It is with great sadness I share that my mother has passed. She was 82 and we enjoyed her company during the holidays, but on January 13 we were told she had Stage 4 cancer and little time left with us.
On February 9th, less than a month later, she died. I was listening to her breaths, thinking how beautiful they were. They were smooth and consistent, deep but not too difficult. Then they stopped. I waited, as hospice prepared me for them to become irregular, stopping for up to a minute at a time and then restarting again. But they didn’t.
There is so much more I could share about those last few weeks with mom, but it could not convey the experience itself. I suspect unless one has been a caregiver to someone in their last days, dealing with everything that must be done with the greatest intensity of love, stress, sorrow, exhaustion, worry, caring and every other feeling and emotion one might consider, it simply cannot be expressed in words, however articulate.
I will miss her so. She was my champion, my hero, the one who always came when I had turned my world upside-down and inside-out. Her dedication to motherly love ensured my survival until I could turn my life around, find ways to love myself and see I had a contribution to make to this world, this life. She made me a better human being.
As I sobbed by her bedside those first few moments after she was gone I reassured her, not knowing if spirit hangs near for a bit after it departs. She was always concerned about me, and whether I could make it. At one time, it was due to how poorly oriented I was toward life; more recently concern about my health and disability.
I shared through tears that although it did not look good now, I would sort out the pain of loss I was feeling and dedicate my life to demonstrating how motherly love helped mold a person capable of loving, happiness, service, caring, gratitude and all the other ingredients of life that lend themselves to providing more goodness to the world than we take from it.
And now she is gone. For several days I think I heard her around the house still. But now, it is quiet. Her journey here is complete. I sometimes wonder if she knows how many lives she touched. So many of my friends loved her, adopted her to be their own mother. I learned to share her with them. Her love was so great, there was plenty. It was never a loss to me.
Mom had dementia. Not Alzheimer’s, the one so many are familiar with. Mom, until near the end, always recognized me. Even at the end, it was the result of a tumor pressing upon a front lobe that caused her to not be sure of who I was — and it was rare. Mostly mom was present in the moment.
Her dementia stole her short-term memory, her ability to learn new things and her ability to organize. All three of these were so key to her life, and adjusting to their loss was so challenging against the backdrop of a life filled, at times, with people who would belittle her to control her. A chapter I often wished I could remove from her memory banks it was so cruel and unfair to her true eminence.
I’d like to say people were kinder to mom later in her life. But sadly, people are just not always kind. I remember one day mom sharing an experience at the bank. A teller was short with her because she could not remember how to write a check for cash. It made me so upset I closed our accounts there and we opened new ones at a smaller, hopefully friendlier bank (and it was, thank goodness, friendlier and more understanding).
Now, for me, a journey begins. A new life which does not include caring for mom, but rather ensuring my future with my health conditions is as good as it can be in a world where I will eventually be more a burden than a contributor.
Acting as my mother’s advocate in her last days has made me acutely aware such plans are difficult to put in place to say the least. Even in my presence, those who dealt with my mother did not always do so with care, tenderness or love. Some I screamed at and forbade to touch her again or even enter her room.
In the intervals where there were no physical demands upon me, I sat at the computer reviewing resumes and agency sites looking for someone who could be the caregiver my mom deserved. It is not that these people do not exist — they do. They are just in high demand and for them work is not difficult to find. To some degree, it is a timing issue of having a need for such a person at the same time the person becomes available and somehow managing to find them at that specific time.
In mom’s last couple of weeks, hospice filled in the gaps with the tenderness and concerning care mom deserved. I was fortunate to find a hospice which was not like all the rest which use Medicare’s standard requirements as the baseline for what they will provide. The one I chose offered more. It was an independent, family owned company created by a son who could not find the hospice services he felt his father needed and deserved.
They came every time I called. They provided me a pad by her bedside, so when I was no longer able to sit with mom, I could lay on the ground by her side and speak to her. Once they sat with mom all night, to comfort her when I was no longer able to sit with her and my words of comfort were not enough. At the end mom loved to have her hand held or her arm stroked gently while conversing with another person about her life and the things she surrounded herself with in her room. The nurse who sat with my mom that night asked me to rest. When I rose the next morning, mom was calm and resting peacefully.
I can not express enough gratitude to them.
