Posts Tagged ‘caregiving’
The First Fathers’ Day Without Dad
By Richard D. Quodomine
When you lose a person in the generation before you, you begin to think about what they meant to you. When you lose a parent, you think about all they meant, and you hoped you either lived up to the best of yourself, or in some cases where the parenting was not as instructive or kind, you hope you’ve raised yourself beyond difficult circumstances. If you’re fortunate, Dad pushes every endeavor and delights in your successes and constructively scolds you when you fail without ever making you feel embarrassed or willfully stupid – unless of course, you were actually willfully stupid.
Did we have our differences? Absolutely. My father was more conservative than I am politically, though he rejected hateful politics and would not vote for it. We come from a mixed religious family, and my father was Christian, I am Jewish. We had philosophical differences and we approached life differently. But we also valued accomplishment, kindness for its own sake, and service in the public good. He is part of the reason I have chosen a career in civil service. I believe government can and should serve at the behest of its citizenry, and while he mistrusted government intrinsically, he had respect for my approach in working for it.
As part of my research in the public interest, I went to India for a conference. While en route, somewhere between Zurich and Delhi, my Dad suddenly passed from a cardiac arrest. I couldn’t return home for several days, so I soldiered on without telling anyone at the conference. I figured the way to honor his memory was to do my very best. He was gone – and weeping in my hotel room wasn’t what he would have wanted.
Dad had a heart condition, but he had had corrective surgery and was otherwise in outstanding physical shape for his age. He was my Mom’s primary caregiver. This was especially tragic because she has dementia. Sometimes, I get angry that Dad is gone because the burden is much greater on myself and my family. Sometimes, I am so grateful that he gave me the strength to help care for Mom. Most of the time, even months removed, I’m just missing talking to my Dad.
The first father’s day without Dad is the hardest, or so “they say.” I think that is true, but it’s harder not because I am sad, but because there’s nothing that can replace all that he was. It’s trite to say “he lives in me.” I think it’s better to say “I take what he has given me, and I will grow and make this life my own.” I don’t think anyone should strive to be “just like” their parent. They should strive to be their own authentic selves, using the best of their parent as the cornerstone, not the ceiling. In Judaism, we say “May their memory be for a blessing” as a condolence. Dad’s memory is, for certain, a blessing.
Learning from Grief
By Noelle Bailey
Grief is weird. Odd start, I know, but that was the sentence I used a lot whenever someone asked me how I was. It was never a constant feeling; it changed day to day. And still does. It’s the full gambit of emotions from sadness to anger to guilt and, though dark, even humour found its way in.
In December of 2019, I lost my father. His health had been declining for several months, and we had started the process to diagnose and begin treatment for what we knew was probably cancer. At his first appointment with his oncologist, he was immediately admitted to the ER. By the next day he was on a ventilator, and within twelve days they came to tell me that the cancer had spread everywhere. We had lost a fight we hadn’t even really begun. In March of 2022, my mother passed away after a 14 year fight with MS. It was a much different process to lose her by degrees over those 14 years, witnessing her own body turn against her while powerless to do anything to stop it.
Those are my two experiences with the strangeness of grief. They were vastly different experiences, but also similar in that they cut me in two and changed my life.
The two biggest things I’ve taken from my grieving process are these:
1. I will, for the rest of my life, miss the conversations we will never have. There are books I’ve read since they left that I would love to talk to my mom about. My dad never got to hear about my new job, and he would have loved it. Pictures people have brought me that I can never ask them about, stories I missed out on hearing. The moments of my life, big and small, that they won’t be here for is the part that takes me under every time.
2. I can grieve however I need to. It doesn’t need to look a certain way or be anything other than what I need. I struggled a lot after losing my mom with the idea that I wasn’t sad enough or broken enough because after watching her long hard battle there was a certain peace lacing itself through the pain. When we laid my parents to rest in the cemetery next to my grandparents, we played “The Rainbow Connection” sung by Kermit the Frog because that’s what my mom had always said she wanted to play to say goodbye. Then my husband, Cale, and I did a shot of Jack, like my dad and Cale did when they went out for my dad’s 60th.
I’ve never been very good at setting boundaries in my life, but I tried very hard to make sure I set them surrounding my grief. To let myself do whatever I needed to process the loss of my parents and not to let anyone tell me I should be acting or feeling a certain way. I laughed at things they would have laughed at, and when I needed to, I cried. I am slowly learning how to live in a world without my parents, and know that I will be for the rest of my life.
Grief and Parenting in the Disability Community
By Carrie Batt, Grief Educator
Parenting is complicated as it has so many twists and turns. There are a variety of parenting styles such as hovering, free and easy, and everything in between. The one thing parents have in common is the fact that parenting never ends, thought it changes. Many parents can look forward to their child changing as they age and gain independence. Parents often look forward to and are proud of their child leaving the nest. Yet for many parents with children who have developmental disabilities, that is not the case. These parents must offer unwavering support, care, and guidance to their child or children who live with disabilities.
These are parents who are relied on in various ways, being the primary caregiver and managing everything. Some parents aging into their 70s, 80s, and 90s remain the sole primary caregiver to their child. Their day-to-day parenting tasks have never ended as their child has grown into adulthood. In fact, for some, their parenting roles increase as their child ages and may begin to lose daily living skills, develop early-stage dementia, show signs of aging or illness, begin to regress in specific areas or require much more support. Some parents must also cope with the fact that their child may be experiencing mental health issues in combination with a developmental disability. This is a most unique parenting experience as it is all-consuming. Such parenting speaks to a level of commitment and unconditional love where unwavering support is a constant.
In conjunction with these realities, there are times when such parents become a part of the end-of-life and palliative care communities. Once their child with a disability is diagnosed with a life-limiting illness, the only choice is to navigate end-of-life care, and there is no road map for what these parents will be embarking on. When it comes to death, dying and disability there is no education or expertise readily available. The same is true for grief, loss, and disability. Currently there are few disability-sensitive supports for such families who are having to transition from being the primary care giver to preparing for the impending death of their child.
The grief surrounding these realities have yet to be spoken of or integrated into the bereavement services and are rarely acknowledged within the developmental sector. The same is true of the reality faced when a child with a disability must face to mortality of their parents and primary caregivers, as for many of these children they may never have left the family home.
This is a type of grief most cannot imagine. This type of grief has not yet been recognized, validated, and honoured. There has been no space made within our grief support services that speaks of the magnitude of the grief surrounding these families. My hope is that the light can shine to meet these needs in the developmental sector for the families we serve.