looking ahead...

[AliceA]

You are on a good track, WA. Slow routines and actions helps me so much.
We have been through so much over the years, our ages make it tricky sometimes but yes, we are in it together too.
Not striving for a different life is enabling, this life is teaching me so much about our strengths and weaknesses. Life contracts outwardly but expands inwardly I find. Sweet dreams.

 

[kindred]

You are on a good track, WA. Slow routines and actions helps me so much.
We have been through so much over the years, our ages make it tricky sometimes but yes, we are in it together too.
Not striving for a different life is enabling, this life is teaching me so much about our strengths and weaknesses. Life contracts outwardly but expands inwardly I find. Sweet dreams.

Oh how beautiful. Thank YOU. with love, Geraldinexx

 

[SaraKate]

Ive taken days reading your generous responses to my question. Im so grateful that you talk so openly here, it gives me a place to come to. My husband does not yet have a diagnosis and is trying to avoid going to the doctor, and I have been ashamed of acknowledging that I would LIKE a diagnosis since it would explain why he has been so unhappy with me for so many years, during the time when our life has apparently improved, and things have been good for us as a family. That so many of you have had the experience of thinking your marriage was failing when instead it was a disease, gives me hope that we can jointly name what is going wrong, and plan a future - even one that includes such a terrible illness and difficult prospects. What is hard at the moment is being the only one in the family who thinks that there is something wrong other than 'just going through a bad patch' or having a 'bad week' when it has been patches and weeks that add up to years.
I am so grateful to those of you who have the honesty to say that they wouldn't choose to be carers, and that they resent the work. And I so admire those of you who draw on decades of love and kindness to accept the burden. I know that you all try to do it well. I'm going to come back here again and again through the next months I know. Being the partner with the knowledge of what is really going on is a lonely place. I cant argue - because it is really pointless and any dispute makes him really furious. I don't get any thanks for the caring that I do. I cant ask for family support because nobody knows, and I can't really say anything until we do know. My daughter, and my husband's PA have spoken to me about things like memory loss and mood swings, and this is a huge comfort but I dont want to lean on them, it doesnt seem fair. Looking ahead, I think it's going to be about boundaries - what I will and will not give up in order to keep him company and support him. I know it's a stupid thing to say - but after about six years of deterioration this is pretty well the worst time to call on my love and loyalty. But I see that this is the nature of the disease - its slow destruction. I will try to hold on to the bright moments, as you advise, and I expect, if he gets a diagnosis, he will understand that we should try for happy times while we still can. But right now, he does not even want to be with me and it feels like we just get through. - and this is before we have learned that there is anything wrong!

 

[canary]

I understand you sentiments entirely @SaraKate and I think getting a diagnosis is a very good idea because it validates your concerns, gives a reason for your problems and opens up doors for help - all of which makes it easier to care.

I must warn you, though, that your husband may not accept that he has something wrong with him, even after the diagnosis. There is a very little talked about, but very common symptom of dementia called anosognosia which is that they are are unable to consider the possibility that they have something wrong with them. They may be aware that Something Is Not Right, but the idea that this Something is them is beyond their comprehension. It looks like denial, but it is not - the bit of the brain that can understand that they have something wrong is damaged and not working. Both my mum and my OH had/have this symptom and it means that I have never been able to discuss their condition with them. Because they cannot understand that they are the cause of the problems they usually blame other things/people around and their main carer (you and me) gets most of the blame.

It is very likely that you will not be able to jointly plan for the future and face problems together, Im sorry to say. It is likely to continue to be a one sided affair, but at least you will know what is happening and be able to sit down and think things through.

 

[Guzelle]

I was thinking of leaving my OH because of his personality changes and I was unable to get through to him, until I saw a program on TV about a marriage couple whose husband was suffering from early onset dementia and realised my OH had dementia not early onset though.

