Yes, I find asking for support and help very difficult. But I have had to humble myself and make it known how I can be helped by others.
I have been blessed in that my husband's family (mum, brother, sister, and brothers. Especially, my sister in law and my husband's eldest brother) have been financially supportive. They gifted us one day a week of daycare, and have taken "rota" over the years so I could get away. As my husband, was so young, and his diagnosis was three years after he was fired from his job so no disability from the company. Which made our financial situation difficult, and I must be very careful with funds.
Our family is patchwork, Yours, Mine and Ours. My two children locally, one my husband's and one is my daughter, his step daughter, who he raised lovingly like a blood father, are very supportive and helpful. My daughter and son in law have also gifted one day a week of daycare for my husband.
My stepson has been supportive in the past being part of rota care three years ago when I made a trip to the USA. But as children of a divorce, they love their father but live in another country and have careers and young families. I know that they love us and that must be enough for me. Sometimes I have been irritated with my stepdaughter who does not think practically about helping, and she is extremely affected by the deterioration of her father and it makes her unhappy and uncomfortable. She does not offer help. But offers of help are rare ......I find I must ask for help.
I really try to have no expectations of the children who live abroad it is just too difficult for us to see them and they are making their way in life. The reality of our situation was, we were more like doting uncle and auntie, than involved parents. (And financial support for their care and private schools) The children were very young when their parents divorced and their mother and their step father were their primary influence-rs and did the parenting. And a good job they made of it!
Our youngest son, comes every Sunday evening and makes dinner for his dad and I go out. He is the most physically involved with his father. Occasionally bathing him, but every week helping him to use the toilet, and getting him undressed and into bed while I am out.
I would no longer ask my husband's siblings to rota for care when I wish to travel. The care now it too intimate and I cannot expect them to participate in this.
I will travel to the USA in April for a wedding, I will stay the mother of the bride, a dear friend and not spend much money. The cost of the trip is for the care of my husband. The daycare will take him for 5 days while I am away and I have one carer on contract and my son will share the weekend and nights while I am away. The biggest cost of travel for me is Nicky's care.
But my point in all this is.....if I want help I must ask for help with no expectations or recriminations. If I am going to have relief and a life while being a long-term carer, I must get over my own ego and ask for help. It is not a comfortable place to be or easy to do.
I would of course wish to be completely independent and self sufficient, but my life did not turn out like that. My dear friend tells me that I am giving others the joy of being of service and help, which is a blessing. She is a lemonade maker!!!