When my husband Rick was diagnosed with PAH it was a shock to both of us. I couldn’t believe that out of all of the things his symptoms could be related to – the symptoms were actually caused by a rare, idiopathic, and incurable disease. Even though you want your loved one to always be healthy; when symptoms start, you’re never quite prepared for it to be something that has been missed and under diagnosed for years. Our lives changed with his diagnosis in October of '08. Because of the amount of oxygen he requires on a continuous flow, it’s not practical for him to drive or travel alone. Therefore, when I pull the car out, he comments that when the "bus" pulls out he wants to be in it to have time away from home. I load tanks in the car and chauffeur wherever we go. This has been a change because he was always our driver. I am in charge of issuing his medications and coordinating appointments. Rick's doctor required he lose 40 pounds and I became his dietician. With the amount of medication he takes I also knew I had to make sure his meals were nutritious as well as low in calories, fat, and sodium. I searched the Internet and called his local medical doctor for tips and information. Between those two sources I was able to shop and create meals to satisfy him along with meeting the dietary requirements. He’s lost about 32 of those forty pounds since February of '09. We give each other the credit for his success.
I’ve always dealt with areas that cause stress by praying and exercising. I find that some` me’ time is very important in terms of being a better caregiver. I realized that I wouldn’t be any good to either of us if I took `me’ off the list of things to take care of. I have dinner with friends once or twice a month and I exercise most mornings. On the rare occasion that we schedule morning appointments I don’t get out to the gym that day.
We make sure he gets some `his’ time with the fellows as well. I taxi him over to have breakfast with his sports and retired buddies. We’ve started date night on Thursdays and thankfully we enjoy each others’ company even when we get on each others’ nerves.
Early on I had to let go of feeling guilty about not being as gentle with him as I felt I should. Prayer and exercise lead me to a place where I can cope with the change in our lifestyle. As a married couple, there were things that my husband did that got on my nerves and just because he’s not well right now – I had to learn that I don’t have to feel guilty about those things that still get on my nerves. The most important information I can share is to keep communication very open. Don’t leave anything to assumptions. Don’t assume he knows how you feel or that you know how he’s feeling or what he’s thinking. Without open, honest, and kind communication you’ll never know when you’re on the same page or even reading the same book!
I was sincere in my wedding vows, before God, about in sickness and in health, etc.... and now writing about all of the unconditional support a caregiver should provide for a loved one. So the changes in my life are basically meaningless compared to him suffering, coping, and dealing w/ the disease. It's difficult for me to describe how I've been impacted because it's just life - adjusting and readjusting! We’ve learned a lot about how to live with the disease by attending CAPH Support Group meetings. The leader of our group, Merle, is a God Send and we are so glad we responded to the flyer and attended our first meeting. The meetings provide us with a peace and support to function within daily activities. They also supply the format for continuous learning to accept and live with the disease.
The best advice I can offer, from a caregiver perspective, is to have a joint commitment to learn as much as possible to provide quality care, take notes and ask questions at all appointments and meetings, be honest and kind, overcome challenges, and love life.
June 1, 2009