Weekend Visit - an Alzheimer Journey

These back to back art shows in Raleigh have been so exciting and uplifting for me.  As a caregiver, it’s imperative to survival to keep moving forward to stay positive. In the past, Jerry was the extrovert, off the cuff person.  I was the introvert, behind the scenes, analytical person.  Now, the rolls are reversed.  While it is energizing to put on these shows and meet people, I am still an introvert at heart.  Think way too much.  Verbalize my thoughts way too much.  THUS, THIS BLOG!

Sunday, after church, was the only day to visit with Jerry this week.  My normal schedule is every three days, but this time it had been a full week.  Deviating from the schedule  usually gets me into trouble.  I was tempted to stay  in my own positive world, away from him, avoiding reality.  But my heart told me I had to go.  The drive to New Bern is two hours.  Two hours of thinking!  Down and back.

When I arrived, Ro, my favorite CNA was on duty.  (I have lots of favorites.)  We all probably wondered if Jerry  would recognized me.  When I walked through the doors, Jerry saw me and his eyes lit up.  He reached out his arms and walked toward me and we embraced with bitter- sweetness again.  Sweetness that he knew me, bitter that it was in this way .  I was particularly emotional because it had been so long and I was reminded again of how much I missed him.  It never goes away.  I was still able to take Jerry out but soon realized that these types of ventures may be coming to an end.  We went to our pizza place but this time it was more difficult.  He was more confused and it was hard to get him to sit down.  He didn’t know what to do with that booth or chair and once seated, he kept getting up.  Thank heavens the place was empty.  The waitress was so kind.  After the confusion of getting him seated, I tried to make small talk to keep his attention.  There was no response.  But then I said, “I went to church today.”  He burst into tears.  THAT KILLED ME!  It was as if he had lost a child or something.  It told me that those things that he holds dear are still within him.

OK.  Onto positive thoughts.  Before going back, we drove over to the park and I put on an oldies station.  Jerry, immediately perked up and we threw a small football.  He loved that!  He even ran a few steps and threw a spiral!   I let Montana go and we played “keep away” from her.  It was a beautiful 15 minutes.  Whew!

The drive back forced me to think forward.  I couldn’t stay in the Jerry mode.  (otherwise, I wouldn’t have been able to drive.)  I’m hoping to think of ways to have more effective visits.  Maybe visit during an activity, or forgo the eating of a meal.  Maybe just a ride to get ice cream, then to the park.  Keep the music going, so we won’t get melancholy.  Keep the visit short, between 30 minutes and an hour.  Avoid staying too long, so that we don’t get too connected.  Hmmm. There I go analyzing again!

Life at the Home - an Alzheimer Journey

The seats were beginning to fill up at gate K7 in Chicago's O'Hare airport.  I was recently waiting for a flight to Los Angeles to see my son. I watch crowded hallways with anxious travelers scurrying to make their connections and was reminded of all the trips that Jerry and I had taken together. In fact, I  remember the exact place where we were sitting, when a cart drove by carrying  the famous Mohammed Ali.  Jerry jumped up out of his seat and reached out to shake his hand.  Ali graciously accepted the handshake.

Things are different now.  But, look at all the memories!

Life at the home is simple.  Simple is good for Alzheimer patients.  Jerry's body is stiff so it is a challenge just to lift a foot to put on a pant leg or put an arm into a sleeve.  Such things as these we healthy people take for granted.

Jerry lives in a secured memory unit that is attached to an assisted living facility. There is one long hallway with bedrooms on each side.  The dining room, activity room, and nurses station are in the center.   It's a cozy place, with warm and caring staff members, and very energetic activity directors.

To a person who is well, that setting would seem like a prison.  I can understand that.  But to an Alzheimer patient, the small setting is very secure and creates a sense of comfort. The routine schedule helps eliminate confusion and chaos that so often sends them into a state of fear and resistance.

Jerry's  day usually begins with a shower and shave, then breakfast at 7:30am.  Music plays to prompt the residents that it's meal time.  Once the music begins, the residents slowly begin to move toward the dining hall where each person has their assigned seats.  Jerry usually is snapping his fingers to the music.  There is usually a staff member at each table to assist in the eating process.

After breakfast, many of the residents go to the main activity room to take an early morning nap.  Usually every morning there are activities like  dancing, exercise, games, or singing.  Some residents are not able to participate because of the progression of their disease, but those who are able, often go on scenic tours around town.

Hospice has been ordered for Jerry, so he also receives visits from a social worker, nurse, CNA, volunteer, chaplain and a doctor.

Jerry is particularly attached to Tom, the maintenance man.  He's tall, like Jerry, about the same age, and easy going.  They are  frequently referred to as the "Tom and Jerry show".   Many times you'll find Jerry walking around with Tom, "changing light bulbs".  There's a certain positive perk when an Alzheimer patient is allowed to contribute.  It makes them feel valued and respected.

Most of the time, activities are held in the morning.  Once the afternoon begins to set in Alzheimer patients often experience "sun-downers".  Sun downers, in layman's terms, happens late in the day, when they are tired.  They can get confused, tired, and agitated so probably the that's the time when a rest would be a good thing.  Dinner begins at 4:30.  Then TV, then bed.

Like I said.  Things are different now.