Cannot go on like this

Hi Jessie,

I am sorry to hear the latest account of your brother’s situation. I agree, what this disease does to those we love is truly horrendous.

I can relate to much of what you describe. My late husband, slept more and more, only being awake for meals and through some of his personal care. Of course, things can deteriorate from this point quite rapidly, though equally there is that plateauing that can happen for a bit. That not knowing what the next day will bring is tough; we can only cope with what is immediately in front of us.

You describe your brother being able to get to the toilet (even though there was the fall). In our case, my husband, very rapidly, became incontinent The deterioration in this respect just unfolded before my eyes over a short period of time, probably a matter of days.

Close to the end was my husband’s only experience of agitation, and this was managed by medication. It must be awful to hear your brother expressing a wish to die; my husband seemed mostly unaware of his descent and was generally accepting of the altered reality, living only in each present moment.

The palliative care team really are the experts to manage this. I hope you had satisfaction from your meeting with them.

Sorry I can’t be of more help.

Ax

Dear Asa21

You are a help, thank you. 

My brother always lived alone and fiercely independent.  It was that drive to be independent that encouraged him to try to get to the bathroom when he was too weak.

We tried to get him home but it didn't work out. Now the hospital is looking for a nursing home with no luck.

I feel this not getting to the toilet will distress him even more.

I spoke to the palliative care team and they agreed that were he is now is not the right place but finding a placements seems to be difficult (for some reason) I don't know what?

All the best to you

Hi

My late husband had multiple falls as the legs get weaker and body weight increases because of steroids. I had to call ambulance every time he fell. We started on incontinence pads but still for the initial few days it was difficult to make him understand to stay in bed. Palliative care team is the best team under this circumstance. We got carers 3 times a day and it was a blessing. Speak to the doctors in  the hospital. 

Dear Jyo

Thank you. 

The body weight is definitely a problem and the fact he has no strength in his thin legs and arms.

In someways it feels safer in hospital but he's on a main ward at moment under constant observation.  Not exactly a calm environment. 

I just don't know the answer....

The reason is probably a general shortage of nursing home places anyway, coupled with a need to be able to provide end of life care. Sadly homes are businesses, and will very often take a private client over a CHC one as the latter is usually a much lower rate. However places do sometimes come up and someone should be checking daily . 

Hi Tashie

Thanks for explaining that.  My Dad who had dementia self funded for 3 years and that made my brother so angry. I asked for CHC funding to be considered and it was fast tracked due to hom being EOL. It's awful to think though of them haggling over prices, extremely sad.

I'm so sorry you are going through this. Are you in contact with the hospice? They can support you emotionally as well as practically. Is there an oncology ward at the hospice. That helped my husband massively. Do you have nurses through the consultant that you can contact? They understand the progression better than anyone. Take care

Hi CT

Sorry I didn't reply, I guess you know how it is.

So my brother is still on the ward bit going to nursing home next week for palliative care.

He no longer gets out to walk to toilet, still sleeps a lot, still agitated, maybe on a bit of a plateau at moment, I don't know....?

Just want to get him out of main hospital, this nursing home has lovely gardens so hopefully will get him outside whilst weather is nice.

Fingers crossed it happens this week.

I really hope the move happens soon so you're all in a calmer environment.  It's very difficult seeing the changes happen. Thinking of you x