I can’t believe just how different I feel from a couple of days ago, to today. There are two people that I really need to thank for it, and both of them are district nurses. I didn’t realise that when I agreed to haveing the enemas done that I would find two such angles amongst those administrating them. Yesterday, the nurse who I think is the boss of the whole group was here and she has not put my mind at rest totally. Even though I knew that I didn’t need a catheter right at this minute, the whole thing about calling for help if I had problems was still bugging me. Anyone who has been reading for a while will already know the palaver that leaving the house and going to and from a hospital is, and although I had been told that I could call NHS 24 who would probably call one of the district nurses out, there still was a huge issue niggling at me.
The district nurses who come to see me, work out of a local health center and although they have a range of different things to hand, it isn’t like a hospital where everything for every possibility is there just waiting. If they did get the call, it would depend on my luck if they could help me or not, simply due to what or what wasn’t, in the store cupboard that day. I might still land up finding myself sitting here waiting for them to find either an ambulance with a stairclimber or a four man crew, to get me down all the stairs to the street. Getting there is usually the easy part, hopefully, made easier due to it being an emergency, it’s getting home that is the nightmare. I could be waiting for hours just to get home again, the worst to date was 7 hours. I didn’t need to explain this to the nurse here yesterday, she was very aware of the horror stories, it was then that she suggested the most logical thing yet, that has been said in this whole thing. She asked if I would like her to order a kit for me, so that if I couldn’t go to the loo, all I had to do, was call them, and someone would come to my aid, knowing I had everything here waiting. As she said, “if it never gets used, it doesn’t matter, it’s there just in case.”
The weight that lifted off me was far greater than I realised when she said it. It was just two weeks ago that I found myself sitting in the kitchen chain smoking and in tears because my bladder hadn’t emitted even a drip for over 10hours. I wasn’t in pain, but I was dreading the outcome, that was becoming more likely by the minute, that call that might have just found me once again at the mercy of the ambulance service. Until we get my bowels working to an acceptable level, it is something that could happen again with ease. When I told Adam later that evening that they were putting together a kit for me, he admitted that he too had been worrying about just the same thing. He has suffered alongside me on many occasions, and he knows as well as I do, what the effect on me is. I hate to say this, but it is so rare to come across someone in the NHS who works on logic, not procedures. I really feel that I have found a group of angels, who are going to do whatever they can to make my life easier. Although I haven’t yet spoken to them about it yet, I know from the little they have told me about their work, that they are also the people who will be with me through to my end. They provide the palliative care that I was so lost about months ago.
Actually, the whole plan that I was putting together stalled, when I found out that Jefferys’ grave, was in my ex-husband’s name. That is now all sorted out and the grave deeds have been transferred into my name. I don’t know why I haven’t picked up from where I left off, but I didn’t. I guess there was so much going on when the corrected deeds returned from Aberdeen, that it all sort of landed up shelved. I know they say that when you don’t carry through a plan, it’s because you don’t want to, that’s not the truth by a long shot. All those who matter, now knows my wishes for what happens after I die, and that I have found the funeral directors who actually have the package that I want for my funeral or “none funeral” would be closer. I just need to make a phone call and get the whole thing set up and paid for.
We do now have the whole issue of carers sorted out and we have made our first contacts with the social work department, so we are moving forwards with other pieces of what will happen as the end get’s closer. It’s just things haven’t quite happened in the order that I had them planned in, but that’s life I suppose, best-laid plans and all that. I guess when I started this post by saying that I am in a very different place from just a few days ago, is the reason why I once more feel that I can even think about my plans. I have been in a constant state of flux for a long time really. I’ve moved forward one step and found myself going backward before I even noticed. I now feel that I have the right people around me, so if anything else tries to knock me over, they are there to help me get back to the surface again, and that’s something really special to have.
Please read my blog from 2 years ago today – 10/08/2014 – No friends
It’s one of those rare Sunday’s, I am typing in peace, no snoring from the settee as Adam has actually decided to sleep in our bed. I really shouldn’t mock it has been several years since he chose to start sleeping on the settee just so I could get the undisturbed sleep that is essential. At first, he would sleep here until I appeared and then head off to the bedroom, but slowly that stopped, he…..
I’m so glad to hear that you are feeling comfortable with your support team. What a huge weight off your mind. I hope you can relax a bit in the calm now. Best always to you!
The difference is huge. I have become so used to dealing with so much of my health alone, having that bit more medical support, from people who understand, changes everything. 😀
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I’m so happy you found your angels! It’s so important, when anyone in the home is seriously ill, to have truly caring support. Anything, no matter how small, that makes life easier is wonderful!
You are so right! I wish I had found them years ago, things might have been really different. 😀
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God is looking out for you and I. Never went to church, was always working. But I have been blessed with some angels myself. I like your team. Please take some time to relax and enjoy the peace with the new normal.
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Angels appear in the oddest of places. I’m glad some came to you.
So am I 😀
Wonderful! I’m so glad that you and Adam can have this greater peace of mind and support!!
I think we have needed it for a long time, it just wasn’t there, now at last it is 😀
Followed a link from Samuel Miller’s twitter feed…. you are an inspiration to those of us who live with chronic illness and struggle for validation from the doctors and those who should be supportive.
I am delighted at your success with getting a support network for this aspect of care established! How exhausting and stressful it must have been to go through all of that ruckus for one small therapeutic treatment.
Now that you have angels graced with common sense and willingness to be truly supportive in a meaningful way) you and your family members can have more time and focus for other living matters.That raises a smile.
It really does Sally. It’s been a long slow road to reach this point and I am so glad that I can breath again and just live, knowing I now have a network that works. I’m glad that you have found my blog and already know me through Twitter, I hope you return soon 🙂
I love it when someone with sense helps out. That’s excellent news about having the kit on hand. And, congratulations on having the deeds to your Son’s grave. I’ve still fighting over getting the deeds to my grave, and understand completely about different priorities.
Life sometimes runs away with us, especially when it involves our health. Good luck with sorting out your deeds, they are something that really matter. (((Hugs)))