Reality check

Tell us a bit about yourself here.
Is anything going to change? I ask because it seems to me that nothing has in all these years despite the Care Act. There are any amount of charities all offering advice and forums to vent one's thoughts etc, but what do they realy achieve? It boils down simply to whether the Government, Local Council or NHS provide the help that is needed, and by that I mean physical intervention where there is a positive outcome to assist those who are struggling. I am firmly of the belief that many of these charities are just job creation schemes which have little effect on the daily lives of carers.

I have explained my dilema to GP about help/coping, he's not interested. I explained about complan shots to to assist for nutrition. He said they are only for people with cancer or similar. I received a letter from GP new mentor advisors. They are a new service to mentor carers and received a grant to provide support etc. I was told I would receive a phone call to explain and then a visit. That was end of March, still waiting HA! support, they don't know the meaning of the word.
Back in february after a visit to the memory clinic we received a telephone call from a male person, i was able to deduce that it was about a carers assessment but that was all. I don't want to sound nasty but his accent was such a thick African type that I could hardly understand what he was talking about. I politely explained the difficulty and I understood someone would call me back. Nothing! In March after another visit I the matter referred for another follow up for assessment, guess what? Sweet nothing.

In April I telephoned Social services to enquire about assessment. A lady called round to discuss. Within minutes she was gone. Why? because my partner said he did not really want anyone else in the house. He can be a bit anti social, but that is not the point. Her view was that he said what he had to and she could not alter that. There was nothing more she could do and left. Wallop! On your own mate, get on with it.

A few days later, after the results of blood tests I had a call at 10.30 PM, note the PM! asking me to take him to the Older Persons Assessment Unit at the local Gen Hosp. It transpired that he was quite ill. He was reluctant to attend that night but agreed to go next day. It was not satifactory and a Doctor was sent out to see him. She preferred that he attend the unit immediately, but he would not. We did attend the next day and we were there until about four o'clock. After all the necessaries he was allowed to leave but with a caution to keep close eye on his condition. His medications were reveiwed and changed.
Some days later he showed signs of improvement. He is not as ill as was but he is still hopeless with regards to walking, balance, coping with food and dressing. His urine continence is worse than ever, epsecially at night.

After all these years of campaigns and god knows what the reality for carers is no better, and yet we go on and on about help, support and how wonderful life can be. I am woken each day at 3am with the reality of wet bed and sometimes faecal soiling. The carpets are soiled and there is always a pool of uriner on the bathroom floor not to mention the faecal smears on the doors and handles, wc seat, door post, towels and the rest. I can't keep up with the constant changing of trousers and underwear and all the washing etc. That is my reality.

Alan_15111234
Member

Joined: 29 Nov 2015 17:57
Oh Alan. I do honestly understand! Before my husband HAD to go to the hospital in a quick response ambulance ( he'd had another stroke) I used to beg, plead, cry, get angry, you name it, wanting him to go to the doctor's, do a urine sample for me to take for checking. He would say no, there's nothing wrong with me....... The medical professionals used to say we can't force anyone to do anything. It's still said at the nursing home. I say try a little cajoling, encouraging and just don't walk away the second the word no is used. Far too convenient. Now to you, you will end up being so Ill yourself, then what? Who will care for you or your partner?? The medical profession will have to. I've read on the forum more than once, advising carers to threaten withdrawal of caring altogether because the situation is impossible. Drastic, very drastic I know but it seems to make the powers that be sit up. You are important, you definitely deserve, need respite. I'm certain others on the forum will explain in more detail than I can , but it seems drastic action is needed for you both to have the care that's needed. It's very painful and emotional.
Hi Alan
Have you had a 'Carer's assessment'? That one is all about you and the help you need to be able to cope. Your caree can't tell them to leave. You don't have to meet them at home. Their offices or a place suggested by you is allowable.
There should be a continence nurse or a continence clinic in your area. Contact direct or through GP or SS. They should come and find out what products can be supplied, on prescription, to help that particular unfortunate aspect. Tell them exactly what you have to deal with. Emphasise that your own health is compromised.
Another potentially useful person is the occupational therapist. Equipment and aids are provided 'on loan', meaning you eventually have to give them back, but could be very handy.
Unfortunately no-one turns up uninvited to say I have a magic wand, tell me what you need. Unless you enquire, call, e-mail, write letters and generally make a fuss nothing gets done. You have to chase them and keep nipping at their heels. If all else fails a letter to your MP can work wonders as some on here have found.
Keep records of who you have spoken to, all e-mails and any letters. Have a folder dedicated to it.
Go get 'em!
Elaine
Hi Alan, I'm going to ask a difficult question. What do you want to happen? Do you want extra help at home, or do you want him to move out? Both are possible, but only you can say what you really want.
Hi everyone and thanks for the replies. Quite simply I want someone to listen and then provide help either for the house or himself. I can't seem to get anyone to listen. Even when I have explained no one seems to know what to do. I just get referred to the next person and they pass me to someone else. We had an appointment for the Geriatric clinic on 16th June and I was going to explain the problems, but guess what? phone call yesterday to say it was cancelled no doc available. Pencilled in for next week 23rd if we are lucky.

So depressed with everything life has no meaning anymore. Can't go out any where because his water problems are so acute, toilet every few minutes. Finally got a urology appointment for 4 july but that is only the begining. How long before any positive outcome? It seems to be all waiting with nothing positive.
Alan, can I suggest that you google "Conveen sheath". This, at least, should mean that you might be able to get out and about without the constant need for the loo. Have you asked Social Services for a Needs Assessment for him, a Carers Assessment for you? (Written, draft copies should have been sent to you if you have).