Life After Diagnosis | The New Normal
Mary Gilliam, MBA, LNHA
Receiving the diagnosis of a degenerative disease for yourself or a loved one instantly changes everything. In the moment, fear and thoughts of what the future holds are consuming. Denial. Anger. Guilt. Hope?
Slowly over time, the normalcy of life without diagnosis transitions to a “new normal.” Perhaps for someone with Alzheimer’s, that means repeating forty-three times in a ten-minute period that a loved one is at work. Or, for someone that was diagnosed with ALS, transitioning from walking to a motorized wheelchair. Maybe it is removing imaginary snakes from the ground because a loved one suffering from Lewy Body Dementia has the disturbing hallucinations each night.
After diagnosis, there are many changes that happen over time and respective idiosyncrasies, but it is still a life to be had. It’s what I call the new normal.
The new normal changes throughout the disease process. At first, the new normal is static; perhaps a reflection of the past with apprehension of the future. Then the disease can turn from subtle to drastic, creating new norms for everyone in the path.
This new normal should be one that is embraced and cherished. Each day is a blessing and although someone might excessively repeat something because they forget, it doesn’t mean they have forgotten love. Just because someone with ALS is losing muscle mass and to transition to a wheelchair, doesn’t mean they can’t embrace a moment. And just because someone with Lewy Body Dementia has disturbing hallucinations doesn’t mean they can’t have moments of a beautiful reality.
Tips to embrace The New Normal:
- Be flexible to change
Use the principles Dr. Spencer Johnson illustrated in “Who Moved My Cheese” to help with family members. Know that change is inevitable, anticipate it, monitor it and adapt to it. Don’t be surprised if the mother you knew to hate fish wakes up loving it one day or a priest and family man start swearing like a sailor. To accept the new normal, you have to be flexible to the changes that come with it.
- Savor the good, get over the bad
There are good days and bad days when it comes to degenerative diseases. When your loved one is having a good day, spend the extra time enjoying the moments. If it is a bad day, cut the time short and re-approach. Often, just an hour and a new approach can create a different response.
- Stay educated and objective
Staying objective is harder said than done when it comes to the care of a loved one. Heed the advice of professionals. For example, if multiple professionals are telling you it is time to make some changes; listen.
- Learn different realities
When a loved one has a diagnosis of dementia, it is especially important to live in their moment. While it is very easy to correct and criticize, it is impossible to rationalize with an irrational disease process. Learn the other person’s reality and get in it.
- Take care of yourself
Finally, as a caregiver of someone with a degenerative disease, it is most important to take care of yourself. Give yourself space and rest so that emotionally you can be present. Take care of yourself physically so you have the strength and the stamina to pursue your labor of love.