New Member needs help!

[stardust123]

Hi, thank God I have somebody to talk to now I've joined this forum. My Dad has been diagnosed with dementia within the last 6 months. He's in hospital at the moment due to an infection which got out of hand. He was struggling before he went in but seems worse to us now than a month ago. Short term memory really bad. He has scored 19/30 previously at home and also in hospital 22/30 on the memory test (which confuses me, as he seems much worse now than at home). They say that he's got 'mental capacity' according to the psychiatric tests. They are planning to discharge him with a carer coming in 3 times a day. He will be coming home alone !! He has been driving up until recently but can no longer do so, so this will affect him immensly as he can't walk very well, but it is necessary obviously that he doesn't drive anymore. Problem is he's forgotten already that they have told him he cannot drive. So he will come out and wonder where the car has gone! He has been an active man, mooching around all over the place and will not wait in for carers! He will forget that they are coming anyway. Although he cannot walk very well, we believe he will try and get on the bus to god knows where and get lost. He is coming home alone as Mom was taken into temporary rehab care whilst Dad was in hospital, we don't even know if she's coming out again. Also, he's diabetic!!! Last year when he was home alone, he had a fire in the kitchen. We also believe he was taking stuff from shops without paying for them. He's not keeping himself clean and a bit incontinent I think too. My question is, how can they think that someone like this can cope on their own? Looking at previous members experiences, I know that mine must seem trivial as other people have much worse cases to cope with. I have my own business and 2 kids under 6, so I am limited to what I can do. But I feel like if he comes home, I won't get a minutes peace through all the worry. The occupational therapist seems to think it's all alright, but they have assessed him in hospital, not in his own home and I wasn't present at the assessment. He wouldn't even know how to use the microwave, what about if he forgets to lock house up, loses keys etc? Also, my Mom has depression and feels like she can't cope with him at home (she is quite poorly herself), so where we go with Mom I don't know. Another problem is I go on holiday on 3 weeks, so no support for him at home. (I can't cancel for my own sanity! - sorry if this sounds selfish). Could I ask for the hospital to put him into rehab/respite for a bit ? I'm waiting for social services to contact me re. all this. Any advice would be great - I am exhausted with all the worry.

 

[christine_batch]

Dear stardust,
Welcome to Talking Point. Have you contacted your Local Alzheimer's Branch, Age Concern, Help the Age, Crossroad, Princess Royal Trust ?
Your post reads that your Mother needs respite as well as help for your Dad.
I hope you do not think I am writing out of context but you also have a family and although you want to do the best for your parents, please do not let S.W. Hospital, palm you off with things you are not happy with.
Later on more members will come on line and offer you advice.
Best wishes
Christine

 

[christine_batch]

Sorry forgot to add that you post is not trivial to us on Talking Point, we are all dealing with this illness together.
Christine

 

[BettyL]

Hi

Poor you - you're not being selfish at all. I have been through something similar and the best advice I can give is don't wait for Social Services to get back to you - keep ringing them, make a nuisance of yourself if you have to. It's a sad fact of life that Social Services are at full stretch, so unfortunately you will probably have to pursue this like a dog with a bone. But it's really important to get things right.

If you're not happy with what the hospital are telling you, challenge it. You and your mum (but mostly you by the sounds of it)are the people who will have to look after your dad at home. Ask to speak to his consultant and tell him/her of your fears and worries. A call to the consultants secretary should get you an appointment. Be polite but insistent and persistent.

Also I think most hospitals have PALS, a group of people who help patients or their families with complaints and advise. You should see the service advertised all over the hospital - please use them if necessary. They were excellent when I had problems with both mum and dad in hospital.

And take that holiday!

Good luck
Betty

 

[Lynne]

Hi Stardust

It does sound as though your father needs to be 'in care', at least until you are back from your holiday. Even after that, I'm sure you are quite right in your fears that - once back in his own home - he will get back into his old ways, and probably forget about the carers who are supposed to be coming in.

When badgering SS/Consultants etc., don't forget they have a "DUTY OF CARE" to consider his personal safety and well-being. Your Mum is in poor health herself & cannot be expected to take on this responsibility, and neither can you. As others have recommended, 'call in the cavalry' of support from your local Alz. Society support group, Age Concern etc. This IS an emergency situation, and coould easily become a life threatening one. Don't pull your punches or mince your words, state things as they are (as you have here) and DON'T let them 'assume' you into taking on a caring role you can't fulfil.

Best wishes

 

[stardust123]

Hi all

So grateful for all the help, I have already contacted Alzheimers who have been a big help, and may contact PALS today. The mental health people hospital that he is under tell me that I can ask for him to be assessed within his own home prior to being sent out (they have only assessed him in hospital, what good is that?!!) - any comments? Could I insist on him being cared for until I get back from my hols or until my Mom is home? Thanks for the comment particularly from Lynne - I must get tough but a big part of me feels guilty because I feel that I'm not giving my Dad a chance to 'cope' on his own. Am reluctant to chase social services because I think the longer I leave it, the more chance I have got of him staying somewhere he can be looked after until I come back off hols (this is low, I know!) Any additional feedback would be much appreciated.

 

[Lynne]

Stardust, quite frankly I'm afraid I think you are being too optimistic in "giving my Dad a chance to 'cope' on his own".
It's very difficult to accept that a parent who has always been intelligent & resourceful is losing those qualities & abilities, (my own Mum being a case in point) but dementia is a one way street.
He probably cannot learn anything new, adjust to new routines (like carers coming in, or using a microwave to prepare his own meals).

I would say he is a prime candidate for emergency respite care. Push for it. Guilt is the price we all pay for loving them, but NOT a reason for taking on more than we can reasonably cope with - that in itself could be irresponsible if/when it fails.

 

[BettyL]

Hi Stardust

Lynne is absolutely right - please take notice of what she has to say. And, if you don't mind me saying, SS don't work that way. If you don't contact them they will just assume you are happy with the arrangements made.

Hope everything works out well.

Regards
BettyL

 

[Carolynlott]

Hi Stardust,
Just to say that your situation sounds very much like mine was a few months back. Dad's dementia worsened considerably and Mum couldn't cope any more (she has AD too, just not as advanced yet). It seems to be a natural instinct to hope that they will cope - just for a bit longer - and that things might not get worse. Unfortunately this is a one way thing and the only way is worse. Pretty soon you'll find "a little bit incontinent" is not bothering to use the loo at all. Plus, as has been said already, there is no way new things/routines can be learned. Even things they have done for years and years are forgotten. Plus the behaviour stops being a bit silly or forgetful and becomes dangerous.
Sorry if this sounds depressing - I must stress this is just my own experience. My folks weren't the type to have carers coming in at home, so Dad had to go into full time care, and each day that passes it becomes more and more apparent that it was the only solution.
Perhaps you will be able to get a good support network set up if your parents will accept it.
Best wishes,
Carolyn

 

[stardust123]

Hi

Thanks everyone, your comments have been really useful. Going to contact Social Services today and ask for a meeting with them prior to their assessment with Dad and tell them everything I have told you guys and what your comments were too! Also, I'm going to insist that there is no way he is coming home alone if at all. I want a full joint assessment for him and Mom before any decision is made. If he apparently has mental capacity and he is saying he wants to come home, the OT is telling me that because of the human rights issues etc. they have to honour his request! Any comments on this one? Thanks all.