Im new to this forum, just found it via a link on our local carers support page.
A little bit about me.
My husband had a heamoragghic stroke in May and has just come home from hospital 4 weeks ago.
Its really tough as its just us and we are very rural Scotland so no visitors. Hes partially paralysed on his left side and the incontinence is giving me sleepless nights and a huge electricity bill!
I have given you your own thread so everyone can welcome you (not everyone reads Roll Call) but please do return to Roll Call and join in there too.
It sounds tough on you both.
Others on here have experience of dealing with incontinence and all the work (and increased bills) this brings. Many of us can also empathise about not enough sleep and feeling isolated and lonely.
As you are in rural Scotland does that mean no support with the caring side of things from paid carers?
Welcome from me too.
I can sympathise with having to deal with the incontinence - my husband uses the pads prescribed by the NHS and they are a huge help. It took around 18 months to get them though although the District Nurses progressed. Your GP should be able to expedite?
With regard to the lack of sleep, again you have my sympathy. There are quite a few of us on Roll Call who are often up at around 4am! My husband coughs a lot and although he sleeps downstairs I do hear him. I am a very light sleeper. No easy answers - I use ‘Sleep Aid’ occasionally and they do help. My husband is 84 and does not move around that much so we too have high heating bills although I can really only afford to keep the lounge downstairs and only use the Central Heating in the very worst of the Winter. We have a gas fire that he uses a lot.
Do you have a local Carers Centre? I realise that getting to meetings may be a problem but my local branch has a Carers Telephone Befriender service - may be a waiting list but worth considering. They can also signpost you to local support.
Please join us on Roll Call. Lurk for a while if you need to. We share how our day is going and if you are struggling, you will get a huge amount of empathy and support. Whatever you are going through, someone else will have been in a similar situation. No judgement. We do have some giggles too .
Hi @Vix.ess16 and welcome.
My husband had a mild stroke almost two years ago and it forced us to shut our business so I could become full time carer. He has mild loss of use of right arm and right leg is a bit wobbly. Since the stroke he has had a cascade of other medical issues including prostate cancer so I know what you mean about continence problems and extra washing (not to mention changing the bed at 3am). I have bought ‘bamboo’ waterproof sheets which are not crinkly or cold and that is under the main sheet as we have an electric blanket so I want to prevent that getting damp. We had a supply of pads for him from NHS but recently he doesn’t need as many. We also use bed pads but the NHS wont supply these or pull up pants so I buy both. The best price I have found for any of those is usually Age Concern.
I feel we have got off lightly, even though at many times it doesn’t feel like it. We live in a small village so getting to hospital appointments or going out involves the use of the car. Quite often we don’t see anyone for days on end - apart from sometimes when I take the dog for his twice daily walks, so I can empathise about loneliness. We used to see dozens of people every day and the sudden loss of that contact has been hard.
However, I have found the reception I got on the Forum has been great and that chit-chat on Roll Call thread is fun as well as wonderfully supportive. You’ll find that often we tease each other to help lighten the mood but are always totally there for each other. We do that cos we KNOW what it’s like and that is what I am sure you will find very quickly.
You can share as much or as little as you feel comfortable with as it is anonymous.
Graham still had bad nights sleep and is up to the loo 4 or 5 times - last night was an exception… just twice!!
Hope you find the site helpful.
@Melly1 Yes, we get one carer three times a day but he is finishing enablement and being “sourced” to mainstream. We are hoping to keep with the council as the local private ones arent that great.
We are currently waiting for a urologist appointment so we can get pads as we just can’t afford them! Honestly, being disabled is expensive. We are still patiently waiting for an ADP decision
Hi Vix - I am not certain what the situation is like in Scotland but in England the District Nurse (through GP) should be able to authorise incontinence pads etc without having to wait on a urologist. I suggest you try your doctor’s surgery and ask them what the procedure is. Our District Nurse said YES straight away and although I had to nag the supplier we did get them through quite quickly.
Our district nurse said no unfortunately as it has to be through the urologist first.
We’ll get there!
Just be aware that the re-enablement team are likely to be different care staff to the ones who deliver care after the re-enablement care has ended.
Is he claiming PIP / the new Scottish Adult Disability Payment / Attendance allowance?
We are waiting to hear from ADP. Probably get a decision nextvyear some time. The wheels of DWP turn slowly
Some benefits are backdated, not that that helps you just now, but would be useful after when the weather gets worse. Not sure about Scottish benefits though.
My husband and I care for out adult daughter with schizophrenia and I work full time. Welcome to the forum. We seem to discuss topics such coffee, sleep and how to keep cheerfulness going. We can be sad and angry at times and we exchange grumbles and virtual hugs
You can also get good advice from the forum.
“Coffee” ? Did someone mention Coffee? careful or @Charlesh47 will sniff it out…
I knew it - never takes you long!!
Vix, I know the Scottish system is different. What does ADP stand for? In England, you would probably be entitled to exemption from Council Tax once Attendance Allowance or PIP is granted, due to “severe mental impairment”. A term I hate by the way. Might be worth checking with the Carers UK helpline? I’m dismayed the hospital didn’t make arrangements for the pads before discharge. Might be worth talking to their PALS department (patient liaison) to see if this should have happened.
Adult disability payments, its the Scottish version of PIP.