As I watched Dorian surge towards the eastern shore, having wrecked havoc on the Bahamas, it occurred to me there is a similarity to being a caregiver. I do not want to in any way to diminish what residents endured, but instead, want to draw some parallels.
Like a hurricane, a diagnosis seems to come out of nowhere. There is little time to prepare as caregivers scramble to make sense of the news, adjust, and survive what is coming. Then comes the wrath of the diagnosis, inflicting fear and chaos while one waits to see their new reality. Shortly after that, but what in actuality seems like forever, the picking up the pieces phase is entered as caregivers are called upon to adjust to their new reality and begin to rebuild their life.
Time passes, a life is slowly rebuilt; different from the former, but nonetheless rebuilt due to the tenacity of the human spirit to face the worst and move on.
Caregivers remains forever changed by the magnitude of their experience, but in the process have become stronger, more compassionate and resilient. Like those who faced Dorian, caregivers are called upon to bring forth every ounce of courage.
Labor Day is tomorrow and I can feel fall coming as the sun sets earlier and the days begin to cool down. The hint of fall is in the air as we treasure the last days of summer. Before I was a caregiver, I delighted in Labor Day as children returned to school, a familiar routine followed, and hints of upcoming holidays promised joy. That all changed a year into caregiving. Not that I wasn’t grateful I could care for my husband and be there for him, but my life had drastically changed. It had become tedious, non-compromising, made up of long days and nights, and my identity, along with myself, seemed to have disappeared. One day followed like the next and Labor Day for me was just another day. No longer was it special or a harbinger of what was to come. I knew what was to come.
Labor Day is a tribute to the accomplishment of Americans works and what they have done for the economy. To that I would like to thank all the caregivers that have provided their unpaid labor taking care of their loved ones. For them Labor Day is everyday.
Pain is a very subjective thing. Physical pain can be anywhere in the body, at various levels for individuals whether it real or psychosomatic, short of enduring, But it is recognized, validated, and treated by the medical community.
Caregiving pain is another story and is often overlooked, ignored or bypassed by doctors busy focusing on the patient, not the caregiver. But ask any caregiver and they know about caregiving pain. It may be co-mingled with physical ailments, it may come and go, but one thing for sure, it is real. The pain of watching someone suffer, linger, go through chemo and/or various medical treatments, be placed on hospice or die, is real and gut wrenching.
So often caregivers suffer in silence because it is hard to describe this non-medical pain that wraps around the body like a bathrobe, but offers no comfort, and fills the mind with a sadness that penetrates the soul and spirit. Caregivers can articulate frustration, exhaustion, overwhelmingness but this elusive pain that takes over, is often too difficult to describe.
I’ve just gone through my summer closet and finally got rid of all the clothes I haven’t worn in years. Marie Kondo, Japan’s premier organizer and declutter, believes if it doesn’t spark joy, get rid of it. There are so many things that bog us down and make life more difficult – crowded closets, unpaid bills, messy house, misplaced items. And the list can go on forever, but when you are a caregiver it is that very list that adds to your stress. I suggest tackling one thing at a time over a period of weeks or days, until completed. It will free up your energy, not to mention space, and give you a sense of peace. As a caregiver, I tried to eliminate as much stress as possible by adopting the minimalist approach to life, and caregiving. I organized pills, threw out stuff the medicine chest that add little or no value, tackled bills by setting up a payment system and doing it one time versus hit and miss. I took the same approach to the house and rid it of unread newspapers and magazines and knickknacks. the freedom was exhilarating! Next I took the same approach to my attitude and outlook by becoming consciously aware of negative thoughts that were not only self-defeating but were weighing me down. It was a process that took time, but one that was well worth it.
Spark joy wherever you can in your caregiver life – it will make for a lighter load.
Once we had wonderful plans: globe trotting, cruising, hiking, lounging on exotic beaches. Adventures for as far as we could see, for as long as we could go. Now those plans have been replaced by pill counting, doctor appointments, diaper changing, and overseeing his day.
My life, our life has been forever changed by a catastrophic diagnosis- one we never could have imagined or planned for. Sometimes, I don’t even remember my life before; that’s on impactful the diagnosis has been.
