So many questions.......

[Sez809]

Hi, I'm new here and my eyes are filled with tears at reading through some of these threads. What an incrediby brave and strong support network you all are, I feel I may lean too heavily on you all. Its a long story, so here goes:

My Dad is 89, was widowed in 2003 (seems like yesterday Mum left) and not long after was diagnosed with Parkinsons Disease. He managed so well, until a couple of years when the dementia reared its head. We began with private care, in his home, early last year, and I have to say they have been marvellous. The care company employed one lady just for Dad, so he only has two carers currently on his team, great for keeping him settled. My sister and I take a part in caring for him too, when not at work. This is the first issue, we are not close at all, in fact I think the only thing we would agree on would be the fact that we actually never want to see each other again, once Dad leaves us. She is a very strong willed lady, and has firm opinions which sadly are always right, if you get my meaning!

At present, I am beginning to feel that Dad needs another carer on the team around him, and his care company boss agrees, for instance to cover absences, illness and emergencies. I personally would appreciate some weekend cover, as I spend every Saturday with him (over 13 hours a day) and much as I love him, it is difficult.

His dementia is worsening, twice recently I have had to tell him who I am, which I imagine will become the norm? He seems to hallucinate too, is this common of sufferers? He says the most bizarre things, for example his house is an air raid shelter, and he knows this because I (apparently) tipped over a sofa and there was rusty schrapnel underneath.

He is totally insistent that he will not go into "an awful prison" (care home) despite having placed his Alzheimer suffering mother in more than one home, before she ended up in a geriatric hospital unit at the time of her death. I did (rightly or wrongly) remind of his this fact, and he clearly remembered, because he became a petulant child and wouldn't answer me.

My sister feels another carer will be one too many for him, yet it is looking likely that he will soon need double up carers, to aid his movement as his PD causes loss of movement, and this cannot be provided without a third carer. How many is too many? I dont want to cause him distress, but I want him looked after. I know she also feels that I am renaging on my"duty" by asking for more cover for Dad, but honestly, I want to be his daughter and enjoy his latter years as much as I can, as that, and not his carer. He was always so incredibly private, we never even saw him in his boxers,that now having to wash his privates and change his incont pants breaks my heart.

I could go on and on, but you get the picture. I am sorry for such a ramble, and thankyou for staying with me, Really sobbing now, its hard isnt it? Love to you all, Sarah x

Sorry, I shoujld have also said that many, many times he tells me he wants this over, he wants it to end & I believe that to be true. The PD is becoming debilitating, he is almost blind and with the dementia........

 

[canary]

Hello @Sez809 and welcome to DTP.

Im so sorry to hear about your dad. You are right about the hallucinations - dementia that goes with Parkinsons often has a lot of hallucinations with it. The idea of your dads that he is living in an air-raid shelter seems par for the course to me. Mum was convinced that she had a school above her and the children made a racket going up and down the stairs and came in and rearranged everything. Needles to say, there was no school, no children coming in and, indeed, no stairs as she lived in a bungalow........

As dementia increases the amount of care required increases too, so it is inevitable that your dad will need more carers. There is no way that you would be able to cover it all yourself. There is also a health and safety aspect in that if his mobility is poor, then he will, indeed, need double up carers to move him safely, otherwise he could fall, or the carer injure herself.

Your sister doesnt seem to appreciate how much care someone with dementia needs - especially as it progresses. Im wondering how much time she is actually spending doing hands-on care for your dad? Forgive me if I am wrong, but I get the impression that it isnt much, and if so, then in my books she hasnt earned the right to tell you what to do.

 

[Sez809]

Hello @Sez809 and welcome to DTP.

Im so sorry to hear about your dad. You are right about the hallucinations - dementia that goes with Parkinsons often has a lot of hallucinations with it. The idea of your dads that he is living in an air-raid shelter seems par for the course to me. Mum was convinced that she had a school above her and the children made a racket going up and down the stairs and came in and rearranged everything. Needles to say, there was no school, no children coming in and, indeed, no stairs as she lived in a bungalow........

As dementia increases the amount of care required increases too, so it is inevitable that your dad will need more carers. There is no way that you would be able to cover it all yourself. There is also a health and safety aspect in that if his mobility is poor, then he will, indeed, need double up carers to move him safely, otherwise he could fall, or the carer injure herself.

Your sister doesnt seem to appreciate how much care someone with dementia needs - especially as it progresses. Im wondering how much time she is actually spending doing hands-on care for your dad? Forgive me if I am wrong, but I get the impression that it isnt much, and if so, then in my books she hasnt earned the right to tell you what to do.

Thanks so much. Actually, I gave the wrong impression, she does do a huge amount for him, in taking him to numerous medical appointments, she takes him out often, just for "enrichment".. I really cannot fault her level of care. I think she is almost too obsessive over him, tbh. When Mum died she went into a total nose dive, and for years (literally) she would not even go into their house because it was "him not her" living there. She took it really badly. Suddenly, in the last few years she has all but taken over with Dad. This is going to sound awful but I do wonder if it is because she is and has always been single, with no children, but has cats..........I am saying no more! xx

 

[canary]

OK, I take it back about your sister.
I still dont think she should dictate to you how much caring you should do, though, as it sounds to me like you do an awful lot.
The trouble with dementia is that it will take everything that you have and still want more, so you have to draw lines right at the beginning, otherwise you will head for carer burn-out.

 

[Jale]

First, I am going to apologise if I am speaking out of turn, but your sister taking your Dad to appointments or taking him out is not the same as having to physically care for someone. I found it difficult to look after my Mum, with washing and wiping her bum etc, lord only knows how I would have felt if it had been my Dad.
Personally I would be looking at increasing the number of carers before something happens (like a fall) and before you totally burn yourself out -been there, done that.