When Dementia Gets Personal

It got a little personal to say the final good-bye to Glen Campbell this week. Remembering his journey with Alzheimer’s disease took me back down the road of my dad’s last few years living with vascular dementia. I re-watched the transparent documentary that the Campbell family made to raise awareness. Then I perused an e-mail folder of notes with my brothers during Dad’s illness.

I smiled. I laughed. I cried. And I divided the stages of his dementia progression into categories more descriptive to me than the ones the doctors used.

Stage 1: Who is this visitor, anyway? Our dad was living independently, going to the gym 3x per week, and still driving his car when this visitor named ‘dementia’ started sneaking around. It began with occasional irrational thoughts or fears that became more frequent. The visitor was like a bad influence that wandered in and out, turning our dad into someone else for a few seconds at a time. He was frustrated. We were frightened.

Stage 2: Don’t worry, we have this. Then Dad started having trouble daily living. He needed help with his showers and laundry and check writing. He sometimes phoned my brother who lived nearby in the middle of the night, because he couldn’t remember how to get back to bed. Glen Campbell’s daughter sings a touching song that says “Daddy, don’t you worry. I’ll do the remembering.” So my brother began to take daily tasks over for him one by one. We were grateful Dad didn’t fight our help as he began to lose independence. He was relieved. We were anxious.

A few months into this phase, we moved Dad from Cincinnati to Houston into an assisted living facility near me. It was on day three when I realized we had begun our role reversal. I hinted of it in an e-mail to my brothers.

I went by after work intending to stay 30-45 mins and stayed 1.5 hrs. He kind of gets into stall tactics like when the kids were little at bedtime! He was sharp one minute and saying something in left field the next. He wanted to find the nurse because he was concerned she had forgotten his evening meds. I let him handle it on his own and stood behind him. He was so clear, the new night nurse thought he was a family member asking about another resident! As soon as we turned around from her, he started talking about his tongue "which you know is not my original tongue." 

The result of “Don’t worry, we have this” can be a heartwrenching change with a spouse or a sibling and almost always brings a role reversal with parents. I found myself under the same ‘working mom’ stress as when my own kids were growing up. Feeling guilty if I worked too late and didn’t get by to see him, scheduling doctors’ appointments, worrying if his care was ok, and being alarmed when he said something strange about his tongue.

Stage 3: I’ll come into your world. Over time, dementia’s visits to Dad’s mind lingered. He spent more time in another world and less in mine. It was then that I received the best advice from a colleague. “Stop trying to get him back into your world; just go into his world.” This changed everything. It became another new normal. When Dad said he had just gotten back from working in the field, I commented on how hot that must have been. When he said “Hello, Jo Marie,” calling me by my deceased mother’s name, I returned her familiar “Well, hello, good lookin’!” When he wanted to fix the toilet, I said ‘ok let’s go work on it.’ Then we walked around the hallways until he forgot about it. He felt validated. I felt less stressed.

Stage 4: When dementia doesn’t leave anymore. At some point dementia took up residence and seldom left. He had repeated falls and mini strokes. He moved to a memory care unit where he could receive more care. We no longer picked him up for church or took him home for a meal. He didn’t want to go anywhere. He was comfortable with his routine and structure. The odd thing now was that if the dementia housemate did leave for even a brief moment, Dad would feel the frustration of things not being right. But the more constant it stayed, the more he felt settled. Those were sweet times. There wasn’t much conversation, but I cherished holding his hand in silence. The amazing thing was even on the days he couldn’t put a sentence together, he could sing an old song, not missing a word. If we asked him to pray, he prayed with clarity, as if his spiritual muscle memory just kicked in. He was content. I was grateful.

Stage 5: He’s still here, but gone. By now the changes came like summer storms. I cried the week his dining room menu changed. The update to my brothers read like this:

Well, we've reached a new stage this week.  I had mentioned to you a couple weeks ago that Dad had started to hold food in his cheeks. Today I stopped by at breakfast and they were feeding him puréed food.  A bowl of light yellow mush and a bowl of grayish brown.... His eggs and sausage.  Was so sad for me, but he was eating it well and finished both bowls.  These "firsts" feel much like when you experience "firsts" with your babies, only in reverse, and not as joyous. 

This was a grieving stage for me. My dad’s body was still here, but he had slipped away already. Only two tasks remained for him. He slept and ate. The basics of life had come full circle. I trusted that God still had a purpose to leave Dad on this earth, but I didn’t know what it was. I didn’t question, but I wondered. Just like Glen’s song “I’m not gonna miss you” I knew that Dad no longer wished for his old life or missed us. He was just waiting. We, too, were waiting. But how we missed him already!

This is where hope enters my story. We waited with hope. As believers in Christ, we are not exempt from suffering on this earth. Yet we have hope of a new eternal life with Him.

And we believers also groan, even though we have the Holy Spirit within us as a foretaste of future glory, for we long for our bodies to be released from sin and suffering. We, too, wait with eager hope for the day when God will give us our full rights as his adopted children, including the new bodies he has promised us. [Romans 8:23]

If you are a sojourner, loving someone through dementia, I pray for your strength. Strength to accept, to cope, to enjoy the sweet moments, and to wait. May you find that eager hope of glory in your wait.