My Second Long Goodbye: Chapter 1
Having lost my wife’s mother in 1998 to dementia our life returned somewhat to normal. Our second son went off to college the next year giving us two college students simultaneously. My mother died in 2001 and we retired from public school teaching in 2003 to begin our life of leisure and travel or so I thought. It turned our that my wife was not ready to be fully retired and she took a job at the local university as a student teacher advisor and part time instructor.
She was great at the job and it gave her a sense of fulfilment but it also meant our being tied to a school year calendar again and severely restricted our travel which I was not keen with but managed to hold my tongue for the most part. This situation lasted fourteen years until 2017 when my wife decided to fully retire although she really didn’t want to and made it clear it was because she felt that is what I wanted.
In actuality I had long since adapted to our schedule and had come to realize that her work was intimately tied to her sense of worth and had long since stopped suggesting she stop. Nonetheless she did retire at that point and looking back from my vantage point today that was the beginning of the journey we are on today. She had given up her purpose in life and felt rudderless and unimportant from that day forward.
The changes we began to notice
In the summer of 2017 we were joined by our younger son on a trip to discover my wife’s ancestral home in Ammerschweir, France. Her family roots went back to the 17th century in this small French village! It was a fabulous experience where we were met by a retired university professor that I had previously been in touch with who introduced us to the vice mayor. The vice mayor brought us into city hall and served us wine and cheese and took our pictures for the local newspaper.
We were treated as long lost relatives and celebrities and given a tour of the small village which ended at the professor’s home for lunch with him and his wife. It was the type of trip that we had hoped to enjoy during our retirement but it ended up as the last overseas trip we would take. Our plan had been to make our next trip a visit to Rome and Vatican City and the year it was planned Covid stopped the world and my wife’s symptoms began to emerge and worsen.
In March 2020 I had a bout of vertigo one afternoon and my wife insisted I go to the emergency room to get checked out. Because I was dizzy she drove and almost ran us into a concrete abutment. It was scary but she self-corrected in time and we were fine. Once at the emergency room I was checked out and they decided I needed an MRI and would have to be admitted overnight. This of course meant my wife was going to have to drive home in the dark by herself which I did not think about when I let them admit me.
Luckily she somehow made it home but didn’t know how to open the garage door and had to summon a neighbor to get her in. That was the first of several incidents with the car that were early signs that something was very wrong. However because we were virtually tied at the hip and together 24/7 we were able to manage our lives pretty well. She began forgetting things like simple cooking skills and where things normally belonged around the house and then progressed to being unable to play the games that we normally played with our friends.
The tiles in Rummikub became impossible for her to understand the sequences and patterns needed to play. She could no longer understand the dice game Farkle and she was well beyond being able to play Bridge! Eventually she began to think we were living in her mother’s house and would constantly want to get out of there which entailed us going for drives almost every day. She wanted to know where her mother was who had died in 1998.
Only later did I discover how bad it was for me to take her to her mother’s grave to show her that her mother was no longer alive. (Once I entered group therapy and individual therapy I was told that each time I brought her to her mom’s grave I was putting her through the agony of her mom’s death because she couldn’t remember from one time to the next that her mom was gone even if I showed her multiple times in one day!)
Finding a support group
As symptoms worsened I began to feel more and more isolated and frustrated. I didn’t know what to do so I just did more of the same. We would go on drives every day and frequent the same candy stores and yogurt shops and restaurants but I knew things had to change so I insisted that we seek counseling. We enlisted a therapist and went multiple times but it was not helping our situation only further leading me to the understanding that I needed help if I was going to help her in any meaningful way.
My sister had been begging me to attend the Alzheimer’s support group she was cofacilitating but I had been reluctant to go because it would necessitate my wife and I being in separate rooms and I knew she would never consent to that arrangement. But as it became increasingly evident that the individual therapy we were doing was not helping I told my wife that we had to at least give my sister’s group a chance because I needed someone to talk to about all the feelings I was having in the hopes we could get some help dealing with our increasingly deteriorating situation.