A picture ( two beach chairs side by side) bought and hung long ago in the spirit of our future plans, still hangs on my wall, reminding me how fragile life is. Now I must adapt to a new picture, a new way of being. There will be a tomorrow, just not the one I planned on.
My friend recently had knee surgery and she has kept everyone hopping, as she oversees her care from the hospital bed placed squarely in her living room. At one point, I had a brief vision of the Queen overseeing her subjects with great delight. The poor daughter has put in 3 straight weeks of non-stop care: toileting, walker assistance, pillow plumbing, and answering the bell that never stops ringing. It’s almost like watching a comedy movie, but I’m caught up in the demands, too. The most recent being – “Can you take me to my mid-afternoon nail appointment?” How did I forget I don’t have a life?
There has been a price to pay for all this indulgence and imperial type attitude… a DVT. Whenever someone suggested some light activity or trying something on her own, it was met with histrionics worthy of an Oscar. This is my dear friend who is somewhat entitled, via attitude, BUT this transformation to Diva is unreal. So, Dear Readers, I throw out the following to you:
Why do we allow this to happen? What turns someone into a Diva How do we get out of this and still save the friendship?
I’ve just returned from a wonderful and interesting few days in Washington where a group comprised of myself, a geriatric physician, a psychiatrist,, a health insurance executive, and a few other people met to discuss caregivers and their needs. We worked on putting together a plan/protocol to make sure caregivers get the help they need, and are seen by the medical staff to oversee their own health. We all know the stats on caregiver burnout, and the fact that some caregivers will die before the one they are taking care of does. Not encouraging but the meeting was. It is wonderful to know that we will not always be the 2nd victim or the forgotten one. Caregiving is a difficult task and we caregivers need all the support we can get. I would like to see, someday, a time when the government will reimburse caregivers. After all, the time caregivers spend caregiving, saves the government millions of dollars. Let’s put a dollar value on this time and effort that has taken many of us away from our jobs and lives.
Company has gone home after a hectic two week vacation filled with non-stop activity, laughs, boogie boarding, shopping and eating out. Now the house had returned to its usual quiet and it seems so strange and lonely. I remember a time when I was a full-time caregiver and prayed and hoped for quiet, but right now it doesn’t seem so great. I miss the companionship of people and it reminds me of the lonely days of caregiving with an emotionally absentee husband – no fault of his own. While I was always on high alert for his possible wandering and getting into things, I basically lived alone, and it was lonely. Now I am use to it and actually cherish the time I have, but I am missing the company and remembering the loneliness of caregiving.
What makes caregiving a little easier? I got to thinking about that the other day and decided it was having APPITUDE. That’s a combination of attitude and aptitude. We all know the effect of attitude on everything we do in life, and in especially being a caregiver. Often with caregiving, it is difficult to maintain a positive attitude and that’s when we have to rely on our aptitude. But put the two together for APPITUDE and caregiving moves along with a little more ease. Caregiving is a delicate balance and we all have different strengths we rely on to balance caregiving. Just something to think about on this approaching busy 4th of July Holiday. Have a Happy Holiday and let a friend, neighbor or family member help you out, so you can enjoy the holiday.
Just recently I returned from a vacation trip to Japan; something that had been on my bucket list for years. In fact so long, that it was on an original list my late-husband and I had made decades ago. I did not travel with him, obviously but, instead, with my granddaughter. We had a wonderful time exploring Japan and trying out the very different cuisine, but I often thought during the trip of how much he would have enjoyed it. I got to thinking about the short respites I took as a caregiver and the difference between a vacation and a respite. Caregivers tend to think of a respite like a mini- vacation but it is not that. A respite, by definition is,” A short period of rest or relief from something difficult or unpleasant”, whereby a vacation is “An extended period of leisure and recreation, especially one spent away from home or in traveling.”
Thinking of a respite like a vacation sets a caregiver up for disappointment. A respite is simply a time alone for caregivers to re-charge their batteries before the next crisis. It usually doesn’t include a Caribbean Island, a drink with an umbrella, or a faraway destination. A respite is basic downtime and time alone for the main purpose of getting a break from the demands of being a caregiver and reconnecting with one’s self. Respites are very important and do not have to be lengthy or expensive BUT should be a part of all caregivers self-care.
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