An Unexpected Journey

By: Dar Lehman

I was a caregiver for my husband, William, who was diagnosed with dementia in 2007 at the age of 77.  We began a journey that was totally unexpected. It affected not only him and me but also our children, grandchildren, extended family and friends for nearly 10 years.

None of us were acquainted with dementia. No one in our family had ever been diagnosed with this disease. It had started out harmlessly – he had begun to forget names and how to do basic things like balance a checkbook, which he had done all his life. This was quite a surprise given that William had taught thousands of children to work safely in a woodshop, commanded a military post, and served as a deacon. Little things like, misplacing his keys and losing the car in the parking lot were that much more surprising. We began losing the man we knew and loved little by little.

I began to notice small things that made me think something was not right with him. He needed help getting dressed, he lost his concept of time, he would get upset with small things, could not recall our phone number, dates, and he would sleep much of the time.

I asked our sons to watch their dad carefully when they visited us to see if they noticed anything out of the ordinary. They agreed that something was not right. At a regular doctor appointment, I informed his doctor of my concerns and described some of his behaviors. Instead of finding answers, I was told “Good luck with that,” so I began searching for a neurologist.  He thought my husband was suffering from delirium. I couldn’t understand what that meant, so we found a new doctor who finally confirmed that my husband had dementia. We had also found a new geriatric doctor who understood what we were dealing with. I had begun to attend a support group for caregivers for people with dementia, and that proved to be a great help over the next 10 years.

We had all begun to research this disease, getting information on the internet, at the library, through the support groups, and listening to speakers who held discussion groups. We gathered all the information we could find. Even the grandkids were doing research on the subject. We have learned a great deal as we traveled this journey.

People need to understand that this disease is not the same for everyone – and it is not something you simply surrender to. Everyone does not follow the same path – there is no timetable. The person you knew and loved is still inside – the disease simply takes over. Getting upset and angry won’t help. You need to cherish the time you have with each other, looking for the good in the midst of all the bad. It is there! Ask for help from others.

I cared for my husband at home for five years on my own. Our family was very helpful, but it was mostly me 24/7. After those five years, our sons finally stepped in to say it was time to get outside help. We were lucky to find Senior Helpers who found very compassionate, well-matched, patient caregivers to come three days a week for a few hours. That gave me some time to get away and do the things that I enjoyed. You need to have time away from the stress that is there all the time, physical, emotional, and spiritual, even if you don’t realize it.

Finally, when it got more complicated with other medical conditions, we decided it was time to find a facility where he would be able to get the help he needed, which I could no longer provide for him at home. We searched for the nearest, nicest place we could find, and he spent the last three years of his life in a memory care facility. I spent hours with him every day for the entire time he was there. It was like home to him. He never asked about coming home, nor was he ever unhappy there. He had always been very outgoing and happy, and that never changed. Our children and grandchildren also visited with him often. We attended every event they held there – monthly brunches, socials, holiday parties, and arts and crafts events. He and I went out to lunch, visited museums, parks, and anywhere else they arranged for the residents to attend.  They would always invite me to come along, so I did. Even if he wouldn’t remember, I could make memories for both of us.

Our faith was always a very important part of our lives. He had even been ordained as a deacon in the Catholic Church. As a result, we had made friends with many wonderful priests over the years. William would get the biggest smile on his face whenever one of them would come to visit. He had lost the ability to have a conversation with them, but his expression said it all. Visits from the grandchildren would cause lots of smiles and laughter as well. Our faith and our many caring friends who supported us all along the way made it possible to complete our journey.

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