A Little More about My Story

Just having a plan puts my family among the 5% of the US population that has actually thought things through, discussed them and taken action to make sure that all is in good order.

Looking back on it – and considering all the caregiving scenarios I’ve seen and heard about – there is no doubt in my mind that I had it easy. Yet it took pretty much all that my two sisters and I had.

Why do I say we had it easy?

First of all, my mom had proactively made sure that her will was in order, and that as a family, we’d all talked about her end-of-life wishes well before she was diagnosed with cancer. Most of her personal belongings and furnishings were designated for one of the three of us, avoiding any post-death bickering.

My mom had also purchased long-term healthcare insurance as part of her planning, so we had the financial resources to hire in-home help, enabling us to help grant her wish to die at home. In this respect as well, we were among the minority of Americans. Only 13% of our population has long-term healthcare insurance coverage. In addition, we were very fortunate to have in-home help who we actually LIKED, who were very sensitive to our situation and were able to add value rather than being another stressor.

We also had the gift of knowing how much time we had left together, which some might view negatively. But for our family, once Mom was diagnosed we were able to spring into action and address remaining details, including consolidating bank accounts, making cremation arrangements, and even planning the funeral service (down to which passages would be read and which hymns would be sung) and the Celebration of Life reception afterwards (including venue, catering plans, and our eulogies for that event).

Finally, we were extremely fortunate to have a medical professional as part of the fabric of our family. As a respiratory therapist, my middle sister was able to advise us on many things that were completely new to us. I was very freaked out, for example, with the oxygen tanks and making sure that I not only knew how they worked, but that I could get them working FAST. My sister was expert at easing my concerns and showing me the way forward on this and on a number of other accounts.

Because of these fortunate circumstances, we were able to spend my mom’s final days going through old family photos and paperwork, and clearing through pretty much everything in the house. My mom was very well-organized, and had already downsized quite a bit, so the job was not onerous. It made me feel good to help my mom feel more comfortable that everything was in order. We found lots of interesting things – old letters and cards, old photos – many including details and images that would have had no meaning for me without my mom’s guidance. People and stories from our grandparents and THEIR parents’ lives that only had meaning to us, but that otherwise would be lost forever.

We had what we knew would be final visits with close family friends, happy hours and dinners with those living nearby, and several good trips to places that were special to my mom and to us as a family.

We definitely had a few spats. I hadn’t lived with my mom for nearly 40 years by then, and it was hard. I was under house rules again, and that didn’t sit well with me at age 54. But I worked hard to respect her space and her remaining time left, and I accommodated her as much as I could without either being a complete doormat or letting myself become too resentful.

There are things I wish I’d done more of (like more old family photo afternoons!), and there are certainly things I wish I hadn’t said (more on that later!), but overall, we made the best of a sad and painful situation and I think we got through it with a modicum of grace. My mom was able to die in her own bed, in her own home, with only people she knew around her.

Even in this sense, we were lucky. While 80% of Americans would prefer to die at home, in reality only 20% actually get to do so (60% die in acute care hospitals and 20% die in nursing homes).

My mom’s thorough and proactive planning, along with her strong willpower and our ability to pitch in and support her, made it possible. While it was devastating to lose her, I feel great comfort knowing that our mother died at home, feeling safe and loved.

Planning for the time when you will serve as a caregiver can be difficult since you may not yet be sure of what your role will be – or how intense it will be. Or whether you will be living with your loved one (either in their home or yours), or living separately and visiting frequently.

But no matter what, thinking about your own self-care is something you cannot overlook. You’ll want to make good choices for yourself by considering the following items as part of your thinking and planning:

  1. Your personal daily routine and how you can maintain regular physical exercise and get adequate rest.
  2. Your nutritional intake (making sure that you get to eat what YOU want and need to eat, and not just sliding into eating the same as your loved one for the sake of efficiency).
  3. Takings supplements to help bolster your own health and to protect your energy, clarity and focus, and your immune.
  4. A “get well quick” strategy for battling your own colds, sore throats, etc. (you’ll need to avoid getting sick at all costs, since it could be fatal to a frail loved one whose health is already compromised).
  5. If you’re living with your loved one (or your loved one is living with you) … What YOU need in terms of getting what you need to get done done (i.e. home office, small desk in your private room, etc.).
  6. If you’re living nearby your loved one – whether they are living independently or living in assisted living or a nursing facility – What YOU need in terms of scheduling regular visits at times that work for both of your schedules.
  7. How you can carve out “ME-time” amidst all that is going on.
  8. How you can carve out some social time separate from your loved one.
  9. How you can carve out regular therapeutic appointments that will contribute to your being a better caregiver (it could be a massage, an acupuncture session, or even just a manicure and/ or pedicure – the point is, it should be something “just for you”).
  10. How you can incorporate more simple pleasures and positive actions into your daily life – things such as aromatherapy, meditations, journaling, flowers, etc.).

Leave a Comment