Caring for 2 with Dementia & Blind and a brain injury

New to Carers Connect
1

Hi everyone, I’m in Houghton Regis, Bedfordshire and I’m now caring for my mum and dad of 83 and 88. My 88 year olf father is blind with dementia and got through bowel cancer 10 years ago, but my mum has in the last three months suffered a horrific brain injury which we believe has permanently damaged all the functions of the frontal and temporal lobe.

I’ve moved in permanently with them, leaving my family home where I have 2 young children and it’s very difficult. From time to time It would be great to have a weekend with my family where I get a break and get a weekend with the family, but could anyone let me know of any options they know of where this is possible? Most homes expect a minimum of 2 week respite and as I would have to fund it due to their savings, I don’t want to pay for a week or 2 weeks for a Friday night through to Sunday morning / afternoon.

I almost feel guilty asking this question, but if I don’t get a break, I can see my health going downhill very quickly.

A huge thanks in advance people.

Jason

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Hi Jason
If they are self funding, i.e. have savings over £23000 then you can a range what care you want. Most agencies can provide a live in carer for weekends, some might prefer a regular routine so phone around.

Kr
MrsA

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Hi Jason,

You MUST find a solution that enables you to live with your children.
How you achieve this depends on their financial situation.

Do they
Own their home
have more than £46,000 in the bank
Do you have Power of Attorney
Are you an only child

I know these seem an odd mix, but they are crucial factors.

Can I suggest that you change your name and delete where you live, to retain anonymity.

4

This situation clearly cannot go on! It was a temporary ‘fix’ a ‘knee jerk’ reaction, and as such, is one that is familiar to many of us here alas (I did similar five years ago - I ‘knee-jerked’ when my 89 y/o MIL declared she could not face another Scottish winter alone, so I rushed up there and brought her back to me and …and realised that she was developing dementia and a ‘permanent solution’ HAD to be found - it ended up being a care home. BUT, had I not ‘rushed to the rescue’ the dreadful time that resulted from my knee-jerk, that nearly drove me to suicide/breakdown, would have been averted)

It is ‘instinctive’ to ‘rush to the rescue’ and that is FINE but ONLY if it is ‘temporary’.

You clearly CANNOT live permanently with your VERY high needs parents. A different solution ahs to be found.

  • Can you move them closer to where you live?
  • Can you put a live-in-carer into their house?
  • Can they move into a care home, either near you, or near where they already live.?

As BB says, all of the above depends on what their financial situation is. (And what about yours! Living with your parents doesn’t pay any of YOUR bills!)

One ‘solution’ to be VERY wary of is that of moving your parents in with YOU. This is nearly always a disaster!

Sadly, you now have to think carefully about what is going to happen to your parents from now, until their eventual deaths. This is the period of time you need to prepare for, in ways that gives them the best quality of life but NOT at the expense of YOUR quality of life, and that of your family.

5

HI everyone,

Thanks for your comments so far. I’ve updated my personal details, so thanks for the tip there. Regarding a couple of questions from the thread:

Own their home

Yes they do

have more than £46,000 in the bank

No - £40,800

Do you have Power of Attorney

Due to one with dementia and other permanently brain damaged, power of attorney is not possible I’m in the middle of applying for Deputy for my mother. She has an outstanding claim with AIG for her brain injury, which could pay if successful, over £300,000. BUT for the insurance company to deal with anyone apart from my mum, which is impossible, I have to have the POA or deputy for them to speak with me

Are you an only child

Yes I’m the only child

My Wife and two children are 2 minutes away. I moved my parents up this way last year as I could see things were starting to go wrong with them, due to being of the age they are at etc…
I live next door to the head of Dementia UK and even they have said that, I should get as much support as possible for me home here and not put them in a home, as the stats are that 60% of older people with dementia die within 6 months of being admitted to a care home.
Thanks again guys and girls

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Hello welcome to the forum
May I say that I do not agree with the stats, that dementia patients die within six months of being placed in care/ nursing homes. My lovely husband is in a nursing home because of strokes and vascular dementia. He has been there since March 2016.In that time I have befriended other visitors who’s loved ones have been in the home for longer. ( & Less). I did not choose that my husband go into the home, but his needs were more important. In fact, I have suspicions that he would not have survived at home, and in all probability neither would I!!
In my very humble opinion, that was a startling thing to say to you. It is only my opinion, others may disagree. I do hope you receive the support you very much deserve.

7

__

60% of older people with dementia die within 6 months of being admitted to a care home.

Quite a bit available through Internet searches.

In essence , the jury is well and truly out … 60% on the high side.

Nursing homes / care homes … no breakdown , just general observations.

As is the cause of death … dementia as the sole reason ???

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60% of dementia patients in care homes die in six months???

Weird! To say the least.

For a start, as Pet says, this is just NOT TRUE of many of our loved ones. My MIL has had ‘diagnosable’ dementia for 5 years, in a care home for four and a half…

I think you need to be very wary of confusing ‘cause’ with ‘correlation’. The implication of the startling statistic you were quoted is ‘if you put them in a care home they will die in six months because they are in a care home’…

ie, the implication that ‘putting’ them in a care home HASTENS their death, and that if you had kept them at home, they would NOT be ‘dead within six months’…

In fact, it’s FAR more likely to be a ‘correlation’ not a CAUSE. In other words, many of us ‘struggle on’ with caring for someone with dementia getting worse and worse and worse and ONLY when it becomes ‘impossible’ (or SOOOO stressful) looking after someone with DEEP dementia (ie, highly advanced!) do we ‘crack’ and say ‘I can’t do this any more, they HAVE to go into a care home’…

In other words, they only GO into a care home when they are VERY advanced with dementia, and so whether they are in the care home or at home, the ‘timeline’ to their dying is EXACTLY the same! It’s the DEMENTIA that kills them (it kills the ‘conscious mind’ then kills the rest of the brain, until the heart and breathing stop…). It is NOT the care home!

In fact, it is FAR more likely that being in a care home EXTENDS their life over what might be possible if they were at home. For a start, there will be a lot less chance of accidents (eg, falling downstairs, or just falling in general). Care homes for the mentally infirm will have nursing staff on duty all the time, again, a ‘safety measure’. Also, because life is lived ‘communally’ there will be much more mental stimulation for the patient, which helps to ‘keep the brain alive’.

In fact, the more I think about it, the more what that man said to you is absolutely deplorable! It seems to be deliberately ‘scaremongering’ and even ‘threatening’ (ie, ‘oh, don’t put your mum/dad in a care home - they’ll be dead in six months and it wil lbe YOUR FAULT’

I think he has an axe to grind - and it is the ‘we should be looking after our parents at home, ourselves, not abandoning them in care homes’…

Or, he’s being funded by the government who yes would LOVE us all to slave away for the pittance of Carers Allowance looking after our parents, rather than ‘putting them in a care home’ which the government would have to pay for it they don’t own their own house or flat!

All in all, I think it is a highly ‘inaccurate’ and ‘irresponsible’ and quite frankly biased and shameful thing to have told you! What POSSIBLE help could it have been to you???

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If they own their home and have that amount of money, then Social Services should do a Needs Assessment for them both. SS will pay towards the cost of assessed care needs. They should also do a Carers Assessment for you, to look at what would help you in your caring role.

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Hi charities that provide respite care for people with disabilities such as VItalise holidays have funding options available for people in need.This means both or 1 of your parents could go on a holiday providing you with some well deserved respite