Caring for Mom and Dad
My name is Dave Neal. I was blessed to have two wonderful parents Bob and Bert, neither of whom are with me now. I was an only child, which was a great advantage by times but a disadvantage at times; thankfully the advantages outweighed the disadvantages. My parents were older when they married; my mother was 37 and my father 30. I was not born until my mother was 42, which was an anomaly for 1962. Having older parents meant that I dealt with their aging at a younger age than a lot of my peers. I miss my parents, my dad passed away in April 2013 and my mother in September 2015.
I would like to share some of my remembrances of my dad who was diagnosed with dementia in 2006. My father was larger than life at many times, he was very outgoing, very involved in lives of friends and family; and a very generous man. He loved to give, he didn’t love to get. Christmas was always a somewhat difficult time because he did not really care to receive gifts. His dementia changed that about him; a man who had given and volunteered for years now had to accept help, he was forced to and, to his credit, he was able to accept that he needed assistance.
The initial changes were not greatly noticeable unless there was a gap in seeing dad. My mother would always compensate and step in for him; she undertook a role that she had never had to bear in their 50+ years of marriage. Mom and Dad lived in their own home in Saint John for the first three years (2006-2009) of dad’s dementia. I was living with my family in Fredericton, my wife and I had three children of our own and both employed full time so it was somewhat of a juggling act, the sandwich generation I would guess. We had a lot of trips to and from Saint John on a weekly and biweekly basis.
Dad and mom were so fortunate to have a wonderful friend and family network that they had built for years. They had life long friendships through church and social clubs and this would reap benefits to them in the years that were ahead. Dad had constant visits from friends who would call on him, stimulate his mind and spend time with him. A special friend (20 years dad's junior) would pick him up every week to go out for a few hours, dad loved Ray's convertible and mom loved the respite from caring for dad. Others would take him to events, many sporting events and they could "handle" dad and his sometimes-outlandish comments because he always had wild comments, his filter was never that thick, if he didn't like your hair he would tell you, that never changed.
Dad took part in an adult day care program sponsored by the Loch Lomond Villa (a long term care facility in New Brunswick, Canada) every week. He was proud of his crafts and drawings, they were displayed on his fridge beside the drawings that his three grandchildren had made not that many years before.
Dad's twin sister took a very active role in visiting, helping being, not only a sister but a best friend to both dad and mom, she was so unselfish in her dedication to dad.
These supports all helped greatly, they could not have enjoyed the quality of life that they did for those three years while they were in their house without them. My wife Judy and I would take turns taking dad to his appointments with the memory clinic at St. Joseph's. I learned to spell world backwards but many times I thought I might have dementia too because I could never remember those words I was supposed to. They memory clinic experience, although it was reality in your face, was supportive to know that there was help and support. My hardest appointment was about 1 1/2 years in; dad could still rise to the occasion. When the geriatric nurse asked dad to write a sentence, he wrote, "These are not the happiest days of my life". I cried, I still do when I think of that. Dad you always did your best to make me happy, can I do a better job of making you happy?
One thing we learned was to make decisions that were six months, at least, ahead. Don't plan for dad and mom's future tomorrow but look out farther. The supports and education are there but they cannot, for the most part, turn on like throwing a light switch.
2009 was a pivotal year, dad and mom moved from their house they have lived in for over 45 years to the assisted living unit at the Loch Lomond Villa. Mom and dad took the change gracefully, they listened to what we thought and believed was best for them. They never argued, they trusted my wife and I, we were so fortunate with that. This was one time that being an only child was an advantage; my siblings and I were on the same page! Looking back I think my biggest challenge was convincing my mother that people/visitors did not always need a cup of tea when they visited (kettles were not permitted in the assisted living apartments). The 1 1/2 years they were in assisted living were great, wonderful staff to feed, care and look in on them and we knew they both were safe. This change lengthened my mother's life, she was terribly tired caring for dad before that it was, after all, her duty. They were life long partners. Giving up the family home was easier knowing that this move was for their betterment; it was the "next stage".
