My wife Is end of life caring with stage 5 Huntington’s disease don’t know how I will cope without her!

The pain at seeing her starting to fade away is unbearable my heart is shredded !


Peter, so very sorry for you and your poor wife. You don’t say if she’s at home or not but seeing your loved one in such circumstances is hard. It’s difficult for those left behind to deal with the loss and I hope you have family around who can help you, now and in the future. We are always here for you and we all send you love and blessings. Remember to look after yourself so you can be strong both physically and mentally. Blessings being sent S xxx

Thank you,

She is now in 24 hour nursing care for end of life which I am finding very difficult to manage!

Family all around me which helps tremendously but does little to avert the constant stomach in throat syndrome!

Thanks for your concern


1 Like

Thank you .

Hope things are ok. Thinking of you. Sxx

Thanks Susie,

Kind regards


Sad to say my wife died at home in my arms at 1pm on the 1st Jan 2022 after struggling with Huntington’s disease for over 20 years.

She apparently died from a massive stroke and after successfully bringing her out of the care home for respite care and settling her in at home with a team of carers on Dec 3rd and loosing her on Jan 1st when she was doing so well has ripped me to shreds so to speak!

I am completely lost without her being around and I’m finding it difficult to envisage life without her.

1 Like

Oh PeteJ, how deeply deeply sad for you. There is no right words to say but just take all the time you need and love and care from others to get you through this heartbreaking time.

1 Like

I am so very sorry. I would like to be able to comfort you in person because words do not say enough.
I am pleased that she was at home and you were able to be there but it’s small comfort.
Bless you and in time the pain does demises but she will always be part of you. God bless you and keep safe. S xxx

Oh Pete, I’m so very sorry for your heartbreaking loss. You will be lost without her as you say as it’s so sudden for you and such early days yet.
I hope you have some support. Please look after yourself. Take care xx

Susie, thank you for your supportive words.

I am spending time with my son and daughter and their families and they are very supportive to say the least!

But I’m missing my wife with a deep sense of loss and that is difficult to relate to folk sometimes isn’t it?

We have to make sense of all this eventually when the pain of loss subsides and in the meantime try to stay positive!

Thank you


Pete I was very moved to read your first message and now the news of the recent death of your husband died on 10th November at our home and I know how devastating it is. Everyone says the pain will ease over time. I hope so. I know the thoughts of everyone in this community are with you

1 Like

Thank you for your kind words.
The pain of loss of my dear beautiful wife after a marriage of 53 years is almost to hard to bear.
Huntington’s disease is a horrible disease and she battled so bravely against it for over 20 years and was doing so well at home with the care plan that I put into place in our home.
New Year’s Day morning was spent with part of he family enjoying the time and the walk in the wheelchair after breakfast along the sea front which she absolutely loved…

We the returned home by car with the others returning to the house on foot with the dog!
We sat in facing armchairs talking about how we could improve our sleep patterns and suddenly noticed that she had stooped in the chair to pick something up of the floor and stayed in that position , I then thought that I would help her and said I’ll do that for and walked over and lifted her up and looked into her face only to find that she had passed awaya :pray:t4: Very traumatic for me and tears now come on a regular basis ! I miss her so much words cannot express the pain I feel about it all!


Dear Pete, I was so sorry to read your post about the loss of your much loved wife. It sounds as though she was surrounded by so much love during her life. I know it’s not much consolation to you at the moment as you just want her back but hopefully all the happy memories will help you. I lost my much loved Mum 21 years ago and initially tiny things that reminded me of her would set me off. I’m now watching my Dad go through end of life after a brief struggle with cancer. Life can be very cruel but what helped me in the past was all the memories. I think we are very lucky to have had love in our lives and the terrible grief we feel at the loss of a much loved person reflects the depth of that love. I wish you all the very best on your journey forward and hope that in time things become easier for you.

1 Like