I was raised to be self-reliant and independent, confident and secure in knowing what to do. I am a pretty good handyman, and even built (most of) the house in which I live. I cared for two elderly relatives through the respective winters of their lives, one of them quite intensely as she developed, declined, and passed away due to Alzheimer’s Disease.
Over the years, I have accumulated a group of “senior pals” who I look after by doing minor home repairs and taking a few of them grocery shopping each week. This minor form of caregiving is something I enjoy and lifts my spirits.
But in all of my experience in caring for others, nothing really prepared me for what I am dealing with now.
My spouse became infected with two related organisms transmitted by a tick bite and in late 2011, he began demonstrating symptoms of illnesses caused by those infections. The infections’ symptoms affected his capacity to function on a day-to-day basis. The diseases cause pain, which in turn affects mobility. They also cause significant impact on behavior and mental function.
There were/are days when he is relatively okay and can care for himself. There are days when it is not so good. There are differences almost every hour of every day … for two years now.
I reflect on how we both thought our futures would be, and what they are not now. I envisioned my spouse retiring before me, because he is older than me. But I did not envision that he would be so ill and require attention, care, intervention, and advocacy — for so long.
Like others in the sandwich trap of cargiving for a loved-one and trying to work in a demanding, full-time job for a living, I realize that it is a challenging situation. And if I learned one thing during my previous caregiving experiences — I realize that I cannot work full time and care for my spouse full time. Something has to give.
What “gave” was my perception that I could do everything. That I could “handle it.” That I knew what I was doing. That I didn’t need anyone’s help.
My past caregiving experience taught me that there were others who genuinely wanted to help, but did not offer because they did not know how or truly thought (based on my bravado and courage) that I had everything under control. There were some people who said, “if there is anything I can do…” which for many years bothered the heck out of me because I thought it was a throw-away line that people said when they didn’t know what else to say.
I learned that in order to maintain my own physical and mental health, I need to allow others inside my tight caregiving bond and actually allow them to help. (I also learned when to insist that my spouse accept the help, as well — that was the hardest part!)
Finally, I learned that people want to help, but do not know what to do. I realized that I needed to be specific. “I need someone to…
- …help me learn to prepare meals for his special diet and accommodates my weird special diet, too.
- …stay at our house during times when my husband’s health is particularly fragile while I have to be away.
- …help organize a treatment plan that is easily understood and accommodates 10 different meds all to be taken at different times in different amounts.
- …take my friends grocery shopping because I need to stay home today to care for my husband.
- …listen to me vent my rage at the disease and the frustration I feel.
- …take me on a motorcycle ride for my own mental health.”
It has become easier to tick off a list of “here is how you can help.” The help I need is what I can delegate. I have become more comfortable with delegating tasks that then provide me the time I require to care for my husband and to give him my undivided attention, love, care, and support.
But as you can see, I also have been better at requesting help for me. I am no superman. I am vulnerable, too. I could potentially become ill myself by allowing my defenses to wear down by not looking after “me.” So I accept and encourage help from others to care for me.
A caregiver is at his best when he is less stressed by trying to do everything and hold his emotions in check. I reduce that stress by delegating and requesting help from those in my network.
One more very important point that I have learned: delegation does not mean giving up authority or control. I am still the primary caregiver and my husband’s husband. I balance that with having my husband’s concerns, needs, desires, and input considered throughout this ordeal. I speak up for him, but not “speak for” him unless he specifically asks me to do so. My role as a caregiver is to provide support, but the person receiving the care is ultimately in charge. I just facilitate actions to meet his needs, both stated and unstated, and my own needs as well — needs for a break from the intensity of loving worry.
I am blessed that my network includes my twin brother as my closest ally, but also my other brothers, sisters, nieces, nephews, cousins AND extensive network of friends in the community who I have helped over the years. It truly is an exchange… I help them, they help me, and together we are all better for the experience.
Lastly, I cannot describe a healthy mental outlook as a caregiver without recognizing that faith has something to do with it. I do not follow organized religion, and I personally believe that one can have faith without following a deity. My faith is deeply personal and it supports my positive spirit. I truly believe deep in my heart of hearts that my spouse will get better and our future lives will present many opportunities for fun together doing things that we used to do — such as travel, go on adventures, or most of all, ride two-up on my Harley. Some day. Not now. But not never.
A caregiver’s job is never done and the work can feel overwhelming as it is depressing. Taking each day at a time and leaning on a network of people who want to help, delegating tasks and reorganizing time is important. I can be a much better care provider by accepting that I can’t do it all.
Life is short: embrace help and use it.