Caring

[enaid]

I am in the middle of a situation that I would rather be told the options and the options be very honest rather than bias.
Not the case in fact and I am at a loss as to my options, I will fight as I always have for the right way, but i don't know what that is.
In a dilemma as to have dad in a residential home or his own home.
Fact is he was in hospital, sent to a rehab to be assessed, now I have been asking to have him assessed for over 3 years.
All say he has capacity , all well an good.
Now he is in a rehab again,and he is stuck in a room on his own as he didn't gel in the lounge, am at a loss cause I know his care at home is better than he is getting now, but I dont want it thrown in my face I risked his safety

[MissFM]

Re: Caring

Enaid - I have so much sympathy but sorry what I can contribute is probably what you already know. Your Dad's situation is unlikely to improve and there is unlikely to be an "ideal" situation.

I kept my own Dad in his home until just before he died (as requested when he was compos mentis) but I still don't know whether it was the right thing to do and it was harrowing in the extreme.

If you can identify a residential home that is genuinely caring and where you think he might "fit in" (to some extent) and have some genuine companionshipthat could be the best way forward, unless he has a really solid network of family and friends around him at home. Otherwise the reality is loneliness for him, anxiety for you and a pair of rushed carers for 15 mins a day.

A lot depends on whether his mental accuity is relatively intact.

Can you discuss it with him?


Wishing you so well in this x

[CYNthesys]

Re: Caring

Enaid, In my opinion its no contest, one's own home trumps residential homes every single time.

Im sure he will be far happier in his own environment even if he needs extra care to remain at home.

From my own past experiences I can honestly say Ive not much time for residential and nursing homes.

[labman]

Re: Caring

Hi Enaid,

As you may know I lost my Dad at the end of June after 9 months of him being isolated either in hospital or in rehab being assessed. Like your Dad he didn't like the lounge much, so was isolated and often sat in the Dining Room craving company which was soul destroying.

There is no right answer, nor do I think there will be, but if we had our time again with Dad we'd have pushed much, much harder to get him home with an appropriate care plan in place as often as possible. Effectively he lived his final 9 months waiting to die and that is awful. My parents got 4 visits a day - 3 entitled and 1 paid for (overnight care).

I assume you've got all available safety guards in place at home - if not I'd get those in place first, but for me it would be home every time.

[CYNthesys]

Re: Caring

enaid,
I fought tooth and nail to get my husband discharged from a section 3 so that he could return to live and be nursed at home.
I'm not pretending its easy, it was a joint decision with our children who were only 12 and 14 at the time, but they all mucked in and felt that their dad's place was at home, and not to be hidden away in a home.
"There is no place like home"
xx

[enaid]

Re: Caring

Thanks Cyn I have picked up over the time you have been posting on here that you had more than a financial fight on your hands and I am so pleased you won the one that imo mattered the most.
It's heartbreaking to see my dad like he is and me and my sister were thinking of him and us ( selfishly I think) being better cared for in a residential home. He falls on a daily basis as his mobility is terrible, he has a falls pendant in place and is able to use it when he feels he needs to.
He was only in this assessment place half a day and had a fall, I had a scrap to get them to put pads on him as he is unable to hold himself long enough to get to the loo. The hospital said he wasn't incontinent, but he has bottles at the side of him constantly and at home too. This as you can imagine is not how he can relieve himself in a lounge/dining room in the place he is in now. As we have to do his washing the amount of clothes he is going through is unbelievable.This has become an issue and it looks like he is being made to stay in his room. I need a couple more visits to see if this is the case. I won't ask them as yet just softly softly catches monkey I think.
So yes I think he will be coming home, he has passed the stage where sheltered accommodation would suit him and we have been trying for the last 3 years to get him in, so that's a no no now.
He refused help in the early stages but now accepts it after drip feeding it in, he pays for it all but doesn't know. We will increase that and probably bring his bed downstairs when the time is right for that. When we move he can come to mine for a shower with his carer as we will have a wet room and no stairs thankfully.
Sorry for going on but this is a horrible situation and as they don't treat Dementia as needing nursing care but social care then he will continue to have what he needs and pay for it.

[CYNthesys]

Re: Caring

Enaid, I've witnessed falls in nursing homes, where the staff havent been allowed to "catch" patients, for fear of hurting their backs. If staff were near enough when patients were heading for a fall they were only allowed to try and "break" the fall.
My husband fell out of bed because staff forgot to raise the bed rails, he was black and blue.
Within a week of him being admitted he was categorised as being doubly incontinent and made to wear nappies, he wasnt incontinent when he was admitted,but just struggled to find his way to the loo in a different environment.

