Tired of coping

[Hugh]

Hi everyone, sorry this is a bit of a ' winge' but I know only one place where my situation is well understood and that is here on TP. Don't send in stuff very often as am like all of you busy dealing with life caring (via a nursing home) for my dear Mum who is 88 and six years down the road with AD. Sometimes I feel as if I am going to loose my mind with worry and exhaustion - while also trying to be a reasonable Husband for my wife and Dad for my children - angels they are all three. Last week had a row with the town disability parking people who for the first time in 2 years since we joined said we could only use their under cover parking if we used a piece of their equipment e.g a wheel chair. After a frustrating discussion explaining we had been using the car park facility for 2 years with no requirement (or need!! - I have got our own wheel chair for Mum which I keep in the car) I stormed out as I had to get Mum to an appointment. So much for community help for the disabled!!!! Plan to make a formal complaint - meantime will send them back their perishing membership card and tell them we shall alternative arrangements in future. Then got home to find a letter from nursing home who - having offered Mum a better room which we accepted at a cost mentioned of around £35 extra each week (currently paying £750 per week) - advised me the extra cost would be £65 per week!!!!!! Room is only marginally larger than other one so spent about an hour this morning talking the NH manager and owner suggesting the increase was excessive and simply saying it was unacceptable. After time negotiated down to increase of £45 per week. I feel it is soon time for some regulation/control to be put in place in these places - they seem to think they have a licence to print money!! Mum is well cared for for sure but my God at £3200 every 4 weeks the proceeds of the sale of her house - another exhausting and guilt ridden nightnare I am having to manage right now - won't last very long. I hope to goodness I can spare my kids this hellish situation - I am already working out ways to 'hand them over our assets' so they will not go nuts and bankrupt as they try and live their lives and raise their families. Dear Mum, you really dont deserve this at the end of a productive and happy life - the only blessing is that you are not aware of what is going on. Sorry to sound so selfish and self centred folks - just have had enough at present but need to find the energy to keep going too!! Know the feeling? Bet you do! Thanks for the space to let me let off some pressure. Now back to try and do some work work! Hugh

 

[BeckyJan]

Hello Hugh - although I have not experienced the same problems I do have so much sympathy for you - we all go through our own burdens and hardships with this wretched disease. I just hope the ranting on TP has helped you to feel a little better - like throwing jam jars against a brick wall!!!

'Nursing home fees are frightening - my brother has paid them and now has local council propping him up. I dare not think about incurring the same costs for my husband, but who knows?

I am sure you will find the sympathy and support that you deserve here - just a pity we cannot solve each others problems.

However, 'maybe' tomorrow will be a better day.
Best wishes Beckyjan

 

[Lucille]

Hello Hugh

I sympathise with you too! I know how frustrating it can be when, seemingly, every corner we turn provides an obstacle for us to climb over. But climb we do - somehow. Having to cope with this sh***y disease is bad enough, but all the bureaucracy that goes with it, is something else!

Keep your chin up. Rant and shout as much as you like! That's what we're all here for.

 

[dmc]

hello hugh,

if only this disease would come on its own but it seems to bring so many other problems and obstacles with it,
im very lucky at the moment that my mum is cared for in a dementia unit in hospital and at times at home with dad, so at the moment nursing home fees are not a option for us.
just wanted to send you good wishes you sound as if your doing a brill job for your mum and your own family,
feel free to whinge away....that steam has to escape somewhere and theres no place better than TP
take care x

 

[blue sea]

Hi Hugh
You're not selfish or self centred - the very opposite. You're doing a brilliant job coping with all the emotions, practicalities and life in general. Try to protect some time to be you and have some enjoyment. You won't be any help to your mum or rest of your family if you get exhausted and over stressed. Your mum is very lucky to have such a son.
Blue sea

 

[Grannie G]

We sold my mothers house for £69,000, in 1996. She lived in the nursing home for 6 years before she died and all her money went, including top ups from Social Services.