It took me a long time to grow into my role as a caregiver for my husband, Ron. Early in our journey, I tried to fit what was happening into the life that was familiar to me and our relationship as I had known it.
I was familiar with being a parent but not with having a spouse with Alzheimer’s. I did not understand what was occurring and what would be required of me, nor was it something for which I had planned. I learned that being involved with the decline of a spouse or parent with Alzheimer’s is just the opposite of having a child.
An infant needs to be fed and to wear diapers. They need supervision and to know that they are loved. Little by little they can eat solid food and learn to walk and talk. Gradually as they mature, they venture further and further away from the supervision of their parents, eventually having their own independent lives.
If a person with Alzheimer’s lives through the duration of the disease, we will see just the opposite. They will go from a fully functioning adult to one who eventually cannot walk, needs to be fed, requires help with showering and toileting, wears adult diapers, is unable to communicate, and requires full-time care. And, unless we have had family members with Alzheimer’s or have worked in a field involving memory care, we probably are not familiar with the disease and have no idea what to expect. That was the case for me.
Becoming a parent was something for which my husband and I planned. I read a lot and took classes so I could be more familiar with my new role. After my daughter’s birth, I participated in a breast-feeding support group, and took her to a play group so I could hook up with other parents. At times, my husband and I would leave her with her grandmother so we could enjoy some time alone.
On the other hand, having a loved one with Alzheimer’s is generally not something that we anticipate. At first I was in denial. As I slowly became familiar with what was happening, I looked for ways I could learn more about the disease. Similar to being a parent, I took classes and joined a support group made up of others who were caring for a spouse or parent. I also used “respite care” where I could leave Ron for an extended stay, so I could have some time for myself.
In my roles both as a parent and a caregiver, I was challenged many times. I learned a lot about life. I learned that I didn’t always have the answer, and it was helpful to reach out to others for support. I also learned a lot about myself. I saw my strengths and my shortcomings. I learned that life is filled with opportunities and we can see them as such, or experience them as a burden.
Above all, I learned a lot about love. In Courageous Hearts, I spoke of “being love” versus being in love. There is no romance in either the role of a parent or a caregiver, but there is the opportunity to reach deep within ourselves and discover our ability to love. I quoted Phillip Moffitt in the book when I wrote,
“All love is already within you… as pure love without attachment or expectation. It is there for your discovery.”
That was one of my realizations, as a result of my journey as Ron’s caregiver. Looking at my role as a mother, it is apparent that has also been my experience with my daughter. And at this time in my life, it applies to being a grandparent as well.
