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New to the forum

Posted: Sat Oct 12, 2019 12:59 pm
by Seasalt-and-rainbows
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?

Re: New to the forum

Posted: Sat Oct 12, 2019 3:36 pm
by Melly1
Hi S&R,
welcome to the forum. What a complex situation.

Well done for going back to work, though you must be exhausted. What support do you have in place both to assist your husband and to assist you with your extra responsibility? Does your husband have paid care support in addition to the support you give him? When I was working a five and then in later years a four day week, I paid for a cleaner to do 2 hours cleaning a week, it really made a difference and was worth every penny.

Is your husband still receiving physio? There might be stroke clubs in your area. Although he is probably younger than some of the other stroke victims, he would still benefit from going. Often there are volunteer drivers to help with transport.

Is your husband claiming PIP and ESA/Universal credit?

It sounds like you and your other siblings have done the right thing, putting some distance between yourselves and your Dad. He sounds a very difficult man to help. You really have tried your best. Take heart that despite what has gone before, your Mum is now being well cared for and is comfortable and safe.

For peace of mind, would it be worth you and your other siblings setting up as many direct debits as possible with/for you Dad so bills etc are automatically taken care of - if he'll let you of course.

Melly1

Re: New to the forum

Posted: Sat Oct 12, 2019 3:45 pm
by bowlingbun
Welcome to the forum. In total I've had TEN carees, much of what you have written is so familiar to me.

On the verge of a breakdown, newly disabled, newly widowed, with a business to manage, a housebound mum, and disabled son, I had reach the end of my energy, physical and mental.

I had counselling. Utterly life changing. From feeing increasingly hacked off that I was in real pain, overwhelmed with work, waiting for 2 knee replacements yet still I was given more and more jobs to do from those who were supposed to love me!

Counselling helped me see that
I was still being the dutiful little girl to my parents when I was 60+ years old
Mum could speak up for herself, but preferred to have my help, regardless of my disabilities.
The faster I did jobs for mum, the faster she invented them!
It was MY choice what I did for her, the speed I did it, and what I did.
Most importantly,
I had the RIGHT to a life of my own.

Re: New to the forum

Posted: Sat Oct 12, 2019 5:43 pm
by Seasalt-and-rainbows
Thanks Both for your replies :)

I understand the dutiful little girl thing. That's what my parents play on. My Dad once screamed at me "I WANT MY FAMILY TO DO IT!!!" My Mom, big on shame and guilt. I just started counselling. I'm divorced, I've been here before with that, very familiar with it.

I hadn't really thought about it as a complex situation, but you're right, it is. I have withdrawn support for my Dad, but really it's just opened another can of worms, as he will not do what's necessary for Mom, then I will have to step in, which technically, is care support. I can't even do care managing for him, he plays so fast and loose, I'm tied in knots when I try. So, he's on his own now with all of that.

It's reading posts on the forum that's made me realise there's a lot I don't know and I need to know it pretty quick.

My partner can self care, they are big on rehab and actually Worcestershire has excellent post stroke care. Whatever inpatient needs are plus 6 weeks of daily community care & rehab and currently he has once weekly rehab in a neuro clinic. As you say though, he is the youngest by about 20 years. He loves his own company though, so he manages being housebound quite well. Longer term, he might change his mind. Neither of us are joiners really, but I've long since come to the conclusion that I need to deal with that and learn to be a joiner.

Everything he can do, he had to learn again including walking. Everything is slow though, it takes at least an hour for him to shower and dress. He naps everyday somewhere between 2 and 4 hours due to physical, cognitive and neurological fatigue. Mobilises with a stick, wheelchair for any distance or when fatigued and needs aids.

PIP, the form is like some kind of book, four times I wrote it by the time we'd made notes, gone over it with our Stroke Association rep, pencilled it in and finally inked it over. He had an assessment at home, got the enhanced rates no problem, I'm relieved that that went hassle free. We're waiting now on ESAC and in the background he's aiming for medical retirement as he's still on sick pay.

