Ouch Too - a place for and about disabled people.

Forum => Talk => Topic started by: Sunny Clouds on 04 May 2019 11:16AM

Title: Thinking of you
Post by: Sunny Clouds on 04 May 2019 11:16AM
Just to say that even though I rarely post here these days, I pop by from time to time to see how people are.

I'm finding life rather rough but then don't we all?

Warm thoughts winging your way.

Title: Re: Thinking of you
Post by: SashaQ on 04 May 2019 11:44AM
Title: Re: Thinking of you
Post by: KizzyKazaer on 04 May 2019 09:35PM
...and warm thoughts winging their way right back atcha  >hugs<
Title: Re: Thinking of you
Post by: JLR2 on 05 May 2019 08:56AM
Title: Re: Thinking of you
Post by: auntieCtheM on 05 May 2019 09:22PM
So tell us what is up.
Title: Re: Thinking of you
Post by: Sunny Clouds on 06 May 2019 08:07PM
Just very depressed about lots of stuff.  I've tried more than once to type a better reply but just end up with pages of ranting that replies to wouldn't make me feel better.

But lovely Ouchers, when I think of you and what I've learnt from you, it makes a difference.

Thank you.
Title: Re: Thinking of you
Post by: Monic1511 on 06 May 2019 08:19PM
look after yourself and when you feel a bit better join in or add your comments when you feel like it  >dove<  >hugs<
Title: Re: Thinking of you
Post by: Fiz on 07 May 2019 05:56AM
Good to see you Sunny. Maybe if there's lots of things making your brain whir or fog choose one thing to talk about. I'm not a magician but it's good to be listened to or even offered a different perspective if there is one.  >hugs< and I think of you too.
Title: Re: Thinking of you
Post by: Sunny Clouds on 07 May 2019 09:36PM
I have a general sense that I'm facing life alone with big decisions.  I'm living in the family home, which I now own jointly with another relative who lives elsewhere.  At some point it will have to be sold. There was a lot of paperwork following my father's death and both before and after he died, I was let down by different firms of solicitors.

Meanwhile, I'm unhappy about the current disability campaign to separate disability support into a separate ministry/service/department, just as the government has been moving towards merging health and social care.

For those for whom the two are not entwined, this makes sense.  If your disability/impairment is not a health issue, why would you want it treated as such?  But for some of us, it entrenches something we'd desperately hoped would be changed and thought was going to be.  I'm gutted.

Let me tell you of three people.  My father, my grandmother, my friend's father.  All three had both physical and mental chronic health issues before and after they grew old, and all three developed dementia.

My grandmother

My grandmother got things like meals on wheels, and in those days you could raise a family on one wage so there were other women around to help her.  Then she went into the asylum.  It was a bit bare, but she was well cared for and very clearly not distressed other than by her delusions that she was still in her own home leading to lightly grumbling about cooking the dinner for her husband or whatever.

My father

Dad was 'care in the community' and had savings, so he had to pay for his own care.  Despite my pleading, social services wouldn't even offer advice on his care.  I was left high and dry.  I did my best, and as he worsened, he could afford a bit of paid care.  Then he went into a care home, which cost a lot.  It looked fancy with nice curtains and an en suite in his room not a nightingale dorm, but he was actually no better looked after. 

Then I moved him to a nursing home for more intense care when he got worse.  I managed to move him whilst the home's dols application was being processed, so they couldn't stop me.

In the nursing home, nothing moved at all on the promises to assess him for NHS continuing care.  He was neglected and shouted at etc.  In the end, I shovelled him in a taxi and brought him home and the neighbours helped me.  I researched and drew up a shortlist of nursing homes for end of life care.

I found him on the floor one day, unhurt and demanding a cup of tea.  I called the ambulance and was told if they took him to hospital, I could get 6 weeks free care whilst I checked out the nursing homes. At the hospital, I expressed concerns about some health issues the care home hadn't informed me of and that I was concerned about and they offered to admit him.

Once admitted, he had an accident rendering him unable to walk and then caught an infection.  He died a little while later.  (Of the dementia, not the accident.)

All the way, I had to advocate and fight for him.  It was heavy going.

My friend's father

Now to my friend's dad.  He didn't have money and was dependent on the state and his family.  They did their best but the powers that be played pass-the-parcel.  No one had funding.  Back and forth he went, care homes, psychiatric units, general hospital wards.  You care for him, no you care for him.

