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Getting the right support is a minefield - Carers UK Forum

Getting the right support is a minefield

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My dad will soon be 86 & while his mobility has deteriorated over a number of years, in the last year or so this has been accompanied by short term memory loss which can be random & unpredictable.

He recently got back home after a fall and a month's stay in hospital. Thankfully he had a care assessment & now has carers twice a day & will also get a cognitive assessment shortly. My dad lives alone in sheltered housing where there is a part time warden.

Having read a number of posts I think my dad is lucky but I'm his only child, live 120 miles away & work full-time. His remaining network living locally is not fit or able to be a first responder in the event of his community alarm being activated & I'm being told I live too far away.

I've been visiting weekly, sometimes more, since he got home from hospital & do his shopping, cleaning & deal with admin & banking. I speak to him everyday.

I'm finding the whole thing a complete minefield & struggling to find information to come up with a solution to deal with these ad-hoc situations that are not emergencies but where there is an expectation that someone physically checks on my dad. My concern is that the sheltered housing provider will say he needs to find somewhere else to live if he doesn't have a closer contact.

It's been suggested by an Occupational health therapist that I should move my dad to be closer to me & while that might make my life easier & I could see my dad more regularly, my house is not suitable for my dad's needs & giving up my job or going part-time is not an option. My employer has been very understanding with last minute time off but I can't expect to continue doing that. My dad knows no one here & I'm not convinced it would be in his best interests to move from the place he's lived all his life. I don't think he'd agree to move.

Am I being selfish here? I feel so guilty about my dad, my job, friends I'm cancelling at the last minute. I just want to get the right support around my dad - & happy to pay for it within reason - but it's so difficult to know where to go. I feel like I'm run ragged. I'm sure my dad is not the first person in this situation where their local network is limited & family lives a good distance away, surely there must be a solution?

Apologies for the long-winded rant, I'm just so frustrated & sad about the situation.
Hi Els30, and welcome to the forum.

Up until 15 months ago, my Mum was in sheltered accommodation but had been spending months at a time in hospital. During her last major spell in hospital, it had become clear she could no longer manage alone and was having spells of delirium, during which she often had falls, among other things. Her discharge from hospital that time was into a care home. After I'd made it clear that there was no way I would be taking on Mum's care myself. Anyway, the point was that I had a choice and exercised it.

You have a legal right to refuse care: you can choose your own life. Depending on your Dad's needs there are other options available. All will cause some disruption to his life, which may add to any confusion he might have, but there are times when that's inevitable, I'm afraid.

What you really need is more detailed advice: the Carers UK Helpline may well be able to help with that - the Helpline is open from Monday to Friday between 9am and 6pm - 0808 808 7777, or you can email the Helpline on advice@carers.uk
Thank you for your kind reply Charles_2112.

I think my dad's current situation may be better than the place you found yourself 15 months ago with your mum but I do understand things can change very quickly. I'm hoping the cognitive assessment my dad is due to have in about a week's time also provides a good indication of the likely direction of travel.

I will definitely take your advice and contact the helpline with my questions. Many of the posts I've read are heartbreaking & I can see the vital importance of being clear from the outset about what you can & cannot do & understanding where you stand. I can also see how easy it is to get drawn deeper into a carer role that can have devastating consequences on everyone's lives. It's so sad.

I'm very lucky I've got a good relationship with my dad, I just want what's best for him so he is safe & happy but there are practicalities that I can't easily change.

Thank you again.
Hi Els30,

I agree that moving your Dad at the moment 120 miles away could isolate him and he’d have only you visiting him etc

Unfortunately many professionals only make suggestions that remove the problems for them. Dad out of area means no longer their problem! They also see it as an answer to the dilemma - no one nearby to respond in an emergency. However, they many don’t have any concept of caring and the affect it has on the carer’s life.

One thing to consider though, is to ensure you have POA in place if you haven’t already done this, so if you do decide it’s better to move your Dad closer to you in the future it easier for you to do.

Melly1
Thank you Melly1, I'm in the process of organising a POA. Something I should have done long ago......
That’ll be good to have that in place, Els30.

Melly1
My concern is that the sheltered housing provider will say he needs to find somewhere else to live if he doesn't have a closer contact.
No one can be asked to leave accommodation on this basis. There are many people living in such accommodation who have no close contacts. Obviously it makes life easier(and it crosses there tick boxes) for centre control/off site warden to have a local contact. Some local authorities have mobile wardens who answer such calls. I would guess as there is a part time warden the housing association / council doesn't have mobiles in place. Does Dad have a key safe which would at least help with emergency services gaining entry. Should Dad been coherent to answer the control centre I've fallen I'm on the floor etc. Do I assume Dad has a emergency pendant.
It's been suggested by an Occupational health therapist that I should move my dad to be closer to me

Although this may have been stated with good intentions. An O/T remit is to give advice where someone is already living. And/or refer on to extra help like physio locally. Or recommending appropriate housing options re: wet floor / no stairs etc.
Thank you Sunnydisposition. I'm relieved to hear the sheltered housing association cannot use the lack of a local contact as a reason to ask someone to move. I am aware of this being suggested to other residents but if a similar suggestion is made to me, I'll challenge it.

On coming out of hospital I installed a key safe in the event he couldn't get to his door but I've also got confirmation that the community alarm response teams have access to keys outside warden's working hours in case of an emergency.

As part of his care package, my dad was upgraded to a fall detector pendant.

I get your point re the OT. When she's got no emotional attachment, it seems like the obvious thing to do and it might end up being what I have to do. However my dad has lived in the same city his entire life so while it might seem like a sensible solution there's a lot more to it. Not to mention navigating 2 NHS health boards & local authorities across Scotland.