Question: What are some tricks and strategies that help as caretaker?
I prefer to use “care partner” because there is still a mutuality of sharing and need satisfaction that continues to go on in my relationship with my wife, Kate. “Caretaker” connotes to me a more dependent and one-sided relationship of need satisfaction.
Patience, flexibility, and compassion represent the Holy Trinity for me in dealing with Kate as a person with Parkinson's (PWP). Patience trumps everything! It’s a virtue that is hard to come by these days!
I like to keep things easy. The easier, the better! Don’t make a big deal out of little things. The dishes might have to wait or supper might be late but they will still get done. Remember you are operating on “PD time,” which can vary from “on” to “off” and everything in between. It is important to remember that the PWP is doing the best that he or she can under the circumstances. Always have a Plan B to back up Plan A if the PWP is “off”, tired, depressed, anxious, tremulous, or dyskinetic.
Enjoy sharing a sense of humor with the PWP. Laughter is still the best medicine!
Kate also never lets me forget that PWPs still have basic human needs, such as love, sex, affection, self-esteem, as well as intellectual and social stimulation, which are critically important to recognize and respect. PD impacts those needs but does not negate them. Have fun doing things that the PWP enjoys and can handle successfully!
Question: Walk us through a time when you and Kate went through a crisis? What did you learn that could help others?
When Kate was diagnosed with PD, we were both devastated. Kate asked me if I was willing to stick it out with her or if I would jump ship. I told Kate that we will ride out this storm together and do whatever it takes to get through it. Our previous 23 years of trust, commitment, and love provided a foundation of strength and security for us to build on over the past 11 years as the going has gotten rougher.
Rely on friends and family for support. Attend a support group or get professional help, such as counseling from a social worker or psychologist for yourself as a care partner, or for both you and your partner together. PD will challenge the smallest cracks in your relationship!
Be decisive, take action, and do not wait for tomorrow, which might be too late! PD severely stresses a marriage or any family relationship—and it gets worse over time!
Question: Do you ever feel guilty about needing a break? How would you help people dismiss that guilt?
I can easily feel guilty when I do something for myself, like bike riding, fly fishing, or even watching sports on television. I do recognize that I need to meet my own needs to maintain my sanity, avoid depression, feel good about myself, and continue to be a successful care partner.
Kate also encourages me to engage in these activities, as part of our care partner relationship. She realizes that taking care of myself will directly benefit her. If you do not take care of yourself, how well can you care for your partner?
Question: What are your concerns as you anticipate the future?
I dread Kate’s further decrease in functioning and increased dependency on me in the future, along with her decreased quality of life. Essentially, it means moving from care partnering to more of a caretaking situation in which mutual need satisfaction and enjoyment dissipates and day-to-day survival becomes the primary focus. That situation will pose a serious challenge to my physical and emotional well-being.
Thinking of what has to happen, such as placing her in an assisted living or nursing facility, seems both alien and very frightening to me! However, I am aware of that PD clock that “keeps on ticking and eventually hands out a licking!” Death is a scary thought for me. PD makes death even more unpalatable in my mind.