In the end my friend was trying to get NHS continuing care funding for a nursing home.  The NHS manager did her best to argue no, he needed social care not health care and the social work manager did the opposite.  My friend won and got him into the nursing home, where he died a few weeks later.

In the last 12 months of his life, he was moved 10 times.  I'm not sure whether 7 or 8 institutions.  Pass the parcel.

The implications for me

I have no children, no partner, no relatives same age or younger, no non-disabled relatives.  I have few friends and those that would be capable of being an attorney lack the energy or ability.

I had hoped and prayed that the government would go ahead with merging health and social care, but now there's a disability movement fighting against it and what I feel is fear and despair.

I understand why people are fighting for it, but my impression is that they're not, for the most part, people who, like me, could find ourselves captive in a hospital on a section or captive in a care home under a dols order.  There's no parity of rights or quality of life between NHS and the community.  Each has its deficiencies. 

I want a single set of rights, a single standard of care, 'parity of esteem'.

I don't have the emotional energy to fight it.  I barely have the emotional energy to get out of bed in the morning.  Already, I cry and cry and cry over this and lots of other things.

Having said that, who knows what the future will bring, but seeing the positive side isn't easy when you're this depressed.

I'm a remainer.  I am devastated over Brexit.  I say that whilst respecting that many leavers feel distressed by the possibility we may not leave, so I'm not trying to start a pro/anti Brexit battle here, just saying I feel distressed and bleak. 

It's not all bad.  Some people I know elsesite sent me some Christmas presents.

My ataxia is better than it was although I'm still waiting to see my neurologist since I was referred in October.  Maybe I'll be symptom-free by the time I get to see him!

I was scared to go out because I was falling over or getting knocked over every third or fourth time I left the house. It's less often now. But on the other hand, having now had three broken bones losing my balance indoors, I'm getting anxious at home.  Fortunately, I've got good neighbours and also a keysafe, which the 999 call centre has the code for.

So there you go.

In short, I'm depressed, I feel lonely, I'm scared to go out and scared to stay in and scared to do DIY in case of falls. My hearing makes socialising anywhere with background noise just fakery. 

And if you told me anyone here doesn't know what it's like to feel bleak, I wouldn't believe you.  It doesn't matter what your political views or whether your impairments are mental, physical or both, you've all had times when the world seems tough to face.  Thank you for being there.  It's not the replies that matter, it's just being able to say this.
Title: Re: Thinking of you
Post by: auntieCtheM on 07 May 2019 11:26PM
You seem to be carrying the weight of the world on your poor shoulders.   >hugs<
Title: Re: Thinking of you
Post by: huhn on 08 May 2019 03:36AM
 >bighugs<  >bighugs<  >bighugs<  >bighugs<  >bighugs<  >bighugs<  >bighugs<  >bighugs<  >bighugs<  >bighugs<  >bighugs<
Title: Re: Thinking of you
Post by: Fiz on 08 May 2019 08:39AM
Sunny, I don't know if you've read Sir Richard Wessely's report of recommendations for the upcoming amendments of the Mental Health Act? One of the recommendations that he himself feels very strongly about is that everyone should be encouraged to have written up an advanced directive for both mental health care treatment and medical health care treatment. He wants people to do this when they have capacity. His recommendations are that each person state what care and treatment they would never want and what care and treatment they do want. The advance directives could only be overturned by a court who would decide on life and death matters only and even then the Judge would make any decision taking into full account the person's advanced directive and their right of choice and autonomy. At no stage can anyone lower than a judge go against any of your wishes contained in your advanced directive. This is being discussed in parliament at the moment, in snatches between Brexit and resignation talks, but nevertheless is still being discussed. Considering that this is the most important change to the Mental Health Act and the Mental Capacity Act that Sir Richard Wessely wants more than anything else I think it has a good chance of being approved and rubber stamped by Parliament.

DoLS looks set to go.

Hopefully this would reassure you, that what you want for both your social and health care is what will need to be followed if this does get full approval. I think these changes are very much needed.