She finally agreed to give it a try.
The first session we attended she balked at going into the room separate from me where those suffering the symptoms met (she was not acknowledging that she had a problem at this time.) My sister took her by the hand and accompanied her into the back room and stayed with her until she decided she would no longer stay there. So my sister and she moved to a separate room where they talked for the remaining time I was in the my group.
When they had gone into the back room I was left sitting among a group of total strangers with no idea what was about to happen. The facilitator turned to me and asked me what was going on in our lives and I immediately began sobbing and for the next 45 minutes between sobs explained to the group my feelings of despair and hopelessness and anger! The incredible reaction of every member of the group was nonjudgmental support delivered with compassion, empathy and total understanding of what I was feeling and expressing.
The love and concern I felt in that room from total strangers gave me hope that maybe I had found a place where I could get the necessary support and learn the necessary tools to navigate the tortuous journey that was at hand. These people pulled no punches. They didn’t sugarcoat what we were facing nor where it was inevitably going but what they did do was immediately and totally embraced me and lifted me up. By the time the meeting ended I was a full-fledged member of the group and had been given a list of 5 things they encouraged me to do before I returned the next week.
They were:
- Check my long term care policy to see how to implement it.
- Check out agencies to hire respite caregivers
- Begin researching long term care facility options
- Make sure my powers of attorney were in order
- Call the local nonprofit agency that offers support and services.
Putting the group’s advice into practice
When I returned the next week to group they asked for a report on my progress and I had completed four of the five items. They had put me on a path to accomplish real steps necessary to deal with what was coming. If you are facing this journey finding a local support group of people who are on this same journey at various stages is invaluable because they will not only give you emotional and physical support but they will provide you valuable tips they have discovered and used themselves on the journey!
One such powerful tip was the acronym ARC which stands for Don’t argue with, Don’t try to reason with, and Don’t criticize your loved one. None of these behaviors work with them in the diminished intellectual state they are in. Rather you should try to deflect their anxious moments by changing the subject and you should get used to what is called therapeutic lying. For example when my wife would ask to see her mother I would no longer tell her that her mom was dead but rather simply tell her that she was with her sister on an extended cruise and would not return for many months!
I was fortunate that my older son and his wife were living in town at the time and he would come and take his mom to coffee so I could continue attending the weekly group meetings even though she was not willing to participate in the group designed for her. I fully understand that everyone’s situation is different and that mine doesn’t necessarily fit what you will be facing but the likelihood is that if you join a support group there will be people in it who have experience with circumstances similar to yours and they will be able to give you suggestions and tips that will be invaluable!
I refer to my group as a group of extraordinary ordinary people banding together to confront this awful devasting disease and help each other come through the journey with the least possible damage to their health and their psyche! We have doctors, lawyers, jewelers, cab drivers, teachers, veterans dealing with mothers, fathers, husbands, siblings, spouses and friends. There are members who have already lost their loved ones and those who are caring for them at home and those who have placed their loved ones in a care facility!
We run the full gamut of occupations, religions, beliefs, ethnicities and life experiences but we are all one in this community of caring and loving human beings joined by a common pain determined to bring our better angels to one another and to those we are walking this journey with. Our group is open to anyone who needs help. You only need to walk through the door and take a seat and we will surround you with our love.
For those of you seeking such a group in your own community call the Alzheimer’s Association in your area and ask them where such a group meets close to you.
There is so much more to share with you concerning my personal journey and information that might be helpful to you and I will try to do so in the next post but in the meantime don’t wait to reach out to your local agencies and if the person you are walking this journey with is a veteran reach out immediately to the VA and enlist their support. They have valuable resources that every veteran has earned and should take advantage of! Until next time may you be surrounded by the peace and love of all those you encounter and please feel free to reach out to me if you have a question you think I might be able to answer or even if you simple need to talk to someone who understands your pain and the journey you are on.
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