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Hi, introducing myself - Carers UK Forum

Hi, introducing myself

Tell us a bit about yourself here.
Good morning.

First time on here, I just think a bit of mutual support may help me with my very stressful caring role!
I care for both of my elderly parents, they have different but equally challenging problems, mum has a fractured back which she’s had for years causing a lot of immobility and then had a stroke last year causing weakness on right side and short term memory loss!
Dad has vascular damage (they don’t say but it may be onset of vascular dementia) he can’t walk very well, falls a lot and has serious mental health problems, severe anxiety/bi polar. He also has emphysema! I live next door in a semi detached house with adjoining doors!
The local social team recently put a care package in place so that I could have a break/holiday within 7 hours of me being gone they were both in hospital! I had to come back early so myself or my family didn’t get the break we so desperately need!
I’m here 24/7 and at times it’s so hard!!
Sue x
Hi Sue, welcome to the forum.

The time has come for them both to have new Needs Assessments, and you a new Carers Assessment, from Social Services. Before the assessments are done, write down EVERY thing you do for them. Write things down on a list over a week, you will be surprised at just how many different things are listed.

Then try to divide them up into categories, House, Food, Personal Hygience, Money Matters etc.

Type the list up, in categories, give it to the Social Worker, and ask her to include it in her file, permanently.

Now tell us a bit more about where you live.Do you both own, or rent, the properties?
Are both claiming Attendance Allowance?
Dad needs a formal diagnosis of dementia, then he will become totally exempt from Council Tax, and entitled possibly to more benefits.
How old are your parents? How old are you?
Individually, do either of them have over £23,000 in savings? (The level at which Social Services help fund care).
Do they give you anything for the care you provide?

I was a multiple carer for years, and my health was ruined forever. Don't let this happen to you.
Hi Sue,
Welcome to the forum.

Supporting two high needs carees is tough. No wonder you are stressed and like you say, you are on hand 24 hours a day.

Some good advice from BB, which will hopefully eventually lessen the load a bit.

Maybe next time you take a break, a live in carer or residential respite care is called for.

Oh dear, I think your first mistake was to come back from holiday when they were taken into hospital!

Why come back? They were safe in hospital. That was the important thing.

I'm not saying you have to be 'heartless' but you DO have to insist on the 'separation' of your life from theirs.

Holidays can be real 'touch points' for carers - time and time and time and time again here we read of carers who are 'just about' to go on holiday, or are on holiday already, and then 'suddenly' oh dear, their parents 'worsen' and, oh dear again, now their children can't go on holiday, oh dear, oh dear oh dear.

We've even had one carer whose taxi for the airport was at the door, and the taxi to take the mum to the respite home was also at the door - and the mum refused at the last minute to go into respite, SOD their daughter's holiday, SOD the selfishness of it all. SHE just 'didn't want' to go into respite.......

All that said, do you think the problem was the insufficiency of the care package to protect your parents? How bad are they feeling about what they did to you? Or did they do it 'to punish you' for daring to leave them?

SO much depends on how appreciative, or not, they are of what you do for them.
Thanks everyone, I’m so busy I’ll answer the questions later but the reason we came back is I could tell they were going down hill quickly! The hospital care I’m afraid was dreadful! Every day I spoke to them they were worse, my sister in law popped in to see them and mum was sitting in a really uncomfortable chair (with a fractured spine) in a soaking wet dress, they both fell twice in the 5 days in hospital and had to be CT scanned! If I thought they were ok in there I would have stayed! They cocked up dads medication and told me it was because they ask patients what they take (my dad had aphasia and cant speak )
They desperately wanted me to have the break and are very appreciative (mum and dad can be a bit tricky at times) but they desperately needed me! I just couldn’t stay!

Sue x
Are you saying they were in hospital to give you respite? They need nursing home care, from what you describe. If you didn't get a holiday as they were ill, then you should get proper respite arranged and then have a proper holiday.

From what you describe, they can only survive at home if you are there. Is that right?
Hi Sue and welcome. What a difficult situation you're in. I care for my elderly parents too, they live 5 mins walk away. My dad has frequent falls and he forgets to drink. He can so easily become dehydrated so I feel anxious for him when I'm not there. My mum gives him drinks but dad falls asleep and forgets to drink. I agree with you about hospital treatment - it is very poor. My dad was in hospital last month and I visited him lunchtime and teatime because otherwise he just wouldn't eat or drink. Do you ever get a day off? Are there any other family members to help? You mention your sister in law, could she look after your parents sometimes to give you a break?
I'm glad it was 'real necessity' that yanked you back, and that your parents are appreciative of what you do, and wanted you to have a holiday - that's so important.

I'm sorry the hospital was disastrous - but not that surprised alas. A friend of mine's mother with both type 1 diabetes and heart disease was in hospital and regularly went into hypos as the staff just did NOT give her her injections and did NOT feed her....absolutely unforgiveable. (And short staffing is NOT our responsibility!)

