The challenges of caregiving when your loved one is slowly declining
Caring for an aging parent or loved one who isn’t critically or terminally ill, but simply aging, and aging slowly, can be a challenge. Caregiving for someone who is slowly declining can be very different from caregiving for someone on a path of rapid decline.
While caring for a loved one with a serious medical condition is certainly trying, there is usually, sadly, an “end in sight.” Our elder loved ones who aren’t ill but just battling the ravages of age, may be with us for many years yet declining every year and not as capable as they once were physically and/or mentally.
Seniors who have been fiercely independent all their lives, those have been active with successful careers and fulfilling lives, will likely have a difficult time adjusting to their compromised or “reduced” condition and lifestyle. It’s frustrating and even disempowering for them.
When strong personalities who have always felt invincible develop physical and mental limitations, they feel vulnerable and insecure. They may be psychologically and physically distressed by their limitations. Even though they may still be very autonomous, living alone, able to take care of themselves, there are new limitations. Perhaps they can’t drive anymore or play tennis once a week like they used to; maybe it’s too difficult for them to even take the garbage out. They are likely to feel frustrated by how slowly they function at this point in their life or how, at times, they can’t find something. Because they are “perfectly healthy” or “just old,” it is harder to grasp. It’s easy to be in denial when you value self-sufficiency and independence; no one wants to admit they can’t do what they once did.
The Challenges of Caregiving
Independent seniors may be very resistant to accept help from anyone, especially from family members who see them in a debilitated state. My mother was a classic example of this. She refused to accept any help, even though she was a widow who really could no longer live alone. It took a scary incident – a fall – to make her finally, begrudgingly accept in-home care services. While she was a lucky one (the fall wasn’t horrific; she was okay) you don’t want to wait for an accident like this to trigger awareness. It isn’t always easy to honor a loved one’s autonomy while at the same time keeping them safe, but try to plan and prepare before it’s critical or urgent.
Parents who have always been smart and capable can slowly become incapacitated, which isn’t easy for them or their families. The elderly often prefer the familiarity of their own homes, even if these homes are no longer suitable based on their aging. They may also refuse the help they need, even though it’s not logical. We want to respect our parents autonomy and their wishes, while keeping them safe at the same time. Finding balance is an ongoing challenge and while the fear of falling on their part is very real, so is our fear of failing.
Ultimately, my mother’s caregiver, Marilyn, became her new best friend. That being said, we could never refer to dear Marilyn as a “caregiver” (because of course my mother did not need anyone to “care” for her!). She was my mother’s “assistant.” Okay. That worked for us.
The same mother who balked at having a caregiver in her home for even a few hours a day, after six months was so spoiled having someone cook her meals and so enjoyed the company, that she complained when Marilyn couldn’t be there all day. And when it became time for 24/7 care, my mom was happy to have “her” spend the night.
Increasingly, it seems our elder loved ones want to stay in their own homes. And it makes sense. When we get less stable on our feet and have trouble reasoning, we cling to what is familiar. If your loved ones want to age in place, they need to be in that place physically and mentally before they really start to age. Change is more traumatic for us as we age; it’s harder to let go and start over. Anything new gets scarier and scarier. When we finally convinced my mom to sell the big family home and move to a smaller condominium, my mother’s caregiver was right there with her, helping to ease the transition.
I can’t overestimate the value of finding gifted, caring professionals to help with in-home care. This is especially true if you are a long distance caregiver to an aging loved one, as I was. It’s easy to feel guilt, to worry incessantly, and to feel you are not doing “enough” to ensure your loved one’s comfort, happiness and safety. Professional help you can trust helps make the challenges of caregiving more manageable.
Another benefit of having a caregiver was that I didn’t have to always be the “bad person”, or if I did, I could solicit the caregiver’s support. Not surprisingly, my mom took direction from an “objective, third-party professional” better than she did from me, her daughter, or other children.
Another resource to consider when caregiving during a slow decline of a loved one is the Village to Village network, which many cities have established. 1 It’s a community-based care organization with volunteers who help seniors who are still at home and alone – they shop, drive, and visit, providing invaluable assistance on many levels.
As 75 million baby boomers in our country enter their 60s and 70s, we have hopefully learned something from caring for our aging parents and can better face the realities of our own “golden years.” We don’t want to be a burden to our own children, and if we don’t have children, we better have a plan in place!
While end of life scenarios involve a gradual decline, with proper advance planning and professional help, as well as tapping into community resources, it is possible to manage a loved one’s slow decline so that it works for you as well as them.