Hello All,
Like many of us, I suspect, thrown into caring out of nowhere. I’ve spent quite a bit of time reading many posts, so many things match with my experience. It’s both reassuring and frightening and I still have to come to terms with my situation.
Two words I have seen which hit home so much - “elderly toddler”. I’ll get back to that.
I am 50, back in February my 54 year old partner had a severe and life changing stroke. Out of nowhere, destroyed our lives and all our hopes literally overnight. He spent 7 weeks in stroke rehab, came home at the end of March. He has left sided weakness, limited mobility, no left arm or hand function, severe fatigue and other more subtle symptoms that have gradually come to light as other symptoms have resolved or receded. He is housebound if I am not at home. Whilst stroke is very amenable to rehab it can take years after the first 3-6 months to see large gains. He is unlikely to ever work again.
I have just come to the end of a phasing in period at work and I’m now back full time. I have no choices here - I don’t work, we lose our home, which we only bought 2 years ago. I try to see the positives here, we rented when we first moved in together and I am so glad that we bought when we did as it offers some security for the foreseeable future.
We met 6 years ago, both having had a rough time in the past. This happens, there are days where I want to scream at the unfairness of it.
His stroke and my new caring role came on the back of 6 years of, what I can only describe as utter hell, with my elderly parents.
I am really at the end of my tether. I am trying to come to terms with our life change, I have joined my local carers association and I’m doing their caring with confidence course. I really wish my Dad had been open to this kind of support when he became my Mom’s carer, instead of making a mess of it.
So, the history here is, Mom fell and fractured her hip in March 2013, in between two “now or never” knee replacements. In 2015 she received a Parkinson’s diagnosis, in late 2016 a vascular dementia diagnosis, but suspect she has mixed dementia. Her mobility almost completely went. She could not comply well with physio. Also suspect that as both terrified of being in a care home, my Dad kept her away from medics as much as he could and social services, until I lost it with them and called in safeguarding, I think in 2014.
My Dad knows best, my Mom believes, “well you have to suffer don’t you”. No! No you don’t! He is now 80, my Mom now 86.
My Dad refused to accept her Parkinson’s diagnosis, barked at her constantly if she so much as tried to move from her chair(which didn’t help her mobility or her confidence) and had major problems in giving her meds on time, which undoubtedly progressed her condition faster than necessary and ultimately led to the nursing care she has been in since December 2016, much earlier than might otherwise have been if he had allowed support much earlier at home.
This is so common, a friend of mine, almost exact same situation. Dad knows best, don’t cross him.
My Dad’s health was poor the entire time, poorly managed type II diabetic amongst other things. Again, Dad knows best, medics know nothing. He has turned into a person I do not know. Although when I sit and think over the years, probably this is him, always been him. As a child, young adult, you do not see it. I have lost my Mom and my Dad.
I understand my Dad’s entire life has been ripped away, they are cheated of their final years. I get all of that. Ultimately our entire family unit has been destroyed, not only by Mom’s dementia, but by my dad’s behaviour. What I don’t get is this willingness to wallow in it and destroy the health and the sanity of his children and his one adult grandchild. He even uses his other two young grandchildren to manipulate my brother into doing things for him.
I get the screaming, shouting and tantrums, my daughter gets the crocodile tears, my brother gets nothing; apparently has nice “visits” but underneath he is getting at the kids so they will say to him, Grandad, can we do anything for you. They are 4 and 7. It’s appalling and it makes me sick.
We both moved away, 20 miles or so, because we could not deal with it any longer, put some distance between us
Most recently, he had an emergency admission in June due to severe cellulitis and came out of intermediate rehab 3 weeks ago. It happened just as I was returning to work. Does anyone else find this? A crisis happens at times that are most difficult for everyone else? Or on bank holidays. That was a typical one for my Mom. Anxiety & agitation a big part of Parkinson’s, she would stress with holidays coming up or if she knew we would be away and she would often precipitate a crisis. So we stopped telling them until the last minute, then stopped telling them at all.
So this latest crisis, due to my dad’s behaviour, refusals to get support in, the years of hell we have had, the fact that I can’t continue to deal with it, I wrote to his GP and the intermediate care team highlighting all of my concerns and formally withdrawing all care support for my Dad.
I feel terrible. All we want is to see him safe and content and to have a normal relationship with him, but I’m starting to realise that this will never happen.
The care team rang me on the back of my letter. They discharged him after 2 weeks of reablement because he was doing everything before the officers arrived so they could not assess him properly. (We’ve always known he lies, distracts and manipulates and we do tell everyone any time he is in hospital). He refused all their offers of help. We do think there are mental health issues and whilst in rehab he was offered help with this. He flatly refused that. Good old British stiff upper lip. Works every time, no problems with my mental health thank you very much.
Yet it is evident to everyone that he cannot cope at all. He tells me everything is a struggle. His house is awful. His mobility is now very poor and he is housebound at the moment. He cannot take care of business either and with Mom in a care home, he’s got business he must attend to. Overwhelmed, head in the sand mentality. I know of course that nothing can be forced upon him, he has capacity.
We are now waiting for the next crisis. My brother said, “I told H(wife), don’t hang your hat on Christmas in Cornwall.”
What scares me really is I am now third generation spousal carer - me, Dad, his Dad. Second generation family carer (Mom for her Mom, her Dad, her Aunty). I do not want this for my daughter’s future. She is a student nurse. Busman’s holiday anyone?
