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Its all very complicated!!!! - Carers UK Forum

Its all very complicated!!!!

Tell us a bit about yourself here.
Hi Everyone, Im Tracey aged 44 and i consider myself a carer for my dad who was diagnosed officially with COPD, Emphysema, Oesteoporosis and muscle wastage a year ago. He's also got some form of dementia going on ie: very bad memory and quite agressive verbally at times.
I work full time on shift at the airport and to be honest with you im finding it physically and mentally exhausting dealing with this on my own!!
Basically he cant leave the house without me (so have only just applied for a blue badge) and when we do go out hes so unsteady on his feet im a nervous wreck of him falling.
I really dont know where to start finding out what support im entitled to and was hoping someone can advise/point me in the right direction?? I dont think im entitled to any monetary help but right now just having people to talk to would be a great help! My brother lives outside of the UK so i literally am having to deal with this on my own at the mo :cry:
I wont go on anymore but look forward to chatting soon.
Thanx for listening ;)
Hi Tracey,

And welcome to the Forum :D .

Yes, you have a lot on your plate. The starting point, if you have not done it already, is to contact your local Social Services and ask for a care assessment. This may lead the way to equipment in the house, care visits, respite breaks etc etc. Also, do you claim Attendance Allowance for dad? It is not means-tested and may enable you to purchase support such as cleaner, gardener, respite care, anything which would be useful.

And yes, it is very complicated but it reminds me of the old joke about how you swallow an elephant, ie one bite at a time.

Do you have a local Carers Association or Age UK? They may be able to talk you through what is available locally.

Others will be along to say hello shortly so I will sign off but any specific questions, just ask. There is normally someone around with an answer.

Anne x
Hi - it certainly doesn't help having your only brother abroad and you being the only carer available in the UK. I'm in a similar position in that I'm the only person here in the UK for my MIL, as her surviving son lives in the USA, so though he is very sympathetic and supportive to my predicament, can't actually help in a practical sense (money is not the issue - fortunately - but 'time and attention' are .....)

It does make me feel that it's all 'landed' on 'little old me'! Maybe you feel the same.....?

In practical terms for you, does your father still live in his own house, or has he moved in with you, or you with him? If he still lives alone, I would, speaking entirely personally, think extremely carefully about changing that, as although it can 'make sense' to be in the same place as he is, it will add enormously to your 'psychological stress' - you won't be able to get away from him easily, or 'tune out' emotionally/psychologically. However, others here may argue differently!

One thing though, if you do start to co-habit, it can be a one-way street, because he will get used to you being on hand to look after him night and day.....unless the point comes when his dementia worsens so much he may need residential care in a home.

Overall, grim though it is, you have to 'prepare for the worst'. The future will not improve the situation in terms of his health, and therefore forward planning will be essential - if difficult.....

I wish you all the best, and hope you find here the emotional support, and practical information, that will help ameliorate your situation.
Hi Tracey & welcome,
Juggling work and caring singlehanded is a challenge, I'm in the same boat.

Might be worth contacting age concern to see if there are any lunch clubs etc your dad could join, they often have volunteers who collect people etc

When going out with your Dad, it might be worth borrowing a wheelchair, lots of places lend them out. My mum is unsteady and uses a wheeled walking aid, which makes her feel a lot steadier.

Hi Tracey
Anne has given good advice - start by contacting social services and see if there are any local carers groups near you

I would also recommend that you get dad referred to the memory clinic for a definite diagnosis. Once you have that it opens up a lot of doors that might otherwise be shut.

If your dad wont go to his GP you could go and see the GP yourself and explain your concerns. The GP wont be able to discuss it with you, but he will be able to listen (the GP really needs to know anyway) and he might be willing to send dad an appointment to go for a "check up" ;) and then refer him.
A formal diagnosis may mean more benefits, not paying Council Tax, all sorts of things, so even though you know there is a problem, it does need the GP's input. Have you worked out the three things which you find most difficult, might be practical, financial, or emotional? There are all sorts of solutions around, but they really hinge around you. Like it or not, from now on, you will increasingly be in charge. I would find verbal abuse really difficult. Sadly, all the problems will gradually get worse from her on. If you can work out what help you need now, and how long you feel able to cope, even with maximum help, it might give you a clearer view of where to go from now onwards. A Social Services Carer's assessment should help you with this. Admitting that a caree's needs are simply too great for one person to deal with any more is very difficult, but sometimes it will be the only practical option left. My own mum is now in a nursing home, she needs 24/7 care due to physical problems.
Hi Tracey .. Certainly not easy for you and some have already given good and useful advice. I am now an ex carer having cared for my Mum with COPD and Osteoperosis amongs other medical conditions. I would certainly look at getting a wheelchair. Perhaps speaking with your GP as renting long term could become expensive. Does your father have to tackle stairs? if so, applying for a stair life my also be useful. My own mother was quite stubborn and would not pay for a lift to be fitted and decided to go via social services which took ages to the point that it was never fitted before she passed away. So sad as it meant that I couldn't get her out of the house. Like many illness es with COPD and Osteoperosis you need to try to think one, two or three steps ahead to plan for what sadly is the inevitable.

I'm sure you have realised Tracey that you will receive plenty of support here!

Welcome to the forum!

Bell x
Re wheelchair - my local St John's has supplied my MIL with a wheelchair, on free, indefinite loan, and only asked for a deposit (about £50 I think it was) against possible damage (or not returning it!). It is a little heavy, but it's perfectly possible to collapse it and get it in and out of my car boot.
Oh wow, I'm shocked to see so many replies (thank you so much)!!!
My dad is very stubborn and won't admit to having anything wrong with him and I've found our GP to be very unhelpful (I went to him a couple of years ago to find out about being tested for alzheimers) and they told me that unless my dad came in himself and asked for help then they didn't want to know. I'm worried that my dad will go mad at me if I got social services involved because as I mentioned before he won't admit to having problems so I'm doing this behind his back. I tried to enroll him in the local bowls club a few years ago but again he won't leave the house so I know that won't work. The best I can ask for at the mo is emotional support which I can see I will get on here :) Once again thank you for listening xxx
You are still entitled to a Carers Assessment from Social Services, regardless of him. If he is determined to be stubborn (I had an elderly stubborn relative, so I know what you are up against) then he is making things so much worse. Is he seeing doctors for any of the complaints you list? They are all progressive, so at some stage in the future he will be forced to change his attitude and accept help, or go into residential care. However stubborn he is, he cannot demand that you care for him. He is clearly vulnerable, and Social Services have a duty to protect vulnerable adults.