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Mum Alzheimers Diagnosis and Dad Still in Hospital - Carers UK Forum

Mum Alzheimers Diagnosis and Dad Still in Hospital

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Hi All

Just checking in with a bit of a let of steam and update! My story is that Dad has HD and was admitted to hospital in March due to my Mum not being able to cope as his sole carer due to her own confusion and memory problems.

Dad has been in a "rehab" unit since March, basically bed blocking as his condition is complex and he needs 24 hour 1:1 care due to the complexity of his needs. Despite this he was refused CHC funding and then we struggled to find a home to meet his needs with what the local authority would pay. My sister appealed the CHC decision and miraculously he was suddenly found to be eligible at a meeting they hadn't invited anyone to the family to! The system just feels a total shambles. My sister and I are fairly confident people and I just want to weep for people who wouldn't question a decision like this. But that aside, I feel more hopeful that we will be able to find him a suitable bed now. No one should be in limbo like this for 5 months. Sadly, whilst in hospital his condition has deteriorated and he has been quite aggressive about not being allowed home. At my last visit with my Mum he rammed a wheelchair into her. And I am finding visiting him really difficult at the moment as it just seems to cause upset all round.

Mum has been really relieved to not have him at home any more. It was never a happy marriage and he was a bully. The level of care he has in hospital demonstrates the huge strain she had been living under. Sadly today she was diagnosed with mid/moderate Alzheimer's. Not at all a surprise to me really, I was braced for it, but I don't think she really expected it. She has been prescribed Donepezil. We are in the process of putting PoA in place, have had an emergency alarm and key safe fitted. She is doing OK at home, getting washed and dressed etc. I worry about her eating properly, but she doesn't seem to be losing weight. I think we will also try and get some more regular care in place. At this stage it is probably more someone popping in on the days my sister and I aren't there to make sure she has eaten etc rather than full on personal care. I was thinking about applying for Attendance Allowance, but I don't know if her needs are significant enough to be eligible for that. Probably more important is to make some happy memories whilst she still knows who we are.

Sorry for long post. I just needed somewhere to vent. It has been a fairly awful year. I can sort of see a way through it all. And whilst all this has been stressful, I hope that we are putting things in place to stop us lurching from crisis to crisis, which is how it has been for at least the last 5 years. I really don't think I would have got through the past few months without the forum. So thank you all for listening.
Such a difficult time for you all, well done for getting CHC awarded.
Definitely apply for Attendance Allowance asap, she is going to need that money for support in future. Also, with this diagnosis she becomes completely exempt from Council Tax. If she is living alone, that means no Council Tax at all. (I think if she is living with someone else, they will have to pay at single rate). Does mum have a dishwasher? Washer/dryer or tumble dryer? The more you can streamline her house, and especially her garden, the less work there is for her, or anyone else, to do. I'm a great advocate of flattening all flower borders and just having a patio with pots and flowers. After mourning the loss of my flowers for a while, it's so much easier. My sons now cut my grass for me, but even if I needed a gardener it wouldn't take long now, whereas it used to be like the Forth Road Bridge, never ending (in total it's half an acre!)
Hi Sally
What a lurching roller coaster indeed.
Apply now for a Needs assessment for Mum as it takes time to get to top of queue.
Am I right in assuming HD is Huntingdon's (or am I confusing your dad with someone else on the forum?). If it is Huntingdons, then how on God's sweet earth can the NHS say this is NOT a medical condition? It's a genetic disease for heaven's sake! There's nothing in the slightest bit 'old age' about it!

Glad to hear he's now in residential care, out of the family home, and hope that your poor put upon mum does get some final 'me time' before the horrible shades of dementia close over her. She certainly deserves some final 'nice time'.....
Thank you for kind words. In a way having a diagnosis is helping us move forward. In a remarkable piece of joined up thinking from the NHS a needs assessment with an OT seems to have come out of the diagnosis, with a direct referral from the memory clinic. And that is happening this week. She will certainly be self funded for care for a while, so she has agreed to the local agency coming in to do an assessment as well, so we can have someone popping by on the days that we can't. My sister and I are now starting to plan some things with her to make some memories for us, if not for her.

Streamlining the garden is an excellent idea. She LOVES gardening and can still partake in that so I think she would really enjoy that as a project.

Thank you so much to all who take the time to reply to posts like mine. You have kept me sane.
If mum can manage it financially, streamlining the garden will be much better if first you have a patio made, somewhere to sit that also reduces the area of garden to look after!
Then as you do something positive towards making the patio super special (mine is lined with hydrangeas in big "vegetable troughs" plastic, made by Stewarts, which have a special significance for me) - you can then take out something in the garden that isn't vital.
The aim is no beds in the garden, all plants in pots on the patio. Mine all have trough "saucers" underneath. The hose is nearby, so in hot weather I just keep the saucers full of water. The plants just love this. Expect mum to mourn some of her favourite plants, everything in my garden had a special memory, just keep saying gently "but we need to make it easier to manage".
If mum has a former veg. patch, the easiest way to deal with that is to cover it with black weed suppressant material. Best to buy online if you need a lot, it's horribly expensive by the yard in a garden centre!