A Caregiver's Journey
By Suzanne Campbell
It is commonly said that Alzheimer’s disease affects different people differently; so if you know one person with Alzheimer’s, you know just one person with Alzheimer’s disease. Based on my own experience as a caregiver, I can attest to the accuracy of this statement. Sadly, the truth of it only adds to the complexity of living with this disease. While there are certainly some manifestations of the disease that are similar, each individual’s specific course and progression is unique. The same is true for the caregiver’s journey. As caregivers, we live through the loss of someone. The specifics of our individual experiences of loss are also unique to the relationship, to who we are as individuals, and to the course and duration of the disease. It is through understanding the commonality of the individual experiences of loss and living with this disease that I have found participating in an Alzheimer’s caregivers support group at CaringKind so powerful. While the specifics of our situation are unique, we are not alone.
My journey as a caregiver began almost 11 years ago. In thinking about my experience, the opening sentence from Charles Dickens’ A Tale of Two Cities seems so appropriate: “It was the best of times, it was the worst of times, it was the age of wisdom, it was the age of foolishness, it was the epoch of belief, it was the epoch of incredulity, it was the season of Light, it was the season of Darkness, it was the spring of hope, it was the winter of despair, we had everything before us…” My husband Bill was diagnosed with Alzheimer’s just months after our first wedding anniversary. I still say he is the best thing that ever happened to me. We felt so lucky to have found each other and were looking forward to building our life together. When Bill was diagnosed, at first we were in denial, then devastated, and finally sank into deep sadness with the realization of what this meant for Bill, our future, and our life together.
Looking back with the inside knowledge of this disease that I have now, I can see signs of how it was already impacting my husband before we got married that I didn’t recognize as symptoms at the time. It was Bill’s boss who ultimately raised the flag and said something was really wrong. By the end of our first year of marriage, Bill had to retire on disability, and I have continued to work full time. While the disease started off insidiously, the progression became more and more challenging for both of us. I have found that each stage is difficult in different ways. This early phase was so hard for Bill as he experienced each painful loss of his mental abilities, and it was hard for me because his behavior changed. He became more angry and hostile, different from the man I married. I too was angry at what this disease was doing to him, to us, and to my life.
Trying to hold it all together for both of us was very stressful, and after a few years it was becoming almost impossible. This time it was my boss who knew something was wrong, and he encouraged me to get help. A friend of mine whose mother had Alzheimer’s suggested I contact CaringKind about joining a support group. I called the Helpline, and shortly thereafter met with Sharon Shaw for an interview to join a spouse’s support group. Joining this group has been essential to my survival! I admit that it was frightening at first, as several of the spouses in the group were caring for partners who were much further along in the progression of the disease than Bill. It was terrifying to think that this was where we were heading. But, forewarned is forearmed! The group experience has been so important to me for many reasons. Most importantly, it was the only time during the week that I took for myself. It has been the only place where I could share the anger and sadness that I have felt, and where others could relate to my feelings or at least understand them. At times I have been silent, or cried through the session without sharing. It’s an hour and a half each week when I don’t have to hold it all together. It’s a place where I have gotten great practical advice about supplies and approaches to help manage caring for Bill. And it’s a place where I am reminded and encouraged to think about and to take care of myself — something I haven’t been very good at. I feel a very strong bond with my fellow group members.
Once connected with CaringKind, I also took advantage of several of its education meetings and workshops including the Family Caregiver Workshop and the Legal & Financial Planning Seminar. These sessions provided important tips and information that would help me plan for my own future. I learned how critical it is to start planning and take action as early as possible when considering the potential long-term financial consequences of this disease. I found it overwhelming both emotionally and practically to really come to terms with the steps I needed to take to ensure my husband’s continuing care and to protect my own financial future. Attending these workshops as soon as possible after receiving an Alzheimer’s or dementia diagnosis is key to being able to plan and take action. I wish I had started sooner.
Five years ago, my mom was also diagnosed with Alzheimer’s. There had been unmistakable signs for a few years leading up to her diagnosis. The year that she died was probably the most stressful year of my life. Her anxiety and paranoia seemed to peak around the same time as Bill’s personality changed. I would get phone calls at work from my mom begging me to come home because she believed she was being held at knifepoint, and calls from Bill's caregivers that he wouldn’t let them into the apartment or that he had run them out of it. And as fate would have it, my challenges at work peaked at the same time. Fortunately, I was not the sole caregiver for my mom as I’ve essentially been for my husband. I have three siblings who were all willing to help, one of whom in the primary caregiver role. I shared my support group experience with them, recognizing that they could benefit from my participation even if they didn’t join a group themselves. My mom passed away two years later, mercifully, in my opinion, as she did not have to linger through years of slow deterioration. At this time, Bill had reached a point where he could no longer be my partner; I more strongly felt the loss of him as my partner as I grieved losing my mom. My life was so hectic that I was unable to attend the support group regularly, and I came to realize how important it had become in my ability to cope.
About a year later, Bill’s physical health declined sharply. No longer able to walk or care for himself at all, he entered a home hospice program and has needed 24/7 care at home for almost two years. I continue to work full time and my participation in the support group remains key to my survival. In July 2014, we transitioned into a new phase as I placed Bill in a care facility. It was a move I'd dreaded and hoped we wouldn’t have to make, but it became financially untenable to continue the care at home. It was a difficult change to make, but now that I’m on the other side of it, I can see that everything is going to be OK.
I’m now figuring out how to manage through this phase of loss and caregiving as my journey is not yet over. As part of this process, I stepped up to be an advocate. For me, it’s an important way to give back to CaringKind for the critical role the organization and my support group have played in my journey. It’s also a way to continue Bill’s and my mom’s fight against this monster of a disease. As grateful as I am for my support group, I hope that one day Alzheimer’s support groups won’t be necessary. I hope that this disease won’t continue to steal our loved ones’ personhoods, or exact stressful tolls on their caregivers. Until there is a treatment to prevent the onset of Alzheimer’s, it’s important to me to raise awareness about the personal and financial impact of the disease, as well as the amazing and critical support that CaringKind provides.
Bill Campell passed away shortly after this article was written. Our condolences to Suzanne, who remains involved in the mission of CaringKind.