A six-foot tall, healthy and trim man with a mustache stands erect at the foot of my husband Chris’ casket. He watches me and brings me water despite the “no beverages in the visitation room” policy of the funeral home. Suggesting I sit down when he sees my legs buckle, and telling a friend to take me downstairs where there is food when the color drains from my face.
This type of caregiving comes naturally to my Uncle Jim, his entire life having been spent as a fireman. He is also an avid photographer – many of his work related pictures highlighted in the book he co-authored, Beertown Blazes: A Century of Milwaukee Firefighting.
Jim, father of five girls is an active, talented man before being diagnosed with Alzheimer’s disease. He dies after his ten-year battle with this progressive disease at the age of sixty-seven.
Alzheimer’s, Multiple Sclerosis, Stroke, Traumatic Head Injury, and Parkinson’s Disease – members of my family or extended family have lived with all of these and with each, grief is a part of the adjustment for both the person and their loved ones.
As the disease state progresses, one often feels that the person you knew before is no longer alive. There is a sense that they have died although they are still physically present. The life they have led and your role within it can change drastically.
Watching physical alterations affect their ability to do daily tasks begins the cycle of change. Often time cognitive abilities worsen and simple conversation is difficult at best and new ways of “being” together become necessary.
What have I found helpful as a family member or caregiver struggling to grasp the realities of a challenging diagnosis?
- Acknowledge your sense of loss for this person, their diagnosis and the fear you have about the changes that will be inevitable.
- If you find writing helpful, keep a journal or write a private letter expressing your feelings-don’t hold anything back, no one needs to read it.
- Take a kick boxing class, punch a pillow or find a physical way to release the anger and sadness you have about the diagnosis.
- Try to stay positive that you will find another way to support and love the new person even though altered by their disease.
- Find the courage (through prayer, positive affirmations, meditation) to remain present even through the difficult transitions.
- If you are the primary caregiver, accept help and find a caregivers support group or develop a network of capable helpers.
- Know that your physical presence matters more than having the “right” words.
- Share stories of how your loved one affected your life, or take pictures with you when you visit to stimulate conversation.
- Be flexible knowing that some days are worse than others so visits may need to be changed or time adjusted.
I still remember my Uncle Jim’s smile when I would bring my two young children to visit and he saw his favorite food-ice cream in our hands! The kids’ somersaults and cartwheels brought clapping and laughter to his day and the innocence of youth kept the conversation light.
It was difficult to see how my uncle’s disease changed him and took more and more from him. The reality was harsh, knowing that there would be a day we would have to say ‘goodbye’ forever. But I am grateful for the time we did have for the chance to “pay it forward” to the man who held me up during Chris’ funeral and cared for me when I was changed by grief.