Jill McGaffigan

To Whom It May Concern:

I was so surprised to receive the nomination for the “Caregiver of the Year” award by your committee!  It is difficult to express my appreciation to you and to those who submitted my name because I have never expected or thought about recognition.  I am full of joy and satisfaction simply by seeing Susan Pate smile each day.  My goal is to keep her safe, at peace, and happy.  My hope is that I provide dignified, respectful and safe care for Susan by constantly keeping in mind that this situation could just as likely have been reversed.  That truth helps me to think about how I would want to be treated in each situation and attempt to treat Susan in the same way.  Even though her behavior has progressively become more childlike, I work hard not to respond to her as her behavior warrants.  I try to use soothing, loving, and encouraging words spoken tenderly but not with a condescending or scolding tone. The fact is that she isn’t like a toddler because she is not going to learn and behave differently the next time just because I have reprimanded her.  Susan was diagnosed with early onset Alzheimer’s at age 55 and, therefore, she honestly cannot help her behavior and it is only going to deteriorate with time.  It is my responsibility to accept her reality and help Susan to live each day with as much joy as is possible.  I have promoted physical, social, and mental interaction with Susan differently as her disease has progressed.  Seven years ago, we regularly walked together since Susan has always enjoyed walking.  Lake Hollingsworth, BOK Tower Garden, and Circle B Bar Reserve were several of her favorite places to walk and we visited them often. I also took her with me to shop for our groceries, clothing, or Christmas gifts. We both enjoy finding a deal so we would go hunting down the best we could find at Goodwill or Salvation Army. I always took her with me to bridal and baby showers as well as to any party involving our church or circle of friends. Since our husbands work for the same company, we also attended work social events together. For one such event, I recall finding the cutest formal dress for Susan at Goodwill and we only paid $8!  We were both thrilled.  Susan has also been volunteering for one of our friends who owns a store.  The work and time spent in the store setting seems to have helped Susan feel needed and has also kept her involved with the outside world.  When she could no longer drive herself, I began taking her for her volunteer hours. She still goes periodically for an hour or so but her ability to help in that setting is fast dwindling.  Also, we have always worked jigsaw puzzles together and often played Scrabble so those are games that we initially continued.  We had to quit Scrabble about 5 years ago, but we still work at puzzles at some level.

When Susan and I used to sit around and drink coffee or travel together, we enjoyed cross-stitching and she always had a crochet project in the works.  A year or two before Susan’s diagnosis, she had quit both and neither her husband, Tommy, nor I could understand why she quit these activities she loved so much! About two years after her diagnosis, I realized why. She simply could not follow the patterns anymore!  So, I had a friend of mine teach me to crochet. Then, I put a hook in Susan’s hand and told her I was going to teach her to crochet. As soon as I began, she knew exactly what to do.  I was amazed.  And, although she could only manage one stitch and certainly could not follow a pattern, I believe it engaged her mind in a way that was good for her and she has made dozens of adorable baby blankets that we have given away. This has obviously brought Susan great satisfaction.  At present, that ability is quickly leaving her.

Soon after Susan’s diagnosis, it really became apparent that a true conversation was not possible.  So, the way that we shared dialog was for me to listen to her tell her stories, repeatedly, and I would respond in a conversational manner by feeding her information I already knew about her, her family, and her life. She would often get the details of her own stories wrong.  Early on, I would correct her until I learned that it did not do any good.  Correcting my friend only made her feel badly, often confused her, and she usually shut down her conversation.  When I accepted that it simply did not matter if the details were correct then I think the conversations were better therapy for Susan.  I could listen and respond and the rhythm and flow was calming for her. I also found that when I spoke positive statements to Susan in response to anything negative then she would eventually begin to repeat the phrases.

Susan and I have often traveled together. We are both from NC and we both have family there.  Sometimes, we would make our rounds to several relatives and other times we simply went to my family mountain house and relaxed together.  In a fairly short amount of time, I realized the need to take someone else with me on these trips as my caregiving responsibilities became weightier and Susan was less able to do things like go to the restroom herself in a restaurant or be left alone anywhere. Taking someone with me ensured Susan’s safety and my mental well-being as I had someone to share the load and to converse with when Susan was napping or asleep at night.

The way that I have balanced my needs with the needs of Susan is by having regular, open, honest dialog with her husband, my husband, my closest friends, and the Lord. I have also been transparent with friends about my needs and they have jumped in to help whenever necessary. I have tried to remain as available as possible because I want Susan to have the care of someone who knows her well and loves her deeply.

I also wanted to see Tommy survive her illness and be able to live a quality life now and in the future. Tommy and I attended several seminars at the onset of Susan’s diagnosis and one of the many things I learned is that so many caregivers who are spouses or children end up with a dramatically shortened life due to the stress.

