My mom died in 2002 and my dad died eight years later. During Mom’s final illness, Dad was her caregiver. When he was in decline, I was the one lending support. My relationship with my mom was a bit conflicted, while I loved my dad with all my heart. In spite of this, I found caregiving to be HELL. Had I been doing it for Mom I would have thought our relationship was to blame. Doing it for Dad made things crystal clear: It’s caregiving that’s at fault. Caregiving is HELL.
Full disclosure here: as I address this topic, I am being completely ego-centric. I am telling you how hard it was for me. I am leaving out a huge part of the story – Dad’s pain and suffering.
Be that as it may, as I sought help for my fatigue and depression during that difficult time, my internist said friends who had not been caregivers would not be able to understand what I was going through. He was right. I have never felt more alone. My friends did not understand that:
Caregiving is unrelenting, specifically, the doctor appointments just keep on coming. Each appointment spawned a repeat appointment, not to mention an appointment for some test that needed to happen.
Caregiving is baffling: There is an entire vocabulary to learn. Care.com gives a “Senior Care Dictionary” with an alphabetical list of 128 terms including these from the letter “A” alone: Activities of Daily Living (ADL), Acute Care, Adult Day Care, Adult Protective Services, Aging Life Care Manager, Assignment of Benefits, and Assisted Living Facility (ALF). In case you are wondering if there will be a test, the answer is yes…and you will probably need to fully understand the given term at a very low moment in your journey.
Caregiving is exhausting: I moved Dad from an independent living residence in St. Louis to a similar facility near me in Cincinnati in December 2009. Within ten months he experienced a downward progression that took him to assisted living, then skilled nursing care, then hospice care, and then back to St. Louis for burial. Five moves in ten months? Exhausting. And let’s not forget that five-week period when Dad was in the emergency room six times.
But most of all…
Caregiving is emotionally overwhelming. It’s wrenching. It’s heartbreaking. We’re talking about my dad here! The main man in my life for fifty-eight years! The guy I loved dearly! Yes, this guy was dying. This man who always listened to my problems and had helpful ideas. This man who enjoyed hearing about my life in detail. This man could no longer sustain a conversation. This man could only speak to convey what was hurting. This man was dying. And he was doing it on my watch. There was guilt. There was anger. There was sadness. There was grief.
So, ok, that’s the horrible hand you are dealt as a caregiver. Here are some tips on playing it:
Gather all the information you can about community and national resources.
My daughter was in charge of Dad’s dental appointments. My ex-husband (yes, he was part of my team) took Dad to all pain doctor appointments. I was no martyr, I said yes to all offers of help.
Additionally, if there was a small task like picking up Dad’s prescriptions, I was sure to give it to the next person who asked what they could do to help. In fact, you might want to keep an ongoing list of that sort of task so you can take advantage of all assistance offers.
Caregiver support groups exist. Find one! You will be amazed that your horror stories are less awful than someone else’s!
A journal is another wonderful place to vent. I have always felt that when I talk about my pain, I give a piece of it away and a journal is a great place to talk things out.
And please don’t forget that professional counseling is always a viable option when you are floundering emotionally.
Warning: While all of this help is useful, it will still be inadequate because – as I have said before – caregiving is HELL. However, I would do it again in a minute. In Dad’s healthier months, we had the opportunity to tell each other how much we loved each other. Since Dad was of a generation that does not speak of such things, this was a priceless gift. But let’s face it, not everyone will figure out a way to speak of their love. The blessing of caregiving, therefore, is that it gives us a very tangible way to show it.
My dad was there for me throughout my lifetime in countless ways and I was there for him as well. It’s that simple and that beautiful. I am grateful for every minute we shared in life, even the hellish ones.
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