Terry, un unpaid family caregiver, graciously shared her story with us about her experience and advice for others -
Before my mother became ill, life for me was very different than others. You see, when my mom entered Hospice care, we already lived in her home. In 2001, my mother’s macular degeneration got to the point where she needed someone to live with her to help her avoid having an accident going downstairs to do laundry or burn the house down trying to cook. Previously, both of my daughter’s had lived with her, but they were moving on in life with their own apartment and later, their significant others. My husband and I had nothing to lose as we were renting a duplex and my mother didn’t want to lose her house, so in May of 2001 we moved in and have been there ever since.
I worked part-time in Lake Geneva and our life was pretty normal; we had the same routine as every other household in America. Get up, go to work, come home, make dinner, watch TV and go to bed. That is, until February of 2005 when my mom had a panic attack about going to her sister-in-law’s funeral. After a trip to the ER, we learned that my mom had a mild heart attack and further testing showed she had a leaking heart valve. She was already in pretty rough shape as it was; she had pneumonia going into the hospital and then she was rushed up to St. Luke’s in Milwaukee for further evaluation. A lot of the heart surgeons there didn’t want to take my mom’s case because she was so ill. Luckily, her heart surgeon (from previous open heart surgery in 1996) Dr. Crouch, was available to assess my mom’s condition and was optimistic she’d make it through the surgery; it was post-op that he was most worried about. Through this time at St. Luke’s my mom had a blood transfusion and triple by-pass surgery, in addition to replacing her leaking heart valve. After rehabilitation at Lakeland Hospital, she came home.
The next two years were not easy on my mom; she didn’t want to leave the house, even after making plans. After several trips to the ER, in April of 2007 my mom was diagnosed with congestive heart failure and the doctor’s said there was nothing more they could do for her. Soon after, my mom entered Hospice care to keep her comfortable for what time she had left. My mom’s heart failure was very long and drawn out; she lived with this for 8 months. Right around her 80th birthday, which she said she was happy to have made it that milestone, she all of sudden didn’t know who I was. That was the hardest thing for me to accept; my mom not recognizing her daughter and instead thought I was the person there care for her; which I had been all along.
The biggest challenge I faced was losing my sense of freedom, the ability to come and go as a normal person gets to do. I didn’t have that luxury anymore. Hospice was able to find someone to come sit with my mom for 3 hours a week. This gave me barely enough time to run the errands for the week; grocery shopping, Walmart, the bank, etc. It was hard to go from being my mother’s daughter to her caregiver. No one prepares you for that. But, you do what you have to do and step up to the plate and get it done.
Being in the caregiver roll is like having a baby, you work around their schedule. At first you’re nervous because you don’t know if you’re doing the right thing, but then you remember you have a phone number to call someone for help and Hospice would come if they needed to.
The best advice I can give to someone who finds themselves in a situation like mine is to take advantage of any free time you get to do something for yourself, whether it is going to lunch with your spouse or going to get your hair done, just go and do something for yourself. Even if it means getting in the car and going for a long ride. Be your own advocate to find help for more than 3 hours a week so you can go celebrate an anniversary or birthday dinner. Awareness for this need is necessary.
For your own health you need more than a 3 hour a week break. Figure out a buddy system and enroll more family members and friends to come for a visit. It is hard when your husband, children, and friends work and you couldn’t and didn’t because you were the caregiver. If I would have had more ME time, I would enjoyed getting my hair done on a regular basis and going out for a nice lunch without the worry of having to rush home. Just to be able to put home behind you for those few hours and enjoy yourself, that’s what I would have enjoyed.