This morning for example, I hoisted Chris from the bed to the shower seat where he used the loo, then shaved etc. I then wheeled him to have a shower, washed him and then wheeled him back to the bed room. We then thought the easiest way to get his trousers on would be in bed, so I hoisted him back into bed. Every time I turned him though to pull up his pants, then trousers, (he has to stay sitting up or he can't breathe) he slipped down the bed. Chris was going to have a nap, but it was easier to get him back in his wheelchair rather than hoist him back up the bed. Using the hoist as such is no problem, moving it around is hard work, I don't have to push it far though so we manage.
I telephoned Chris's palliative care nurse to ask her to order a hospital bed for Chris. She told me that she hasn't been able to find a care package for Chris yet? What does that mean? It sounds like she is going to buy something in a store and it is out of stock. Is this because Chris qualifies for continuing care and therefore the NHS pays? Would it be different if we were paying privately? I think maybe it would. I am coping fine, I have family to help, but what if I was alone with no help? How can you not find a care package?
As I said we are coping, but some help would give me a break now and then.
I also asked if the lorazepam could be prescribed in liquid form and if Oramorph would make Chris constipated? Yes to the second question, so that explains why we have had to deal with that little problem. The GP phoned and they have ordered a liquid form of diazapam as Chris was even choking on the lorazapam tablet that goes under the tongue and they don't do that in liquid form.
Angela then explained that Oromorph relaxes everything and slows things down like the bowel. It also dries things up and although Chris still has mucous build ups, they have been a lot less and he hasn't had to use the cough assist as much. He is sleeping better too, so I guess the pros out weigh the negatives on that one.
The physio popped in this morning to see how things were. Chris's shoulder has been hurting a while, I think from trying to push himself up a while back. She said he had pulled a tendon in his shoulder and to rest it. Well he is now anyway as he doesn't have the strength to push himself up any more.
Chris needed the loo again and Kevin was here to help me with Chris's trousers and moving him, but then he had to leave. I used the hoist to get Chris back into his wheelchair, but we had to leave the trousers and pants so Chris's bottom half got wrapped up like a chrisalis in towels and blankets. Needs must I guess.
An awful lot of our cattle went today as part of the running down of the farm business. Chris wanted to watch the last load go today. It is hard for him, 201 cattle altogether were left, cows and calves, heifers, steers and bulls. A life time of vocation disappearing. We have our final machinery sale on Saturday and then apart from winding down with all the office side that will be it, we will be on our own, independent. The farm will continue on with new blood, new life, new ideas and someone else will learn to love Gwarth-an-drea as much as we do, c'est la vie I guess. I know one thing, we are forever thankful to Chris's sister and husband for helping us through all this, I am not sure we would have coped on our own.
Tam and Karl will be home this evening full of holiday tales and photographs and Chleo will be home tomorrow. Chris is having some friends visit this evening too, there will be no time for melancholy.
Our lives have changed so much these past 15 months, you just never know what is around the corner. You have a lot to answer for MND.