[wales01man]

Re: Caring

What a decision to have to make,never had to with my parents I really don't know what I would have done.
Not having been where you are all I would say is think long and hard before you decide after all its said its yours and you families choice ,whatever happens hope the futures as good as it can be.

[enaid]

Re: Caring

Thanks Wales, yes it is a very hard decision and I only hope we choose the right one.
I often wonder and have spoken to friends about getting old and which is the worst of 2 evils, having physical issues or mental ones. My mum died with COPD and had no mental issues at all, watching her struggling with every day tasks was awful but upside of her passing is that she didn't get to see my dad as he is now that would have broke her heart.
Seeing dad as he is and the progression of Dementia is awful too, but the fact we have to make his decisions for him or will need to soon is very daunting to say the least.

[labman]

Re: Caring

Hi again Enaid,

I'm so sorry to hear of what you're going through. Bits of it are like my Dad was, and others like my Mum is. She has been bedbound downstairs for over two years now, and her world revolves around the clock, what should be on TV (can't change channele as the TV will break so she thinks), and the TV times, then back to the clock. She is now classed as incontinent, but I remember the fight for the pads and with Dad for a larger catheter bag so he could maintain some dignity wearing it under his trouser leg. Keep getting assessments re incontinence - if you're a 'nice' thorn, we found you got more. Catheterisation can solve the bottle problem, but can lead to UTI's - swings and roundabouts.

Keeping up with washing, and all those practical things also hold unhappy memories.

Just one thing - care. I know I don't need to with you, as you almost certainly know more than I do about this, but best start from a point of no knowledge so your Dad gets everything possible.

Have you had an assessment in the house for bars on walls for mobility etc...? We were surprised quite how much Social Services supplied (and continue to supply with Mum), free of charge - it may be different in Wales, but not, I believe significantly so. This probably is different with you, by the sounds of things, living in the house. However, we were able to get three visits a day from Social Services free of charge. We found a brilliant local private service, of people who would go and do shopping and you just paid their fuel money @ 14p per mile; another local private service of 'sitters' who come and just spend time with Mum to give her company - all properly checked, not that it stops you worrying to start with.

Fro a practical point of view, with hindsight, it would have been far, far cheaper for us to employ carers ourselves. We could have had 24 hour care in place for a fraction of the £4000+ a month Mum (and Dad) have been paying for 2.5 years. This would have relieved the personal stress for 'us' - it's not at all selfish to think of yourselves, it can be survival, but I understand what you mean. It may be something to think about - a mixed blessing of having care all the time for peace of mind vs the issues of being an employer. We would have handpicked from the best carers coming in, as most were lovely, but a couple were horrible.

Do think carefully though. H&S regs are mad for care now. Equally daily falls could easily mean a lot of broken bones - we've been there. On the positive side, having him home does not preclude you changing your minds if you just cannot cope.

I really do feel for you though; we all want to do what is right for our parents, but there isn't a right. It is all compromise. It's trying to find the best compromise.

Good luck with whatever you decide.

[bardanlacy]

Re: Caring

I had gone through the posts. If you are passionate about helping people or caring for others purelyfor sexual needs and night enjoyments.

[Inca]

Re: Caring

Hi hun
As you know I have to have a fulltime carer because I physically cannot manage alone any more. It was a tough call to make for me,independence was my last bastion of 'normal' life

Whatever decisions you and your sister make will be the right ones for you (and Dad)...in a way I was lucky,neither of my parents had dementia although both needed care at home but there was 6 of us to help and Dad only needed morning/evening carers (double amputee and bad tempered git)..My Mum had Emphysema and seeing her struggle was heartbreaking
If you ever need a rant/vent...you know where I am...have broad shoulders xxxxxxxxxxx

[enaid]

Re: Caring

There is so much in the media in fact BBC have it on again this morning about the lack of care for the elderly. Mainly today about home care being provided (or indeed not) by the local council ie 15 mins calls and the choice sometimes the elderly have in that time to eat or go to the loo. How very little training the carers get and lets face it many get these jobs because it fits in with their lives and they are not really fully interested in caring.
Also many things going on at the mo about abuse in care homes and how to tackle that.
I ask anyone how they can confidently expect their loved ones to be helped in the latter years. In makes me sick and as I am dealing with this matter first hand I know it is fact.
I have a daughter too with severe learning difficulties, she's having the best life one can expect for her at present, sadly no marriage or kids but hey ho.
What will happen to her when we pass away? I wouldn't even approach her brother to take care of her or us for that matter.
Many times I have been on the brink and have thought about her going into residential but no way could I do that with the situation as it is.
It's all too scary and very difficult to deal with and yet there is no situation more sure than we get older and need more help, but who is bloody listening?

