It's silly I know - but I have been feeling a bit out of place lately.
I am really grateful that my husband has access to a group that caters for younger people with dementia - and that he thoroughly enjoys it.
The group is run on alternate weeks - with the week it's not running being used for carers and people with dementia of all ages and stages.
They are lovely. I don't go every session because I work - but I try to get along occasionally.
As lovely as they are, I can't get past this sad feeling deep within me that asks "how have we have come to this?"
More and more these days my mind goes back a few years (and it is just a few years) when everything was so different. I think of the vibrant man that was my husband, the fun-loving father to my children - I picture him setting off to work, organising travel without a care in the world, making financial decisions, being the person so many of his friends could rely on and turn to for advice or a chat.
Then we walk into these meetings and I see my husband whisked away to play supervised games and I sit with the carers. I am told to share my experiences with other carers - but I have nothing much to offer. The people I am with are in their 70s or older, and although we can link on a common theme of having a spouse with dementia, our experiences are so different in many respects.
I am 53 - the people at these get-togethers who are my age are the children of parents who have been diagnosed with dementia. I can chat with them but feel I have nothing that will help them as I am experiencing dementia as a spouse.
When I chat to other spouses, I enjoy their company - but feel like I am skirting around issues all the time. I have to work full time so can't get to the various 'help groups' set up on weekdays. My worries are around paying the mortgage, helping our son through university. The help and benefits they are entitled to are not things I am entitled to a this time.
Mostly I am fine, I enjoy the sessions just for the company and a laugh - but there is always this internal scream I seem to be supressing.
Sorry to rattle on. I am just a little down today. I am just back from the library with my husband to get him registered as he has now decided to stop buying books and just borrow them (thank goodness).
Signing up should be a simple enough process but I found myself answering questions for my husband such as his date of birth, address, postcode - and when the librarian looked at me a bit oddly because I kept speaking up instead of my husband (who shows no physical signs of anything being wrong but was quite happy to declare himself 10 years younger than he actually is ) - I again found myself having to explain in a hushed voice (so as not to advertise it to the whole library) what my husband's situation was.
Don't get me wrong, she hadn't asked for the information - I just felt that in order to save my husband any struggle or discomfort, I needed to make his position clear.
Granted, the lady was very understanding and helpful, but it just seemed to tighten another knot in my stomach over what this disease is doing to my lovely man.
It probably didn't help that we went from the library to a nearby pop-in-parlour for the first time. I wanted to make sure my husband knows where it is so that he has a place to go for a chat during the week, should ever he feel the need to get out and about while I am working. I think it is something he would enjoy once the colder weather arrives and the daylight hours are shorter.
It is a lovely place and the people seem nice enough - but again, it was the glances from folk looking but trying not to be seen to be looking that made me feel awkward. We had a cup of tea and a chat - but in the quiet spells I just found myself looking around and thinking that visiting a pop-in-parlour had never been on my radar of things to achieve at this stage of my life.
I know, I know, I am being selfish. It's all about me. I know I need to 'get over myself' - the only thing that matters in all of this is my husband and his happiness, and he is happy.
I think that I am just extra sensitive today because it is my son's birthday - and in two days time it will be my daughter's birthday - and I just can't help thinking about how things used to be not so very long ago.
I just hope that in time this knot in my stomach, this 'silent scream' within, will diminish and the more normal rational me will re-emerge.
I am really grateful that my husband has access to a group that caters for younger people with dementia - and that he thoroughly enjoys it.
The group is run on alternate weeks - with the week it's not running being used for carers and people with dementia of all ages and stages.
They are lovely. I don't go every session because I work - but I try to get along occasionally.
As lovely as they are, I can't get past this sad feeling deep within me that asks "how have we have come to this?"
More and more these days my mind goes back a few years (and it is just a few years) when everything was so different. I think of the vibrant man that was my husband, the fun-loving father to my children - I picture him setting off to work, organising travel without a care in the world, making financial decisions, being the person so many of his friends could rely on and turn to for advice or a chat.
Then we walk into these meetings and I see my husband whisked away to play supervised games and I sit with the carers. I am told to share my experiences with other carers - but I have nothing much to offer. The people I am with are in their 70s or older, and although we can link on a common theme of having a spouse with dementia, our experiences are so different in many respects.
I am 53 - the people at these get-togethers who are my age are the children of parents who have been diagnosed with dementia. I can chat with them but feel I have nothing that will help them as I am experiencing dementia as a spouse.
When I chat to other spouses, I enjoy their company - but feel like I am skirting around issues all the time. I have to work full time so can't get to the various 'help groups' set up on weekdays. My worries are around paying the mortgage, helping our son through university. The help and benefits they are entitled to are not things I am entitled to a this time.
Mostly I am fine, I enjoy the sessions just for the company and a laugh - but there is always this internal scream I seem to be supressing.
Sorry to rattle on. I am just a little down today. I am just back from the library with my husband to get him registered as he has now decided to stop buying books and just borrow them (thank goodness).
Signing up should be a simple enough process but I found myself answering questions for my husband such as his date of birth, address, postcode - and when the librarian looked at me a bit oddly because I kept speaking up instead of my husband (who shows no physical signs of anything being wrong but was quite happy to declare himself 10 years younger than he actually is ) - I again found myself having to explain in a hushed voice (so as not to advertise it to the whole library) what my husband's situation was.
Don't get me wrong, she hadn't asked for the information - I just felt that in order to save my husband any struggle or discomfort, I needed to make his position clear.
Granted, the lady was very understanding and helpful, but it just seemed to tighten another knot in my stomach over what this disease is doing to my lovely man.
It probably didn't help that we went from the library to a nearby pop-in-parlour for the first time. I wanted to make sure my husband knows where it is so that he has a place to go for a chat during the week, should ever he feel the need to get out and about while I am working. I think it is something he would enjoy once the colder weather arrives and the daylight hours are shorter.
It is a lovely place and the people seem nice enough - but again, it was the glances from folk looking but trying not to be seen to be looking that made me feel awkward. We had a cup of tea and a chat - but in the quiet spells I just found myself looking around and thinking that visiting a pop-in-parlour had never been on my radar of things to achieve at this stage of my life.
I know, I know, I am being selfish. It's all about me. I know I need to 'get over myself' - the only thing that matters in all of this is my husband and his happiness, and he is happy.
I think that I am just extra sensitive today because it is my son's birthday - and in two days time it will be my daughter's birthday - and I just can't help thinking about how things used to be not so very long ago.
I just hope that in time this knot in my stomach, this 'silent scream' within, will diminish and the more normal rational me will re-emerge.