Pat, yes we didn't apply for the job did we and people don't understand unless they have been in the situation. Swanning off for a few days would be about as useful as abandoning a toddler for a few days and expecting them to behave better on your return.
In the beginning I was assured there was help available I just had to apply for it, it was very stressful constantly looking for help. I was encouraged to ensure I obtained all the help I needed. I spent a long time running round in circles looking for said help. The reality is that there is absolutely fuck all help for me and the thousands like me.
Col, I have seen the Dr, I got the same claptrap about just needing to look for help and when pushed to offer me something the carers monthly email was all there was. The email covers a huge area both in terms of distance and needs. So there are long lists of clubs for children and their carers but nothing suitable for Steve and myself.
The Stroke Association are very helpful, they provide the three and a half hours break I get each fortnight this costs £50 a month. What about those who cannot afford £50, I believe that they will waive the payment in these cases but some people are too proud to accept charity. What I will do when Steve refuses to attend any more I really don't know.
Steve appears fairly well on the surface, he can walk and talk normally for short periods.
But he is in a constant state of confusion and anxiety, it must be terrifyingly him.
When I got home yesterday after getting the car fixed the first thing he did was to shout at me. It's like when you lose a child for a few moments in the supermarket, huge relief for him that I had returned but then lashing out verbally because he'd been scared.
On a lighter note I bought Beano a small ball as I noticed a while ago that he chased after a ball of wool I dropped.
We take the ball with us when we walk him around the marina, Beano doesn't have a Scooby what to do with the ball. He runs after it when I throw it but doesn't pick it up. He just stands beside it wagging his tail enthusiastically until I pick it up and throw it again. This makes me laugh watching him.
12 comments:
Oh, bless dear little Beano. He's getting pleasure just from interacting with you, even if he doesn't understand how to play "Fetch" just yet. He may well cotton on in time; one of my regular canine guests didn't understand how to play, even though her sister did, but now Milly the Jackahuahua has suddenly had the penny drop; and she spends quite a bit of time dribbling the ball around like a little canine footballer.
Hi Sue,
I'm a long time reader of your blog but first time commenting but I just want to say how much I feel for you. I'm in the same situation as you, my husband had a massive stroke when we were 49, leaving him unable to swallow properly , needing a feeding tube & totally unable to speak. My husband was medically retired, same as Steve.
Here we are 11 years later & i'm really struggling with ill health myself this year so have been referred to social services for respite care. I had my first carers assessment which I felt was useless & basically all I am getting is a carers card & monthly newsletters offering lectures & meetings that I can't attend. The lack of day care is appalling with all the cuts to social care, it's the carers baring the brunt of it. My husband gets ESA (in the support group & hasn't been asked to attend or look for work) & PIP. It will be a stressful time for you to fill in all the forms when they come, if you can think about what help you give & make notes for yourself, it might make it less daunting for you. If you have a CAB nearby I think they still help to fill the forms in.
I'm glad you have Beano , I got myself a little dog for company & it's the best thing I did, cos it's a lonely life for me now. We do go to the local stroke group which gives me an hour or so but my husband has very little interest in anything only wanting to watch the same thing over & over again. It drives me mad!
I really hope you can get all the help you need, make sure you have a little time to yourself even if it's like me & just a reading book in a comfy chair away from endless black & white films! Take care Sue xxx
Hi Sue
Has Phoenix daycare services in Liebenrood rd, Reading been mentioned at all? My Mum had Dementia following several TIA's and was picked up by mini bus early morning,fed, assessed,joined in social games etc and returned home about 2.30 in the afternoon for 2 days a week.
Hiya Sue, I feel so hurt for you. I bet that Steve does not see you as being his carer. It is just that it's expected of you. I to know how you feel but all summer I spent in the garden for respite.
You also do an awful lot for your family. Could they not give you a hour respite once a week.
Sorry I meant to add tell Steve you can't let the stroke club down as you need to cook once a fortnight and you will still have to go even if he does not. I'm sure he will go with you.