I don't manage the house very well, it's hit and miss. I expect I will get a cleaner in. I'm just back full time so I can now get a good idea of how things will go with what feels like a normal pre-stroke routine for me. Part of me thinks it's not that important, but I can't deal with clutter as I feel suffocated. It's tiring though to do infrequent clean ups and it is almost all on me, no more sharing jobs. :(

I was on a carers course this week, we covered the day to day things we have to do, scribbled it all down on a flip chart. It's incredible, what just one day of full time caring actually is. Someone said 24 hour surveillance another said managing the physical environment, I said it sounds like Mission Impossible.

Re: New to the forum

Posted: Sat Oct 12, 2019 6:14 pm
by bowlingbun
Let your mum and dad sort themselves out, or ultimately accept help, because your intervention means that they can avoid the truth - they need outside help. Otherwise you could be like a friend of mine, caring for his mum until she died … at 104! That's the brutal reality of it.

I think you are absolutely right to go back to work and get help with the house.
However, you will feel a lot better if you can mentally to sort out the clutter.
Whose is it?
Who brought it into the house?
Do either of you follow William Morris's rule, of bringing nothing into the house unless it's useful or you consider it beautiful?
I'm still battling "stuff" that is in my house because someone else died.
What I'd like to get rid of most of all is all the paperwork concerning my son, brain damaged at birth, but I can't get rid of that until I can finally sort out Social Services. It may be around some time!! In the meantime, it's in ring binders as soon as I can manage it.

Think of reaching the stage where you control the clutter, rather than it controlling you.
I also have "stuff" that relates to my old life, which was very different before I was widowed, it's gone from a mountain to a molehill.

Re: New to the forum

Posted: Sat Oct 12, 2019 6:42 pm
by leah_1902
Seasalt-and-rainbows wrote:
Sat Oct 12, 2019 5:43 pm
Thanks Both for your replies :)

I understand the dutiful little girl thing. That's what my parents play on. My Dad once screamed at me "I WANT MY FAMILY TO DO IT!!!" My Mom, big on shame and guilt. I just started counselling. I'm divorced, I've been here before with that, very familiar with it.

I hadn't really thought about it as a complex situation, but you're right, it is. I have withdrawn support for my Dad, but really it's just opened another can of worms, as he will not do what's necessary for Mom, then I will have to step in, which technically, is care support. I can't even do care managing for him, he plays so fast and loose, I'm tied in knots when I try. So, he's on his own now with all of that.

It's reading posts on the forum that's made me realise there's a lot I don't know and I need to know it pretty quick.

My partner can self care, they are big on rehab and actually Worcestershire has excellent post stroke care. Whatever inpatient needs are plus 6 weeks of daily community care & rehab and currently he has once weekly rehab in a neuro clinic. As you say though, he is the youngest by about 20 years. He loves his own company though, so he manages being housebound quite well. Longer term, he might change his mind. Neither of us are joiners really, but I've long since come to the conclusion that I need to deal with that and learn to be a joiner.

Everything he can do, he had to learn again including walking. Everything is slow though, it takes at least an hour for him to shower and dress. He naps everyday somewhere between 2 and 4 hours due to physical, cognitive and neurological fatigue. Mobilises with a stick, wheelchair for any distance or when fatigued and needs aids.

PIP, the form is like some kind of book, four times I wrote it by the time we'd made notes, gone over it with our Stroke Association rep, pencilled it in and finally inked it over. He had an assessment at home, got the enhanced rates no problem, I'm relieved that that went hassle free. We're waiting now on ESAC and in the background he's aiming for medical retirement as he's still on sick pay.

I don't manage the house very well, it's hit and miss. I expect I will get a cleaner in. I'm just back full time so I can now get a good idea of how things will go with what feels like a normal pre-stroke routine for me. Part of me thinks it's not that important, but I can't deal with clutter as I feel suffocated. It's tiring though to do infrequent clean ups and it is almost all on me, no more sharing jobs. :(

I was on a carers course this week, we covered the day to day things we have to do, scribbled it all down on a flip chart. It's incredible, what just one day of full time caring actually is. Someone said 24 hour surveillance another said managing the physical environment, I said it sounds like Mission Impossible.
Get help with the hoarding. I’m a lifelong hoarder myself but six or seven weeks ago I realised it was too much. So I put stuff into cardboard boxes, and also donated unwanted things to the local charity shops. Can you sell unwanted belongings at a table top sale or not? Talk to the doctor and see what can be done to help your parent. https://www.nhs.uk/conditions/hoarding-disorder/.

