The real cost of dementia?

[dizzywizzy]

I spent monday at the dr's and now have to have an ECG and blood tests as although they are certain my chest pains are stress related, they just want to check. My sister too has been to the drs about stress relate illness. We are both exhausted after 5 months of our dad being in hospital, travelling several days a week to visit, sorting out funding, dealing with social workers search for a emi nursing home and trying to keep working.
I am arguing constantly with my husband, not seeing my grown up children much and I suspect it's the same for my sister.Apart from the emotional cost, the NHS is now dealing with the cost of stress related illness , which I doubt will end anytime soon and must be extremely common.
I do appriciate that we are lucky as we have only been dealing with my dads dementia for about a year and only the last 5 months have been in crisis . I know many many people who have dealt with it a lot longer and without a fraction of the help we have had.

It got me thinking wouldn't it make economic sense, to put more money into supporting dementia patients and getting help quicker with more support, then the knock on effect would perhaps not be as great. I am sure it must cost the NHS a fortune to keep us relatives and carers healthy.

 

[jeany123]

I agree with what you say I was rushed to hospital with chest pains suspected heart attack and found to have stress and acid reflux I now have to go for another blood test tomorrow, My husband has vascular dementia he was diagnosed about 3 years ago but has had it a lot longer, the stress I have with sorting things out is enormous everything seems to be made twice as hard even though it seems simple to me,
Also finding phone numbers, being passed on to other people, trying to talk to someone on the phone ( they are always with another client ,on the phone, on holiday,on the sick ,on days off,) then when they say they will phone back they never or rarely do,or they keep you waiting when it is urgent ,


Jeany x

 

[Christin]

Hello Wellydog,

I have to agree with you, I do think that if more support was offered at an earlier stage then some of the stress could be lifted.

For us, I think the problem was knowing where to go, we seemed to come up against several brick walls when we first began asking for help. I do agree that this may be quite common.

It was one of the reasons that the AS website and TP were such a great support and mine of information for us.

Very best wishes to you. I hope your own health improves quickly. If you can, try to give yourself a treat. xx

 

[SisterAct]

Ditto ditto ditto
I have also given up my job and my sister has dropped a day to look after Dad. I now get the carers allowance, which I think equates to something like £1.50 per hour. Whoopi do!
Polly x

 

[Teeny]

Totally agree i look after mam and my health is now suffering through the stress, dr told me yesterday to take a step back from it all.(if only it was that easy) she didnt like my answer when i asked for a nurse to call every day and a carer all day to bath mam dress her and help her in the toilet, thats without feeding and holding her hand cause she gets frightned someone is in the house, the list goes on. We have booked some respite for mam now (first time) but we have to wait for cpn to come back from holidays (lucky her) to confirm to ss that mam needs a dementia care home, this i find unbelievable. Why cant every borough have a central computer that all the services a dementia patient needs can be accessed it may cost to set up but be cheaper in long run and they could all communicate on the need of a patient. It would also save the carer time and energy from explaining the same thing to all concerned over and over.

 

[kingmidas1962]

ditto....

I so hear everything you say ... my mum struggled with my dad for years - he is now in a car home at 85 (he has Picks disease) and while I wouldnt use the word 'thriving' he is doing just fine. He is fed, washed, clothed and entertained (thank god for the TV) but mum is falling apart. She had a complete mental meltdown at the weekend and is staying with me and my family temporarily. Its a nightmare - all of us squeezed into a tiny house, my daughter is 14 and has instantly lost all her privacy ... my nerves are shredded. My mum needs to be in care now as well I think! We are going to look at assisted / sheltered housing for her, but we'd have to sell their house .... the list goes on and on and on .....

 

[ceris]

I hear you too. My mental health has suffered to the point I've pretty much had a breakdown. Dad's in a care home now, but the stress doesn't end, and I have to work full time because I'm on my own - no siblings or OH. I never realised it could be this hard, and I have it relatively easy.

