Living, surviving when a loved one is dying
Michael Steffer’s sister, Kaye Freitag and his grandson, Brady. Contributed photo
There are always two sides to every story. This is never more evident than when it comes to death and how it impacts those of us who are directly involved. While it is quite often obvious how the dying person is impacted, the person or persons known as the “caregiver” does not walk away unscathed either. This is an attempt to follow the transition of my sister over a period of 10 years from a reasonably healthy person to one that welcomed death at the end. She wanted to let go, but I tried to make her stay.
Eleven years ago my sister and I made the decision to pool our resources. These resources allowed us to purchase a home and move in together. Eleven years ago my sister was able to function quite normally on the physical side of life; however, there were demons of the psychological nature that would surface many times over the last three months of her life. The loss of a husband in his 20s to cancer and the death of two sons prior to 30 years of age were tragedies that would surface many times.
The years from 2005-2007 my sister, Kaye, would enjoy many things on her own with no assistance or participation on my part. She enjoyed traveling to Wisconsin to see her one grandson or going to a casino for a couple of hours of contributing to the band’s economy. She loved hearing the “ding, ding, ding” of the one penny slot machines. Never a real big better (she rarely bet more than 50 cents a spin) but the sounds, lights and a chance to get away from the pressure of the current memories and those of days past was important.
While her grandson, his brothers or their parents were an integral part of her life, they were never a true active part of it. A once-a-year or once every two years visit for two days is a very different experience than that of a 24/7 caregiver. Please understand that I am not complaining about the role of the fulltime caregiver, but just as Kaye’s deteriorating lifestyle affected her, it had a corresponding change in my life as well. When you are only 11 months apart in age and the last two survivors of a family line, you have no choice in the matter – you become the caregiver.
Four or five years ago my sister started avoiding long trips in a car, or if she did take a trip, she was exhausted for days upon return. She had been a smoker for 40 years, and it was very obvious that smoking had taken its toll. She no longer had the ability to walk even moderate distances at slow speeds. Her lungs were now operating at less than 50 percent capacity and to make matters even worse, her kidneys were now down to 20 percent effective. After the last couple of doctor visits with batteries of tests and more prescribed medications, a new way of life was now emerging.
The last three years of Kaye’s life were a steady progression of negative realizations. The first time that I got involved with the doctor’s visits and consultation it started a whole new chapter in the downhill spiral, at least for me. This was the first time that she and I discussed the future and what it might hold. Nothing is more difficult to discuss honestly and openly than a problem that we had been trying to avoid for years. It was much like if we avoid the issue it may go away. Please believe me when I say it will not go away. Be honest and open!
The last three months of my sister’s life were the absolute worst time that I have ever experienced. The quality of life was now down to numerous and indisputable facts that we now had to address. I still was having a difficult time convincing myself of the real possibility that very soon there would only be one left in the line that I mentioned earlier. It was impossible to separate her pain and mine. We may not have been identical twins, but at the time, I don’t believe any two people could have been closer.
The last three months of my sister’s life were filled with depression on her part and mine. Just to mention a few obstacles that led to the depression were the following: fourteen different medications taken daily, oxygen used 24/7, dialysis three days a week. She lived every day in constant pain but tried not to show it by not speaking about it. My sister at this point was much more aware of how advanced her condition had become. Whether my sister was much more attuned to her condition than I was or I was in such deep denial, Kaye understood her situation much better than I did until the last three days of her life.
The last two months of her life was a parade to doctor’s appointments, hospital stays, nursing homes and more appointments to the Richmond clinic. Between all of the appointments and stays in the hospital and nursing home came two failed attempts to go home. The result was falling both times, once in the street coming home and once inside the home moving with the help of a walker. I have never felt so very inadequate in my entire life. I have now come to the realization that no matter what I had done nothing would have changed the final outcome.
While this was not a happy, light-hearted story of overcoming illness or cheating death, it is a story about human natures and the frailties of those of us that pass through for whatever time allotted. Be inspirational, be loving, be supportive, but above all else be honest and realistic. It is not an easy journey to make but one I now feel was necessary. A caregiver is not just what it implies, it is a lot more. It is a companion and a fellow traveler that feels and understands the pain until the end.
This story is not meant to lecture anyone on their relationships with their loved ones. It is simply my evaluation of the cycle and/or circle of life, depending how you see it. While not easy for my sister or I, it was made less painful by the support of my friends and loved ones that remain. The old expression about “forgive and forget” has been around for a long time. I now believe it is a lot easier to forgive than it is to forget. Bless you all and treasure your relationships.