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Help - don't really know what to do at all

(29 Posts)
HesterShaw Mon 30-Sep-13 15:04:26

This is the first time I've posted about my dad. He's just 70 and has been deteriorating rapidly in the last 12 months. It's some kind of dementia, but not Alzheimer's. They thought at first it was a really bad depression as he has a history of depression. There are so many problems I don't know where to start. He and my mum live a four hour drive away from me and they have no family near. Dad's brother and sister and their partners live three hours in the other direction. My sister lives in London so that's another three hour journey from them. My brother is more or less useless. My DM is the primary carer - she has managed to source a reasonable amount of help e.g. a carer in the mornings to get him up and showered and dressed. Every Wednesday evening someone comes in for a few hours so she can go to her class and she has also just managed to put him in somewhere for Thursdays and Saturdays so that she can get some time for herself.

Though I feel very sorry for her because it's so hard, I know that things could be worse with regard to the amount of care. They are able to fund things and money isn't a big problem. But she is just so cold. Their marriage has always bee quite extraordinarily dysfunctional and they have barely communicated properly for decades. Our whole lives, we have hardly seen one spontaneous gesture of affection from her to him, but an awful lot of sneering, eye rolling and tutting. He has always been awfully absent minded anyway, which was why it took such a long time for us to realise there was a problem (Me and DSis). DM knew there was a problem but all she did was nag him about it so he was very frightened of seeking help, in case it meant he did indeed have dementia and he would have to rely on her for care and kindness. His decline in the last year has been incredibly fast - he has been in and out of hospital, because it isn't just dementia (there are problems such as amyloid protein build up on the brain) - he has the shakes, he can't follow any conversation, but the most stressful thing is the incontinence. It's like he has forgotten that you need to actually sit on the toilet to poo. DM can't hide her frustration and revulsion. I don't exactly blame her for this, as I am squeamish myself.

I just don't know what to do. She won't accept any constructive advice e.g. I said that I had heard that patterned carpets weren't a good idea for someone with dementia (their house is a riot) of pattern, or that I had heard that painting toilet doors in bold primary colours helps them remember where to go. I said that she would really benefit from meeting other people with similar problems, so that she is not constantly upsetting me and DSis - after all this is our very-loved dear dad.

I don't know what I'm asking really, just needed to vent.

cranberryorange Tue 01-Oct-13 16:14:51

You are being far to hard on yourself, its a real minefield trying to deal with things especially if your Mum isnt on the same page as you.

The diagnosis shouldnt make any difference to him accessing a better package of help. It should all be based on his needs and those of your Mum.

We have just dealt with a very similar situation with my nan who is now finally home on end of life care. It has been one huge fight after another sadly.

Thankfully DD works within SS so she was able to signpost us to everything available and we then pushed for everything we needed and thankfully we havefinally got it.

Social Services have been fantastic and really co ordinated everything from district nurses to night sitters to carers going in 4 times a day so they really could be the ones to help you .

You need to talk to your Mum and ask her what she needs to make her life easier and then ask if she would mind if you made some calls so that you can help her.

If you can sort out the practical side of things and know that all of his physical needs are being attended to then you can concentrate on getting pregnant and just visiting your Dad and loving him without all the stress and worries.

Lithium is a very heavy drug with lots of side effects so i would be questioning the meds asap. Have you contacted the Alzheimers society helpline? It might be worth a try.

http://www.alzheimers.org.uk/

HesterShaw Tue 01-Oct-13 16:19:31

Can you insist a relative comes off a drug if you think it's doing them more harm than good? Mum says she has tried to with regard to the lithium but that the psychiatrist won't countenance it.

Thank you for the reply and the link x

cranberryorange Tue 01-Oct-13 16:42:59

I have no idea about the drug side of things but i do know you are well within your rights to ask for a second opinion which is the route i would take in your position.

It all sounds very confusing having 3 different specialists diagnosing him, as they will all be dealing with his problems from their own view pointconfused

Can your Dads GP help push for an answer. Ours has been useless, but they cant all be like that!

Lithium needs to be managed very carefully so you need proper advice from someone, i would speak to the specialist you think talks more sense.

You really do need your Mum on your side to achieve anything so i would make her think that its her you are concerned with.

keep ranting on here, it wont get you anywhere but you'll feel a tiny bit better knowing your not the only one wading through treacle shit wink

HesterShaw Tue 01-Oct-13 16:59:20

I don't know....wading through shit seems strangely appropriate grin grin

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