Completely confused

Dear MarthaC

im so sorry you are going through this and have had such a tough time. 
I’m also living in a strange state. 
downstairs bed and commode. 
my husband hasn’t eaten properly for weeks. 
he barely uses the commode and has a catheter. 
he no longer speaks

he sleeps many hours every day.

it’s been weeks now like this. Each day I wonder, what will change today. Nothing does, but I know that one day we will fall off this plateau and it may be very dramatic. 

I don’t have anything helpful to say except you are not alone. We are in the strangest time, and there is no way to make sense of it. 
it’s horrible.

Take care

M 

Dear M, Thank-you for telling me that you understand. I am so very lonely with the whole experience even though I have close family and friends. I feel as if I have been entombed with him and all the structure of medical appointments etc. has gone so there is no one to talk to about what to expect or to discuss what is happening to us. It is the most terribly isolating experience so although I am very very sorry that you are having it too, I am comforted in a way to know that we are not alone. Thank-you very much. I hope that there can be a peaceful outcome for you and your husband. All good wishes. 

Hi Martha

I am sorry to read where your story is at now, I truly can not imagine how difficult this must be right now. Have you called the 24 hour hospice number? or maybe called the Macmillan team here to see if they can shed any light on your questions. I would hope that the hospice team should be able to help you. 

Please give them a call, reaching out may be exactly what you need to do to get the support you both need 

Lowe'

Thanks Lowedal. I have taken your advice and the people at the hospice were incredibly helpful. I Understand that there are no answers which doesn't make it any easier but it helps somewhat because I feel as if I am going mad. We've now been at home for 5 weeks and the saddest thing is that my husband is so very sad now. all the life has gone out of him. Its just dreaful. I cannot believe that I am praying for the inevitable end but I find that I am. Too sad for words. Thank-you so much for reaching out to me. 

It may sound strange to hear me say that I understand, but I do.. 

I am glad that you reached out to the hospice, and that they were incredibly helpful, but i am sad to read how the life has gone out of your husband and that he is so very sad, this is a terrible thing for you to experience, it really should never be this way, I do hope that he finds his peace and you, in some way, can find your own at the truly sad time.  

Lowe'

Dear Martha,

I would like to add the same as Lowe has said. It’s such a strange time. A friend who lost his wife a few years ago sent me a lovely message a few days ago. He described this time as being paralysed in a bad dream, knowing a nuclear bomb is going to drop and there’s no way to get out of the ditch. 

take care 

M