Such a tough time for you.I wish I could help.
Yes Hester, people just seem to assume you get all sorts of assistance, I'm being constantly asked what help I receive, but after 9 years I've had to accept there is none; except for "useful" advice; absolutely no practical help unless you can afford to pay a lot of money for it.
My biggest worry is getting to the stage where I can no longer manage, I'm not getting any younger (born same year as you) and it just gets harder to cope alone.
My daughter has autism and ADHD, and as a result also suffers from depression and anxiety. To sweeten the deal even further, she also recently developed POTS so is now also physically as well as mentally disabled. And I have fibromyalgia which means life would be a struggle even if she was completely well.
When she was first diagnosed, just with autism to start with, ten years ago now (she is now 22), I also spent a long time and a lot of energy looking for this fabled help that everybody told me was out there, I just had to ask, which nearly broke us all because there was no energy left to actually deal with the reality of the day to day life. Eventually I realised that I had to reassess my priorities and that we were on our own.
I mean, the kind of "help" that was on offer were things like parenting classes and support groups for me. Which can be great I am sure but I don't drive and who'd look after her when I was there? Exactly. Nothing for her of course, being "high functioning" she was not disabled enough for care or respite, but way too disabled to even join in with normal kids type of groups that might have given me an hour's break.
Anyway. In the end, what helped more than anything else was medication for her anxiety and depression, and that took many years to get doctors to even try, and then many more to find the right ones. And fighting all the way and being accused of all sorts because there seems to be a belief among medical professionals that if anxiety is caused by a condition of the brain - be that autism or a brain injury - that talking about it is the way to treat it, not actually try and counteract the chemical changes caused in the brain. Which makes precisely zero sense.
But it's something that might well be worth a try if you can get someone to listen, and if Steve's willing to take them. My daughter was resistant for a long time due to various things told her by doctors. We still often have a struggle to get her to take meds when a meltdown starts building up.
I am saddened by your situation Hester. It is a bereavement of your hopes and dreams for your life, and the loss of the person you loved, replaced with this changeling.
Life can be so unfair.
That doesn’t help you much.
It is worrying that this angry muttering has started, do you think it may escalate to physical violence, possibly when you are not paying him your full attention for a moment. It sounds very resentful behaviour.
Keep a record of all forms of aggressive behaviour, make sure that his GP and Consultant and anyone else relevant is informed, and that you have proof they have been informed. In the NHS at least there is a rule, that if it is not documented it hasn’t happened. We could get nothing done about a violent patient injuring a member of staff because the “minor” incidents which had escalated were not documented.
It doesn’t help much to know it may not be the person’s fault, constant criticism is abuse.
I am worried for you.
NellieGrace
I wonder, too, if it would help for Steve to take a mild anti depressant at least for a short while. It must be so hard for him to take in this new life he's been dealt and he is angry, perhaps just during this period of adjustment it would help.
In many ways, of course, it's even worse for you and you can see what is coming.
I am shocked at how little help seems available to you and wonder if you will have to move somewhere there is more support and life is easier than your current ( no pun intended) one.
I am so sorry life has dealt you this awful hand of cards.
When my mother started having CVA's and TIA's she became a nightmare. Not being a particularly nice person to begin with.
I was a qualified nurse used to the behavior of 'stroke' patients, but how I never strangled her I don't know.
It can become a difficult and lonely life, I'm so glad you have your little Beano.
Any offers of help, grab it with both hands. You may have to be very firm with Steve at times which will be difficult.
But as people have advised keep a journal of your problems, incidents and anxiety. Could non of the family sit with him for an hour or two every couple of weeks to allow you to go out somewhere, anywhere.
If he does become violent please make people, GP and Social aware of it.
I really hope I am wrong, but could he have the onset of vascular dementia? I would hope your Doctor would have ruled it out. Its just that his behaviour sounds just how my Dad became with the onset of it, he also used to cry out of the blue about things that had happened a very long time ago.
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