Reflecting on Caregiving: Lessons Learned
I had the opportunity and good fortune to be able to listen to the podcast of Dr. Terri Pease last week re: her journey of moving from being a care partner with her husband suffering from Parkinson’s Disease, to the roll of caregiver. This particular subject caught my attention as soon as I saw the title as I had walked the same road over the last few years, though my wife, now deceased, suffered from a different disease.
Dr. Pease gives so much great advice about the stages and steps you can take but none more important than to sit down and talk with each other about how you REALLY want to see things handled if either of you has to become a care partner and then a caregiver. In my case, we were fairly certain that my wife would be fulfilling the roles because of hereditary heart issues that I have. But NO!!!!! Cancer came into play for her and took her after a lengthy battle.Â
Have the Important Discussions
We were very fortunate to have had an attorney who helped facilitate our discussions when he re-did our wills just a year ahead of her diagnosis. Having a living will which details decisions made when both of you are mentally and emotionally able to respond to those questions is critical. If either of you has a long term or terminal illness, the Drs and Hospitals will ask for that information. Having that was so important during her last days. We were able to honor her wishes without guessing what she might have wanted.Â
Susan was able to function somewhat normally for a while after her second diagnosis. She had been diagnosed earlier, gone through all treatments of chemo and radiation and was cancer free. Nine months later, the cancer returned with a vengeance.
At first, care partnering included driving to appointments, encouraging, arranging meals, learning how to use the washing machine and dryer, anything around the house to just take work away from her. A key element was just trying to keep life as we knew it as long as we could. There were many good days during the early stages. As the disease progressed, they were fewer and fewer to the point we looked for good hours.
In retrospect, what did I learn from our shared journey and what would I do differently if traveling that road again? While I do look back and see a lot of things learned, I don’t know all that I might do differently. Why?  Because sometimes you don’t know all that you don’t know. Such as how quickly things can change. There were things that she could do independently one day, that started to require various levels of assistance overnight. Just take one day and one hour at a time and make the best decisions you can at the time. If you make those decisions out of love, you are on the right path.
Reflecting on Caregiving: What I Learned
- Take each day as it comes and make each day special. While able, do the things that both of you want to do and can do. Celebrate each other each day! This is something I would do a lot more of.
- Preparation is absolutely key. Research the illness so that you can recognize and respond to needed changes.
- What are the things I will need at some point such as equipment, walkers, shower stools, medical supplies, etc.Â
- Your partner is still the person they have always been and wants to function normally as long as they can. Admittedly, I was scared and tried to “overdo” in many instances. Let them be themselves as long as they can.
- Develop a small team of people who can help with care on an as needed basis. What friends, family, Caregiving professionals, etc. would your patient be comfortable having help them if you need to be away for a bit. You will know when the condition still allows that. You will also know when it needs to be you and the family.
- The relief team is critical because the care partner/giver also needs to just get away from the walls and the grind in order to be the best partner they can be. And sometimes the patient needs to see a face and hear a voice other than yours.Â
- I’ve mentioned above what should go without saying re: wills and discussions about wishes. I need to emphasize that there is no substitute for a will. I’ve just lost a close friend who did not take this step and it just creates so much hardship for the family. If you love your partner and your family, prepare wills.
My pastor told me as we were going through this valley to “Remember that God has never loved them as much as He does right now”. I’ve reflected a lot and realized that the two of you will experience the most love ever! Cherish it.
Gene Holdway
Gene & Susan met at Mars Hill College and married in May of 1975. They have 2 grown children. Susan was a professional social worker until the first child and Gene spent his career in Customer Service and Sales. Gene’s career took them to Maryland & Minnesota before returning to South Carolina in 1995. Susan developed gastro related health problems in 2005 which began the journey from husband/wife to caregiver to eventually to care taker. Susan passed away in Oct of 2022. Gene still resides in Greenville, SC.
The post Reflecting on Caregiving: Lessons Learned first appeared on .