Re: New to the forum

Posted: Sat Oct 12, 2019 7:02 pm
by Seasalt-and-rainbows
I know it, Mom has the constitution of a herd of oxen. Her capacity is long gone and she is bedbound but she just keeps on going. It's hard to watch because I know this is her greatest fear after she had her own mother go through exactly the same thing.

Well, our clutter is at the low end I'm mostly just too knackered to keep a regular routine. The perils of living with a one armed man, his arm is a dead weight that he sometimes forgets about and it sweeps things off onto the floor. Long enough and any clutter will be in the bin anyway... In the early months he really didn't know it was there, he said, I like to keep an eye on it, I never know what it's getting up to if I don't! :lol:

The hoarder in the family is Dad. We have filled skips for him. Now he pays people to remove some of it, then buys stuff to replace it. He won't get proper help. It's his MO to get us kids to wait on him hand and foot!

Re: New to the forum

Posted: Sat Oct 12, 2019 7:24 pm
by bowlingbun
When you talk about dad doing "business" what sort of things are you referring to?
Do you think he is beginning to suffer from dementia?
I can't see how the reablement team can just wash their hands of him if his place is a tip.
If it gets bad, then maybe there should be a Safeguarding referral?
Does he own, or rent his home? Have over £23,000 in savings?

Re: New to the forum

Posted: Sat Oct 12, 2019 8:38 pm
by Seasalt-and-rainbows
It all focuses around capacity. He doesn't need personal care and social services don't get involved in anything like a home help. He's expected to put things in place for himself - he has been provided with details of people who can support him with this. His problem is initiating the contact and chasing things up. He is expected to play his part in his own rehab and he is not. His belief is that admitting he cannot cope (though it is obvious) gives social services licence to "cart him off". I'm afraid that what is good enough for my Mom is certainly not good enough for him.

No matter how many times I explain to him that this is not how it happens, he refuses to get support. Yet continually manipulates us to do things for him.

We often wonder about dementia. His GP says not, although acknowledges there's potentially mental health issues there. However, my Dad refuses to talk to anyone who may be able to help him. But tells us he is depressed, he cannot live like this and so on.

I suspect his problem is, people don't stand to when he snaps his fingers so he screams down the phone at them. I heard him once trying to book a transport ambulance for Mom when she was still at home.

His finances are a minefield, there are longstanding problems as well as the intricacies of social care funding and again, he refuses to get expert advice. We have sowed seeds about advocacy for years, finally he decided he would do it when he was discharged. He told me he'd arranged an appointment. When I asked him about it a week later he said he'd got no idea what I was talking about.

Here's an example, Mom had a period in hospital. As part of her discharge, a care plan was written for Dad to have home helps in. That would support him, to support Mom. He would have to pay, whereas Mom's 4 care calls were fully funded. They started attending, then suddenly stopped. Suggestions of disputes about the bill, stuff like that. Never got to the bottom of it.

And another, Mom needed a rise & recline chair. He wouldn't deal with it. Eventually it got mentioned to a social worker, so they sourced one for her. Dad decided he liked the look of it, so ordered himself a £1400 all singing all dancing chair with massage facility, within a week of Mom's chair being delivered.

That is what we are dealing with. There are days where I think the moon isn't far enough away. My daughter says maybe Pluto.

Re: New to the forum

Posted: Sat Oct 12, 2019 9:28 pm
by bowlingbun
The moon is not enough...…..
Clearly nothing is ever going to please him, so really there is no point whatsoever in trying.
Horrible I know, but I spent years trying to please others and realise now that there is little time left for me to please myself in. Don't let this happen to you. Every day of YOUR life is important too!