Sorting things out

You know how it is, some jobs you do because you want to, other you do because you want to help someone else and some jobs you do because, simply, they have to be done.

Since I had the pleasure of being made redundant and learning my wife would never be well enough o come home within a few days of each other, you can imagine I have had a number of jobs to do, most of them imposed by my new situation.

On top of that I was faced with selling the house to downsize because I simply couldn’t afford the mortgage any longer without work, I wasn’t too worried because there were so many tragic images of my wife, so many ghosts, that I was uncomfortable living there.

Then it came to a crunch… it became clear that I had to clear out a lot of staff, mine and hers, to fit into a smaller house… also because I wouldn’t be wearing her clothes, using her craft books, they were easy to sort out and clear out… well not easy, but I got through it without too much trauma.

I found that in order to get interest to sell the house I had to clear spaces and redecorate in magnolia throughout… I was doing it to sell a family home that I had lived in since 1980… not because I wanted to, but because it was full of ghosts and I couldn’t afford it.

Imagine how that left me feeling… a total failure… a man who had so lacked ambition and drive, in a career sense, that I couldn’t kee pa roof over the families collective heads, and indeed I couldn’t protect my wife well enough to keep her under the roof anyway.

I am wracked with guilt that I couldn’t do anything to slow down or ease her illness, she is missing out on the greatest experience a couple can have, seeing two gorgeous grandchildren grow up, being a part of their lives, supporting them and your own child. She would have so loved that, but it is not to be…

Now the house, as I moved things listlessly around, redecorated, of course time passed, it took me weeks to do each room, not days, and the ghosts started to fade… I realise I was painting her out of my life… and the ghosts were going as well, and strangely I was beginning to feel more at ease living there.

Don’t misunderstand this, I am keeping some keepsakes, I have countless photos of her, and a head full of the most wonderful memories, which are starting to resurface through the hell that life has been just lately.

So, I now have a home redecorated more or less top to bottom, just the bedroom to go, and the ghosts have subsided to a controllable level, but I still have the problem of selling.

Then it changed, I wont explain the changes, but I have paid off the mortgage and have a few quid in the bank. I also have now retired so am getting a pension, so no longer the soul destroying search through the situations vacant

I haven’t at this stage touched the garden for two years, to say it was a disgrace would be to compliment it indeed, but now I realised that I was doing the jobs for me, because I wanted to, I anted to stay in my home… and am going to. I got stuck into the garden, and 80% of it has been transformed from a 3 feet high tangle of nettles and weeds to something that people tell me looks really nice….

Then comes the last job on the list.. sorting out her own stuff in the cupboards. My wife was keen on craft… cross-stitch, embroidery, gold-work, knitting… anything you can name, except crochet! I don’t know why crochet, but there it is, she cannot tell me now, she cannot communicate at all.

This is where the pain that I cant cope with comes in. Although I have settled again in what I now consider to be my house, my life is improving as I gain strength and slowly start to accept the situation but the guilt I feel that my wife can’t enjoy any of this, she is locked in a cruel and destructive dementia that robs her of communication, of pleasure, of dignity, of friends, family and home, grows by the hour. It is eating me up, and as much as I can put on a brave face when needed, the pain is crippling most of the time… it is lonely being a carer, lonely, stressful and tiring.

This week, tonight, has been bad for me… the last cupboard… almost the last cupboard, this time it is a lot of her craft stuff I have to sort out… three huge boxes.. I remember we went to Bakewell, there is a lovely craft shop there… she got a really lovely fairy picture to cross-stitch, and all the threads, it cost a small fortune.. I remember as though it was yesterday the look of pleasure on her face as she kept looking at it as we walked along, how she kept it on her lap most of the drive home and looked at it… so thrilled with it.. she went out and bought a frame the next day… but there it was, gathering dust, untouched, in the box… not only that, but literally dozens of others, from small Disney pictures which are starter kits right up to huge table cloths and the like, all with one little flower done… otherwise untouched.. many still with a needle stuck in the cloth.

I hoave found loads of sewing frames, and most other sewing things… could almost set up a shop, but it makes me realise that her illness had been coming on for far longer than I realised… what sort of husband can be so blind as to not see this developing.. I have let her down so badly, I feel so down, so sorry for myself… but I shouldn’t, I have some more life to look forward to, it is her who doesn’t, her who cannot enjoy her grandchildren, her who cannot enjoy her sewing, her walking in the woods, by the river bank.. I have all that still, she doesn’t… what right have I to feel so down about it. None perhaps, but by god it doesn’t stop me. I feel totally devastated by it all.

The memories, the lovely memories, that these unused gifts and things trigger in me, I am so torn between the joy and pride of knowing what a wonderful wife and friend she has been to me, and what a lousy undeserved situation we now find ourselves in.

I know I owe it to her to move on, but I can’t, not yet… I know there is no recovery, but as long as she is there, I can go and give her a hug… then I cannot let go, not in the least.

