

 

[marionq]

I suggest you also contact the CAB. Does you Mum own her own home? If you gave up your own home to live with you Mum you could get a discretionary disregard. Also if you are over 60 the home would be disregarded too.
I also think a chat to the GP and perhaps a local carers group might be a good thing.

You have a disabled son living with you which also can trigger a disregard. Get advice from CAB or AgeUK.

 

[mejulie123]

Thank you all so much for your help and replies. I have a meeting with a care agency in the morning to discuss somebody coming in for a couple of hours a day when i work. Just 2 hours per day x3 days pw is almost £600 per month. A social worker is also calling tomorrow to asses finances. Mum does have savings above the threshold so it will be self funding care at home to help me.
My disabled son is 32 and he lives with his dad but i see him every week. I have to travel to visit him which means leaving Mum alone for a full afternoon. I am 57, snd i think my mums home would be taken if she went into care. I am terrified for her and myself. It all seems so brutal and i don't have it in me to fight anymore. I will see my gp who doesn't know me as i have never been, since i moved in a year ago.
Thank you all again. Once i feel less exhausted i will try to move forward x

 

[Daffy123]

If you gave up your own home to live with you Mum you could get a discretionary disregard. Also if you are over 60 the home would be disregarded too..

Do please take note of this as you sound exhausted. If you gave up your own home you can probably get a disregard. Contact CAB when you feel able to.

 

[mejulie123]

Do please take note of this as you sound exhausted. If you gave up your own home you can probably get a disregard. Contact CAB when you feel able to.

Do please take note of this as you sound exhausted. If you gave up your own home you can probably get a disregard. Contact CAB when you feel able to.

Hi Daffy. Thanks so much for your post. I had a visit today from the local authority social worker who is going to check this for me, as well as a Befriending service so i can get a few hours to myself. We had a visit from so many people over the last few days, all to do with Mum. I have been told of a lovely day centre within the area i live, but Mum refuses to go anywhere outside the house. Thanks so much for your advice. X

 

[karaokePete]

It may be worthwhile forcing the issue with your Mum. A person with dementia will rarely volunteer to accept outside help of Homes or Day Centers. However, they often settle to these things when they are put in the situation and suddenly feel the benefit.

I know some members have used terms like ‘going to the club’ rather than going to the Daycare Centre with some success.

 

[Hazara8]

Hi all. I'm Julie and i care for my 92 year old Mum who has Alzheimers paired with vascular dementia. Please bear with me as this is a long post. Iver the last 5 years my disabled son has been hospialised in intensive care twice, my partner suffered with intense back and leg pain and has had two operations to fix this. He still struggles now. My sister was diagnosed with Leukaemia a month ago, and i am struggling to cope. I had to sell my home, to come and live with mum, snd also change from full to part time work. My partner decided he would move in with his dad so the responsibility for mums care is all mine. There wasn't a huge amount of equity in my house as i still had an £88k mortgage. My elder sister comes most Saturdays so i get a break, but Mum can no longer be left alone. Her condition has worsened and she now needs help bathing and needs all her cooking and cleaning doing for her. I don't want her to go in a care home as she is insistent she will nog leavd her home, but i can no longer manage myself. I will have to give up work if Mum stays at home, as mum is self funding, which would cost more than i earn and it woukd not be worth me going to work.
I am terrified about where i will live. Will i have to move out? I know i can get carers allowance if i give up work but that is so little.
I cry myself to sleep each night and whdn i wake up i dread the day ahead. I am feeling so very low. My head is so full i am waiting for it to burst.

That is a mammoth challenge to anyone who is subject to all the emotions and feelings which come about when one's life is turned upside down. Caring for a mother who has Alzheimer's and vascular dementia (mixed) alone, would be enough. I know, because that was my own challenge with a 95 year old mother. As has been so wisely suggested from others here, there are avenues of help and guidance out there, which you deserve and which you are entitled to. At this stage the whole weight of what seems such a scenario of despair, is evident and overwhelming. If at all possible, take things one at a time and glean all the information available as to your situation and how it can be resolved. A good relationship with a GP - even if new - is always of considerable worth. Yes, it seems like a minefield out there and at times, seemingly hopeless. But I am sure that there are many who have trodden this path and who having read your post, will like me, offer warmest wishes along with the fact that things DO improve, albeit at the time, that sounds fanciful. My own story was traumatic, at times very very hard, but then merged into something quite different - like a huge cloud lifting and allowing in light. There are numerous 'lights' who contribute to this forum, having "been there" and in that alone, there is a source of comfort and mutual understanding. You may never feel 'alone'.