There are many reasons for the contrast in care — many of which are sadly political or related to an economic imbalance of what we should value and ensure for the dignity and care of any person versus what our commercialized society has been taught to value. There is something very mixed up about it all. Hopefully one day we will rise above it and see to the things which truly matter as opposed to the monetary Gods we are taught to worship so dearly in this country.
So my journey begins. The tone of things may change as I share it with you. My situation, and my country’s current politics, require I leave my country of origin and venture out to somewhere else. Somewhere I will not fall through the cracks. Somewhere I can maintain some sense of sovereignty over my life. Somewhere I will not be asked to sacrifice all (spend down) until there is nothing left, no home I can afford and no say in the care or living arrangements which are determined for me. I am an American. I have no desire to change my status. I love my country, I just can’t stay here and be ‘free’.
It is a strange, complicated, confusing situation which will require a significant amount of research and care. It is not easy for me to travel. It will not be comfortable to leave for more secure ground. Honestly, I am not even sure I can do it. I will have to study those who have gone before me and see what has worked for them.
I must decrease my ‘footprint’ significantly, though this ought not be much of a burden. My needs are fairly simple, and I am happier when there is less ‘stuff’ in my life rather than more. Less requires less cleaning, less energy, less of those things I cherish more these days than when my body could plow through whatever faced it.
Hopefully I can find a place where I can continue to make a contribution to the community. Purpose is so important for humans, and for me it goes beyond ‘any’ purpose. I want to contribute to my local community in addition to any global contribution I might manage to make. The local contribution is often what makes wherever I am feel like home, as if I am a part of, instead of apart from. I will consider cooperative environments, which often demand a new member bring something of value to the table. I will have to find out if anything I have to offer is seen to be of value. It’s a scary thought to think what I have to give might not be seen as significant — but there is no way to be sure of that now. So I must set such fears aside until evidence suggests what is true or not.
The first step in this journey is considering where I might even be able to go. Many countries have had to increase restrictions on Americans wishing to be expatriates in their land. My health care needs vary now too. For the most part, traditional medicine has acknowledged there is not much they can do for me now. So I will need to understand what is available in the countries which would allow me to come, what I can offer them or how I can provide proper compensation for their care.
And, as with all change, there is trepidation. What if I go somewhere and it is just not as I expected? Do I have the ability to make such a move again? How do I say goodbye to those I love here, who I may never see again?
I suspect some might see this as all overly-dramatic non-sense to disparage the American health care system we have today. But, I suspect, in all likelihood, they don’t read this blog (smiles). I am more inclined to think those who do read this understand the choice I am making – the journey on which I am embarking.
Recently I shared with someone that I sometimes feel like my country folks are okay that I am leaving. I am less of a burden, less of an expense. That in their silence they are essentially saying, “Yes, this will be better for all of us — thank you for not making it anymore uncomfortable for we who get to stay behind.” This person felt I was misguided. She is probably right — it is more likely simply ignorance of what many disabled or health-stricken people go through in America today. And we are not alone in these concerns in America either.
I will blog soon on the UN investigation of the UK’s treatment of the disabled. There, the Prime Minister is downplaying the investigation, stating the UK does far better than many other countries. I am pretty sure this is not a spiritual or humane stance. It lacks compassion for those who are suffering and implies it is okay for some to suffer as long as we don’t make as many suffer as other countries do. Is this really the standard we wish to set for any component of how we treat other human beings? Does it not risk that one day we may be subject to less than humane treatment via reasoning that we, on our own, are not significant enough to warrant concern?
It all seems misguided and a suggestion some of our leaders are focused on something other than what would most benefit the human condition. It is what reminds me that folks don’t think these things to be cruel, it can just be difficult to look at the harsh reality of what is happening under our watch — some of which we may feel we have little control over. Some of the stories I hear cause me such great pain, yet I know they reflect our limited selves which embrace fear over faith.
These are the people we must love and share our compassion with. This is me, too. I am not perfect either, and succumb to fear and blame. So I ask that I be empowered to take this journey, and to share this journey, without too much judgment and ridicule. That I might offer suggestions of hope rather than commentaries of despair. That I may find the place I am to be without resentment toward the place I must leave — knowing someday, in our continual slow journey of progress, this too shall pass. May I continue to work toward an equitable and sustainable life for all and see value in each person. May I remember no one is a mistake, or less than, or of no value.
I might not achieve it, but I can ask.