I am completely depleted, my battery is flat and I am emotionally drained. Tears of sadness well behind my vacant uncrying eyes. I make these observations of myself as I must now find ways of gathering strength for even tougher days ahead. Ironically, I am in good health, not depressed, eating well, sleeping well, functioning and keeping active with my pursuits.
The world is not the way I want it to be. My choices are to make it the way I want it to be or to accept the way it is. I seem incapable of either and expend tremendous energy looking for another way. In particular I want my Princess to be as happy as she can be while most of the time she is very very sad.
I write this for others who may be going through similar experiences living with someone they love who is chronically ill. It is very very hard. Today is a typical day out of many over recent years. Each 6 months as my Princess secondary progressive MS (meaning gets worse and worse faster and faster) has been the worst of our lives for the last 10 years. It is tough to hold it together.
Last week my Princess went to her art class in Benidoleig where she has been painting for about 6 years. It has been one of her last pleasures having given up her love of gardening and gardens many years ago. Her arms are becoming paralysed now so we knew painting was near an end too. Recently we have had to stop going out because it is too painful for her on the roads outside and we are struggling to get her from her indoor chair to her outdoor mobility scooter.
At art she fell off her chair while leaning forward. It took two hours for an ambulance to come. She lay on the floor in pain while waiting. In hospital she went through three hours of tests. This was extremely uncomfortable as it is hard to x ray someone who can’t move. She was deprived of water for 3 hours and became unable to talk as her mouth dried up. Normally she drinks between 10-12 litres of water to counteract the drying effects of her pain and spasm medication.
The only moment of relief was me asking another patient at the entrance for a cigarette for Karen while we waited for a taxi home. That got a smile from her. She knows I hate her smoking but hell it is one of the few things I can do to get a sad smile. She did say ‘if you take a photograph I will kill you.’
That is the end of art at the studio for her. That was a week ago. Most normal days now I listen to her in pain as she is taken from her bed in to a hoist to be washed, toiletted and dressed. 5 mornings out of 7 she will cry when we hug good morning and sometimes for half an hour. Then she is amazing as she buckles down to the day. In fact buckling is now what we will have to do to keep her in her chair. She reads and plays her word game and will play some online bridge.
As she does this she will get vicious spasms and cry out in pain. When her right leg goes in to spasm it is as hard as an iron bar and tries to unseat her from her chair. Hence the need for some sort of harness or seat belt. 6 days out of 7 now she is alone apart from the company of me and Smokey the cat.
John and Barry still care for her and come and sit with her. John is coming today to paint with her on the balcony. He is an amazing human being. Most people have now gone and do not get in touch with her. I am encouraging her to keep contacting people even though they do not check in with her for her own good.
The carers are fantastic people. Sabrina, Miranda and Peen. They say that they are and have been caring for many people in big houses who had parties and entertained many people over the years. As these people become ill they are left on their own sometimes with the carers the only people they see each day.
Last year we had over 20 events like bbq’s and dinner parties at our house. Usually 4-6 guests who often don’t know each other as introducing people we like to each other has been one of our pleasures in life. We did it very well. Everyone has a great time, they laugh, the eat and drink well and often stay late. Afterwards we got almost zero invites back.
I spoke to someone whose husband had Parkinsons over many years to see what experience others have. She told me people who had been friends sometimes crossed the street to the other side if they saw her coming. It is a very tough place to be caring for someone who is very ill and society does and will turn away from you.
This weekend was really bad. Lots of pain and discomfort but also really really sad. This is very understandable. I hugged her lots, played bridge with her, sat on the balcony talking Brexit and eating chocolate with her and we watched a fantastic Japan Scotland rugby match in the Rugby World Cup. I told her my plans for my MA project and she is now involved and interested. We watched movies and started watching succession and I occupy myself preparing interesting meals as a distraction.
So today I am wiped out and feel exhausted. But this fight is not yet over and I must find a way of being strong again and replenish my energy. I have been here before so many times. I understand why I am here and there is probably no other place to be in circumstances like these.
I am so grateful for my MA and the project I am doing. It distracts me and also helps me look at myself as a functioning organism who is tied up in terrible thoughts always pressing to try to make the world the way it cannot be.
So while my Princess (gently weeps) and paints with John I will go for a long walk by the sea and go in to the sea. I will breathe and fight with the thoughts that don’t help me. I will go for an almuerza (a light midday snack) and to the market for a steak for tonight. I will be mindful. I hope and trust that somehow I will be ready for this afternoon, evening and tomorrow.
For those in similar circumstances this is what a day in my life is currently like.