Help with decision to go into care

allthecolours

I have significant spinal problems and atm i am in a real mess, I have carers am and pm. Then I'm alone most of the time, struggling to manage. My social worker has still not finalised my care assessment, she first started in September! But she is allocating me a pa. Where as that would have been great 6 months ago, now I do not feel I would be able to work alongside a p.a. as I am really struggling and in a lot of pain and weakness to just walk. I haven't been out since September as I cannot put my ramps down and I feel very isolated. So here is my question 🤔 are any of you in residential care? How do you find it and why did you make that decision? Is there anyone out there like me? I am so sick of the way my family treat me that, care from them is not a realistic option. Thank you for reading

helenjclayton

my mom chose the option as best for her, and to help us

MCMikey

Hi. I have a long term spinal problems (30+ years), but really bad the last 8 years, some marginal improvement the last couple of months. I don't need carers yet but do need help with various things and I'm just about managing on my own. I've had a care assessment, more as a just in case things spiral down, as I think they inevitably will. I'm in my late 50s and I'm physically challenged, but wouldn't want to go into a care home for the 'elderly', at least not yet. I cannot sit or stand upright for any meaningful length of time to go out to pubs, restaurants, cinemas etc as I need to sit reclined all the time otherwise the pain just ramps up. I'm also in less pain whilst lent forwards as long as I have something to lean on. I have also become very weak and unfit and most of the time I stay in on my own, with many periods of several days of the time during the year when I simply can't get out. In the last couple of months I've managed however just a few minutes lent forward on an exercise bike and built up my time on it just a little bit. I found it very hard to motivate myself and to actually do but if you possibly can try and keep some strength and build that up if you possibly can (doing what might work for you, seated exercises for example perhaps which I also do).

I'm sorry to hear that you're in a considerably worse condition than I am. You're obviously very articulate with your writing on here, so I assume wouldn't want to go into a residential setting where there's lots of other residents with dementia. When I've thought about a residential setting for myself, I'd want one with a good proportion of the other residents who think a bit like me, some of which have physical issues a bit like me, and some of who are a similar age to me. I wouldn't want one where all the residents are vastly older than me, not that there's anything wrong with being very elderly! I've seen other family members go into residential or care home settings, and I think you have to be careful that your social worker/adviser doesn't compel you to go into a setting where you're not going to be happy, so be clear to state your requirements and where possible stick to them, or at least some of them. Once a social worker has found someone a place, their work is done. Case closed, next. So stick to your guns, and make sure you're happy with the placement before you sign up. You can always move to a different residential home setting, but as you'll understand that's not always very easily done when you have such problems.

allthecolours

Thank you so much for your response. I am so grateful that you have encouraged me to look for an appropriate home. Life has to be better than it is at present. Thank you 😊

whistles

I would write down what you feel you need help with in the first instance.

I did actually want supported accommodation for myself but was told that wasn't an option as I could do more than I realised with the support allocated.

I would chase up the assessment as that's really unacceptable time frame wise. Chasing mine up got it in place within three months.

If you struggle to walk, what could you look at to help you with it, walkers, seats placed around the property, scooter?

Why can't the ramps be left down, why hasn't anyone put them down for you.

I am learning the difference between a carer and a PA, support worker, enabler. Going into care is a last resort and you lose all your independence and decision making. I honestly wouldn't recommend it at a young age if there are alternatives, ie increasing the hours of care and support you receive.

allthecolours

I do struggle to walk and use a walker, I cannot stand for more than a few seconds without support. I was thinking of putting in a complaint as the timeframe is ridiculous now and changes in my mobility have not been considered. I was asking about supported living but they said no.

My ramps cannot be left in place as its shared access. Not one of the family will help. And the council will do no alterations. Or put me as priority to move.

I think I will put in a complaint about the timeframe ans accuracy of my care assessment. Thank you for responding.

MCMikey

Hi again. Might I also suggest that you email your MP outlining your issues. I've done this on a couple of unrelated subjects and have always had a reply (may take some time). In any further communication requests for any changes/adaptations to the council and/or for supported living, mention that you've contacted your MP on these issues and are waiting for a reply, this can quite often spur things on in your favour.

whistles

https://forum.scope.org.uk/discussion/comment/1021421#Comment_1021421

So that suggests that they plan to offer you something else.

Sadly the time it took social services to get their act together went against me. They claimed I could actually manage to do more as I had been for three months.

I would be calling them tomorrow.