Hospice Life

It was a long and painful journey to the Hospice. For some reason, ambulances are not allowed under a certain railway bridge but buses go through. Surely, a bus is much bigger in all dimensions than an ambulance? This meant that we got held up with school traffic and then came round the long way via the motorway. I presumed I was their last job and they were trying to spin it out but no, it was only 330pm and they didn’t finish till 11pm.
They had ordered a stretcher for me which was good in that I could carry more on my lap but bad in that to be able to breathe properly I needed to be upright which then meant my legs were at a 90 degree to my body which severely pushes my hip into a position that hurts.
When we arrived at the Hospice, I was back into Bay 1 which is where I was last time but had the bed diagonally. I could see the bird feeders and there is lots of activity there including bluetits, greenfinches, chaffinches and some kind of yellow bird with a black cap (?black capped yellow hammer - or is that a made up name!!). Unfortunately, there is also a wood pigeon that frightens all the other birds off and tips the seeds to the ground so that it can get some. There is also a squirrel which appears to be unable to get in to the bird feeder but does the same thing and tips it up so it can get hold of the seeds via the ground!!!
I asked for some portable oxygen so that I could walk to the loo as I was now right beside it. There wasn’t any!!! Or the only portable oxygen there was, was the emergency oxygen so not portable for me. Apart from that, it was lovely to get back to a place where I knew I would be looked after and where the nurses although still short staffed did have more time for you and I wouldn’t be living in fear of catching an infection or suffering from starvation or dehydration and the food would be edible as well. It’s not that I’m extra fussy - well, I am - but I always thought food and drink is compatible with life!
I know I was a bit of a nuisance Tuesday night as I had too many visitors. We had planned for hubby and the children to come and see me as their eldest paternal cousin was off on Sunday to Australia for 6 - 12 months so we could all say our au revoirs. Then 2 of hubby’s friends came as well so I’m not sure I started off on the right foot here. Hubby’s niece had bought with her the books on Bangkok and Australia and so could show me her plans. She is going to stay with some extended paternal family in Melbourne and it all looks very exciting and I’m very jealous!!!
I was dreading saying ‘goodbye’ to hubby’s niece. This would be the first time I have said ‘goodbye’ and knowing I would never see them again. I tried really hard not to cry but couldn’t. Luckily, my friends managed to distract us both before we all came over emotional.
It is such an odd feeling saying ‘goodbye’. Should I live in hope that some miracle happens and that I am here next year when she returns or do I and her face reality? Actually, I feel I’ve accepted the reality of death and it is now a case of sooner than later but others haven’t. I’m not saying I haven’t given up hoping or fighting to live as long as I possibly can, it’s having a different mindset and adjusting to it.
That reminds me, on the ambulance trip here, I had a phone call from someone who I’m not sure whether they did not understand or accept that I was so ill last week. They started off by saying to me “I’m sorry you’ve been a little ill but glad you’re getting better now”. I don’t know whether it was said like that in case it upset me to acknowledge how ill I was last week or was it they couldn’t say the words “you were seriously ill” or “nearly died”. Even though I hate eupherisms for the word “death”, “ a little ill” didn’t feel the appropriate word either and makes me feel that what happened is not being taken seriously by that person. Is that because they can’t deal with it?
It makes it very hard for me when I do want to talk about my future limited life and death and how ill I will be before I die when people won’t even acknowledge that I’ve been very ill, let alone am going to die.
I have to live with this knowledge and I suppose it is easier for me as it’s my life and I’m not being left behind to deal with it than those who will have to pick the pieces up and carry on with life without me. It just limits my conversation with people if they are uncomfortable to even acknowledge my serious illness let alone talk about the real issue of death and I think it prevents then being able to support hubby and the children at the moment which they do need.
Anyway, after they all left on Tuesday night, I settled and slept well and did manage with help to get out to the toilet with the unportable portable oxygen.
Wednesday - the portable oxygen arrived and I was quite settled on 2 litres/min.
Again, I was in trouble as had a lot of visitors spaced out over the day so we couldn’t finish the admission paperwork. It is important to my emotional welfare to see people and actually, the hospice staff do acknowledge that, it is me feeling guilty about making too much noise for the others in the Bay and making it harder for the nurses to get some of their work done.
My childminder and hubby came in the morning and it was wonderful to see them and we had a good laugh but suddenly after lunch, I just got overwhelmed with tiredness and had to be helped into bed as I was all shaky. Painwise, I should have listened to the registrar and gone straight to the 80mg morphine twice a day rather than struggle on 60mg so she changed that and also took blood so we could start again in seeing where this crucial protein level was. I have always found heat really useful in pain control for my hip and spine secondaries but due to health and safety I’m not allowed to use my wheat bags. The Friends of the Hospice have bought these cupranol (sounds like wood preserver to me!!) heat pads which you stick on your clothes and give out heat for about 12 hours. They are wonderful but a bit awkward as they are heavy and tend to move around a bit and also looks like I’ve got a thick wad of tissue stuck to my side. It’s better than keep slugging back the morphine and gives usually the same amount of relief from pain. The other thing the registrar told me to do was if I was struggling with my breathing was to take lorazepam as it not only relaxes how you feel but does help open the airways as well so I have started to take one on the odd occasion when I feel my breathing is struggling.
