Always a Caregiver
I have always been a caregiver. And so have you! I don’t think I have always perceived myself as a caregiver. When I married my husband, I could not see the future. I knew I would be a caregiver – but at that time, I perceived myself as part of a mutual caregiving system. That is to say, I assumed that he and I would care for each other, equally. And it felt that way for a long while, the first 13 years of our marriage, actually.
A fulfilling retirement plan
When my husband Larry retired in 1996, I looked forward to years of fulfilling retirement living. I would keep working, he would enjoy the fruits of his labors (there was a significant age difference between us). That changed abruptly a few weeks after the retirement party when I was diagnosed with breast cancer. Larry became the caregiver, and I learned to accept support beyond what I wanted to experience. But I humbled myself and my spouse loved me right on through my treatment.
Open-heart surgery and complications
Then, another abrupt change. My husband experienced open-heart surgery and complications (these were the root of his CHF). Once again I learned. I learned to maintain a PICC line, learned to manage medications and IVs, learned to keep at my own job while managing the care of a man recovering from two extremely demanding surgical procedures. I juggled communications with family and friends, and I began to identify priorities and coping strategies.
Time keeps shoving me forward
Fast forward to today, February 6, 2020. I wish I could go back to the days when being a caregiver meant that I cooked meals and kept house for my husband. I want to go back to the days when I placed lovely flowers on our dining room table and not at a lovingly designed grave marker. But time keeps shoving me forward, unwillingly, into this strange future I must now live.
Now we can know
Which brings me to this day and this post. I am blessed to be able to share some of this journey now with you on this exciting new site. I don’t have all the answers, but I think you and I probably ask or have asked many of the same questions. How fortunate we are to have this new place to share our joys, sorrows, questions, answers, pain, and joy. Probably one of my most utilized phrases is “I wish I had known…” Well, thanks to this new site, now we can know.
I will be one of the bloggers periodically sharing with you all on this caregiving journey. I currently am a caregiver to my husband’s legacy, as he died on March 31 of last year. I am still a caregiver to myself as I stumble through this new undiscovered land of widowhood. Here though, the caregiving piece will be my focus.
Pillars of caregiving
If you have stayed with me to this point, allow me to share some pillars of caregiving that have served me well. I will probably be exploring these in the future through different articles. And I will add more. The keys to my mental and emotional survival have been:
- Information. I have felt I could not learn enough about CHF in order to be a competent caregiver.
- Friends and family. They have provided a safe place to vent, to seek support and to muddle through. Some have taught me how to discern who I can and cannot trust. I had to learn where to invest my psychic strength.
- Spiritual practice. This is never going to be prescriptive, but coping as a caregiver for a CHF patient made me identify spiritual practices and beliefs that stood me in good stead through my husband’s illness and death.
- Gumption. As caregivers, we need to identify the gutsiness that we need to speak up and get appropriate attention from the powers that be – medical teams and institutions, insurance companies, employers, other family members, etc. One of my husband’s favorite words was “obstreperous.” Stubborn, persistent determination is needed on this journey. I suspect I will be writing about that, too!
We are always caregivers
It is good to be here among people who know something of the experiences I have known, and who can teach me more about this sometimes-strange world of CHF. I hope I will say something that will be helpful to some of you as we go along. Let’s lighten each other’s journeys here. After all, we are always caregivers.
Have you shared YOUR heart failure story with us yet?