hindsight is a wonderful thing!
For the six months before Dad died, he wasn't eating properly or taking his medication regularly and when I visited Mum seemed distant and a little disinterested.
Their whole life evolved around each other and my brother and me and the grand children. So we were all totally focussed on not splitting them up - "the ideal". There were actually days when Dad greeted me with "come on then let's go" - wanting to come home with me.
He had PD and AD and Mum was full time carer (latterly with Carers coming in 3xdaily). At one time Dad was hospitalised because he was so poorly - he had to be re-hydrated and the only other treatment was that he was being fed! Mum stayed by his side 12 hours a day. We had to draw her maps of how to get back from the Ward to Reception to get a taxi home! Why on earth did we and everyone else not see sense - Mum was no longer able to cope and Dad was suffering!
Mum was so very distressed and frightened to be on her own - I lived 60 miles away, brother lived on next road. He wouldn't have her to stay for that period at all and wasn't really very supportive - his choice!
Anyway, Dad improved considerably and started mentioning going home - I spoke to the Consultant and told her how distressed Mum was and that whatever services she would like put in place I would make sure they were there.
Meals were arranged for delivery each day, Carers morning, mid-day and evening - with the instruction to watch while Dad took his medication and to get him breakfast, lunch and tea (easy food stocks were purchased: porridge, cereals, soup, baked beans, bacon, eggs, bread etc) with the meals being delivered all should have been okay. The carer was to get Dad up, washed, dressed in the morning and prepared for bed of an evening. All should have been okay.
But it wasn't - although I made it perfectly clear to Mum that the Consultant was only prepared to allow Dad to leave hospital IF she promised to let the Carers do all of these things. The first couple of days were okay but then when the carer attended Mum told them Dad had had his medication and had eaten. The Carers should have noticed that there was no evidence of dirty plates and that the medicine pack was not right - but they didn't.
We were all concerned, Mum's sisters visited 2-3 times a week and even spoke to Mum's GP when he was there (having been called out to 1 of many infections) but he just didn't seem to take any notice - seemed happy to keep prescribing antibiotics - we found loads of them after Dad died - in drawers/cupboards etc.
I suggested respite care for both Mum & Dad - Dad actually agreed that Mum was doing too much and that her leg was bad (when we visited, we fed him and he was pretty compos mentos (is that how you spell it), but Mum just would not hear of it.
In short I failed my Dad - he died (although not on the death certificate) from starvation, malnutrition with a cut on his face (following a plate throwing incident), with bed sores!!!
Mum truly did her best - but she was not well, not just not coping.
If I could turn back the clock (and still know what I know), there's no doubt at all in my mind what I'd have done differently. I would have insisted on the respite care for both of them and had things not improved would have arranged for them both to go into a "nice" Care Home - it would not have been easy but I definitely would have taken that route.
My Dad was wonderful and I loved him so much but let him down - on the night following Dad's death I stayed with Mum (as did her 2 sisters) - I'd planned to stay a few nights. BUT I stayed awake with her all night reassuring her that she'd done everything she could and that she'd done her best and that Dad loved her so much etc etc. In the morning, BOMBSHELL, Mum became horribly antagonistic toward me and everything I said was wrong. My aunties couldn't believe it! I tried - I sat quietly with her not saying a word, offering no opinions or advice. She just cut me off. I left, drove the 60 miles home - what a journey. She suffered from that because she was on her own for the following "very important settling" nights.
Mum asked my brother to do everything for the funeral etc - which was fine because he is the eldest. I tried to support him wherever I could (from a distance). Even at the funeral Mum was so distant.
Mum has since been diagnosed with AD - lives in a home close to me and we sit playing crosswords, doing puzzles and I'm so pleased to have her back. I've not really grieved for Dad though and miss him so terribly and am really surprised that I get no sense of him.
God, I'm rambling so much - must get on and do some work!
I hope some of my "hindsight" is helpful.
EllieS