It is Sunday; yesterday I made apple turnovers. We were given free apples. They were sweet, melted in the mouth – a yummyness of goodiness – that is if you ignore the sugar and the fat content in the puff pastry!
Today I made scones. Scones seem to have little fat and not too much sugar; I packed them full of sultanas and raisins. His heart’s favourite is scones…
To-day is day 4 in this new way of looking at things, becoming more pro=active. I have a sort of transition to make that is from wife, to wife carer, and I do not seem to be managing it well really.
Beloved husband did not sleep much at all last night, because of the breathlessness. I must admit it is a tricky one this. Shallow shallow breathing. Not like asthma, which I am more used to. The old familiar, heart wrenching question, 999?
We decided we would cope. At one thirty, at three thirty…
We held hands. He sat on the edge of the bed, bolt upright. Me next to him, aching to phone 999. Wondering how to ease the situation.
At least we didn’t argue. At least there was no depression or frustration. But it was worse really; breathlessness is such a horrible thing.
With it comes tiredness and I am sure, if the breathlessness is like the asthma, it may bring with it the feeling of your chest wall closing in, maybe some pain there too.
I googled it just now. Yet there is little immediate help on the net, and what there is looks scary. It talks of end stage, of morphine, all frightening really. And i’m just thinking maybe the oxygen mask would just help.
Beloved husband is a good man at heart. He is not like the several rat bags of mankind that I have had the misfortune of knowing. He loves people so much and will help anyone. I’m kind of the animal lady, you know. Love animals. Not so much people. Haven’t got the save sense of human love that Beloved Husband has. I trust the loyalty of an animal any day of the week.
Thing is; my wake up call has really woken me up now. We have had little help with the symptoms so far; I know. NHS teams are over-worked anyway. Yet maybe we have both done far too much accepting things and sitting back.
I was amazed at the wisdom of my thirty year old daughter to-day. I wonder at how our roles are changing. I used to be the wise one, the strong one. The one who could help, come up with ideas. Our roles are changing. Maybe when you retire, and I retired very, very early due to ill health, you loose threads of life. Maybe. I don’t know.
She had such good advice for me re the breathing and energy and the depression. I was on about being more pro-active. About helping when Beloved Husband reaches for clothes he has worn for several days anyway. She mentioned to empty a drawer, one near waist, chest height. She said to put in a day’s worth of clothes in there. Like comfy easy to put on things. A complete out fit that he can easily reach, as it is less tiresome to pull out a drawer than to reach up and go through a wardrobe.
Such good advice and I am kicking myself for not thinking of this.
I have to think, pre-empt more. Explore more of my role as wife/carer. What I can do on a daily basis to make life easier.
I find the stuff on breathless and heart failure scary. I wanted practical advice. Maybe remembering breathing exercises, maybe asking for the oxygen. I do not want to go down the morphine route, it all seems too much. I’m wondering why they just dont say that home oxygen helps. And if they did anyway, I do not think Beloved husband would want this at home. He has already sent back the high loo seats, the perching stool; the rest bar that helps you in bed to sit up more comfortably.
I long to turn the clock back. That great scene in Dirty Dancing, you know, the one on the log.
I’ve not known Beloved for that long really. We are not even celebrating our fourth wedding anniversary yet.
I long to have shared those daft moments, to have had a previous history of youthly fun and nonesense. Yet too late, now when breath is so short on occasions…
Yet we can still sit on the bed together and hold hands. In my head I was mantaring from the Bhagavad Gita; OM.
Tomorrow is day 5 of the new voyage. Hoping my heart and soul has better courage tomorrow. I need to be more proactive. No matter how hard the reading is. Why though is it so hard to google stuff on this? I normally am not too bad. Yet it is tricky to google the stuff that is needed. If courage fails I will have to phone the teams involved and ask.
There is summer in jars in our pantry. Thank OM for jam…