Dear Jimmie:

Your ability to write graphically about the corrosive feelings we all experience when in the caregiver role is truly a rare gift to all those who struggle and fail to give voice to such thorny and disabling but honest emotions. I have yet to meet many people in a caregiver role who will speak bluntly about the less altruistic side of caring for others whose genuine needs place a constant and demanding pressure on the caregiver and who by the very nature of their need must take precedence much of the time over the needs of the healthier caregiver.

Martyrdom is rife among caregivers and yet anyone who cares for another does so by choice. It may not always be an easy choice or a painless one, but considering whatever the alternative may be, we as caregivers weigh it all out and convince ourselves that this is the best and sometimes the only choice that we can live with.

For me I chose to care for my Mom in the best way possible for as long as possible without outside help. I look back now and wonder, what was I trying to prove and to whom? Why did I not - could I not - put my own life on at least the same level of importance as my Mom's? Why could I not ask for or accept more help so that my burden was eased? And yes caring for my Mom was sometimes very much a burden on me physically, mentally, emotionally, psychologically and psychically. Yet, no matter how difficult it all was I chose this role and fulfilled it and the truth is that I did so for both my Mom and for me. I needed to be needed by my Mom and I liked to feel I was helping her and for the most part it was indeed a privilege but sometimes I felt it was a trap that would never end. Reminder to self: I am human.

One thing that helped me to cope with my own conflicting feelings when my Mom was in such a needy position was to remember how she shared frankly and openly with me her experience as a caregiver in both family and volunteer situations. She used to get so fed up with some of the elderly people she cared for and would tell me that they had lost sight of others and had grown into very selfish and self-centred people. I don't know if any of those she used to tell me about had Alzheimer's or dementia like she had much later in her own life, but I do remember how sometimes her patience would simply dry up and she would complain to me about how unappreciated and used she sometimes felt. Nonetheless, she kept going back for more and I suspect that it was because she got a lot more from those she was helping in their better moments than they had taken from her when in their less than desirable moods!:)

I mention my mother's experiences for context to how now in memory her very human limitations and her resolve to remain involved despite herself and others frees me to accept and forgive myself when I recall times when I felt about my Mom just as she did about hers and the others she cared for over the years. Sometimes I was simply fed up with the thankless and heavy duty that I alone had placed upon myself and my own slouching shoulders.

Laughter was always our way to release tension and somehow after unloading her disappointments and resentments about others with me we would always end up finding so much humour in the these situations that mere moments before had caused her to spill without reserve the contents of her overburdened heart. The more we spoke about all the blood, sweat and tears that she shed to spare others from experiencing even a drop of their own, I could see her begin to transform before my very eyes and before long she was complaining about herself for being a complainer which would make us laugh even harder. I guess it's a story that really requires one to have had to have been there!:-)

I can still recall how my Mom would, once refreshed by a lighter perspective, feel real remorse for having complained about the people she perceived as much more vulnerable than her. Her regrets were genuine no doubt, and I think I have learned from my mother that regrets and recriminations cannot be completely avoided when dealing with people and difficult experiences. It's okay to feel disappointed and let down by others and to express our frustrations and indignation with them without being paralyzed by guilt, but in my experience it is when we are the source of someone else’s pain or disappointment that we are not so eager to forgive and forget ourselves. My Mom was so very human and by example she showed me it's okay for me to be human too, even with her, even when I feel she failed me and I her, I know it's all okay in the end.

I guess what I'm trying to say is that no matter how poisonous some of our feelings may be, no matter how shameful and disappointing our behaviour is in reaction to overwhelm and fear and sadness, if we have just one special confidante or group like the Virtual Hospice with whom to share our pain, if we have one place to safely expose the ugliness that dwells in the darkest depths within us, if we have a friend who can help us find our way back to laughter and connection and perspective, we will all survive the experience of the caregiving choices we make.

There is no easy way to accept that our loved ones have changed due to illness and can no longer love us the way they once did. It is shocking and heartbreaking and a trial daily to remember the person behind the disease and the reason we choose to loyally give them the care they deserve. It is perhaps even more daunting a task to remember that we too deserve to be loved and cared for and that when we can no longer receive the love, affection and appreciation from those of whom we most need it, it's okay to replenish our spirits with the help, support and kindness of others.

I know my Mom understands that I did my best even though she could not tell me in so many words in the months before she died, but during the vast majority of her life she gave me enough love and affection and appreciation to sustain me and fill my memories for the rest of my lifetime. Mainly I try to focus my attention on the better memories as the painful ones only serve to cause me to suffer. I know my Mom is at peace and she would want for me the same state of mind and spirit. I do feel regret and guilt and shame about things I thought and felt and did and said to my Mom and the many things I failed to say and do as ideally as my heart wished, but I think it's perfectly okay and natural to have these feelings linger - especially after someone dies and we realize how very precious is each moment we have with those we love. Death – or threat of death – sets the stage for idealization of a loved one – naturally – and yet we must never forget that while we are not simply all saints or all sinners, neither are/were our loved ones.

Dealing with our own vulnerabilities and sensitivities is a challenge, but when we feel totally responsible for the well-being of another it can prove to be an unbearable heartache if we expect perfection in ourselves --- and when we permit ourselves to be flawed our spirits actually expand – we can breathe again – we can feel and make room for our softer side to re-emerge and it is in that reclamation that we discover our best selves and we can see clearly once again the silent “Thank you” in a loved one’s smile, we feel the warmth of love in a tender touch of a hand and we are able to laugh over the silliness of life once more. Caregiving brings with it so many emotions, but like all things they are cyclical and ever-changing. Our only real trap is to buy into the myth that somehow we are alone, that we are invincible and that we are too proud to accept the help of others. Every time we admit to ourselves and others that we are sometimes weak and despairing and exhausted, we open a door to acknowledging and realizing our resilience, our goodness and our strength.

Life is far too short and far too precious to waste one minute of it beating ourselves up for feeling or expressing our human frailties. Let's accept them, live with them and resolve to simply do our best.

With affection - hugs- xo
Cath1