The next stage in dementia I believe although predictable does come with challenges. What will the unknown factor be? Have I planned for this? This is where the support of professionals comes in so handy, listen to the advice and see what pertains to your situation.
What was next was a move for dad to Cedar Grove, the dementia unit at the Villa, I can remember the day Judy and I were with mom and dad in their apartment meeting with the provincial social worker for their file. Dad and I were on one side of the living room having a conversation when dad said I hear nursing home, you aren't putting me in a nursing home are you? My response was dad we are just looking at what is best for you and mom.
Why is his son allowing him to go to a nursing home? Why aren't I taking dad into my own home? Am I being selfish? The guilt I felt was immense, I should be doing better, he is my father, he cared for me now I should be caring for him. Somehow through the guilt, reality kicked in and I realized dad would get better care with professionals and mom could come to see him every day. I thought of my guilt but looking back, I never really grasped the guilt that my mother felt. The day he moved from upstairs to downstairs was crappy, it was not one of the best times of my life, it was one of the worst.
Nursing care was their own community, many different people in different stages of dementia and with very different personalities. Visiting was a little more difficult. My children who visited faithfully with my parents throughout all their years also found it more difficult to visit in Cedar Grove but they still did. Dad’s biggest worry became do they know I’m here, do they (staff) know how to take care of me? Yes dad, I know that they do. My father, my hero, the man I worshipped, the man I tried to be was now just worried about being safe. But safe he was, deep down we knew it and my mother did too.
Dad eventually moved out of Cedar Grove when he could no longer do the “shuffle” walk and was confined to a wheelchair. Dad walked everywhere in his life, with the neighbourhood kids on hikes, to the grocery store, to walk the dog, now he didn’t at all. Dad moved back in with my mom who now herself needed nursing care after a broken hip. They were two peas in a pod again. They moved into the new Loch Lomond Village together holding hands in their respective wheelchairs. Theirs and our journey continued, they were meant to be together till the end.
Although my father changed he was still my father, my dad, my children’s grandfather. We were proud of him. His personality would show itself even though he was ill. There would still be that twinkle, that gesture, that saying although not as often.
Thanks Dad for everything you gave me all of your life.
A note from Judy, a daughter-in-law's perspective
I consider it a pleasure to have known, loved and cared for Bob (my father-in-law) over his 10 year journey with dementia as well as throughout his life. You have heard the phrase "it takes a community to raise a child", well we used a "circle of support" to surround Bob to give him the best possible care while he went through each stage. We had picture books (family and friend albums, activities, etc.) that we put together for people to point out and look at when they visited. We had a guest book that we asked people to write in when we were not there and write about the visit so we would know who was in.
A man from Bob's church took him for a drive once a week. I cannot count the number of friends, family etc. Bob had over the years who came to spend time with him and my mother-in-law Bert. We did hire support workers through the early stages when he was still home to help with his care and he also went to an Adult Day Care Program. This allowed Bert time to regroup and reenergize. I remember thinking early on "How do we navigate this world" and the things that stand out were help from others, support programs, community services, online forums such as this, and educational services; again, it takes a village to care for someone you love. This helped us to not be afraid and to help us know what was coming next.
I am forever grateful for this time in my life when I could be a part of his life and caring for him. Was it always easy? No. I remember the day he went into nursing care from the 18 months he had been in assisted living. I cried the whole way from Fredericton that day knowing what my husband (an only child) and I had to do. I walked into shoppers and to the girl working behind the counter said: "I need Visine and makeup to make it look like I haven't been crying", I was a mess. I got my tears out before going, in hopes of putting on a brave face for Bert and Bob. We left him after settling in eating ice cream and he was happy. We were doing the right thing, but at the time it was unimaginably difficult.
So to end I would just like to say that even though days were difficult and tiring both mentally and physically; I consider it a pleasure to have helped him navigate his journey through. My husband and I were a team and we had such incredible help from family, friends and support services. Thank you to each of you, we are forever grateful.