They tell me, and I read, that dementia can tear families apart. Our diagnosis, for it is 'our' diagnosis, was delivered on December 19th 2013. It became clear after a time of reflection that the diagnosis was not the beginning. The beginning began years ago.
Our marriage has never been plain sailing, for me anyway, and I have bottled a great deal up over the past 43 years. Our five, now grown, kids knew it was such, but, understandably considered a lot of what went on, the norm. I have never been hit or cheated on, and nor does my husband drink too much. Well, that makes you lucky, is what I often heard and subsequently believed, telling myself that I was an ungrateful wretch who needed to be thankful for my blessings. Well, that may be true, but it doesn't address the needs I had, nor have right now, although it's a bit late for addressing now!
My husband has consistently refused to agree with the diagnosis, nor discuss it with me. Communication was never his strong point. Needless to say, this head burying left us all in a state of unrequited shock and we all reeled away into our caves, bar me, who doesn't have one to reel away in to. I tend to show my feelings, to talk about them and the past 18 months or so has been the most horrid ever, because I found my kids 'absent' for me. For him, their dad, they were encouraging and uplifting, allowing his ostrich like behaviour. I met the same with the dementia support folk who came to see us. How is he? is always the first question and somewhere much later I get asked how I am coping. I feel there is a big lack in support in that very area - to be precise, the time just after diagnosis. We all needed to know what the hell to do next, how to deal with our feelings, how to express them and to whom. I saw a counsellor for a bit, having to traipse to the mainland via ferry to do so, but we never moved anywhere with our sessions beyond a kindly ear and an hour of time.
Now, he has had the memory test and not done well, although he refuses to let any of us know the result. He has been angry with two of our kids who 'interfered' - one who had to tell him he could no longer employ him as Boat Skipper (obviously), and the other who called on Power of Attorney in order to get some information from the doctor. Mostly, my husband has been angry with me, and if one more person says, Well you always hurt the one you love' or some such platitudinous twaddle, I will have to scream. My husband has also been to see a specialist and goes again on Wed next, but the results of those meetings are banned from the rest of us. He is not far enough down the track to have PoA called on in order to get the information, and his biggest SHOUT is that we are taking him over. As a controlling man, this is understandably the very worst thing.
I went to see the GP last week and we talked about my exhaustion, more mental than physical, as I have to bend over backwards to make home life pleasant. The GP said I should call a family meet, but our kids live all across the world, so a group email is my only recourse. I sent one once before, an indepth honest one and received a dose of angry responses from my kids. I don't blame them. I told them I had planned to finally leave their father, and then came the diagnosis, throwing all my plans to the four winds that feel like 24 half the time. Perhaps I shouldn't have said that, but I did. Anyway, after much thought, I decided to stay. We live in a remote place and it just felt horribly wrong to skip off into happiness. I don't regret my decision.
So, this morning, before heading off to work (cleaning a holiday home) I sent that email, saying what I needed and that I needed them to listen up and support me. We are a very close family indeed, and the only reason they turned against me back then was because of their own shock.
I wait to see their responses, nothing yet.
I will have to write a book when all this is finally over. There are massive holes in the dementia support programmes, if there are programmes at all. Those who do work in this area are wonderful good people but floundering under the weight of what is now a fast growing epidemic.
Does anyone relate to any of this?
Good luck to all you carers.
Our marriage has never been plain sailing, for me anyway, and I have bottled a great deal up over the past 43 years. Our five, now grown, kids knew it was such, but, understandably considered a lot of what went on, the norm. I have never been hit or cheated on, and nor does my husband drink too much. Well, that makes you lucky, is what I often heard and subsequently believed, telling myself that I was an ungrateful wretch who needed to be thankful for my blessings. Well, that may be true, but it doesn't address the needs I had, nor have right now, although it's a bit late for addressing now!
My husband has consistently refused to agree with the diagnosis, nor discuss it with me. Communication was never his strong point. Needless to say, this head burying left us all in a state of unrequited shock and we all reeled away into our caves, bar me, who doesn't have one to reel away in to. I tend to show my feelings, to talk about them and the past 18 months or so has been the most horrid ever, because I found my kids 'absent' for me. For him, their dad, they were encouraging and uplifting, allowing his ostrich like behaviour. I met the same with the dementia support folk who came to see us. How is he? is always the first question and somewhere much later I get asked how I am coping. I feel there is a big lack in support in that very area - to be precise, the time just after diagnosis. We all needed to know what the hell to do next, how to deal with our feelings, how to express them and to whom. I saw a counsellor for a bit, having to traipse to the mainland via ferry to do so, but we never moved anywhere with our sessions beyond a kindly ear and an hour of time.
Now, he has had the memory test and not done well, although he refuses to let any of us know the result. He has been angry with two of our kids who 'interfered' - one who had to tell him he could no longer employ him as Boat Skipper (obviously), and the other who called on Power of Attorney in order to get some information from the doctor. Mostly, my husband has been angry with me, and if one more person says, Well you always hurt the one you love' or some such platitudinous twaddle, I will have to scream. My husband has also been to see a specialist and goes again on Wed next, but the results of those meetings are banned from the rest of us. He is not far enough down the track to have PoA called on in order to get the information, and his biggest SHOUT is that we are taking him over. As a controlling man, this is understandably the very worst thing.
I went to see the GP last week and we talked about my exhaustion, more mental than physical, as I have to bend over backwards to make home life pleasant. The GP said I should call a family meet, but our kids live all across the world, so a group email is my only recourse. I sent one once before, an indepth honest one and received a dose of angry responses from my kids. I don't blame them. I told them I had planned to finally leave their father, and then came the diagnosis, throwing all my plans to the four winds that feel like 24 half the time. Perhaps I shouldn't have said that, but I did. Anyway, after much thought, I decided to stay. We live in a remote place and it just felt horribly wrong to skip off into happiness. I don't regret my decision.
So, this morning, before heading off to work (cleaning a holiday home) I sent that email, saying what I needed and that I needed them to listen up and support me. We are a very close family indeed, and the only reason they turned against me back then was because of their own shock.
I wait to see their responses, nothing yet.
I will have to write a book when all this is finally over. There are massive holes in the dementia support programmes, if there are programmes at all. Those who do work in this area are wonderful good people but floundering under the weight of what is now a fast growing epidemic.
Does anyone relate to any of this?
Good luck to all you carers.