I sat down this afternoon and wrote a long email to the Irish Alzheimer's Society. Here's what I said. Hope it's ok. :
I was going to just post a reply to comments on your facebook page, re the interview from the radio show about the lack of support for people to continue caring for loved ones with dementia in their own homes, but didn't want the commentors there to think I was being critical or disagreeing with them - I'm not. My husband died a year ago, from alzheimer's disease (well, actually primary cause of death was aspiration pneumonia, but he wouldn't have had that had he not had alzheimer's disease, so it was aspiration pneumonia/alzheimer's disease on his Death Certificate - more about this in a moment!).
I cared for my husband at home for several years. He was very far from the picture usually portrayed in charity "advertising" for people with dementia - the elderly person who is fading gently and sweetly into forgetfullness, smiling lovingly & gratefully at their carer, who is smiling equally lovingly back. A major feature of William's illness was extreme paranoid psychosis. Hallucinations, delusions of a horrific and terrifying nature for him. He was on anti-psychotics and under the care of the totally brilliant Psych of Old Age team at UHW for several years. Nevertheless I was determined to keep him at home until he died. When I first began to suspect what might be wrong with him, I went and trained as a care assistant for the elderly - I got my FETAC Level 5 and all! And I did specific training in Dementia Care. The training did help. However, as years went on, and his condition deteriorated I realised that eventually, I would not be able to care for him at home. I had 45minutes per day from a Care Assistant, and 1 1/2 hours per week Home Help - and living in the country, their travelling time to us had to come out of that time. William had to have a male care assistant, as he would not allow a woman to help him with washing or dressing. Most of the time, he would not allow me to help him with personal care either - and by now, he was fully incontinent. I found the contents of pads hidden all over the place! He became increasingly aggressive (we never hear about this aspect of the illness - it's just whispered about, carer to carer!). The second time he tried to strangle me, I knew it was time for full time care for him. I thought it would be the end of him. I thought he would hate it. But by this time, he was loosing ground very rapidly here at home. He was refusing to eat enough. He was refusing to drink - I was doing well to get 1 small glass per day into him. He wouldn't take his medication - I had to give it covertly. He was only sleeping for 1 1/2 to 2 hours max at a time, through the 24 hours.
Eventually, after the processing & waiting for funding to be released took over five months, he went to a nursing home. And he absolutely thrived and blossomed in there! He took about three weeks to settle - and then he loved it. He loved walking in the wide, spacious, flat corridors. He loved the physiotherapy twice a week, he loved (oh, how he loved!) the meals in the dining room - I think he thought he was dining in a restaurant every time - and most of all, he loved having uniformed, male staff to help him. A uniformed staff nurse gave him his tablets - and he took them. No matter what time of day or night, if he went wandering - there was someone there to help him. I think he felt far more secure there. Best of all, his face would light up when he saw me coming in. He actually didn't realise that I wasn't there - somewhere around the building - all the time. He loved to go to his room with me and watch tv all afternoon. We regained a quality of life and a quality of relationship that we hadn't been able to sustain while I was trying to care for him at home.
So what I'm saying is - yes, there does need to be more funding for home care packages. But while campaigning for this, care needs to be taken that those who are finally forced into making the decision to have their loved ones cared for in a nursing home are never, ever, made to feel guilty - or any more guilty - for having to make that decision. None of us have ever made that decision lightly, or made that decision for our own sakes. Providing our loved ones with the very best care does not always mean caring for them ourselves. Sometimes, it means stepping back and letting others do the hands-on caring.
And back to what I said about the aspiration pneumonia and alzheimer's disease being on my husband's death certificate. I couldn't count the number of people I have spoken to over the years who didn't know that az/dementia is a terminal illness. They didn't realise that, eventually, people will die from it. And speaking to people I understand that even still, many doctors won't put az or dementia on a death certificate as a cause of death. They will put "Pneumonia" or even "frailty of old age" or whatever. Alzheimer's Disease should be put as a cause of death on death certificates - I'm sure it would get a lot more research funding, if it was out there exactly how many people die because of it. I know that the majority of them are elderly, and would be dying anyway - but nonetheless, those people could have lived a lot healthier old-ages were it not for their dementia, if you follow me? So, how about adding this to your campaigning? I would have been absolutely furious if my husband's years of suffering had been hidden or brushed under the carpet, by not appearing on his death certificate.
Thanks for reading this - like I said, I didn't just want to "reply" to the comments on the facebook page. I didn't want the commentors there to think I was criticising them. Carers can be very vulnurable.
Will let you know if I hear anything back from them next week. To be honest, I know it's not politically correct these days - but this thing of not saying that someone is "suffering from alzheimers disease or dementia" but that they are "living with alzheimers disease/dementia" I have to say it. It makes me absolutely furious. Maybe there are those who, in the early stages "live with" the disease. My husband, particularly as his illness went on most definitely suffered from it! And how very dare anyone belittle his suffering - and the suffering of all those we have loved and lost - for the sake of political correctness? You only have to read the heart-rending threads on here to see the suffering - and it's not confined to the people who have the illness. You wouldn't say to someone with terminal cancer that they are "living with cancer" until it kills them, would you?! Then why be so patronising about an illness just because it attacks the cognitive functions primarily?
Hmm. Maybe I better stay away from controversial news items until well after William's anniversary. Sorry folks - I suppose I am still so impotently furious at dementia!
