ENTITLEMENTS AS CARER?

[cobden 28]

My elderly Mum - aged 88, very frail with numerous medical complaints and recently diagnosed with Mild Cognitive Impairment (MCI) - lives alone in a bungalow she owns outright, about an hours' drive away from me. As her only child I'm her next of kin, with her only other known living relatives being my married daughter who lives in London and doesn't drive and a male cousin living in Yorkshire whose own wife needs full-time care at home. Mum was in hospital a couple of weeks ago with a bad chest infection which seems to have affected her quite badly as she was diagnosed with MCI and is certainly a lot more confused since she came home from hospital.

She has the district nurse come in every morning seven days a week to give insulin injections into her tummy (she's diabetic) and employs a cleaner for one hour a week on Saturdays, but has no other regular visitors. She's trying to pressure me into selling my flat (or renting it out) and going to live with her as her full-time carer & companion, and won't accept my reasons for not wanting to do this. I have a menagerie of pets which Mum thinks I should just leave behind or get rid of. Mum doesn't have the internet at home and refuses to have it installed which would make it difficult to organise her affairs as she also wants me to do.

If I were to go live with Mum as her carer, what benefits would I be entitled to claim as her full-time carer, and if Mum were to die in the next couple of years could I be forced to move out of her bungalow and thus be made homeless, if I'd sold my flat in the meantime? I'm 64, divorced and took early retirement from the civil service nine years ago after a stroke and a heart attack; I had a second heart attack two years ago plus I was in hospital six months ago with what may have been a mild stroke.

 

[Grannie G]

This is something to discuss with the Benefits Office. No one here can tell you precisely because all assets need to be accounted for.

 

[CardiffGirlInEssex]

I would strongly resist the suggestion that you give up your independence to this degree. I too am an only child, though both my parents are alive and I am married so just moving like that isn't an option for me. Yes, there is constant guilt and worry, but giving up your life is not the answer, in my opinion. I suggest contacting your mother's GP to find out how to get her a proper care needs assessment, and make it clear that whatever she says, you are not about to become her carer. It is hard to do, but if Social Services get so much as a sniff of the idea you will do it, they will encourage that to happen.

 

[canary]

I would resist doing this too.

My mum wanted me to give up my job, leave my husband and go and live with her to be her carer. This was before she was diagnosed with Alzheimers too
People who have (or are developing) dementia are often aware deep down that something is wrong and that they need extra help (even though they might deny this when asked), but their world is already shrinking and they can only see their own needs, wants and comforts.

You already have serious medical problems and caring will only make things worse.
Please dont do it.

 

[Jaded'n'faded]

As @canary says, don't do it. Just don't. You can't give up your life, your home, your health and your pets to dementia. No good will come of it and there is so much that could go wrong for you.

By all means organise more care for your mother. Has she had a needs assessment recently? (Even if self-funding she is entitled to one.) Tell SS and her GP that she needs more help and you can't do it.

If your mum continues to pressure you, distract, prevaricate, procrastinate. Say anything you think will work. Tell her you've had another stroke/HA and that your doctor says you must rest.

Your mum has enough funds to pay for her care - it isn't your responsibility.

That bears repeating: your mother is not your responsibility. Neither is she going to get better than she is today.

 

[Sirena]

I agree with the other posters, don't let yourself be pressured into this. Your mother's illness will get worse, and she could live for years. You have serious health problems and need to take care of yourself.

Your mother won't be at all interested in your needs/wishes or even recognise that you have any (people with dementia lose empathy very early on). So you either need to just say no and change the subject, or think of a way to distract her - don't try to discuss it in practical or logical terms. She will probably be like a dog with a bone if so you need to let it wash over you.

Do you have LPA for her? If not, I would try to arrange that as soon as possible, assuming she agrees to do it.

 

[Rosettastone57]

My elderly Mum - aged 88, very frail with numerous medical complaints and recently diagnosed with Mild Cognitive Impairment (MCI) - lives alone in a bungalow she owns outright, about an hours' drive away from me. As her only child I'm her next of kin, with her only other known living relatives being my married daughter who lives in London and doesn't drive and a male cousin living in Yorkshire whose own wife needs full-time care at home. Mum was in hospital a couple of weeks ago with a bad chest infection which seems to have affected her quite badly as she was diagnosed with MCI and is certainly a lot more confused since she came home from hospital.

She has the district nurse come in every morning seven days a week to give insulin injections into her tummy (she's diabetic) and employs a cleaner for one hour a week on Saturdays, but has no other regular visitors. She's trying to pressure me into selling my flat (or renting it out) and going to live with her as her full-time carer & companion, and won't accept my reasons for not wanting to do this. I have a menagerie of pets which Mum thinks I should just leave behind or get rid of. Mum doesn't have the internet at home and refuses to have it installed which would make it difficult to organise her affairs as she also wants me to do.

If I were to go live with Mum as her carer, what benefits would I be entitled to claim as her full-time carer, and if Mum were to die in the next couple of years could I be forced to move out of her bungalow and thus be made homeless, if I'd sold my flat in the meantime? I'm 64, divorced and took early retirement from the civil service nine years ago after a stroke and a heart attack; I had a second heart attack two years ago plus I was in hospital six months ago with what may have been a mild stroke.

As others have said don't do this. Don't give in to this emotional blackmail. My mother-in-law was very much like this . She was widowed very young and expected my husband and his sister to give up their lives and become her full-time companion. She had a personality disorder and other mental health conditions which made her very needy and demanding with a complete lack of empathy. She displayed many of the traits that are also common with dementia and in fact her illnesses eventually developed into mixed dementia. Before her diagnosis of dementia, my husband and his sister many many years ago, made a decision that they would never under any circumstances, care for her in her own home nor would we ever move her into our own homes. Her dementia became worse, we were so glad as a family that we had made that decision many years ago.

She was self-funding and we had lasting power of attorney both for finances and health. I organised a private care agency to come in to be her companion and deal with anything else. Of course throughout the years even before the dementia, she had been rude and aggressive and demanding towards family . We just ignored it easier said than done I appreciate.

Your mum will never understand the reasons why you cannot care for her. Logic and reasoning have gone in this illness and you will never get her to see your point of view. If you want to give up your independence your life , your flat then fine. It may be that your mother lives for many years and you have your own health to consider. Please think very hard about this

 

[Lilac Blossom]

Please do not move in with mother - no benefit you may (or may not) be entitled to could compensate for the detrimental effect on your health.

As district nurse is calling every day your mother could ask her to arrange contact with care manager to arrange for home care visits. Or could you contact district nurse by phone - DNs usually have good information on local services and can advise and sometimes liaise with other support services.

 

[Tammer]

Hi,
As others have said, please do not sacrifice yourself for your mum.

It can be a very difficult situation and the patient loses all empathy and ability to see anyone else's views or use logic.

I am in a possibly unusual scenario where my own mum is suffering from dementia but I have a 9 year old son myself. When I look at my own son I feel that I would lay down my life for him. I would not expect him to give up his life for me. If, in the future, I fall to dementia, I would not want to impact negatively on my son's life and I will tell him this when he is old enough to understand.

I don't know your case but it may be that your mum might have thought the same in her younger years.