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Thankyou -Carers UK Forum

Thankyou

Share information, support and advice on all aspects of caring.
Hi all

Over the last six years iv e mostly lurked on this forum. A few times when I've been really low iv e asked for help and advice...but I've always read posts and appreciated the feeling of not being alone ...and really felt supported even if I haven't said much

Over the last year my dad has deteriorated rapidly. His care needs have escalated and there have been increased hospital visits and admissions

My stress levels have been sky high. My gp wasn t interested. I applied for a carers assessment and they arranged to do it over the phone ...the day it was due to happen we ended up at a and e with dad and I had to cancel. They've never rearranged the call.

My biggest issue is that I'm not assertive enough. I've been a bit of a doormat and am still the obedient child desperate to please( I think it's Jenny Lucas who made me see this)

Anyway ...suddenly yesterday ..with dad in hospital again ...with two new medical conditions diagnosed ..I had my lightbulb moment

I have to say the hospital care has been outstanding and for the first time they've actually started to investigate why he keeps falling and why he keeps dropping to dangerous levels of anemia ..previously they've just said it's his age or his parkinsons.

However yesterday I heard the team checking with him if he has everything in place at home for when he's discharged ..and he said ( typical old person not wanting to be a nuisance or lose independance) that yes it was all taken care of. The team didn t ask me as his carer a single question.

I followed them out of the ward and it all came out! To cut a long story short iv e secured equipment from occupational therapist .... And ..this is a life saver for me ...carers morning and evening to get dad out of bed dressed washed changed into bed etc with an option ..nearer actual discharge ..to going to three or four times a day

The relief i feel is actually overwhelming

I would never have done it if I hadn't read all the info on this forum ...Dad would have come home and the struggle would have continued

My only regret is that it's taken me six years to act on your wonderful advice ..so I would like to say to anybody else struggling out there dont wait ...don't let yourself reach breaking point. If you have to be a bit pushy and step out of your comfort zone to get help just bite the bullet and do it. The help is there ..theyr e just not very proactive at offering it.

of course the plan is in place ...it's yet to actually materialise ..but if there's any issues i now feel confident that I can refer back to what was discussed ..

So ..

Thank you all
Hi babybyrd, well done. I encourage everyone to be assertive, but it took me over 20 years to start standing up for myself, again an obedient daughter until then.
My husband too was an obedient son, sadly he died at the age of just 58 from a massive heart attack, trying to do too much for too long.
I developed a life threatening condition, I would have died within months without surgery. I'm still here, but feeling the effects every day.
Don't ever apologise when you tell the doctors or Social Services that you need an aid or adaptation to help you care. Without your help dad would be in hospital longer, or in residential care, not in his own home.
Feel proud of what you are doing. Never feel guilty about what you can't.
Now you have carers coming in, once you have made sure that they know what they are supposed to be doing, by talking to the manager arranging the service, please avoid "helping". Use the time they are there to pop out, go for a walk, or just chill our reading a book, making it really clear that you are NOT to be interrupted.
Glad your dad will have a care package and we'll done for asking for it.
Well done babybird, or should that be fledgling eagle ;)
Be prepared that you may have to insist and reassert, but that first step is the hardest and you've taken that

We are here if you need us

Xx
MrsA
I have been reading up ..today I have to find out of this is 'intermediate care' or permenant.

The old guilt is creeping in ...guy in bed next to dad and 25 years younger just got told he will likely not be around in six months time and all they can now give is palliative care. So sad.

I'm also feeling just a bit of dread at dad coming home at all. I've felt so liberated for the last couple of weeks while the hospital have been responsible rather than me. I love my dad. It's been so much better for our relationship while iv e been a daughter again rather than his carer.
BB, sadly, that is exactly what so many of us here feel. That once we are not the 'chore-carers' with the daily grind, etc, but become the 'social carers' just visiting and 'keeping company' that our relationships improve dramatically!

When MIL moved into a care home I felt the 'burden' just 'fall away'! (Not totally, as I am still the 'care organiser' but in terms of getting my own life back!).

