Conversations on letting go. Yes, it’s time for those difficult conversations. But first, I’ve been away and I apologize for that. My mother has been diagnosed with a form of dementia and that is a huge transition for her and for me. If you are only interested in dreams and dreaming, then you will find tons of posts on that topic that will find helpful and interesting, but if I’m going to be honest in my blogging, I have to admit my head is in a different space right now….though this post does touch on my dreams. I hope you will hang in there with me to the end…….
If you read my September 20, 2015 post on death entitled “In Which Patti Learns Her Dream Job, you will know that I am dipping my toes in the waters of grief and bereavement professionally. Not a moment too soon. My mother isn’t actively dying yet (let’s face it, we are all one step closer to death every day), but I feel like I’m watching her die in slow motion. She doesn’t have Alzheimer’s, a form of dementia that many are unfortunately familiar with, but she likely has vascular dementia, or “vascular cognitive impairment [VCI]”. I say likely because the psychiatrist that diagnosed her didn’t bother to go into those details and is more interested in the cocktail of drugs that will hold down her paranoid delusions and keep her behaviour stable. She still reads, remembers details and knows who we are but her lucidity is interrupted by agitation, delusions and difficulty finding the right words or confusion that the doctors say will increase over time. The mother I know is disappearing. And this is sad beyond words.
Not that my mother is perfect but she’s the only mother I have in this life and I do love her, difficult personality and all. So I find I’m grieving the loss of who she was as well as the loss of the perfect mother I wanted. Have you been there? If you are reading this (I still wonder who reads these blog posts or if they are wandering in cyberspace, only to be read by some aliens, 2000 light years in my future.) feel free to share your experiences with losing a parent to dementia in the comments below.
As all this was unfolding over the summer- though for a few years, really- I dreamt that,
I am teaching or leading a group and many of the Dream Association members are there. My mother calls on the phone and without pausing to say “hello” she launches into a long story about her latest problem. I finally succeed in interrupting her and tell her that, “I can’t talk now. I have a group.” She doesn’t stop talking and I ask, “What happened to my real mother?” I mention that in the past, my mother would have said, “Ok, call me when you’re done and then hang up.” EOD [End of Dream]
And another dream fragment,
I dream that mom is able to walk [which she cannot do in waking life] but is a very small version of herself, maybe 4′ tall. [EOD]
There have been other dreams which I believe are helping me process the changes. Even when my mother doesn’t appear in my dreams, the issues do. In my dreams I am making decisions, choosing between this or that. I have my typical anxiety dreams, where I’m not ready for whatever the dream action presents. In another dream, I am attacked by a doctor’s son. I fight tooth and nail but no one comes to my aid. I think that about says it all.
In our death-phobic society, no one really wants to talk about death, but even more shocking is that no one wants to talk about grief and letting go. What I’m experiencing is “anticipatory grief” and very few people want to talk about that except for professionals in that field! “At least your mom is still with you.” “At least she still knows who you are.” There are often a lot of unhelpful platitudes offered family members going through this. Short of support groups, who are doing great work by the way, I would love to start an on-going conversation in the general population about grief, loss and letting go. After all, we ALL will experience loss. And loss can be about things other than death. The loss of a job, loss of a relationship or friendship, the loss of health, and even the loss of hopes and dreams are all losses! Admittedly there are a few organizations who are helping people talk about loss, but let’s move the conversations on letting go and loss out into those crazy “interwebs”…where you found this post!
Patti – I found your words very moving – and I resonated with much of what you said about loss and grieving for someone who is still alive. At 79, my Mother was active, healthy, independent, and planning her next trip (to South America), had flu for a few days and then a major stroke. She was transformed and my life turned upside down. It was traumatic and distressing and bewildering because it threw me into the area of medicine where there were very few clear answers, a lot of “wait and see”, incredibly poor communication, and then over a year, several more strokes. At the first stroke I lost so much of the Mother I knew – an avid reader and librarian, who could no longer read, a discerning cook who had no appetite, she could not walk, and was incontinent and dependent on nursing care. Never depressed or down for long, she had a deep depression and expressed a desire to die. My Mum could talk to almost anyone easily, but her brain could no longer ask questions, start conversations or chat with others, only respond to direct questions. “Old school” about medication, preferring simple measures like salt water or lemon and honey for colds, she rarely used over the counter medicines, only occasionally taking prescribed medicines. With the strokes she started on the whole cocktail of drugs, interactions, side effects etc. Subsequent strokes took away her ability to eat physically, and set back her rehabilitation further – and ended all hope of a return home so she had to go to a high level of nursing home care. But she could talk, her sense of humour recovered quickly once through the deep depression, and she still valued good manners and enjoyed and appreciated other people and anything that was done for her. She continued to be tolerant. When male resident came into her bedroom in the night and peed in her waste paper basket – she was not phased or upset at all. She could still do the crossword better than I could (with me as her reader and scribe) and enjoyed Scrabble with other residents. She participated enthusiastically in activities in the home and enjoyed the occasional visits to the ballet I arranged (though no emotion displayed on her face or expressions of enthusiasm). She still liked listening to opera and classical music. And loved spending time in the garden – one of her great joys had been her own garden. Slowly but surely over the years the loss of cognitive ability diminished the Mother I knew and the grieving was slow, with no closure, no release, and her final year spent in a coma took us into a new area of loss and grieving. When her heart finally gave up, long after the rest of her had, we entered a time when the other people acknowledged we were grieving and yes, we were – death is a final and different grief but it was not the beginning just different stage. But society does recognise when someone dies you will feel loss and grieve – up until that point, people didn’t see the years of grieving we had experienced since her first stroke. As always in difficult times, I was surprised how people responded – some of her dear friends and family faded away because they did not want the distress of seeing her less than the strong, fun, lively, witty, resilient lady she was and the friend, sister, aunt who was “there for them” but there were others who was loyal, generous and committed to the end. I experienced similar – some friends did not respond well to me suddenly having to spend a lot of time at the hospital, caring for Mum’s affairs, fighting with social services, the medical establishment etc, too exhausted to fulfil duties and social obligations that I did previously – but a few were understanding, generous, perceptive, loving and kind. Very few people could really understand how it felt, and in my experience it was those who had gone through something similar – my friend who’s father had Parkinson’s, another friend whose Mother had dementia, the quality of their support was very different and precious. Thank you for your honesty and for enabling me to remember and reflect on my experience of watching my Mother die very slowly and how it affected me.
Thank you Vanessa for your heart-felt story of your journey in grief. Yes, those who understand and offer kindness are the precious gifts in all this. Blessings, Patti
My mom and I read it together. My mom’s expression was “ugh”. My mom, who is generally a literary genius, had little words. “Chin up, nose up” was all she can muster. It’s very difficult to accept the changes in ones we love because we always seem to retain the vibrant memories.
I, on the other hand, have been in nursing too long and always try to find a jewel in the situation. I find a purpose with what is happening. Maybe your purpose now is to join us baby boomers for a different path. Our dreams will become even more important and will serve as outlets. And our hearts will hold our memories closer.
Hey Ellen, you are right! My life and my heart will be changed by this experience and the direction of my professional life will reflect this. Love to your parents and a hug to you! XOX