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Medical Forum / Diseases and Disorders / Alzheimer's / November 2004Az sufferer 'abandoned'
http://news.bbc.co.uk/1/hi/england/essex/4005867.stm  SignatureTumbleweed email replies not necessary but to contact use; tumbleweednews at hotmail dot com I'm not at all surprised at a stressed out caregiver having the impulse to dump and run, but I am a bit surprised it would happen in the UK, given the government and health insurance supports available for eldercare vs. the US. You have to wonder if this family was one of those who doggedly say they will "never" place a person in care, and then get themselves so painted into a corner emotionally with that stance that they can't take any small steps to deal with the building pressure i.e. they've gotten into the black and white headspace where the only option they will consider is "do it ALL" and when that begins to fail, they can't allow themselves to think of middle ground options, and eventually the lid blows off the cauldron. Mary G. > I'm not at all surprised at a stressed out caregiver having the > impulse to dump and run, but I am a bit surprised it would happen in [quoted text clipped - 11 lines] > > Mary G. I went through 11 months of increasing stress having to single handedly cope with my wife's problems whilst having long term psychiatric problems myself. It was not for the lack of seeking help and support from the professionals.Unfortunately in the UK there is an increasing tendency for mh professionals and social workers to sit back and leave family members/husbands/wives to just struggle through as best they can. Eventually when my wife did go into hospital for assessment i found that most relatives had been through the same struggle as i had had with the health professionals and social workers. In my own case i got to the edge of suicide on several occasions partly because of my own illness partly because of the added stress of dealing with an extremely ill partner. I hung in there with extreme difficulty at times but i personally would not be quick to condemn anyone who abandoned ship in such a situation. Unfortunately with an increasingly larger number of eldely people this is going to a problem that will only grow more prevalent/worse .Sadly i see few signs of anything being down to ease the burden for family members dealing with relatives with dementia or other severe illnesses. > I'm not at all surprised at a stressed out caregiver having the > impulse to dump and run, but I am a bit surprised it would happen in > the UK, given the government and health insurance supports available > for eldercare vs. the US. from the story, i gather that the couple's retirement home was in spain, where they would not have been eligible for the support they would get in the UK. i'm sure that having a language barrier probably didn't help the husband, either. since he was not in britain he didn't have access to the agencies and resources he would have in the UK. > http://news.bbc.co.uk/1/hi/england/essex/4005867.stm I can under stand the stress that the relatives are going through,looking after a dementia partner is hell. I get plenty of help regards disabity aids, trolleys bath lifts and now I have to push her round in a wheel chair if we go out.My partner is suffering from dementia and physical disability,obsessive compulsive disorder ,constantly checking electrical appliances,her memory span is about 20 seconds before I have to repeat myself over and over again.She is on Sertraline for her obsessive behaviour, but I have not seen any improvement yet.The OT visits every week and takes her out for a couple of hours.But when I have tried to explain the stress that I am under,she said that I need to go to my GP for a referral! to counselling. or a voluntary organisation, and that she cannot include me in her visit as it would in be in breach of confidents between my partner and the Hospital.What the hell am I doing here? We are a couple, not two strangers living in this place.What my partner does has an effect on me and viser versa. I am also having treatment for a heart condition and high blood pressure .This is independent living gone mad !.I might as well not be here, the only way ill' get help for myself is to go to the causality dept and sit there .john.m. John, I am so sorry you are going through such a rough time! I'm a newbie here, but I have gotten such good advice from everyone here. And one of the first things I was told was I need to take care of myself--without guilt. It was hard to get started but it has definitely helped me. I had to make arrangements for help for my parents, and take that first step in getting help for me. If you need to get a referral from your GP, then do so...do whatever you must do to help yourself. Please! donnah >> http://news.bbc.co.uk/1/hi/england/essex/4005867.stm >> [quoted text clipped - 18 lines] > way ill' get help for myself is to go to the causality dept and sit > there .john.m. > The OT visits every week > and takes her out for a couple of hours.But when I have tried to explain [quoted text clipped - 4 lines] > not two strangers living in this place.What my partner does has an effect on > me and viser versa. I If you were married the results would be different, since the hospital could then share information with you, but they are bound by the new HIPAA law, and many hospitals and doctors have misinterpreted the law by refusing to give information even to relatives who are primary caregivers. Get your LO to sign the hospital's release form so that they can give information to you. Use www.alz.org to locate your local Alzheimer's association chapter so that you can ask them about attending a caregiver's support group, and ask them to find you resources for respite care. You might also check and see if there's an adult day care center in your area, and get her there several days per week so that you get some respite. > If you were married the results would be different, since the > hospital could then share information with you, but they are [quoted text clipped - 7 lines] > in your area, and get