I have just joined the Forum after my husband was recently diagnosed with dementia which the Neurologist says is NOT Alzheimers but the Neuropsychologist says it is, mixed with frontotemporal lobe dementia. All I know is that he is not managing, and hasn't been for at least the last 5 years, as he should have been able to. We don't live in the UK so he has been prescribed Ebixa, which has made a tremendous difference, turning the clock back at least 2 years. But, how does one cope with one's anger at the unfairness of it all, he was only just over 60 when this all started, and now every day is a challenge. I am losing the love of my life and I don't know what to do.
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- Thread starter Badietta
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Badietta I feel a great deal of sympathy for you.
I started losing my wife at the age of 56 but suspect, looking back, that it started earlier than that.
The thing is, you are now faced with challenges for which you will need help and guidance and I think you will find that help and guidance on this site.
Have a look at the Alzheimers website links and these will give you an idea of how to cope.
In the meantime, you are not alone and help is available.
I started losing my wife at the age of 56 but suspect, looking back, that it started earlier than that.
The thing is, you are now faced with challenges for which you will need help and guidance and I think you will find that help and guidance on this site.
Have a look at the Alzheimers website links and these will give you an idea of how to cope.
In the meantime, you are not alone and help is available.
Thanks Grommit
Coping with this while also living in a foreign country has it's own special challenges, of which the language is only one. What small amount of the language he had has now largely gone; he can't find his way anywhere, and can no longer manage our finances. I feel completely overwhelmed by everything and then the panic sets in. I think that I must have read just about everything I can find but still have no real answers and 2 Doctors arguing about what exactly the problem is doesn't help. I am also feeling bereft as 2 people that I thought of as really close friends, both of whom have lost their husbands to AD, now seem to be avoiding me. I tell myself that this is because of their own feelings of loss, but it doesn't help. When did all this start? You're right. If I look back, probably at least 5 years ago, possibly more. We are still young (ish!). How did this happen? The unanswerable question.
Coping with this while also living in a foreign country has it's own special challenges, of which the language is only one. What small amount of the language he had has now largely gone; he can't find his way anywhere, and can no longer manage our finances. I feel completely overwhelmed by everything and then the panic sets in. I think that I must have read just about everything I can find but still have no real answers and 2 Doctors arguing about what exactly the problem is doesn't help. I am also feeling bereft as 2 people that I thought of as really close friends, both of whom have lost their husbands to AD, now seem to be avoiding me. I tell myself that this is because of their own feelings of loss, but it doesn't help. When did all this start? You're right. If I look back, probably at least 5 years ago, possibly more. We are still young (ish!). How did this happen? The unanswerable question.
Hello Badietta and welcome to Talking Point from me too.
I am sorry to hear about your husband but hope you find it helpful to post here on the Forum.
Do you get any support at all? Let us know if you have any particular problems and you will no doubt find that others have experienced something similar.
As Grommit mentioned there are some helpful Factsheets. If you click on this link you can open any of interest to you.
Keep in touch and let us know how you are getting along.
Best wishes
I am sorry to hear about your husband but hope you find it helpful to post here on the Forum.
Do you get any support at all? Let us know if you have any particular problems and you will no doubt find that others have experienced something similar.
As Grommit mentioned there are some helpful Factsheets. If you click on this link you can open any of interest to you.
Keep in touch and let us know how you are getting along.
Best wishes
Hi Badietta,
I am sorry to hear of your situation, although it is a very familiar one to me. My wife, Sharon, was diagnosed nine years ago, at age 48, with either atypical frontotemporal lobe dementia &/or atypical Alzheimer's. Don't let the disagreement between the docs worry you, it is an academic exercise that has little effect on you or your husband. The management and outcome of both dementias are very similar. The fact that he has responded so well to Ebixa is great, and probably indicates that there is some Alzheimer's in the mix. Sharon was on Ebixa but showed no improvement, whether it slowed the progress or not there is really no way of telling.
You ask how one deals with the anger and unfairness, and how did this happen. Everyone deals with this differently. For us, there was no anger, we accepted it as one of those things that is outside of human control and we moved on to trying to enjoy what was ahead of us as much as possible, and squeeze whatever goodness we could out of the time we had left together. If Sharon had been brain damaged by a drunk driver, or a gunshot, or a falling plane, I would have been angry. For these are things that could be avoided if someone had done something different. But this, it falls into a fact of nature - the sky is blue, snow is cold, Sharon has dementia, grass is green. It does no good to question any of these, you might learn why, but you will not change them.
I wish you both well as you go down this path. You are not alone in this.
I am sorry to hear of your situation, although it is a very familiar one to me. My wife, Sharon, was diagnosed nine years ago, at age 48, with either atypical frontotemporal lobe dementia &/or atypical Alzheimer's. Don't let the disagreement between the docs worry you, it is an academic exercise that has little effect on you or your husband. The management and outcome of both dementias are very similar. The fact that he has responded so well to Ebixa is great, and probably indicates that there is some Alzheimer's in the mix. Sharon was on Ebixa but showed no improvement, whether it slowed the progress or not there is really no way of telling.
You ask how one deals with the anger and unfairness, and how did this happen. Everyone deals with this differently. For us, there was no anger, we accepted it as one of those things that is outside of human control and we moved on to trying to enjoy what was ahead of us as much as possible, and squeeze whatever goodness we could out of the time we had left together. If Sharon had been brain damaged by a drunk driver, or a gunshot, or a falling plane, I would have been angry. For these are things that could be avoided if someone had done something different. But this, it falls into a fact of nature - the sky is blue, snow is cold, Sharon has dementia, grass is green. It does no good to question any of these, you might learn why, but you will not change them.
I wish you both well as you go down this path. You are not alone in this.
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