Thursday - my sister bought my uncle to see me which was wonderful. As I said before, it is lovely to see him in an adults only setting so it was good to be with him, my sister and hubby. I felt sorry for her though as it was a long drive but she said she didn’t mind. My physio was trying to reassure him that he wouldn’t regret having his hip replaced as he is rather worried about it and has heard some scare stories. It will be a relief to the rest of the family when he does have it done as he was previously so active and now has a lot of trouble walking and driving even short distances.
Spent the afternoon with the student nurse trying to fill out the admission forms and trying to make head and tail of the abbreviations. I got good news about my protein level - it is now only 1-2 points below normal so that feels miraculous as well especially when she told me what it had measured previously -no wonder the doctors at the hospital were being cagey as it would have freaked me out.
Had a quiet evening.
Friday - I saw my friend and the vicar and my hubby, plus the occupational therapist to talk about bath aids and stair lifts. I also saw the social worker about trying to change my care package so that I had someone come in at lunch time on 2 days to make sure I ate something and that I wasn’t on my own. I am now very scared about being on my own and we need to reassess at home who has keys or whether to get a keypad so that people can let themselves get in and out as I can’t go up and down the stairs all the time.
After lunch, my niece (Magnolia) and her boyfriend came down from Essex to see me so I knew that would cheer me up. It seemed very inappropriate to stay in my Bay with 3 very ill and elderly ladies and unfortunately, the Bay can smell quite horrible at times so the social worker found us the visitor bedroom to sit in. This was down the end which is supposed to be wifi enabled so they did spend some time trying to get a good signal and found a place just behind the door!!! Not much help but it is improving so hopefully, I can get in there sometimes to post on the internet!!!
Then after school, AJ and Laura came in to see me and hubby took Magnolia and her boyfriend back to the station to get home.
I was so tired as I’d walked to the visitor’s bedroom and sat there for a couple of hours and then had moved up to the Day Room for the evening meal. When it was time for them to go, I tried to stand up to go back to bed and my legs wouldn’t hold me up at all so hubby had to get a wheelchair to get me back the short distance to my bed.
After they all went, I was really tearful. I was too tired to get undressed and couldn’t even face having someone do it for me so had some oromorph and lorazepam to calm me down and help by breathing and pain. Life felt so unfair. I feel so hard done by. The other women are all in their 70s which although may still be considered young, it is not the same as being 46 and facing death when you also have a small family.
I also feel very misunderstood by the hospice staff. I think a lot of this is my own fault as I’m so determined to be independent that they don’t tend to offer me help and so then I get upset when they assume I can do something that I can’t or that I can walk further than I can. Just because I did it one day, doesn’t mean I can do that the next. It also means that I feel I miss out on the psychological care but I probably put a barrier up by being cheerful as I’ve got used to “putting a brave face on” as I don’t want the children to know how much pain I’m in or how much I’m crying inside.
One of the ladies is so confused now and spent the whole evening crying out for her parents or for other presumably members of her family, one of which just happens to be my name. Each time she calls out, the other lady who is becoming increasingly confused answers her and then this sets off the man in the sideroom. I just hoped I was going to sleep tonight with all this noise.
Saturday 15th November - I did not sleep well. I think my brain is trained to ignore certain noises but not when your own name or ‘mum’ is being constantly cried out. I think anybody who has been a nurse or visited a place where there are elderly people notice that they frequently ask for their mum and that just rubs it in more that I won’t be here for my children.
3 of AJ’s friends’ mums came in to see me which was good and gave me a lovely distraction from the depressingness of the Bay. Then hubby and the children came in which was lovely. I played some Nintendo games with them so that felt like ‘normality’ was being maintained.
After they left, I was really tearful again. I really felt ignored and misunderstood by the hospice nurses. Luckily, one came and found me and when we discussed it, it is really that I do give this impression of being capable so that they don’t always offer me the assistance I do require as I look as if I’ve coped easily on my own which is not the case. As my GP said, I am a determined and stubborn woman and that means I give a false impression of my abilities when I’m ill as well as covering it all up for the sake of the children. I’m also not good at asking for help and tend to feel these really ill women deserve more care than I do.
Anyway, after this I felt better especially as they offered me a sideroom so I could get a break away from everyone in the Bay and that the nurses understood I wasn’t as strong as they thought.
Hubby’s friend’s came to see me later and helped move my stuff into the sideroom and bought over some sherry and lovely choccies so I had a very happy evening.

Labels - hospice