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LBD Story - Caring for Lee

When my wife, Lee, was diagnosed with Parkinson’s disease (PD) four years ago at the age of 51, I suppose we were in denial, since my sister (the other most important woman in my life) had lived with young-onset PD for the past 12 years. We knew life would be different but figured that if Lynn had continued to live such a fulfilling life, then Lee would simply retire from her career in technology and enjoy life in a different way that maybe would not always include her passion for hiking and skiing.

Living a life of constant change

When signs of progressive dementia began to show as short-term memory loss and the forgetting of words and names, she still did not want anyone’s pity and preferred to live her life as normally as possible. As Lee then developed hallucinations and some odd changes in her behavior and the doctors gave it the new label of Lewy body disease (LBD), we researched LBD and realized we might be in for a rough ride. Little did I know that her bravery in the face of mortality would bring about such a profound change on my life.

With a fairly rapid progression of Lee’s disease, new symptoms appeared as quickly as I adjusted to the last ones. Rigidity and hallucinations were followed by frequent falls and paranoid delusions. When incontinence and psychotic behavior became our reality, I felt like my well-planned life had spun out of control. The addition of a Fijian lady to care for Lee part-time and the introduction of anti-psychotic drugs to Lee’s regimen of PD and Alzheimer’s medications gave me the peace of mind that Lee would be safe and cared for during the day and that I would not be the object of her paranoid delusions at night. 

 

 

Bruce and Lee

Bruce and Lee in Alaska

"We did not have to live a tragic life."

Somewhere in the midst of all these changes, I came to the realization that despite the tragedy of Lee’s disease, we did not have to live a tragic life. I found that we have a choice to make of being victimized caregivers or of accepting the hand that life has dealt us. Once I discovered that my mission in life at that point was to provide the best quality of life for Lee as possible for the time we had remaining together, I found a clarity that has allowed me to endure difficult times and more greatly appreciate the good ones.

Activities like taking a walk on the beach with our dogs took on new meaning. I grew to have a deep appreciation for simple pleasures of time spent together and determined to find something special in every day. I planned activities that would give Lee mental and physical exercise, like going to museums and arboretums, which would entertain both of us and give me the satisfaction of being proactive. With the need now for a wheelchair most of the time, we take long “rides” along bike paths and through parks, providing exercise for me and our dogs while giving Lee the stimulation of different outdoor environments.

I have found that giving Lee something to look forward to (even though she rarely remembers yesterday or thinks about tomorrow) is as important to her as it is to the rest of us. Consequently, we plan a “party” every few months with close intimate friends and family who know and support Lee in her condition and also share in the planning and food. We play music, dance, and laugh with the realization that these are the best things that life has to offer. Despite her need to be hand-fed, we still go to restaurants since Lee loves to be around people. It is amazing that something as simple as a wheelchair identifies a person as being disabled and people are so willing to help and express kindness.

Learning to ask for help

Early on in Lee’s condition I learned how to ask for help. Three women stepped up and offered to take Lee on outings, both to stimulate her and to give me respite. None of us is superhuman and we all need time to ourselves. Virtually all three said they originally did this to help us out, but did not realize how caring for someone with a terminal illness would be a life-changing experience for them. Asking for help early on was so much easier than it would have been if I’d waited until Lee’s disease progressed to a later stage. I believe that our true nature presents itself when others are in need and we are able to help.

I think we have a tendency to protect our children and grandchildren from the reality of illness and death. While my son was still a teenager, I involved him in the caregiving responsibilities for Lee. Some of my fondest memories are of Ian sitting and holding Lee’s hand while telling her of his day at school or work. I have no doubt he has realized a previously unknown strength of character and depth of compassion through caring for his mother. Now at the age of 23, he has developed maturity and wisdom beyond his years.

Grateful for the gift

Now that Lee is entering the later stages of her disease, I realize that the intelligent and stimulating woman I married is gone. However, there is a loving and affectionate woman who is still very much alive to care for and to love. When I come home at night from work there are three words that she has not forgotten and never fails to say, which are “I love you.” When she becomes agitated (which she does and as we all do!), I can take her in my arms and tell her how much I love her and the agitation melts away. I can put on a favorite old song and lift her out of her wheelchair and sway to the music to where in her mind we could be ballroom dancing (never could do that!). At times like these, Lee’s smile will be forever etched in my memory. I feel as though Lee has chosen me to care for her and I will be forever honored and grateful for that gift.