Visiting her was SO much less stressful than 'looking after her'. When I visited, I took her out for scenic drives in the countryside, and we'd have lunch out, or tea, and then, oh bliss, I could take her back, and 'hand her over' to the care home staff again, and wave goodbye....and get back to my 'own' life.

I wonder, you know, whether your dad could go from hospital to what used to be called a 'convalescent' home - ie, some kind of respite care for a few weeks?

Others here know the ins and outs of the NHS/SS far better than I, and possibly I'm asking for the moon (!), but at least you could attempt it??

The trouble is, I can see your dad just wants to 'come home' and of course that is understandable. BUT, what he does not understand is what a 'burden' he is to you! Even if he were the easiest, most delightful and easy going of carees, ANY caree is a 'burden' (however much you may love them) because looking after them in ANY way is a 'chore' so to speak, and 'takes away' from your freedom to live your life as YOU want to.

And, sigh, oh boy is it typical for them to blithely tell the hospital staff 'Oh, I'm fine at home, I don't need any help!' - they just want no 'objections' to be raised to them 'escaping hospital'.

Whatever happens though now, THANK GOODNESS, you've finally pressed the I CAN'T DO THIS ALONE! button. Yes, you should have pressed it years ago (sigh), but it's pressed now.

Having care-workers in and out won't be a total doddle (!), BUT, you will NEVER AGAIN go back to being the 'care drudge' you were.

Your OWN life is beginning to 'come back' to you. HANG ON TO IT!!!!!

ALL The best, and do see whether you can delay your dad's actual return home that bit longer???

Cheers, Jenny

PS ALWAYS remember that if YOU were to throw in the towel on caring completely, your dad would be in a residential home tomorrow. So you NEVER have to feel guilty. NEVER. You are giving up YOUR life for his, and the only 'guilt' should be felt by your dad for accepting such a sacrifice from his daughter!!!!
Babybird (Fledgling Eagle is SO appropriate!),

The Intermediate Care should be free for the first six weeks, and CAN be longer if needed. Always come back here if you are told something different, because Social Services can be economical with the truth!

It should cover all the care dad needs. It's going to be really difficult, but you MUST step back when they are there.

Before the 6 weeks are up, there should be a discussion about what he needs once stabilised after his hospital stay. Care beyond the 6 weeks is usually means tested. If dad has over £23,000 he will be expected to pay the full cost of his care.
Well ..I got a call at home today saying drs have agreed dads medically fit so he's being discharged.

The only help I have been given so far is two walking frames!

I asked to speak with occupational therapy and my frustration and anxiety got the better of me and I burst into tears

As a consequence dads been moved to a rehab and therapy ward for older people where they 'promote a culture of independence to aid recovery '

It's basically rehab I guess
I've just heard of a neighbour who was told Dad would go into fully funded residential care, so they started looking at homes mightily relieved, when, yes you've guessed it, suddenly a call to say being discharged home next day with £100 per week towards care.
Situation still on going. Neighbours know they have to battle and fight, so yes Babybird being assertive is no longer what's needed, you may have to fight, and scream and cry.

Just tell yourself its not personal, they are trying it on everyone and its only the meek who will suffer
Hospitals definitions of "fit for discharge" and ours are wildly different. For a hospital it means they've made the elderly patient as good as they can.
That is NOT the same as fine to go home and resume a normal life. They didn't have a normal life when they went in, and every admission leaves a patient a bit weaker when they went in.
I've had 8 operations now, and I know from personal experience it takes me at least a month to get the anaesthetic out of my system and recover from the sleep deprivation. And that was between the ages of 30 and 60!
I get so cross when I hear the term "bed blocking". It's a new term, Never needed when the NHS had local "cottage" hospitals in local communities. People feel better if their friends and family can pop in and out. After an acute phase elderly people don't need modern acute hospitals, they need time, patience, and kindness to regain their strength in something like a "cottage hospital".