Alice

My first encounter with dementia occurred when I was just a girl. I remember going to visit my grandmother when I was about 13 years old. Laying in a bed in the fetal position, she was nothing more than skin and bones. Unable to speak or sit up. She lived in this state for 2 years though always maintained the ability to eat. She looked nothing like the grandmother I knew who, when she came to visit, would clean my bedroom and bake fabulous pies. Her signature scent of Dove soap had disappeared only to be replaced by the smell of a nursing home. Dementia had robbed her of life for over a decade before she finally died at age 84.

John

He was an amazing man. His family was his greatest treasure and accomplishment. My boys were fortunate enough to have several years with him before he really began to fade. They spent many nights at grandpa and grandma’s house, playing baseball in the front yard, golfing, bowling and going to the zoo. He made the best breakfast, complete with turkey bacon. My oldest son recalls one of his favorite memories with Grandpa. They were having lunch at McDonalds and grandpa was imitating what someone without teeth might look like drinking water. He remembers water running from his mouth, all over his shirt and table! Silly Grandpa!

As his Lewy Body dementia progressed, his personality changed. He was anxious, depressed and irritable. Baseball games in the front yard with grandchildren were replaced by disturbing hallucinations of people in the yard just outside the bay window. Easily overwhelmed by people and commotion, being near family and friends became a source of anxiety and stress for him. He was 60 years old when he was diagnosed with Lewy Body Dementia. He died at 66.

Laurie

She has always been such a beautiful woman. Intelligent. Independent. A successful real estate agent. Keeper of the books. Driver of the boat, pulling her husband skiing through the slalom course. Exercising. Always taking care of her beloved dogs. The first sign of trouble was when she could no longer manage the books.  She was just 61 when she was diagnosed with early onset Alzheimer’s Dementia. Today, she can’t remember if she fed the dogs or not. While still beautiful, she wears the same 3 outfits, day in and day out, even if she has a new beautiful piece of clothing. She can no longer be left alone. She can’t do the grocery shopping any longer.

Her husband of 44 years now manages and handles all of the details of the home including cooking, cleaning, caring for the dogs and making sure she has all of her care needs met. Interestingly, as she has progressed through her dementia, a new woman has emerged. She is more social and joyful, particularly when music is involved. While she may not recall what she had for lunch, she can recall the lyrics of the music that has marked the moments of her life. She can often be found dancing and singing and if you are in the vicinity, you too will find yourself dancing.

Dementia

6.7 million Americans are currently living with Alzheimer’s dementia. This does not account for the other types of dementia such as Lewy Body dementia, vascular dementia and frontotemporal dementia. 2/3^rd of those living with dementia are women. This may be attributed to the fact that women have a longer life expectancy than men and the incidence of dementia increases with age. There is also evidence that suggests that the lack of estrogen in the menopausal years increases the risk of developing dementia.

Dementia is indeed a terminal illness. Medical providers don’t always do a good job of communicating this. As dementia progresses, the individual loses the ability to do the most basic of things: misplacing objects, performing poorly in their work, inability to complete complex tasks such as preparing a meal or managing finances, not knowing how to select appropriate clothing, losing control of bowel and bladder, inability to walk, speak and swallow. Often caregiving needs exceed what can safely be provided in the home and the person requires round the clock nursing care. In the end stage of the disease, infections such as urinary tract infections and pneumonia become prevalent and are often the cause of death. Deciding whether or not to treat these issues can become a great source of stress for the caregiver. Hospitalizations can become frequent and treatments may fail to improve quality of life.

It is not uncommon as dementia progresses that the person experiences personality changes. The person can become angry, irritable, paranoid and combative, particularly when the ability to recognize surroundings and loved ones is lost. Other times, the individual may become more complacent, pleasant or agreeable. Behavioral and personality changes can make caregiving even more difficult.

Caregiving

For those who love and care for those living with dementia, they endure a grief and loss process that spans the duration of the disease. I call this “the long goodbye.” Often times, the caregiver will go to great lengths to disguise their loved ones deficits, to normalize the changes, shutting out family and friends in effort to protect themselves and their loved one. As the disease progresses, isolation occurs and the health of both the caregiver and the person living with dementia suffers. And suddenly, the rest of the family realizes how bad things really are.

The Final Goodbye

We had planned to meet with the palliative care team. But he wouldn’t leave the house. He was too anxious and agitated. So, the team came to us.  My colleagues and friends, the palliative care physician and nurse came to the home. As he examined my father-in-law, he looked at me and said, “Janelle, I think we can enroll him in hospice.” How I missed that he was at this stage took me aback. How did I miss this? I mean, I do this everyday. But it is different when it is someone you love.

My mother-in-law called me 4 days later on a Sunday evening while my family and I were at my brother’s having dinner. She said, “Janelle, I just can’t do this anymore.” I rushed to their home to find John agitated, pacing unsteadily, at risk for falling. My mother-in-law was exhausted and distraught. I asked him to sit in the recliner then I sat down right in front of him on the floor and demanded a shoulder massage so he would stay put. In his wellness he would always do this. Anyone who was a recipient of this affection was always blessed by it. This kept him occupied until the hospice nurse arrived. 

We were able to get him to the hospice house that night. Looking back, it is hard to believe we were even able to get him in the car to get there. Upon his arrival to the hospice hosue, he was so agitated and distressed that he required several doses of medication to help him rest and relax. Within 24 hours he was gone. We were flooded with a mix of emotions. Profound sadness that he was gone mixed with relief that he was no longer suffering. The long goodbye was finally over.

For Aunt Laurie…Keep Dancing!!!