Service? What Service?

I’m confused again, I guess that’s part of the situation I’m in. The last week has been marred by a further involvement with Social Workers…

I received a call form the on-going care team on Thursday and form a Social Worker on Friday. Both calls started by telling she was living at home. When they were corrected they both told me that she was in a particular care home. When I corrected them they were disappointed and said all the costings and reports had been prepared based on her going to that home. I challenged this and they said that they would have to come and reassess my mother.

Now, if you didn’t know, you would think why is he so upset by this. I’ll tell you… the person concerned is my wife, not my mother. My mother, despite her advanced years and frail body is still bright as a button.

It’s not as though that was the only problem. My wife has been in hospital for over three years now, she hasn’t been home in that time. The final issue is the home that they have now done their costing on is the very home that the previouis social worker sent me to look at… which I did and reported back that my wife would go there over my dead body… the place was AWFUL… it needs closing down.

So, the question is, if they have this basic information so utterly wrong, what else have they got wrong… how many other delusions are they working under and how can my wife possibly be getting the support and service she needs when they obviously don’t have the first idea what the hell they are dealing with.

Of course, you may be wondering… is this the sum total of the problems with social services? Is it hell!!!

Three or four months ago, we had a social worker, he was based 120 miles away, but was working this area. He didn’t know any of the homes, or where they were. My wife was assessed by two homes, one accepted her, the other didn’t. Sadly he told me the exact opposite to what he told the hospital, and his written record shows a third option… the home that actually accepted her was the one I reported back as being awful.

When I spoke to his manager to have him removed from the case, I was told that he shouldn’t have referred me to that home because it, well, was not recommended. I asked the obvious question… “then why did he…?” and got the answer “because he is working out of area and doesn’t know the homes”

You have to ask the question.. what the hell is the point?

Anyway, 3 months later, the manager who had taken over the case, had not made any more contact, other than to ask what I thought of another home…which actually was rather good.

Add these indiscretions to the nine years of consistent negligence and incompetence from Social Services and you start to get the impression of why I’m so damn angry with them.

I had a meeting scheduled this morning with my wife’s medical team and the social worker, looking at the options for ongoing care. I took the opportunity to take in a letter of complaint which included some demands including seeing her records, getting regular progress reports, finding out who was responsible for the inaccurate records and what they had done to sort it out and prevent repeats.

The meeting went well, I took a close friend and colleague along to the meeting for support, and we were delighted to hear the Social Worker outlining her progress, or attempts to make progress, to date and the action she was going to take to get things sorted as soon as possible.

Everyone in the room was very encouraging and supportive, nd a way forward was agreed, the Social Worker would lead, and when she got options, she would let me know so we could go and review the home.

After this exchange, the consultant psychiatrist took the lead, he is an extremely compassionate and caring man, he tells you the truth and treats carers with respect and dignity. However, I did somewhat jump when he said the lines that I really thought anyway, but had not been spoken aloud… “You do understand that the nature of this illness means that her life expectancy is drastically reduced”.

After further discussion around medical options, and further reviews the meeting broke.

If you think you now know why I am so angry and upset, you would be wrong.

The social worker took my letter to her boss, who I feel is culpable for much of the inaccuracy, she phoned me… and this is what made me so damned angry… her first line was “I don’t understand what you are angry about”. If she really doesn’t understand, perhaps she would be better working in a European discount supermarket.

Now, the point, yes, I got to it in the end, of this blog is this… When a carer is trying to support a loved one, knowing the loved one will ever return to the family home, knowing that the loved one hasn’t spoken or expressed anything other than by occasional moments of body language, when the loved one cannot get out of bed, wash herself, dress herself, is incontinent, needs to have cutlery placed in the correct hands before trying to persuade her to eat, you can imagine that carer is under pressure, is upset, worried, guilty… in simple terms is not having a very good time.. in this circumstance the carer, whose one aim is to get the loved one into a credible nursing home they need proper support and service from Social Services. The carer doesn’t have the detailed knowledge of the homes in the area, doesn’t know the different classifications, or what level of nursing is required, if the home can offer that level….It is then that the carer desperately needs proper support from social services… what I have had is far from proper support, it has pushed me back to the borders of depression, has caused me to feel to wretched to attend a conference today, and has left me desperately upset, miserable and alone.

Thank you social services.

The other aspect of this, my confusion, which I can’t deal with feeling like this is simple… I now officially know that my wife has a reduced life expectation… her time is limited… we are moving towards the end game. How do I feel.. obviously devastated… lost… but also I have this… is this better than seeing her living in this awful twilight world of not communicating, not being aware of anything, of sitting, looking lost and alone for another 30 years. The prospect of that fills me with tears, it is so tragic, so upsetting… so un-bloody-fair… but death will spare her from that… is it a blessing… put your self in my place… what do you think?

As I said, I can’t deal with this yet.