[labman]

Re: Caring

Enaid,

I can almost live this with you, sadly. The huge battles we've had to get the best care for Mum at home. We've had loo vs meals, being stuck with a tray on your lap from 12:00 - 3:30pm because she can't eat fast enough, being shouted at cos she can't move fast enough or the hoist is hurting her, curtains closed in mid-Summer at 3:30pm as next visit not until 8pm and Mum can't switch a light on, so curtains closed and lights on. Sometimes even put into bed clothes during the 3pm visit.

The 'abuse' we saw in care homes was more undeliberate neglect as the workers had too much to do. Thus Dad was left in a room on his own for too long with soiled clothes and bed linen in a pile in a corner; a catheter bag waiting for cleaning in the bathroom, but leaving a disgusting smell in the room. That type of thing.

ALL the home carers my Mum has, and she now has the best of the bunch, are on zero hour contracts, minimum wage, they're out of the house often for 16 hours or so a day, but only paid for 7 or 8 as they're only paid for actual contact time, all minimum wage of course. It is not an easy job, and they have chunks of time where it's not worth going home, but they have nothing else to do, so just sit in their cars. They eat junk as they can't cook a proper meal. We've told them to go into Mum's house and make themselves something at those times - generally we reap the dividends as a result, though that's not why we say it.

It is appalling, and it hardly takes a genius to see it's going to get worse as we're generally living longer.

[enaid]

Re: Caring

Just a little up date as this is a bit of a diary as well as asking for opinions etc.
Saw dad on Tuesday and asked was anything being done re assessment reply was 'he is being assessed all the time' bloody good in there me or sis have not seen him awake on arrival on more than 3 occasions in the 2 weeks he's been in there. (we both decided they put summat in their tea cause they all the same). very very sad to see actually.
Anyway what looks like someone who had come in after school said she was the OT and had assessed dad on Monday and deemed he had not got capacity. She said she was getting a meeting together then the social worker could decide where dad goes next. She said the social worker would be one from the hospital, that their decision would be a legal document (in others words sectioning dad)

After I got down from the ceiling, I calmed down and sorted my head out in full knowledge that no way was a social worker deciding what happens to dad next, no matter how long he has left with us.
My sister went on Weds said dad was very down and nodding off all the time, so it looked like he wasn't improving at all.
We went on Thursday and what a difference he'd had his haircut and shave as I requested, he was awake and looked quite bright.
I asked him where he lived as this was one of the questions the school girl asked him before she deemed him has having no capacity. He told me where he lived so that was enough for me, big grin on both our faces as at first he said the address he was born at and then he laughed and told me his address now.
Manager came to me and said the meeting would be held soon but as dads social worker was off until Monday it would have to wait, she told me his social worker was the last one from SS that had his case.

They don't hold on to cases now they sign people off as their problems supposedly get solved so over the last 2 years dad has had 7 social workers 1 after each incident of a fall or hospitalisation. Dads last SW is West Indian I think and is very hard to understand both myself and my sister have trouble understanding him. I rang SS yesterday to see if the could change SW so it would be a better and fairer meeting for all of us. Well SW manager not in, she's off sick till Monday and only she can do that job lol. I was told that dads social worker was not back on Monday as said but will be back on Friday, so no chance of a meeting next week for dad even if we had to have him. I asked if one of the other past social workers could do it and she looked them up the last 3 had all left and the others she had never heard of, (Chuffin brilliant says I)

Yesterday afternoon I got a call from a doctor who had seen dad for the first time yesterday we had a long chat and he said dad in fact had capacity (Phew) that with Dementia if people have an infection as often happens re water and chest then what is called delirium kicks in and that was probably why dad seemed as poorly and as confused as he did.
So hopefully we will be having meeting next week and then he can come home, what a bloody good job the school girl was not left as the last one to have a decision on dads capacity, I may have to give her a sly slap if I see her again.
Thanks for reading and being here and I hope anyone else in this situation can feel free to write it down as I have it does help, honest.
Enaid xx