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Hello and Thank You! - Carers UK Forum

Hello and Thank You!

Tell us a bit about yourself here.
I wanted to introduced myself as I have taken so much strength and advice by lurking on here for the past few weeks!

My Dad has had a progressive neurological condition for the past 15 years or so which causes has a heady mix of physical, mental, cognitive and communication symptoms. He is a very difficult man and my Mum has struggled on to care for him at home as he has got progressively worse through this time. They have both been very resistant to outside help, despite pretty much constant begging, arguing crying from myself and my sister for the past 5 years.

5 years ago Mum was diagnosed with breast cancer, which has been successfully treated. She also gave up driving around this time. Since then she has also been having memory and sight problems. Increasingly forgetting arrangements, words etc. Again despite pleading with her, she refused to go to the GP.

So, which not actually caring for them on a day to day basis, they have been pretty much a constant worry to myself and my sister for the past 5 years. We have also been responsible for pretty much all medical appointments/crises. And we have basically been lurching from crisis to crisis during this time. I have two children under 7 and my sister runs her own business, so it has not been an easy juggling act. I gave up work after my son was born mainly as I just couldn't juggle work with 2 small children and Mum and Dad.

Things came to a head at Christmas, when it became apparent just how bad things had become with both of them, so I requested a social services assessment and was awaiting that when I got a call from my Mum telling me she had "lost" my Dad. She was then unable to describe to me what she meant by this. When I was eventually able to unravel what had happened, it turned out an ambulance had been called as he had some sort of panic attack in the night, but she was unable to tell me this as her own cognitive function was so bad. When I tracked him down to A&E there was nothing further wrong with him, but I refused to take him home as I didn't feel my Mum was able to care for him any longer.

This was over a month ago and he is now in an NHS rehab centre awaiting assessment. He is under constant 1:1 supervision as his behaviour is erratic and he is prone to falls. He is livid at this and feels he is "better off at home". Staff are amazed my Mum was coping alone and the ward sister plans to recommend he gets continued health care funding because of his high, complicated needs. When my sister explained to my Dad that Mum was no longer at home as we suspected she has dementia and could no longer care for him he described her as a "cow", which kind of sums up the sort of person he is!

I made Mum go to the Drs and she has failed her mini cognitive function test and was so bad she was fast tracked a referral to the memory clinic where they ascertained she has short term memory problems and she is awaiting a scan in order to get a diagnosis.

She is currently staying between my sister and myself whist she has her kitchen and bathroom made more accessible in the hope she will be able to live at home, perhaps with carers popping in at least for the time being. I plan to request an assessment for her once we have a diagnosis.

Things are pretty awful right now. I am juggling Mum, visits to Dad and 2 kids (my husband is supportive, but works a 2 hour commute away, so isn't around much). But I can see a plan forming and light at the end of the tunnel. This forum has helped me to see myself as a care planner. It has also helped me to stop seeing them as two grown ups who should be allowed to make their own decisions to seeing them as two extra children, and this has been a massive relief to me, mentally I can just get on with what needs to be done to make sure they are safe without the rest of us being crushed in the process. So thank you!
Hello Sally and welcome to the forum :)

I'm afraid that many of us on here will recognise your problems with your parents; yes, to describe them as 'two extra children' is probably accurate ! It's hard enough caring for someone at one end of the age scale without also having to care for others at the other end of the scale - you feel torn in two directions at once :( Unfortunately you're not made of elastic so at some point you'll be stretched just that bit too far.

Like others, who will be along later, I'm going to say that you should probably be planning for residential care for one if not both of your parents now. As much as you may want to keep them in their own home, maintaining their independence with your help, there does come the point when that is no longer feasible. What you can manage in the short term is, sadly, not sustainable in the long term.

So get those assessments done and apply for the CHC funding as soon as possible.
HI Sally, being a "sandwich carer" is a difficult balancing act. Just make sure that when the children are home, they are top dogs. Very shortly, mum may have such high needs that staying at home becomes impossible. However, if you do your best for the time being, and it doesn't work, and residential becomes the only option left, as happened with my own mum, your conscience is clear about why this had to happen. However, the clock is ticking, so I'd suggest looking at suitable EMI (Elderly Mentally Infirm) homes now, talking to the Matron/Manager, and perhaps investigating whether they do respite or day care. The best homes always have long waiting lists in my area. People they already know seem to go to the top of the list.
Thank you for helpful words and welcome.

My sister and I are absolutely determined that Dad cannot come home and needs to be in a nursing home. The rehab unit he is on is in agreement and also agree that his wishes to be at home are not rational. I am hoping this will hold sway with social services. Even if he had 24/7 carers at home he would still insist on my Mum doing the bulk of care and her priority has to be her now.

Really good point about being ahead of the game for my Mum. We let them bury their heads in the sand about how Dad's illness would progress and let them avoid difficult discussions about care in the future which has caused so much heartache and anger. I will not make the same mistake again. I hadn't thought about getting ahead with looking at homes and I will do so as soon as we have Dad sorted.

I really can't thank the forum enough for helping to get my head straight on this. Two weeks ago I was completely at rock bottom.
Thank you Sally for taking the time to let us know that the forum has helped. Makes me feel a little less like an interfering busy body :)
Do let us know how it goes
If dad has 1:1 care at the moment, then there may be a possibility of him being entitled to "NHS Continuing Healthcare". Something of a postcode lottery I'm afraid, but at least worth reading up on, in advance of any possible move.
It might be helpful for mum to have a "Carers Assessment" from Social Services as soon as possible, so they can see that not only is she unfit to look after dad, but might need some help looking after herself. There may be a delay in the carers assessment, so request it asap.
Is dad currently receiving Attendance Allowance?