Worried

[Dutchdor]

I feel quite sad knowing I am slowly losing the husband I have and the true friend who understands me completely and who was my rock. Now the roles have reversed and he relies on me to be the one to lean on and organise everything he used to do for me. It really scares me and other people don’t really understand that I am grieving. I am quite depressed as I cannot stop thinking about the very uncertain future and feel quite lonely! I cannot tell my kids how I feel in detail as my daughter lost her husband to Leukemia last year, aso my grief is extra hard to deal with as I am constantly thinking of her and my grandsons too! My son has a busy life working from home and at the same time looking after 2 teenage children for 50% of the week as he and mother of his kids divorced nearly 4 years ago. I need to know how to stay calm and not think too far ahead as I’m scared I will not cope properly.

 

[Kevinl]

Yes you can, that and hello and welcome. K

 

[Dutchdor]

Thank you for that positive reply! I will do my utmost best obviously!

 

[Kevinl]

No secret I've been on here for over 10 years wife first then mum too, I packed our youngest off to live with his big sister when he was 16.
Us carers are just colateral damage, I didn't want to make the kids suffer too.
I never expected to be retired and alone I guess as a man I expected I'd go first, bit it is what it is and we're all here to help if we can. K

 

[Rishile]

I feel quite sad knowing I am slowly losing the husband I have and the true friend who understands me completely and who was my rock. Now the roles have reversed and he relies on me to be the one to lean on and organise everything he used to do for me. It really scares me and other people don’t really understand that I am grieving. I am quite depressed as I cannot stop thinking about the very uncertain future and feel quite lonely! I cannot tell my kids how I feel in detail as my daughter lost her husband to Leukemia last year, aso my grief is extra hard to deal with as I am constantly thinking of her and my grandsons too! My son has a busy life working from home and at the same time looking after 2 teenage children for 50% of the week as he and mother of his kids divorced nearly 4 years ago. I need to know how to stay calm and not think too far ahead as I’m scared I will not cope properly.

Hi @Dutchdor and welcome to the forum. You will find a friendly group of people here who will help you if they can. I'm sure everyone on the forum has experienced what you are going through and understands totally. I know I do.

I'm not sure where you are along the dementia journey but it is a difficult journey and, sadly, it will be up to you to make it as smooth as possible. Believe me, that isn't always easy.

However, it sounds as if you still love your husband and are doing your best for him. It is a difficult transition to being partners in everything to suddenly having to do everything on your own without the person you have had for support.

I had to change from being half of a partnership where everything was shared to having to do everything myself and make all the decisions regardless of knowing anything about the problem in hand. I learnt a lot along the way and made mistakes but I still keep learning.

One thing I have tried to do is provide the same loving environment for my husband that he has always known. We still do some of the things we always loved to do. Simple things like having a cup of coffee whilst watching the birds in the garden. Talking, endlessly. I still try to get my husband to have conversations. To start with, he didn't understand much and his concentration was dreadful but he is improving and now initiates these conversations himself. It is helping me understand how he feels and what is bothering/frightening him. Remember that he is still your husband even if he has changed a lot. He just has different needs. Marriage always requires adjustments to changing situations and this is just another of those changes.

Don't expect miracles - take each day as it comes and enjoy each other's company as you always have. Your world that you knew will shrink but you have to be prepared for that. Yes, it's lonely but it doesn't have to be if you work at it.

Believe me, none of this is easy. It took me a while to get to this point and I'm still working at improving our lives but we still love each other after 40 years of marriage. How many other people can say that? Don't look too far into the future. I always think that if my husband had some other sort of disability, would I be looking at the future or trying to enjoy today?

 

[2ndAlto]

Welcome to the forum @Dutchdor.

I agree with @Rishile above, 100%. Yes, we are all grieving and yes we all wish we didn't have to deal with this present and worry about the future but we cope with the situation as best we can because that's what we do. Don't worry too much about what the future might bring, as with all illnesses, your husband's dementia will proceed at its own pace and you can only cross bridges when you get to them.