Hopefully, next time you need a holiday, as others are suggesting, a proper 'respite break' for your parents would surely be better. Care homes are usually more responsible about their 'inmates' than hospitals....
Thanks for the replies.

Just to reiterate, I care for both of my elderly/disabled parents, they live next door, we have adjoining doors (semi detached)
I have been doing this for some time now but my dad was a bit able! Can’t speak but he could do the pottering about which helped as mum is vertically wheelchair bound, I have to physically help her transfer from chair to chair! I’m January dad had what appeared to be flu, suddenly went down hill to the point where he can hardly walk!
They can attendance and I get carers (only for one as that’s the rule!) I work a few hours a week (during which time they generally stay in their bedroom which is very close to their special toilet!). I’m literally Wilkie talkie distance away!

I have no help so asked the social worker/OT/GP for care to be put in place so I could have a holiday, they put a care package in place (I should have known it wouldn’t work but was so desperate) and I guess I trusted that they know what they are doing!

We cleared out their living room into a storage unit, brought everything downstairs, had hospital beds delivered (this took me ages!!) they were having meals on wheels, care 4 times a day and alarms etc! I have no other help, no siblings, my husband works very hard but helps when he can!
Within 6 - 7 hours of us leaving dad had fallen mum got on the floor to pick him up and called help! The carers turned up and the upshot is that they called an ambulance took them both to hospital for precautions. They stayed in A&E for over a day then were transferred to a ward, diff bays of course! My dads mental health as you can imagine took a serious nose dive, they gave him a fraction of his meds because none were brought in and they didn’t know! They told me they didn’t have computerised systems!
I spent the first few days of my holiday phoning them, mum went downhill to the point she couldn’t bare weight st all, then they didn’t want her to be discharged because she couldn’t bare weight! This happens when her spine is compressed for large periods of time sitting up! This they did every day to her! I hate to be disingenuous to our nurses and docs but the care was awful, mum has to wee a lot because of UTI she can’t do this on her own but was left and not reminded to drink water in 30 degree heat! Result huge UTI, so now they don’t want to discharge her because she’s so confused and she can’t walk!!
Dads mental health was deteriorating rapidly! The hospital social worker went on holiday and said she would meet me when she got back! Till then they would have to stay there!
If I had felt they were safe there I can assure you I wouldn’t have made the supposed mistake of coming home! I was desperate to stay but at the end of the day they are more important, they have helped us, supported us financially, babysat, so they are my priority! Neither have dementia, mum has short term memory loss and dad has brain damage in his speech area from a stroke!
I try to take each day as it comes/ not sorry that my housework doesn’t get done or that I can’t go out as much as I would.

there Is nothing that can be done short of 24 hour care being given! We tend to think of the big things when bring a carer like toilets/ moving about/ washing/ feeding etc but the little things like helping with the TV remote/finding the TV remote/making coffee/tea etc takes so much time!

They have a buzzer/doorbell beside them to call me Day and night! Mum has a walk-in talkie!

It’s bloody hard but the help offered is so inadequate, so we just plod on!

Thanks to those who have shown kindness and support, that was what I was hoping for! We all do things differently and sometimes there is no right or wrong!
Sue x
Sometimes, indeed, it's just a question of 'bad or worse'....

You eloquently describe the trap that SO many carers are in - I particularly resonated with the 'little things like the TV remote'....the grim, ghastly truth is that behind that glib phrase 24x7 care is basically the need to have an ever present 'servant' or 'parent'.....just as no parent can leave a two year old on their own for more than a handful of minutes, so it comes to that with dependent elderly folk. You just need to be THERE the WHOLE time just about!

Do please understand, in terms of my appearing to criticise them, that what I said DOES, grimly, ring true for all too many carers here! That their carees have absolutely NO compunction about keeping them 'on hand'. We've one incredibly put upon middle aged member here who has been treated as an unpaid servant by her parents, and now her nightmare mum, ALL her life. Even though the mum now has a full time carer (we helped the forum member insist on that, at the least) the tyrannical mum STILL wants the DAUGHTER in her bedroom ALL the time.

In the end, it boils down to what the parent was like BEFORE they became frail and needy! My 'rule' is that IF they were always selfish and tyrannical, then no way should we 'pander' to them. The far trickier moral problem comes if they were actually decent parents and then because of dementia they BECOME selfish and tyrannical! Is that 'their fault' or not? Just how much should we 'pander' to them in that case?

And even if dementia doesn't make them 'selfish', only 'needy', do we STILL have a moral obligation to make huge personal sacrifices for them? (In my case I made the call not to - I put my MIL with dementia into a care home. I refused to give up my life for her. Fair? Possibly. Kind? Definitely not.)

However, all that is 'by the by' in that you are, as you so vivdly describe, in a really horrible cleft stick. Social care has proved disastrous, as has the appalling NHS treatment (really, one thinks they would have been better off being admitted to a decently run nursing home, not a shambolic general hospital!).