When I brought my daughter home, I was terrified. I had all kinds of experience with kids, including babysitting, but this little person was depending on me in ways no other child had. My husband had to work that first night, and I was sure something terrible would happen. What if she cried all night? What if something happened when I was all alone with her?
Of course, we both survived the first night just fine, but then I had to learn to bath her and toilet train her and discipline her. It seemed I just got one thing figured out and she would change. Each step in her growth brought new challenges. When she had a sister and a brother, it was harder, as each of them was growing and transforming into the wonderful adults they are today. I had so much to learn.
For caregivers, change can be the enemy. It can occur in a moment, can vacillate back and forth, can be gradual and insidious, or occur in sudden, jerky steps. Change is caregiving usually mean there's been a decline.
A week ago, I was researching this topic for a support group I facilitate, and was surprised to find there is little written on the topic. I thought, "I'd better write it."
Change can be shocking. One day, you visit and share a meal and you laugh together. Later that evening, you hear that they have had a stroke, or fallen and broken a hip, or had a TIA (a transient ischemic attack or a small stoke) and are talking nonsense. Change slaps you in the face, and you reel from the attack. Immediately you must act, often without knowing what the correct course of action should be.
Change can be relentless. You've barely adjusted to the last change when something else happens. The person with the broken hip sufferes a heart attack in surgery. You get a diagnosis of dementia, and a few weeks later, a diagnosis of diabetes. Your emotions are always playing catch up.
In the last year of my husband's life, it was like this. Crisis followed crisis, and I struggled with how to respond. This was especially true one day when we went together to see the cardiologist. He'd had many disturbing symptoms, and I took time off work to get some answers. What we heard was frightening. There was no cure except a heart transplant, he would start the process for that immediately, and Bill needed to go on disability right now. Today. He drove into work that weekend, cleaned out his desk, and told his boss. We met with the kids. Life would be different, but it could be good. I remember thinking, "This will be different, but it will be okay." For a few weeks it was.
Then, he was back in hospital. He hated the hospital, and we used the time to create a "nest" in the basement. It was to be his place to recover from the heart transplant, and we poured ourselves into making it comfortable for him. He came home and loved it, but was only there a few weeks until there was another change.
Change can be gradual. Sometimes, it creeps in, and you don't notice. You know there are changes, but you are adapting to them as they come, and you don't notice how far down the road you've come.
My mother had Alzheimer's, and although she was young for the disease, it seemed gradual. There were things she no longer did, but they slipped away like the tide. One day, I opened a storage cupboard and saw a winter coat she had made five years ago. Fully lined, bound buttons--it was a work of art. She'd made it for my niece, and now my daughter was the right size to wear it. But in those five years, Alzheimer's has stolen my mother's ability to sew. Now she had no idea what to do with a needle, much less a sewing machine. I wept.
Sometimes change vacillates and confuses. The nature of dementia isn't a straight line. There is a lot of back and forth in terms of ability. One caregiver said, "Something new happens, and I wonder, "Is this something new, or will this be gone tomorrow?" The uncertainty can make life difficult.
This month, we will look at the challenges of change, and some strategies to deal with them.