Nobody it would seem!
Because CHS is still classed as working, albeit off sick we are not claiming any benefits, this means we aren't eligible for some of the carers help.
CHS is still getting lots of help with rehabilitation, what with the gym and the Stroke Club and medical appointments so I'm not complaining about that.
It seems to me that the needs of the wife/carer are ignored. I have also noticed that there is more help for male carers whereas I'm classed as a wife and therefore my role is just that. There are lots of carers websites and forums and even some meetings but as with the knit and natter nothing I can actually get to.
CHS and I are managing and he is improving so mostly that seems to mean
Scrimping and saving, ranting and raving. Past retirement age.
10 comments:
I understand how you feel. My husband has heart failure and got plenty of help when he was first diagnosed and had his 2 stent ops. Loads of rehab, hospital and GP appointments, medical professionals ringing him up, letters offering him various things. I'm the one who makes sure he has the right diet, takes all his (many) pills, reorders them when necessary, ensures he gets enough exercise, makes sure he takes his angina spray out with him all the time, keeps an eye on him when he's doing anything mildly strenuous as he doesn't take care of himself. And I get no help at all. I dare say there may be a carers group in the town somewhere, but as I can't drive and there's no public transport here, I can't get to one.
I feel for you and Sooze to. Women just get stuck in and do the nurturing /nursing automatically, often forgetting their own needs. I hope you manage to get some respite at a group.
There is a brilliant book that you might be able to get from the library. "The selfish pigs guide to caring". Gave my copy away or I would have let you have it. Written from a carers point of view as most attention is on the "patient"
I'm on the other side as I am the disabled one and although he isn't officially my carer, my husband is thought of as such. I still do everything for myself apart from washing my hair, which he does do. He does all the day-to-day stuff eg cooking, shopping, ironing and housework, also the washing, but that is because the machine is in an outside room behind the garage, otherwise I would still be doing the washing. I would love to do more, but my body refuses to co-operate.
There was a notice in our Doctors surgery about Carers and my husband rang up and went on a course. It was only for three weeks, but he still meets up with the other Carers every so often. So maybe it would be a good idea if you enquired at your surgery to see if there is anything similar in your are.
Hester, I so feel for you, no one seems to even think of the "unofficial" carer.
Like Sooze my Husband has heart failure, has done for almost 3 years. I also order his tablets, put them in the daily boxes for him, remind him about the afternoon diuretics, because he tends to forget. I go with him to every medical appointment because he is quite hard of hearing and doesn't always catch what the doctor is saying. He is at present nurturing another leg ulcer (due to poor circulation), so managed to get antibiotics from the GP, and I put manuka honey dressings on the ulcer. The leg is very painful.
Of course I do all this, he is my husband and I love him, but not once has anyone asked if I am coping and do I need any help.
Ree x
Try to be optimistic and be thankful for what you do have, although it may not be easy. You still have your husband in mind and body.
My husband has mixed dementia, both Alzheimers Disease and Parkinsons Dementia.
I wouldn't wish it on my worst enemy and the future has absolutely no optimism in it, it only looks extremely grim. I've lost my loving, funny, caring companion. The future is where he no longer recognises me and loses the ability to function in every way.
Treasure every moment with your husband.
I wrote a post about caring for my 95-year-old mother-in-law at home and was very grateful and surprised at the responses I received. I think there are so many "carers" out there, and of course as we age there is more chance of being thrust into the situation with both parents and spouses. It helps to talk about it here in blogland.
I certainly feel for you, especially in that you are stuck on a small boat and can't get away from each other. I imagine CHS is very frustrated and you bear the brunt. I do think the Knit and Natter would be worth £7.50 for your peace of mind, maybe as a stop gap til you see how CHS progresses, yes its stupidly expensive but once you join that you may find something cheaper with some like minded people.
Maybe times out with good friends would offer you more than an organised "carers " group. You are mourning what your life WAS and good friends will "hear " you without you having to EXPLAIN which is very wearing.
Though I do think I know the area you are from and the carers centre in that area was very good, it had craft days, coffee mornings etc and they were at all sorts of times...can your DD and her family have CHS parked in front of their telly while you unwind a bit once in a while.
I've read the other comments on here and I have to say I'm surprised. My husband has far more severe health problems than those some ladies have mentioned and , of course, I do all that they mention and a hundred things more and I wouldn't consider myself his "carer" in a million years..........Pat, on the other hand is most certainly a carer however.
I also have a severely disabled family member, he DOES require real care but the reality of it, is that for those of us doing hard 24 hour personal care for those who cannot function without it, not just mucking around piddling with pills will get a few hours a month. I think people should look at those like Pat and count their blessings.
Deborah
I've been a full-time carer for my wife for 8 years now, she's a wheelchair user and latterly just about house-bound and confined to bed.
There's not much help available to men either Hester, I haven't had a day off in those 8 years.
Yes there are a few groups which hold get-togethers but it's difficult to attend them as she needs constant attendance.
My husband has terminal cancer but is ‘well’ at the moment. We live in the US and I haven’t been offered any help, and hardly anyone asks me how I am coping! I order medications, keep on top of appointments, handle the insurance and payment side of all things medical, (which can be a full time job in itself when claims are mishandled), and take care of all things home related. Sometimes I think I’ll explode! Thank heavens for good TV shows and chocolate!
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