The other day I attended my first ever carer's meeting. I've been looking for support for over 4 years now and finally this was made available to me. During the discussion the consultant made the point that an early diagnosis can be devastating to the person with dementia. After he had finished speaking, and I could hold back no longer, and he's a perfectly nice gentleman by the way, I hit him with the question - Have you ever considered the damage it does to a couple's relationship when one of the partner has changes in their behaviour and the professionals don't seem to take it seriously? Fortunately for me another member of the group backed me up by saying she knew of a couple who had actually temporarily split up because she thought by his behaviour that he was having an affair. That made me feel so much better that he was confronted by this. Dementia affects the entire family and surely it is better for the patient if the family are knowledgeable and aware of strategies for coping. I hope he and his team act on this point of view in future.
Making the professionals understand
- Thread starter Callandergirl
- Start date
Yes .... this is a massive problem for couples and for the doctors. A massive problem. I think at the heart of it is the fact that the doctor's duty is to the patient - not to anybody else. Therefore they have to think of the patient first.
I remember when we were told together that my husband had brain damage and small vessel disease I burst out 'I am not going mad then'.
Looking back, I am very ashamed. But we had had years and years of my husband telling me I was the one with problems, whenever I tried to get him to get help ... so I know exactly what you are saying.
And now I understand why the consultant just sat and looked at me deadpan. The strain is unbelievable. But I was not the ill person. My poor husband was.
You have all my sympathy.
I remember when we were told together that my husband had brain damage and small vessel disease I burst out 'I am not going mad then'.
Looking back, I am very ashamed. But we had had years and years of my husband telling me I was the one with problems, whenever I tried to get him to get help ... so I know exactly what you are saying.
And now I understand why the consultant just sat and looked at me deadpan. The strain is unbelievable. But I was not the ill person. My poor husband was.
You have all my sympathy.
Thank you for your reply Butter. Just to know someone has felt the same makes me feel better as I'm sure you know. I still feel though that for the sake of the patient it would be better if they could get help and understanding from their loved ones earlier than they do at the moment. I hope you've had a good day today.
I know how you feel, my GP,who is a lovely man and I would not take J to see anyone else. I had suspicions a few years before J was diagnosed and mentioned it to the GP, that I had worries about his memory Some quick tests were done and I was told well I have no worries about J I did say to myself " well I am "
Since then ( it is now about 9 yrs since my worries began ) J has very slowly deteriorated, and we still have a normal life, or this is what people think !!!
Because he looks very healthy, everyone thinks he is OK and that I must be too GP included Luckily I have been very healthy but recently have had several minor things wrong .... rashes, itching, joint pains etc I have visited the GP with some of them as I now worry about what would happen if I was really ill, as we have no family close by to help if I was unable to care for him, so hope to stop anything as soon as possible. GP never ever even asks me how J is ? or I am coping with him ? he appears to me to me to ignore the fact that these symptoms could be caused by the stress of caring I do love J so much that I suppose I hide how hard life is but I am sure if anyone did ask I would crumble and it would all come out
Sorry to go on a bit but have been up a long time with J who is now tucked up in bed fast asleep
Since then ( it is now about 9 yrs since my worries began ) J has very slowly deteriorated, and we still have a normal life, or this is what people think !!!
Because he looks very healthy, everyone thinks he is OK and that I must be too GP included Luckily I have been very healthy but recently have had several minor things wrong .... rashes, itching, joint pains etc I have visited the GP with some of them as I now worry about what would happen if I was really ill, as we have no family close by to help if I was unable to care for him, so hope to stop anything as soon as possible. GP never ever even asks me how J is ? or I am coping with him ? he appears to me to me to ignore the fact that these symptoms could be caused by the stress of caring I do love J so much that I suppose I hide how hard life is but I am sure if anyone did ask I would crumble and it would all come out
Sorry to go on a bit but have been up a long time with J who is now tucked up in bed fast asleep
I feel the same too. When I speak to family and friends I think they think that I am making a fuss and exaggerating and that its me that's the problem. Also if I ever forget something my husband will say his Alzheimer's is contagious as though I have it too. It really doesn't help me when he says that because I want to build up my confidence again. I do forget things but I do all the finances, the cars, the housework, planning, appointments, work too etc and he really just doesn't see how much I am carrying on my shoulders. At one time I felt that my husband's health problem had actually all been turned round to it being me. I was advised by my husband's consultant to go to my gp which I did and they suggested cognitive behaviour but I haven't got time to go! I also haven't got time to do the homework necessary so I was advised to self refer myself to get some counselling and was sent a list but I would have to pay! Also still haven't got the time and this came about because years of my husband's behaviour got to me.
I actually can see the funny side now of your comment about going mad Butter. Thanks for putting that on it here. I am trying to cope alone now.
Reds
I actually can see the funny side now of your comment about going mad Butter. Thanks for putting that on it here. I am trying to cope alone now.
Reds
Oh yes! My father had dementia but wasn't diagnosed until the GP put it on his death certificate as the cause of death! I'd been struggling for years, not understanding his behaviour, (he was 98 when he died) and at the same time my husband was showing lots of Dementia symptoms but I was too preoccupied coping with them both that I didn't even know . It was a further three years before my husband was diagnosed.I'M SO TIRED.
So, yes, a diagnosis sooner, not later, would make a difference...my husband could have hadAricept sooner too.
So, yes, a diagnosis sooner, not later, would make a difference...my husband could have hadAricept sooner too.
Professionals?
The true 'Professional' can only understand when they have cared for a relative with AD.
Most I came across in the system were unaware of the stress and grief they caused to carers due to their lack of understanding. To avoid the added burden of stress and frustration I chose to ignore them and did things my way.
The true 'Professional' can only understand when they have cared for a relative with AD.
Most I came across in the system were unaware of the stress and grief they caused to carers due to their lack of understanding. To avoid the added burden of stress and frustration I chose to ignore them and did things my way.
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