” Don’t dwell on the disease, value the moments, the pearls of wisdom, their smile and humor.”

I have been most fortunate in having my BFF act as my caregiver. Ironically, I was her husband’s parkinson’s doctor for years and still continue to look after him from the side lines. but, when i was diagnosed and forced to close my practice due to medical issues, she was the first one to assume the role of not just my friend but also that of caregiver and travel companion. She often says she retired, the same year I did, to take care of me.

I suppose its a great symbiotic relationship. I provide levity, distraction, adventure and humor as well as advice in dealing with her own husband’s Parkinson’s of 20 plus years.

In truth, as many of you know it DOES take a village to care for a chronically ill person. She eases my husbands burden and I ease her burden. Although,  as of late since her knee surgery we have become each others caregiver.

Even though we have traveled together many times, this last excursion truly was the most memorable and fun.

Since I have gotten a bit more frail, I asked her if she would like to accompany me to my last meeting for medical writers in Orlando. However, as the day approached she also became increasingly physically compromised which made me wonder if it was a good idea to travel together. The last time I had taken a companion along, I ended up being the caregiver 24/7 which not only wore me out physically but mentally and emotionally as well. In my current weakened state, I was uncertain I could handle the task of caring for someone else. This is often what happens to many care partners, especially those that are older, when they become ill not only do they suffer but also the love one who depends on them.  (this is the time to ask for intervention and help from outside source such as respite care, a home aid, consider assisted living or temporary nursing home, call on other family members or close friends).

However, when both partners are willing to work together and rely on each other strengths, the stress of care-giving can be greatly diminished and might even end up having fun as we did.  So, we set out on an adventure thinking about our needs coming up with the best plan to maximize our well being and minimize any possible injuries and stressors.

start by formulating a plan- including expectations (this is not just for traveling or long term goals but day to day activities)

We knew we both had hard time traveling so we upgraded to comfortable seating in plane, we got a scooter for her and took a walker and cane in case either one of us needed it. I took all the medicines which could help with any incidentals- which by the way came in very handy when I got sick the second day.

Her scooter was great because, I did I not have to carry any bags which usually cause spasm in my neck triggering migraines. we took time to eat so we could take our medicines on a timely manner and rested when we felt like it. It was the first time i did not feel pressured to do or go because if she was tired and needed rest I rested as well and vice versa. Yet, we were able to enjoy nice dinners a day at Epcot and I was able to attend my conference while she rested.

We decided on the best mode of transportation – i.e. whose car was more comfortable for travel and who did best driving depending on time of day and physicality. She drove while I was sedated by medications. Also we considered time of day when we are at our best to take charge of situation, I am best at night and she in the morning- ease peace to divide responsibilities just as I do with my husband in caring for our daughter and other house responsibilities. { don’t try to do it all or go at alone- unless your spouse/ patient is completely incapacitated and demented, there are things that can be split up- giving them a sense of purpose and also allowing you free time}

So in the end, with open communication, realistic goals and expectations care-giving can be a bit less stressing and accept that there may be days when plans just have to be thrown out the window due to unexpected circumstances. (we both were so tired one morning, we decided to forgo early morning event we had scheduled.)

Despite, many physical impediments we manged to have a good time- even got our picture taken with a couple of Disney characters!

 

 

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All rights reserved maria De Leon