My husband has been in the hospice for over 3 weeks now and his meds have been tweaked and the seizures are now under control. He seems to have dementia symptoms which I believe can be normal with this type of tumour He was diagnosed end of November after what we thought was a stroke. The mri showed a glio in left temporal lobe he had op in Dec . We were passed to the Palliative team at home who have been great. Eventually he was moved to the hospice a few weeks ago to be honest we thought that would be to the end. He was treated for constipation and an infection. He now seem ‘better’ in the sense he is able to walk about chatting somewhat incoherently to the nurses he likes to sit with them !!!! The consultant advised that eventually he would become bedbound
Now we have been advised that he needs to go to a Nursing Home as he could be like this for a number of weeks and obviously the hospice is a short stay facility. They have applied for funding for the one to one care that’s needed.
I‘m not sure why I’m writing all this my one real fear is him passing alone without us being with him. I told him at the beginning that we would be with him…. I feel dreadful
HI Lindy
lovely to hear from you again and sorry to hear about all that you've been through for the last few weeks.
I understand where you are coming from. During G's journey he had a few days in the local hospice in the August to get his focal seizures under control and we were faced with the same dilemma. He was still physically fit but his symptoms were dementia like. We elected to bring him home- to be honest I didn't have much other choice at this time and I had to make it clear to the medical team that I could not guarantee to keep him safe. G would disappear off out for walks and be gone for hours!
He was readmitted to the hospice for the final stage of his journey that October and we were worried about him passing away alone. The hospice staff were fabulous and as soon as there were any changes to his breathing, they phoned and told us to come in. These nurses are the experts and know the signs. If you get the nursing home place, their staff too should know the signs and call you in time. Obviously things happen and it might not prove to be possible to get there in time.
Please do not feel dreadful. You are doing an incredible job of supporting him in difficult circumstances while dealing with your own emotions.
This is a safe and supportive space so please reach out here anytime. There's always someone about to listen who gets it, someone to hold your hand and to offer a virtual hug when its needed. You're not alone. We've got you.
It’s always good to talk so please remember that you can also call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.
sending you a huge virtual hug and lots of strength
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