 

[chucky]

Ceris, i can relate to that, i did have a breakdown and it cost me dearly. Without going into details i lost everything i possessed including my home and its been a tough lesson to learn. If i'd known then what i know now, with the right support i wouldnt have endured what i did. Still, i did what i thought was the right thing at the time, hindsight is a wonderful thing.

 

[branwen]

I also use a messageboard based in the US for support and in the US there are people called "geriatric care managers" who can act as liason between all the various authorities, find their way round the funding maze, help with choosing residential care etc etc. It seems like in the UK everything is simply on the shoulders of one exhausted carer who has their work cut out simply trying to keep their spouse/parent healthy and safe, and don't have time or energy to navigate the ridiculous complexities of medical, financial, legal, social services, distric nurse, CPN etc etc. In my case it took me threatening suicide and coming close to a breakdown before anybody stepped in to help. Had I had a breakdown there would have been the cost to the NHS, the loss of my taxes and NI contributions, the benefits I would have needed - and I still would not have been able to provide what my parents needed.

 

[ceris]

Ceris, i can relate to that, i did have a breakdown and it cost me dearly. Without going into details i lost everything i possessed including my home and its been a tough lesson to learn. If i'd known then what i know now, with the right support i wouldnt have endured what i did. Still, i did what i thought was the right thing at the time, hindsight is a wonderful thing.

That's awful - so sorry to hear it. I will try to make sure that doesn't happen to me - feeling a bit more on top of it, but am treading very, very carefully and looking after myself better.

 

[ceris]

I also use a messageboard based in the US for support and in the US there are people called "geriatric care managers" who can act as liason between all the various authorities, find their way round the funding maze, help with choosing residential care etc etc. It seems like in the UK everything is simply on the shoulders of one exhausted carer who has their work cut out simply trying to keep their spouse/parent healthy and safe, and don't have time or energy to navigate the ridiculous complexities of medical, financial, legal, social services, distric nurse, CPN etc etc. In my case it took me threatening suicide and coming close to a breakdown before anybody stepped in to help. Had I had a breakdown there would have been the cost to the NHS, the loss of my taxes and NI contributions, the benefits I would have needed - and I still would not have been able to provide what my parents needed.

Yes, that's right. I don't really like the way the US seems to do a lot of things (a two-tier healthcare service etc) but what you talk about sounds logical, doesn't it? I have got to the point where I am refusing to chase 'them' - they can contact me, and I will respond. I'm already in complaint mode against the PCT because my dad broke his hip while in their care - all that matters to me now is that dad's comfortable in his last days/weeks/months.

 

[flowerpot]

ditto here too.....

It doesn't get any easier although we now do take advantage of respite care we will be having our third break hopefully in September and are hoping to have a small holidy.

I too have had stress related problems this year and have been backwards and forwards to the doctors and hospital thankfully nothing 'wrong' just stress ......never mind now that I know it's nothing serious I'm feeling better and try to keep myself calmer....if it was only that easy. Only this morning I was changing MiL's bed at five thirty as it was wet again so I've had next to no sleep but hey ho it's not for ever is it and I love having her here and looking after her, its just the invisible SiL but I won't go into that and spoil my day or yours

Seriously though if you can get any kind of respite take it. We put off far too long before we accepted it and now it gives us something to look forward to.

 

[FiveWords]

I've been to the doctor twice with stress-related ailments this year: palpitations once (which turned out to be benign but were so uncomfortable that I would skip meals [they were brought on by eating] to avoid triggering them) and depression/stress once. I got a CD from work about managing stress and the depression has passed now, and the palps are leaving me alone at the min but will probably come back, apparently. Let's see what happens next. I work full time and care for dad and his finances almost every single hour that I'm not at work (and even many hours when I AM at work ). There's no wonder we are all so battered really. There isn't much life can throw at you that's worse than this, is there? Hugs to all xxxx