Hello and Happy New Year to you!
I am sorry that it has taken me so long to get around to doing this blog, my time has been focused on more urgent priorities.
I am fortunate to live around the corner from my parents who are elderly and have been independent until quite recently. My Dad is 80 and 9 years was diagnosed with cancer in his bowel. He had his descending colon removed and made a full recovery. He had to watch what he ate and his former diet of wholemeal bread and lots of fruit changed to white bread and only certain fruit.
A couple of years later he contracted Non-Hodgkin’s Lymphoma, and this manifested itself in the form of tumours in his throat and roof of his mouth, these were eradicated with radiation and once again he made a good recovery.
A couple of years ago he began to experience breathing difficulties and after numerous investigations was found to have Pulmonary Fibrosis, probably caused by his occupation as a centre lathe turner in engineering. His condition very slowly deteriorated, and we noticed he had started to lose weight. He became breathless easily and didn’t have as much energy. That didn’t stop him though, he continued to be independent, resisting offers of help until it became so advanced that the hospital suggested trying some new medication. This was quite toxic and so he was given literature to see which one he fancied out of a choice of two. He tried the lesser of the 2 evils and whether it was the timing of this new drastic treatment or the impact on him, he began to deteriorate rapidly. Over the past 3 months he has gone from being completely independent, driving, shopping with my Mum, enjoying his food, having a laugh (or a moan) at current affairs to palliative care.
He talked about his intention to die at home and that he didn’t want to be resuscitated. He is supported by a team of excellent community staff from different disciplines. He is involved with all the decisions and choices made regarding what happens during his care and afterwards. He has talked to us about his funeral and what music he wants to be played.
He has talked to me about the type of death that he wants to have, about how to support Mum with finances after the event and what he wants to happen afterwards.
At the same time I am listening to Mum’s concerns, about his deterioration and her anxieties about the future. She is doing a fantastic job caring for his hygiene, helping to avoid any pressure area problems and making sure he has his medication. She is doing a fantastic job and after we all noticed her looking tired, Dad agreed to have carers coming in to help him get washed and dressed in the mornings. He is to be assessed next week for this.
It is difficult being a nurse when you have someone seriously ill in your family. I wanted to put him on a fluid balance chart, keep checking his observations and take over control of his care. This wasn’t appropriate though as I am his daughter. I was able to make suggestions and encourage him to try certain things and respect his wishes. My job for the last few months has been to do everything that supports them both so that they can carry on. Mum has enough to do to look after him and herself, so I have been doing housework, cooking, bringing their washing home, then ironing it, shopping, doing errands such as dropping in repeat prescriptions or collecting medication from the chemist. I have also been helping our youngest sister, Julie, maintain contact with them, whilst at the same time supporting her in what is going to be a heart breaking time for us all.
He is a brilliant Dad, very clever, could seem to do anything. He designed and built an extension on their house and did everything with the help of my Uncle Stan (his brother who is sadly gone), except the plastering.
My sisters and I used to laugh at the Dad in Chitty Chitty Bang Bang because he was like Dad. Always tinkering and making things. I wanted to tell him how I felt, I could tell him I love him, but couldn’t explain all the reasons why, and all the things I had to thank him for. I talked to my daughter in law Zoe, about it. Zoe lost her Mum a few years ago and she said that it was essential to tell him now, if I couldn’t say it, to write a letter, and then he would be able to respond while he still could. I am pleased to say that I took her advice and wrote a letter thanking him for all the love, fun and exciting times over the years, citing specific things and events. He was able to thank me for it and we cried together holding hands.
I remember one Friday night he came home from work and said:- “Right then, get your stuff together – lets go camping at the sea-side!” Such excitement! I remember the sigh my Mum gave and only when I was a Mother myself did I realise that she would have to rush around and make sure that we had got food, clothes, sleeping bags, etc.etc., My youngest sister would be about 2 at the time, and we were aware that she had developmental problems, so she required specific care too. We asked Dad what we could take and he replied:- “Anything as long as it will fit into a shoe box!” Helen and I became quite skilled at fitting things in our boxes. Very happy days, and idyllic childhood where we had lots of adventures, and saw lots of Harlech!
Needless to say my knitting has gone on hold. I was doing a beautiful Beryl jacket for myself in Wensleydale long wool, but that has been put on one side. I needed small things that are easy to carry. I started to work on a couple of identical aran jumpers for my grandsons, Miles and Chester.
I also have a special pink bag which is brilliant for mindless knitting. I use it to knit plain cardigans for the two newcomers in our family last year, Chester and Max.
At the moment I am doing a cardigan for Max. Edie has asked me for a pink and purple jumper for her doll. (You will see from an earlier post on July 22nd, that Edie loves to dress her dolls and teddies). That will be the next easy and therapeutic project!
When Julie (youngest sister) was rushed up to A&E a few days ago, and then admitted to the neuro ward, I took my little pink bag and sat with her for hours knitting away, taking her the toilet when she needed to go in the wheelchair and helping her to understand the various staff who came and asked her questions. The staff on Ward 218 at the Royal Stoke Hospital are fantastic and helped Julie to understand what was happening.
I would just like to take this opportunity to thank my wonderful family.
My wonderful husband Mike has been ace in his usual way, very calm, taking each problem and sorting it out, making things easier, having a laugh with us and sitting with my Dad every Friday so I can take my Mum out.
Uncle John has been coming up every Monday so that I can take my Mum to see Julie in her home.
My son’s have both been supportive, in doing so many kind things, moving furniture, talking or more like listening to me, sending us on a hotel break and spa break. I love you both and we will get through this together.
My Mum, who has been the most patient amazing nurse with my Dad. He wouldn’t have the level of care he is currently receiving anywhere else. We will take her on holiday this summer as well as Julie.
My close family, sister Helen, sister in law Brenda, and brother in law Tim.
Everyone has been so supportive and kind.
My friends have been marvellous, understanding that I can’t be as socially active as I was, not going out before Christmas etc.,
I will include some pictures of some of the content of this blog, and I am not sure when I will be posting again. Sometimes life just gets in the way doesn’t it? We have to focus on what is important and do our best.
I think my knitting has kept me sane. I know that this intense activity of caring will pass and become something less dramatic and urgent. I can’t picture the future without Dad and I can’t imagine not being able to share things with him. I am just living one week at a time.
I have tried to maintain my fortnightly knitting group and value these very special friends who understand, know me, and talk about wool, yarn and puppies.
Knitting for the grandchildren is a comfort, hugging them and talking to them is an even better comfort!
Thank you for being interested in my ramblings. It has been cathartic putting it all into text, and a few tears have been shed which as a retired Mental Health Nurse, I know have done me good!