This has been a rough week. Betty’s health had been continually getting worse. My visits with her, and even Gini’s far more frequent visits, became more and more just sitting with her while she slept. The nursing home staff said that she no longer went “visiting” to all the other residents, and they called us early last week to let us know that we should be prepared for her passing. Gini’s sister Linda was called, and she immediately flew down. She and Gini sat with Betty every day, until we got the call last Friday morning that she was gone.
I know this is supposed to be my blog, but I think the words of my wife as she sat with her mother last week say it better than I could:
Mom came to live with us in Texas on Aug 15, 2015. Since then dementia has run its course. Her healthy body has been very healthy, but her diminished memory has been turning different functions off like switches. She began hospice in late November, 2018, and began living at Bishop Davies Nursing Center on Feb 1, 2019. She was given access to almost every room in the facility (as are all residents), shouts of “I love you, Elizabeth!” came from staff from time to time as she paddled by in her wheel chair (there were already three other Betty’s there, so we stayed with Elizabeth). Her routine has been full on activity for about three days followed by 18 or so hours of bedrest. And boy, were those feet busy. At meal times she would finish her full plate of pureed food and then go snatch sandwiches from another’s plate before she could be caught.
Last week she started taking long cat naps in her chair and not bouncing back as fast. Very early Monday, the Nursing Center called to say that her condition has considerably diminished.
Mom is resting comfortably today. On Monday she ate all her carrots and some other food, on Tuesday she ate half of her carrots and not much else. Yesterday my sister, Linda Hartnett, arrived and Mom put on her stubborn self, I think she was showing off for all the people in the room, and closed her lips as hard as she could to keep us from helping her with swallows of supper and water. The morphine was started yesterday, and yesterday and today she has had a fever of about 99 degrees, which is really high for her whose temperature is normally around 97 and a half. She is breathing comfortably, no labored breathing, no coughing, just peaceful. So it could be days, weeks, or just a few hours. So we sit with her, wait with her, I sing to her sometimes, and love on her. She is often reminded how much her children love her, and yesterday and the day before she smiled at that. She is not even opening her eyes today so these are the hardest days. And I know it’s even harder for family that cannot be here.
Sorry for the novella asking simply for prayer and peace in passing. She knows whose she is and has been given permission to go. Heaven, watch out! I know she loves Jesus, but she’s a fiesty one!
Betty and Me
Gini and I have been married a little over 24 years, and for most of that time, her mother was a peripheral person in my life. She was “up there” in New York, and Gini and I visited from time to time. She seemed to like me well enough, and I her; but to say we “knew” each other would probably be a stretch. That all changed when Gini’s family in New York called and asked us if we could have Betty come live with us because of issues caused by her steadily encroaching dementia.
Early in our marriage, Gini and I discussed what we would do if the need ever arose for one of our parents to come live with us. We both agreed that doing so was part of God’s instructions to honor our parents, and that we would do all we could to make it happen.
So, Betty came to live with us. In the beginning of this arrangement, Betty was still “there” mentally most of the time. One of my favorite stories happened the weekend Gini’s sister Linda came down to help her move in. Linda and Gini were shopping for stuff she would need for her room, and I told Betty she and I could run get ice cream instead of waiting in the parking lot.
We took off to McDonald’s, and when she got there, she asked if we needed to buy for them. I told her no, they were shopping. Then she said we’d need to eat them fast, so we wouldn’t eat in front of them. I told her nonsense, that was going to be half the fun. She laughed like a kid when we teased them about us having ice cream and them not getting any.
Buying her ice cream sandwiches became a regular thing at home, and would always make her smile; even when the dementia was at its worse. In the later days, no matter how “lost” she seemed that day, we would go through a regular routine:
Me I accidentally grabbed too many ice cream sandwiches, I wonder what I should do with the extra one. (Betty would grin and look at me). I would offer it to you, but I know you don’t like ice cream.
Betty (somewhat scornfully) Oh, I do too!!
Me Oh, that’s right, it’s chocolate you don’t like, and these have chocolate on the outside.
Betty I love chocolate! You know that!
Me Well then, maybe I need to give it to you then
And she would smile ear to ear.
Mom & Gini
That pretty much exemplified my relationship with my wife’s parent who was reverting back to childhood in front of us. I got to be the playful one that could get her to smile, and sometimes help her remember. My wife was stuck with the painful job of being the dutiful daughter who bathed her, helped her change clothes, made sure she had something to eat, and took care of the Mom that was effectively turning into a child.
That’s the double horror of dementia and Alzheimer’s. Both the individual and the family are victims.
