Hi Peter, I'm really sorry that you are in this situation. You asked how did we reach that decision in regards to quality over quantity. I think it's a really personal decision. I know I would take quality over quantity because it is an important differentiation. The only example I can give you is the one about my mother. She had a massive stroke that paralysed her left side. In the first nursing home it was a complete nightmare. She had 8 falls out of bed with horrendous injuries as she could not break her fall. The staff could not keep a drink accessible to her and changed the water jug every day without anyone realising that no water had been used from it. The food was disgusting. The care was hostile. Her buzzer would be tied up and out of her reach every morning when I came in. She would be distressed and very thirsty. One morning she had no voice and told me in whispers that she had fallen out of bed and had laid there until the morning staff arrived. She called out for help all night. I didn't believe her because I thought such a thing was impossible. My mother was hallucinating because she wasn overdosed on a Norspan patch of 20mg. Fevers, nightmares and really vivid hallucinations of flies and spiders crawling over her bed and over the ceiling. So many times and so many stories. Its was a terrible saga. I learned something important. There is nothing worse than seeing a parent in pain and you are unable to ease that pain. It took us almost 2 years to move her to another nursing home amidst threats and blackmail from the nursing home. There were many times I wanted her to die as I would have given up and died as quickly as possible. She fought on every day. The new nursing home was heavenly and she had 8 good years slowly deteriorating towards the end of her life. Those 10 years put an incredible strain on me. Enormous stress and financially took its toll with legal fees. Personally, I would have wanted to be euthanised on day one after the stroke but my mother always wanted to live. She never wanted to leave us and I understand that completely and I would never have made a decision against her wishes.
On the good side we had wonderful times and lots of laughter. My mother told us many stories about her young life that we didn't know. We loved her and wanted her to live always. It was a very slow and long goodbye and when she died there were not many tears as I'd cried them over 10 years. I was glad she was free of her earthly body and the pain it gave her.
One thing that helped was I had a gold heart on a long chain that was really expensive but sometimes I would leave it with my mum and tell her that I left my heart with her. She would give it back to me the next time I visited and tell me to take her heart with me. I put that necklace on every day and take my mother into the world with me. Always with me. It gave me great comfort. I have two daughters so I could not leave just one of them that heart so I bought another one to always wear. I love knowing that one day my girls will carry me with them into the world too, every day and think of me. I will remember my mother through my children and grandchildren because they all share her DNA.
Everyone is different and we will make our own choices about our lives. Traditions also help. For 10 years my children and their children would o the nursing home every Christmas Eve (in the morning) and sing for my mother. We would all go out to lunch together afterwards at the same place on the way home. After my mother died, we still go there each year (not this Covid year) as my children wanted to maintain that tradition in honour of my mum.
Sorry for long post. Traditions and memories are important ways to heal from loss so perhaps set up your family to help them deal with this in the future. Fight if you can but know the limitations of your body. You will know when to stop fighting or to fight to your last breath. Only you will know when the time is right. In the meantime, fight to leave your family with the best memories of you. Tell them your stories and your memories of them as babies and children. Play them your songs. My mother and I would Walts in her blue princess chair to a song she loved. It was German but translated to "I dance with you into heaven". We played it as the first song at her funeral and many others that meant a great deal to her. Every small thing makes the loss a little easier for those left behind and that's important. It's a massive loss to lose a mother or a father and the world is a different place without them.
I wish you strength to get through what lays ahead but the last thing to give up would be hope. We fight with hope every day that the next day will be better or the news will be better. It's all we have so don't let go of it. Good luck.