 

[SaraKate]

Dear Guzelle, thank you for telling me this. My difficulty has been that this has been very slow coming on, and in some ways my husband has always been a difficult man to live with. Looking back, (only 20 years or so) I see a very gradual change from charming eccentricity, to unkindness and bullying. It's so sad to say!
And Canary - thank you for your wisdom. Help me with this? He's saying that he's not afraid of seeing the neurologist. He challenges me - he says. do you think I have a brain tumour? - so some of this is on the table. Do you think even so, he will deny a diagnosis when/if it comes?

 

[canary]

Do you think even so, he will deny a diagnosis when/if it comes?

Yes, he might do. He might accept it in the neurologists office, but then later the memory of it will have changed. Alternatively he might accept the diagnosis in the general sense, but be completely unable to see the symptoms in himself
Im not saying that he definitely will do this, Im just warning you that it might happen.

 

[SaraKate]

Thank you both for sharing. Sarahdun how very young he seems,- perhaps you are in yout 60s too? and how glad I am that you went back to work and have a life of your own, which I think I will have to do, if we go down this route.
Canary - you are so right, he is capable of having a conversation and then after reporting it completely differently. I will be prepared for this, thanks to your advice,

 

[Guzelle]

My OH has forgotten he has dementia,he remembered at first 2 and a half years ago but has no idea now.

 

[WA123]

Ive taken days reading your generous responses to my question. Im so grateful that you talk so openly here, it gives me a place to come to. My husband does not yet have a diagnosis and is trying to avoid going to the doctor, and I have been ashamed of acknowledging that I would LIKE a diagnosis since it would explain why he has been so unhappy with me for so many years, during the time when our life has apparently improved, and things have been good for us as a family. That so many of you have had the experience of thinking your marriage was failing when instead it was a disease, gives me hope that we can jointly name what is going wrong, and plan a future - even one that includes such a terrible illness and difficult prospects. What is hard at the moment is being the only one in the family who thinks that there is something wrong other than 'just going through a bad patch' or having a 'bad week' when it has been patches and weeks that add up to years.
I am so grateful to those of you who have the honesty to say that they wouldn't choose to be carers, and that they resent the work. And I so admire those of you who draw on decades of love and kindness to accept the burden. I know that you all try to do it well. I'm going to come back here again and again through the next months I know. Being the partner with the knowledge of what is really going on is a lonely place. I cant argue - because it is really pointless and any dispute makes him really furious. I don't get any thanks for the caring that I do. I cant ask for family support because nobody knows, and I can't really say anything until we do know. My daughter, and my husband's PA have spoken to me about things like memory loss and mood swings, and this is a huge comfort but I dont want to lean on them, it doesnt seem fair. Looking ahead, I think it's going to be about boundaries - what I will and will not give up in order to keep him company and support him. I know it's a stupid thing to say - but after about six years of deterioration this is pretty well the worst time to call on my love and loyalty. But I see that this is the nature of the disease - its slow destruction. I will try to hold on to the bright moments, as you advise, and I expect, if he gets a diagnosis, he will understand that we should try for happy times while we still can. But right now, he does not even want to be with me and it feels like we just get through. - and this is before we have learned that there is anything wrong!

When you say you're husband doesn't want to be with you at the moment It's more likely that he is so focused on his own survival there is no room in his head for anything else. Whether he has a diagnosis or not you can still put certain strategies in place which will help both of you but will also begin to clear his mind. Don't ask questions, don't disagree (something I found particularly hard at the beginning), remove areas of stress from his life, all of these and more will help. A friend whose wife had vascular dementia gave me these pieces of advice when my husband was first diagnosed and I found they transformed our lives overnight. As for your husband understanding that you should try for the happy times while you still can I agree with what others have said on here. His mind won't work like that so it will be up to you. I said exactly that to my husband straight after his diagnosis and he just looked panic stricken. I have learnt however that with the right strategies in place (and me being the grown-up in our relationship) it is possible to enjoy good times even though they might not be exactly what we had planned.