For the family, it turns the once-strong and independent parent (or grandmother, aunt, cousin, sibling) into a different person; one who is dependent, needy, and far too often demanding and difficult to live with. Gini remembered a mother who raised six children, volunteered for years with her local fire department, and did all of the things needed to keep together a working-class family through difficult times. Now she had to care for a child in an adult body who often viewed her daughter as a stranger, frequently didn’t understand where she was, and asked sadly for family members who she didn’t understand had died decades earlier.
For the individual, I can only imagine the nightmare that they live through; and I mean that literally. I’ve often related it to a recurring dream that I have (and I’m sure others do as well), where you wake up in a strange place, and you look around and realize that you don’t know anyone in the room. For me, that’s a bad dream where I wake up, hug my wife, and go back to sleep knowing it was a bad dream and all is right with the world. For the victims of dementia, it’s a bad dream where you wake briefly (at times), then return to the bad dream and the strangers in the room.
Because I wasn’t the one that had to deal with those issues, I viewed it all from a more dispassionate vantage. I never really knew the strong woman that my wife remembered. I didn’t have the memories of her taking care of me as a child, and now suffering the nightmare of having to care for as a child. While I know that my wife accepted this as a way of honoring her mother, I also knew how deeply it hurt her to have to live through it. Though I had a “head knowledge” of that, I lacked the experience to really understand it deep in my heart. People would often comment on how both Gini and I were doing a great thing by caring for her, but the truth is that Gini was the saint in all of this. I was the outsider that could make Betty smile and sometimes remember; Gini was the daughter that ignored the heartache and did what was needed for her mother-come-child.
The Ultimate Healing
When the end came, it came shockingly fast. In early February, Gini and I had a church retreat to attend. In the past, when we went somewhere that we couldn’t take Betty, we had someone come stay with her, or left her with friends. This time, Gini made arrangements to take her to a facility that provided “respite care” for a few days at a time. Unbeknownst to me, when Gini went to the interview to set things up, talk turned to making this a more permanent arrangement. The weekend respite care became a trial run to see if Betty would be as comfortable there as in our home, and it would give Gini the chance to make a choice on whether or not she wanted to make it a permanent move. (You can read about that at Betty’s New Home)
Gini told me later how that weekend was such a relief to her; not only to not have to provide the care for her mother, but to not have to worry about how things were going with the person caring for Betty. It gave her the freedom to really enjoy the weekend retreat we were attending. Frankly, at first I had a hard time coming to terms with that. In my mind, it was still our duty to continue to care for her. But the more I thought about it, the more I came to realize, it was Gini that was really carrying the major portion of burden, and I was simply tagging along as the comic relief. In the days that followed, I saw my wife finally in a position to enjoy the presence of her mother in her last days, instead of carrying the weight of being her caretaker.
The nursing facility was only a couple of miles from our home, and literally around the corner from Gini’s work, so we both were able to visit with her regularly. My daughters came from time to time with the grandkids, and Betty truly did seem as happy there as she was at our home.
Gini and I brought ice cream sandwiches when we visited, and they still made her smile. But little by little, it became apparent she was taking the treats from what she thought of as strangers. One of the best visits (for me) was one of my last. I brought our granddaughter Ava (who had helped care for Betty when she was still in our home) for a visit. I found Betty in the lobby, and said hi. I could see it on her face that she had no idea who I was. But then I said “Ava came to visit with you”, and her face lit up. She smiled ear to ear, and her face seemed to beam. That’s the happy memory that I will hold – her brief wakening from the nightmare she was living, when she recognized the great-grand daughter she had come to love.
A few days after that, we got the news from the nursing home that Betty was becoming less and less responsive, and that we should make preparations. As mentioned before, Gini’s sister came down, and they waited with Betty as she drifted from the nightmare she was living into the freedom that death was to become.
I believe in the ultimate healing of our Savior. I believe that Betty is now fully healed, and that the steady nightmare of the last few months of her life have been replaced with a new awakening. I’m grateful for the time she spent with us. Grateful that it taught me the depth of the love that my wife has for family. Grateful that I was able to contribute in some small way to honoring the woman that contributed to family that I have today.
The week we spent in New York for her funeral reintroduced me to Gini’s side of the family that I had met before, and newly introduced me to friends and extended family that I had not. It also gave me a insight to the reach of Betty’s life, with dozens of extended family, fire officials, and local residents coming in. Ironically, the funeral was the week before my family’s annual weekend reunion. We literally went from the airport to the house, loaded up the SUV and drove to Oklahoma for the reunion.
The fun and fellowship of the reunion immediately following the bittersweet time with Gini’s side of the family gave me time to consider all that is involved with family. The ups and downs, the conflicts and resolutions. As I watched my kids, grandkids, siblings, and nieces and nephews all having a blast, and also all telling us how much they missed seeing “Grandma Betty” caused me to reflect on all of this. Family is important. Next to my faith in my God, it is the most important to me. Watching the “new” family members joyously living life makes saying goodbye to others so much more bearable. I’m grateful for that.