her there several days per week so that you > get some respite. Tj I feel for you I know what you are going through there must be 1000's of carers suffering the same as you are.And in many cases its all to do with procedures and defensive practices on the part of the social workers . Denis, re day centres,she is going to a 2x hour session once a week on reminiscent ,or talking about the old days ,which she likes. so that gives me a chance of doing some shopping.She would not go to any day centre " with all those old people"( she is 79) my partner and my self were both nurses twenty years ago in a HOSPITAL FOR DEMENTIA PATIENTS! I was a charge nurse with a ward of 20x patients and although it was a stressful job we had other nurses/doctors to talk to and we went home in the evenings .I was then able to help the relatives with there problems and offer relief or respite care .But now...being with a my sick partner 24/7 things are completely different I feel as helpless as those relatives were, and I have no knowledge of the latest medications .During my time in nursing I have seen families completely break up and marriages fail because of the stress in looking after a Alzheimer relative so I have seen both sides of the situation. There is hardly any professional help for the carers own stress ...sorry to go so but it helps to talk.....john.m (((John))) since it helps to talk, keep talking! to us, to a counselor, to a close friend... but there is help available for the caregiver if you are willing to seek it out--as I had to do to save my sanity! and it makes a big difference when it's your own loved one. I also had to put aside my nursing skills/knowledge (as did my older sister) when it came to my Mum. Good luck, and please keep coming back, John...it does help. donnah >> If you were married the results would be different, since the >> hospital could then share information with you, but they are [quoted text clipped - 30 lines] > professional help for the carers own stress ...sorry to go so but it > helps to talk.....john.m > (((John))) > since it helps to talk, keep talking! to us, to a counselor, to a close [quoted text clipped - 12 lines] >yoga,What I need is someone to take her out or sit in to give me relief .We >should start a new thread and call it" Carers Abandoned" ..john.m >> (((John))) >> since it helps to talk, keep talking! to us, to a counselor, to a close [quoted text clipped - 13 lines] >>give me relief .We should start a new thread and call it" Carers >>Abandoned" ..john.m Yes, I know exactly what you mean. When it came down to the crunch, I had to find my own "grannysitter" or else use an extremely expensive nursing agency who wanted regular hours and regular days, and would not even consider coming out on a time by time basis. I also had to pay a lawyer to help us wade through the admissions process when it did come time to place her in a nursing home, when we were burnt out beyond belief. I got lucky in having a wonderful neighbor who, it seems has now found her "calling" and is doing relief care for others. We were very fortunate to have had her and now they are too. The support groups have their place, but you still have to go it alone for a lot of it...... SignatureRegards, Evelyn (to reply to me personally, remove 'sox") Evelyn, that is so true... I feel very fortunate in finding an agency that agreed to come in as little or as often as needed, and with Dad's hospice nurse getting involved now, I am hoping things will ease up a bit more. Yet, I am sitting here thinking how tomorrow will go when I take Mum to get her hair done...I hate the feeling of gearing myself up in case it's "one of those days." I have got to stop projecting how things will or will not go! Sigh, back to the books on letting go... donnah >>> (((John))) >>> since it helps to talk, keep talking! to us, to a counselor, to a [quoted text clipped - 27 lines] > her and now they are too. The support groups have their place, but > you still have to go it alone for a lot of it...... Yes Donnah, you must let go. Worrying about it today will not change tomorrow one little bit. The Bible tells us each day has enough trouble of its own; don't borrow it. Gwen > Evelyn, that is so true... > I feel very fortunate in finding an agency that agreed to come in as [quoted text clipped - 38 lines] > > her and now they are too. The support groups have their place, but > > you still have to go it alone for a lot of it...... Gwen, thank you for that reminder! I definitely needed to hear that... donnah > Yes Donnah, you must let go. Worrying about it today will not > change [quoted text clipped - 60 lines] >> > but >> > you still have to go it alone for a lot of it...... > I have got to stop projecting how things will or will not go! worrying will only get you (and you LO) upset. you just have to live in the moment, and roll with it. > >Thanks Donnah, I will look again at the leaflets from the carers voluntary > >groups, in this area which I have seen in the GP surgery.What put me off > >was classes in" nursing your relative in your home " Back care, Anger > >management( which made me even more angry) Relaxation and meditation though > >yoga,What I need is someone to take her out or sit in to give me relief .We > >should start a new thread and call it" Carers Abandoned" ..john.m believe it or not, amny caregivers *do* need anger management to help them manage the very justifiable anger at having to deal with all this crap by themselves. your posts show quite a bit of anger, so don't write it off --- it may actually help you deal with your frustration. relaxation is also necessary, and many caregivers are not able to relax easily, which is why meditation can be useful to help caregivers relax. the back care classes are useful for someone who has been lifting a late-stage patient in and out of bed, etc. you might also find it useful to attend a group just for the discussion --- you not only gain from the experience of others, but you begin to realize that you really aren't alone. don't write it off --- give it a try first. |
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