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‘I didn’t know’

I didn’t know. Mother had Alzheimer’s. I worked with people in the nursing home with ALZ. I helped people placing their loved ones. I thought I knew but I didn’t.

I didn’t know each journey is unique No one’s course is the same.

I didn’t know two-thirds of ALZ victims realize their disabilities and have severe depression.

I didn’t know most victims have pain.

I didn’t know there were reversible and irreversible dementias.

I didn’t know that caregivers have huge difficulty talking with practitioners because the loved one is always present.

I didn’t know that the early days of symptoms felt so lonely. People say dismissive things.

I didn’t know health care is so fragmented and that doctors do not talk to one another. There is no collaboration.

I didn’t know medicine is so siloed. Each specialty does its piece, then out the door you go. Not sure what is next.

I didn’t know that the team supporting the physician is so weak. MAs do not have the knowledge base needed. Appointment schedulers are not qualified to triage.

I didn’t know it would be so difficult to communicate with the practitioner. Portal messaging. Ugh. You see that someone read the message but no one responds. You don’t know if it was the janitor reading. Do they know anything? It feels like living in a vast void. You are alone in the journey.

I didn’t know that you have to bird dog every referral. So many mistakes.

I didn’t know you have to wait forever for an appointment.

I didn’t know that there is so little they can tell you about what is going on in your loved one’s brain.

I didn’t know that he would suffer so much. There is so much pain, real or perceived. Much cannot be explained by medicine.

I didn’t know I would put him to sleep so he doesn’t have to live in misery.

I didn’t know that it was so hard to find a qualified neurologist for this disease.

I didn’t know that no physician ever owns you. I am the quarterback. But I don’t know how.

I didn’t know how hard it would be to find activities and getting him to move. That it is a job.

I didn’t know how important acceptance is to moving forward in the process.

I didn’t know I had this many tears.

I didn’t know if myself or others realize the palliative needs of the disease.

I didn’t know the conflicting cultural values of curative care vs. palliative care.

I didn’t know it is considered a life-ending disease.

I don’t know what others do who have no background in this fragmented non-system.

I didn’t know I have to fight to get care.

I didn’t expect feeling justified when others in my ALZ groups experience the same things.

I didn’t expect the beauty of my family pulling together.

I didn’t expect the warmth I feel when he comes back for a momentary visit.

I didn’t expect the strength of friends stepping up to help.

I didn’t expect the wisdom to be able to help other ALZ caretakers.

I didn’t expect to have a hole in my heart that scabs and gets pulled off.

I didn’t expect I could still find joy.

I didn’t expect that our love would grow.

I didn’t expect God’s help. He is here every step.

Pat Demarest is a longtime Durango resident, caring for her husband. Her experiences have led to the formation the Durango Dementia Coalition, which is dedicated to improving care and services for those experiencing dementia, caretakers and families. November is National Family Caregivers month. For details, email ddc81301@hotmail.com.