I was talking to my foster Mum about my worries about my physical decline with falls and enuresis and the next step being wheelchair and how would I manage living alone and she told me to stop, that I had no idea whether my condition would worsen or  whether something could be done to help at any stage and with no crystal ball and no knowledge of the future, that I should think only of today. I have tried very hard to do as she suggested and apart from thoughts/worries about what the Spinal consultant will say when I see him next week, I have managed not to worry about other things for almost all of the time.

If that's at all possible for you to try I'm sure it would be helpful if you could succeed to whatever extent. We can't know the future and what we worry about may never happen at all.

I was really pleased to read that friends sent you Christmas presents, how lovely.
Title: Re: Thinking of you
Post by: Sunny Clouds on 08 May 2019 01:05PM
I'm not sure why they'd get rid of dols so soon after reviewing it, taking away the key protections, and effectively giving private, for-profit care homes the ability to stop you leaving with no proper oversight.

Meanwhile, advance directives and similar arrangements don't do anything to say you want your health and social care aligned, and they don't address all the everyday issues of equal rights.  They don't enable you to say you want as much spent on your care whether it's in hospital, in a care home, in a nursing home or in the community.  They don't let you specify whose budget your care comes under.  All they do is very specifically address health, so for so long as health and social care have different budgets, you can be shunted back and forth, back and forth.

There is currently no legal provision by which you can make an advance directive or similar which states "If I get one of the following conditions [long list including things like dementia, chronic psychosis etc.] I want my care to be provided out of a social/disability budget not an NHS budget and I want the same rights as people with their care provided out of a social/disability budget, regardless of where my care takes place."

Even now, with massive quantities of legal provision relating to equality, the number of incontinence pads you'd get would vary according to whether you were in a (general) hospital bed, in a (psychiatric) hospital were you were expected to be in a day room, a care home or your own nursing home.

My experience of life as a person with hearing impairments is that at home I can have various amplified equipment and use PIP to pay for more (and in the past had some items supplied by my local authority) but that in a psychiatric hospital they have no adequate amplified phone and you can wait a week to be escorted to use one with a telecoil, which would be fine if psychiatric units also supplied hearing aid batteries and if all hearing aids had a T-setting.

Unless you write almost a whole book, you can't specify the level of equality you want and most of it will be ignored anyway.  Contrast - when Dad was in a care home the NHS only wanted to provide 3 incontinence pads a day (although I usually bought him pants and as many as he wanted) but in hospital, he was changed as often as needed and not rationed.

Having said that, since the NHS is being treated to the well-established process of 'defund, demoralise, privatise', as has already happened to most social care, and since support for disabled people has already been condemned by the UN as a human catastrophe, maybe it doesn't matter who provides the care, or rather who doesn't provide it.

What I do tell myself off about is that even though I'd worked out some years ago that the best thing I could do to survive whatever life and politics bring is to stay as fit as possible, I haven't done that.

For example, I've never had very strong arm muscles, but I've really let that slip.  What if I needed a wheelchair?  Well, obviously something could happen that could also affect my arms, but even so, I should do my best.

I remember reading years ago that the single most important thing you can do to prepare for old age is to acquire and maintain the ability to get up off the floor without using your hands.  Obviously for some, this isn't possible, but the concept's a good one, isn't it?  Back to basics on independence.

When I adapted Dad's house for him, looking back on it, one thing that made a difference was something someone else suggested - getting luminous tape and putting markers on key points such as light switches.  I've got them by door handles and at orientation points on the staircase etc. 

I don't disagree with your proposition that it would help me to worry less.  In all seriousness, though, much as I tell myself I have to stay steady mentally, the reality is that I can't simply magic away the mood issues or obsessive compulsiveness.

I know I'm wound up with life when I go on and on and on. Now you know why I don't post much.  Grumps R us!!
Title: Re: Thinking of you
Post by: auntieCtheM on 08 May 2019 08:49PM
Grumps is interesting.
Title: Re: Thinking of you
Post by: Sunshine Meadows on 12 May 2019 01:56PM
I remember reading years ago that the single most important thing you can do to prepare for old age is to acquire and maintain the ability to get up off the floor without using your hands.  

Excellent advice  >thumbsup< and reminds me I really need to find energy to do at least some of my physio exercises a day. Hormones currently causing havoc  >yikes< >crying< >whistle< but that is a topic for another thread.

Lovely to see you posting .. as Auntie says Grumps are interesting.