I was going to just post a reply to comments on your facebook page, re the interview from the radio show about the lack of support for people to continue caring for loved ones with dementia in their own homes, but didn't want the commentors there to think I was being critical or disagreeing with them - I'm not. My husband died a year ago, from alzheimer's disease (well, actually primary cause of death was aspiration pneumonia, but he wouldn't have had that had he not had alzheimer's disease, so it was aspiration pneumonia/alzheimer's disease on his Death Certificate - more about this in a moment!).
I cared for my husband at home for several years. He was very far from the picture usually portrayed in charity "advertising" for people with dementia - the elderly person who is fading gently and sweetly into forgetfullness, smiling lovingly & gratefully at their carer, who is smiling equally lovingly back. A major feature of William's illness was extreme paranoid psychosis. Hallucinations, delusions of a horrific and terrifying nature for him. He was on anti-psychotics and under the care of the totally brilliant Psych of Old Age team at UHW for several years. Nevertheless I was determined to keep him at home until he died. When I first began to suspect what might be wrong with him, I went and trained as a care assistant for the elderly - I got my FETAC Level 5 and all! And I did specific training in Dementia Care. The training did help. However, as years went on, and his condition deteriorated I realised that eventually, I would not be able to care for him at home. I had 45minutes per day from a Care Assistant, and 1 1/2 hours per week Home Help - and living in the country, their travelling time to us had to come out of that time. William had to have a male care assistant, as he would not allow a woman to help him with washing or dressing. Most of the time, he would not allow me to help him with personal care either - and by now, he was fully incontinent. I found the contents of pads hidden all over the place! He became increasingly aggressive (we never hear about this aspect of the illness - it's just whispered about, carer to carer!). The second time he tried to strangle me, I knew it was time for full time care for him. I thought it would be the end of him. I thought he would hate it. But by this time, he was loosing ground very rapidly here at home. He was refusing to eat enough. He was refusing to drink - I was doing well to get 1 small glass per day into him. He wouldn't take his medication - I had to give it covertly. He was only sleeping for 1 1/2 to 2 hours max at a time, through the 24 hours.
Eventually, after the processing & waiting for funding to be released took over five months, he went to a nursing home. And he absolutely thrived and blossomed in there! He took about three weeks to settle - and then he loved it. He loved walking in the wide, spacious, flat corridors. He loved the physiotherapy twice a week, he loved (oh, how he loved!) the meals in the dining room - I think he thought he was dining in a restaurant every time - and most of all, he loved having uniformed, male staff to help him. A uniformed staff nurse gave him his tablets - and he took them. No matter what time of day or night, if he went wandering - there was someone there to help him. I think he felt far more secure there. Best of all, his face would light up when he saw me coming in. He actually didn't realise that I wasn't there - somewhere around the building - all the time. He loved to go to his room with me and watch tv all afternoon. We regained a quality of life and a quality of relationship that we hadn't been able to sustain while I was trying to care for him at home.
So what I'm saying is - yes, there does need to be more funding for home care packages. But while campaigning for this, care needs to be taken that those who are finally forced into making the decision to have their loved ones cared for in a nursing home are never, ever, made to feel guilty - or any more guilty - for having to make that decision. None of us have ever made that decision lightly, or made that decision for our own sakes. Providing our loved ones with the very best care does not always mean caring for them ourselves. Sometimes, it means stepping back and letting others do the hands-on caring.
And back to what I said about the aspiration pneumonia and alzheimer's disease being on my husband's death certificate. I couldn't count the number of people I have spoken to over the years who didn't know that az/dementia is a terminal illness. They didn't realise that, eventually, people will die from it. And speaking to people I understand that even still, many doctors won't put az or dementia on a death certificate as a cause of death. They will put "Pneumonia" or even "frailty of old age" or whatever. Alzheimer's Disease should be put as a cause of death on death certificates - I'm sure it would get a lot more research funding, if it was out there exactly how many people die because of it. I know that the majority of them are elderly, and would be dying anyway - but nonetheless, those people could have lived a lot healthier old-ages were it not for their dementia, if you follow me? So, how about adding this to your campaigning? I would have been absolutely furious if my husband's years of suffering had been hidden or brushed under the carpet, by not appearing on his death certificate.
Thanks for reading this - like I said, I didn't just want to "reply" to the comments on the facebook page. I didn't want the commentors there to think I was criticising them. Carers can be very vulnurable.
Will let you know if I hear anything back from them next week. To be honest, I know it's not politically correct these days - but this thing of not saying that someone is "suffering from alzheimers disease or dementia" but that they are "living with alzheimers disease/dementia" I have to say it. It makes me absolutely furious. Maybe there are those who, in the early stages "live with" the disease. My husband, particularly as his illness went on most definitely suffered from it! And how very dare anyone belittle his suffering - and the suffering of all those we have loved and lost - for the sake of political correctness? You only have to read the heart-rending threads on here to see the suffering - and it's not confined to the people who have the illness. You wouldn't say to someone with terminal cancer that they are "living with cancer" until it kills them, would you?! Then why be so patronising about an illness just because it attacks the cognitive functions primarily?
Hmm. Maybe I better stay away from controversial news items until well after William's anniversary. Sorry folks - I suppose I am still so impotently furious at dementia!