My husband, Andy, and I agreed that we wanted to support our friends as they see this through and we realized from the beginning that this is just for a season of our lives. We are able to sacrifice some of our freedom right now to make ourselves available for Tommy and for Susan.  Soon after Susan’s diagnosis 7 years ago, we formed a dinner group to meet at the Pate’s home on a weekly basis.  It began as 4 couples and has morphed over the years due to death, moves, and illness. But, a group still meets weekly at the Pate’s for dinner. We knew this would be important initially for Susan and Tommy to feel connected and supported.  Later, it was obviously for Tommy’s sake that we continued.

This same group used to take a fall trip to my NC mountain house to have a respite from the daily schedule. We no longer go with the husbands because it just doesn’t do much to help Tommy’s stress level anymore. We also attend church together and, since this is the most important aspect of our lives, we go to most events together so that Tommy can be free to mingle and I can help Susan to have some normalcy in that setting. Our church family has been part of Susan and Tommy’s care since the beginning. Before full-time care was required, I organized a group of ladies who could give a few hours a week to hang out with Susan. We had a weekly schedule set up in which someone was there from when Susan awoke from her nap around 2pm until around 6pm which is when Tommy usually got home from work. Later, we increased the times to include a morning shift. At the height of need before the step to full time care was required, we had over 20 women involved in this outreach to Susan. I think the concept of this group care for Susan made a huge difference in both Tommy’s and my mental health. We have all received awesome support from our friends and our church!

At the time that I began taking care of Susan 3 years ago, my workdays were 8-10 hours on Monday - Friday and a few hours on Saturday. The weeks of respite care for Tommy added significant hours, of course. But, at that time, Susan was still able to be involved in many daily activities. I was responsible for the grocery shopping and meal prep but Susan was able to help me in the kitchen. I was responsible for the laundry but mostly as oversight as Susan could fold and put away the clothes herself. As Susan’s mental health has declined, she is no longer interested in these activities and is incapable of performing simple tasks. With the help of my daughter who teaches pre-school, we now have a few sorting activities that Susan can do that seem to help her feel like she is productive, they certainly keep her mind engaged. We still work on puzzles; I have had to pull out the ones that have become too difficult and cause frustration rather that enjoyment. I have learned the parts of Susan’s favorite puzzles that are just too challenging; I discreetly put those pieces in place for her. Some of the puzzles have difficult frames and I have taped those edge pieces together to alleviate any frustration for Susan. These techniques seem to keep her happy and engaged. To illustrate the change in my dear friend, I now spend 12 hours daily with Susan on Monday - Saturday. My hours can easily jump from the normal 72 weekly to 130 plus (and those extra hours are volunteered) when we travel somewhere to give Tommy the space he needs to stay healthy. I now bathe Susan, help her with her personal care, choose her clothing, and guide her through her daily activities. She cannot converse and most words of instruction are not comprehended. We listen to Christian radio while working puzzles, riding in the car, running errands, or working with our sorting games. She knows almost ALL of the words...even to the new songs...it is amazing! Susan remains happy, healthy, and busy most of her days and this makes us both smile!

As I mentioned earlier, Tommy and I attended a few seminars early on in this journey in order to educate ourselves. One important thing we learned is that the bigger the disease gets the less time the primary caregiver needs to spend with the care-recipient. The emotional strain is just that intense!  So, I have always been committed to helping Tommy stay healthy by giving him respite care, as needed. Tommy told me at the onset that respite for him was better done at home.  In other words, it was better for him if I took Susan somewhere for a week rather than him leaving for a week. Initially, Susan and I would simply take a trip together to the North Carolina mountains once a month. As time has progressed, it was not always possible to drive all the way to NC as often as respite was needed for Tommy’s care. We have several mutual friends who have helped out by offering their homes as a place that Susan and I could hang out for a few days at a time. We have been able to drive 2 hours to a friend’s home and settle in for a few days. It has been wonderful to be able to be around a good friend while giving Tommy time alone at home. Other times, when it was not convenient to go to my good friend’s house, another dear friend across town has let us stay with her.  She has graciously opened her home up as a place Susan and I could stay for as long as needed. We simply pack up what is needed and have the freedom to come and go at Betty’s house. These friends as well as Tommy and Susan’s daughter in St. Augustine, Lela, have all been places Susan and I could comfortably go for anywhere from a few days to a week at a time. We go as needed by Tommy but has recently been a 4-5 days every two weeks.

Tommy and I have been aware from the beginning of the awful diagnosis that there will likely come a time when Susan will need to be placed in a care facility. We both feel that it is best that she stay in her own home as long as we are all able to handle her care. And, Tommy has put in place the appropriate legal documents so that I would step up as her primary caregiver if something were to happen to him before Susan’s passing. But, we both understand that it is better to make a decision about a care facility before reaching the moment of need. Tommy invited me to join him in that process of checking out the options. We have made a decision and it has given us a settled feeling to know what steps we will take, when necessary.

Thank you for allowing me to share our daily lives with you. It is such a humbling and precious experience to be considered for this award and, regardless of the outcome, I have been blessed by the nomination.

Yours truly,

Jill McGaffigan