By the amount of people who are struggling, every time I do a post about caring for Steve I get so many comments, mostly on the same theme of carers being told "There is plenty of help, you just need to look" and the reality that there is no help.
If you are caring for someone who has had a stroke look for
https://www.stroke.org.uk
There are groups all around the UK. They provide the three and a half hours respite a fortnight I get, it isn't much but it is something. They will also provide transport to and from the venue.
Most carers groups are aimed at specific disabilities and don't deal in generalities.
My children do help where they can but one of my DD's has three jobs and four children. Steve is their step dad not their father but they still do what they can.
The other DD saves little DIY jobs for Steve, we go over and he puts up coat hooks and curtain rails etc. She could do it herself but knows he likes to be useful.
One of the biggest problems with Steve is his refusal to accept that he needs to get out, either for my sanity or his. He also refuses to accept that he is disabled which is why he will soon stop going to stroke club. He will not attempt to join anything else because he's worried he won't cope. He is his own and my worst enemy. He doesn't understand why I need a break, he claims to be happy pacing the floor or sitting playing games on his tablet 24/7. I need some social interaction.
Scrimping and saving, ranting and raving. Past retirement age.
9 comments:
Is there any social space you can go where he can take his tablet with him? I'm thinking of somewhere like a gardencentre cafe, where he can be doing his own thing while you have a brief wander around?
Several years ago a dear friend of mine had his third stroke, and his wife has told me how badly it has affected him, leaving him with the reasoning ability of a small child. Knowing the lovely, clever man he was, he would not have wanted to be putting Su through what she has to cope with. The help she gets she has to pay for.
You have my full sympathy. My experience was different from yours, I ended up caring for my mom after she broke her leg at 82. It became apparent as time went on she had more health difficulties and Parkinsons was suggested. Mom immediately decided she was not going to any more medical appointments and refused to leave her flat. She had no official diagnosis and full mental capacity. She refused all carers so I had to do everything for her as she gradually got worse over about 5 years and became completely incontinent. I couldn't go on holiday with my family and it became hard holding down my part time job and juggling my own home and family. Like you, I tried really hard to get help from somewhere but without moms agreement (which she wouldn't give) there was none. I suppose a lot depends on how mentally tough you are but I found it the worse experience of my life, and like you say, unless you gave experience of it it is difficult to fully understand. I hope things improve for you and Steve.
I feel your pain despite not having been a recognised carer. I say that because my hubby hasn't had a stroke but he is an insulin dependent diabetic of 40 years. His memory is really bad which is by far the most frustrating thing. I'm constantly asking has he done this or that. Has he checked this or that. Does he have any work mates who can come round and spend time with him. Is he safe by himself if you did go out? Is there anyone at stroke club he gets on with? Perhaps they can meet up away from the club.
Evidently this is a problem around the world. My dad is elderly and suffers from many health issues, including mobility problems, asthma, some dementia. There seems to be no help for him except “private pay” services...which would soon drain his savings and actually dont provide the respite my mom needs. She is ruining her own health, while I watch helplessly.
He has been in thee er hospital 20 times this year alone...and had follow up physical therapy twice. It’s all just a band aid instead of any type of improvement or stability. Mom is a very social creature and suffers in her self imposed isolation. He is happy as a pig in mud, as she caters to his every whim...slowly losing herself in his needs...
The situation is both outrageous and sad.
I feel like I’m losing both of them at once, victims of his illness and her insistence on caring for him.
Is there a men's shed near you. There are quite a few around the country now. A place for men to gather for cups of tea, men chat and there are tools etc. He might like that.
My gosh, I am astounded at your patience and love. What a difficult life as one is slowing down in the autumn years.
Is there a library near you? You can both sit and read a newspaper or magazine while other people mill about nearby, so you are in a different location and don't feel so isolated. Our local libraries have delicious coffee (small charge), and movie afternoons, book clubs, and social groups, all free for seniors. You could be chatting in the social group while Steve sits with his paper and coffee.
Our local grocery stores have "Eat Together". which is a very inexpensive monthly lunch, wherein isolated seniors come to eat and chat. There is usually a speaker who speaks on a health issue for a few minutes. There are also afternoon cooking classes that are very inexpensive and provide a light lunch and loads of fun. Couples come as a date 'afternoon'.
Some people go to more than one store/cooking class a week.
We have a Senior Centre near us also, that provides a myriad of activities for very little cost.
Your 50 pound respite sounds terribly expensive to me. I live in Ontario, Canada.
I guess that I am suggesting you look about and see if there are activities that you can enjoy that are outside the box of social services.
We also have near us several different Lifelong Learning programs for seniors. University professors or other professionals who lecture about general topics of interest. Minimal cost again.
Hugs x
we had a nasty trip out the other week a so called long term friend stood in the church cafe queue and commented to me " i dont know why you dont run away hes so boring and hes always repeating himself " Silly really that such a trivial comment compared to some weve had just knocked the stuffing out of me , I just went home locked myself in the bedroom and sat and cried, I managed a whole 15 minutes on my own before he wanted a cuppa and couldnt find something right next to him .
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