When does the end of life begin? I certainly am not the first one to ask this question, but it is a tough one for caregivers. Shifting to palliative care is fraught with anxiety, uncertainty and fear.
The past few months of life has been challenging for my 94-year-old mother and myself. You see, first, she has needed a higher level of care from independent living to assisted living. (More about that challenging transition in a separate blog.) Second, she was admitted to the hospital a few days ago because she fell out of bed and hit her head. She had severe bronchitis and a flair up of her asthma. She was treated with intravenous antibiotics and steroids. Oh, and did I mention, she has dementia and spent three days in the hospital thinking she was at her childhood cottage in Pennsylvania amidst terrible flooding and she that was sleeping in a twin bed with her dead twin sister who is still very much alive? If she wasn’t at the cottage, she was at her lake house outside Hawthorne Florida that she owned 30 years ago hosting a large family party. Back in the day day she was famous for her large family get togethers at Little Orange Lake that involved lots of food including her famous Texas Sheet Cake and barbecues, tricks (e.g. a plastic egg she would toss to an unsuspecting guest and ask them how they would like their eggs), board games, cards, walks, fishing, canoeing, and enjoying the sun and water.
After many months of looking out for my mother, it is only now that I feel like an official family caregiver because she is not able to make decisions most of the time. The truth is I’ve been her caregiver for years now. The onset of caregiving was insidious. In the beginning I didn’t even realize I was becoming my mother’s caregiver. My head and heart are reeling. Today the gravity of my being my mother’s healthcare surrogate and her durable power of attorney hit me like a ton of bricks. I am called upon to make very tough decisions for her and the thought was terrifying initially.
I called my friend earlier today for a reality check of the situation and reassurance that I am doing what is right for my mother. I am very fortunate to have excellent guidance from two trusted friends. Both of these friends are also caregivers for their old parents; both have had long careers in nursing; and one of the friends is an internationally recognized gerontological nurse. I know I am lucky to have such valued confidents. The most valuable things they do for me is to gently listen to me, ask questions, help me to clarify my thoughts, help me to reach my own conclusions and help me find the way forward. I understand now that my doing what is right for Mom has to be guided by HER wishes. I know in my heart what Mom wants near the end of life because we have talked about it many times over the past 20 years. Last year, we took care of making her wishes official by creating a DNR (do not resuscitate) order, a living will, a durable power of attorney and a health care surrogate. These ongoing discussions and the legal documents give me the confidence and courage to make decisions for Mom when she is not able to. The documents were not enough, though, I had to step up to the challenges that faced me.
Today I was at a crossroads because I wasn’t absolutely sure I was acting in accordance with her wishes. I was in excruciating psychic and emotional pain as I thought about my mother, her wishes, the losses she has endured, and my experience of slowly losing the mother who once took care of me. She was always the strong woman who was always there for me and who supported me. I had the brilliant idea to pull out her living will, and it was right there in black and white – in the case of progressive dementia in which she couldn’t participate in her care she would not want CPR, hospitalization in an ICU, IV antibiotics, dialysis, feeding tubes, or a ventilator. We are at a transition point, a point in time in which the focus of care changes and someone – me – has to advocate to make sure decisions by all her care providers are aligned with her preferences. Am I ready for this awesome responsibility? Can I loosen the grip of the medical system and help her to ease out of this world with dignity and comfort? I think I’m ready. I sure as hell hope I’m ready.
Reading the words Mom acknowledged with her own initials and signature gave me confidence to go forward. She was transferred to rehabilitation today. Quite frankly I don’t think she is “rehab-able” but she could rally and surprise me. I need to give her that opportunity, but if she can’t rally, all will be OK because I will see to it that she lives out the remainder of her life on her own terms in comfort and with dignity. Maybe a caregiver cannot ever be absolutely sure about care decisions, but I am lucky. My mother and I talked openly about what she wanted and did not want. And, we have the legal papers in order. I can still ask my mom what she wants, even though she may not understand all of the nuances. As my friend reassured me, I know my mother better than anyone. I have spent time with her and we have had the tough discussions.
I am sad tonight, but hopeful that we can handle whatever comes our way. I pray that I handle situations the way my mother wants.
Call to Action
- Get your older parent’s legal documents in order. Encourage your friends and relatives to do the same for their older loved ones. The critical documents are will, living will, healthcare surrogacy, durable power of attorney, and when the time comes, a DNR order. Know where they are and keep a copy with you. Healthcare providers need to know the wishes of your loved ones. It is your job to communicate these to all care providers – paramedics, nurses, doctors, social workers, case managers. Don’t wait until your loved one is too impaired to know what he/she is doing by signing the documents. If they cannot sign the papers, you will have to go to court to be named a guardian. I have been told this is a process you want to avoid at all costs because it is long and requires involves attorneys, judges, and others. While you’re are at it, get your own papers in order!
- Talk to your parents, siblings, children, or whoever is close to you about your wishes if the day comes when you cannot make your own decisions. Figure out what your values are and what kind of death you would like to have. Most of us want to go out quietly into the night but most of us will face chronic illness and debilitation. These discussions are not easy, but we have to have them in order to live and die in comfort and with dignity.
So, when does the end of life begin? I don’t have a good answer for this question, other than to say that it happens way before we think it does.
Peace be with all family caregivers. –Gail
Be sure the yellow state form is with her where ever she is .
Yes, the DNR is so important. I learned to keep copies of the DNR, POA, healthcare surrogacy and living will with me. Everyone wants copies!