Some thoughts on the road's end
I didn't get many Christmas cards out this year. Didn't do a letter either. I'm sorry about that. Here's what happened.
Less than a week before Christmas, my in-laws reached a crisis point that signaled the end of their independent lives and the beginning of ongoing nursing care. I want to recount the journey to that crisis point. I apologize for the length of this. I need to get it out of my head. I need to document this because my in-laws are wonderful people who have reached the end of their independent lives and I want you to know what it was like.
The crisis had been building for some time. We knew something was going to happen to push this forward. Indeed, Merle and Catherine are where we wanted them to be but their journey there was so abrupt and terrible sounding, it actually made people laugh when I recounted it. We tried to get ahead of what was coming but the desire to let Merle and Catherine continue to live at home combined with their determination to stay at home entirely on their terms caught up and overran us all in the end.
Over the last year, Catherine’s dementia has been getting worse and Merle has begun to show signs of it too. It was becoming clear that neither of them could bathe; the old claw foot tubs were too hard to get in and out of. We suggested getting a plumber to put in a shower. They didn’t want it. Catherine couldn’t really cook any longer. Janet would bring food but they often wouldn’t eat it. Last spring Merle was robbed by a crooked handyman. I wouldn’t call him a con man. He wasn’t clever at all. He just realized Merle had a lot of money in the bank and would give him as much as he asked for. Their neighbors chased him off. My in-laws had fantastic neighbors. They brought meals over, helped getting the garbage cans out, shoveled the walks and generally kept an eye on them. By August Merle was having trouble paying bills. He just couldn’t remember they had to be paid on time and couldn’t really separate them from the dozens of junk charity letters they’d get. Even Catherine was getting concerned. We didn’t realize he had completely stopped paying them until October when their phone was disconnected. Janet took over the bills. Janet had been doing heroic work for her parents over the last couple years. She mowed the lawn. She brought them food. She took them to doctors appointments. We began to understand that the volume of work others were doing for them was going past the point of reasonable but they were very resistant to having any professional help.
In September they totaled their car pulling out of their church parking lot. They were amazingly unhurt. Two days after the wreck, before we could have a discussion about driving, Merle had bought a new car. He paid cash.
When I write this out, we sound like the worst kids in the world for not stepping in sooner.
You have to understand this was a very slow emergency and they were putting a lot of effort into looking like they had it all under control. We all lower the bar as we get older. We slow down. We cook less. The driving starts to get dodgy at night. All those little functional declines pile up but it’s hard to pick one that tips the scale from independent living to assisted care to full on nursing home. And we had stepped in; especially Janet. She took over a lot they were having trouble with. We all encouraged them to get more structured help but they kept saying "no". At what point do you, can you, ignore those wishes? How do you ignore them? Then there was the speed of their decline. It was only between April and November that the conversation shifted from “we really need to convince them to do Meals on Wheels” to “I think the Meals on Wheels ship as sailed. This can’t go on.”
Somewhere in that time window Catherine began having night terrors, an extension of “sundowning”; increased anger and anxiety at the end of the day. It's a common symptom of dementia sufferers. She was prone to outbursts and Merle was on the receiving end of most of them. When we’d talk to Merle, we begged him to let us know when she was too hard to take care of. He was never going to do that, of course. By November it was clear they were falling a lot.
In early December the shoe finally dropped. Catherine fell at night and Merle couldn’t get her up. An ambulance was called. They didn’t call Janet until the next morning. Catherine was really agitated and even pulled out her IV at one point. The hospital was leaning toward moving her to assisted care straight from there. Carolyn flew east on the 8th to help her sister deal with things.
Catherine pulled herself together by morning and managed to get discharged right when Carolyn got back. Carolyn and Janet stayed with them for a few nights and it was clear things were bad. Falling was inevitable. Catherine wouldn’t sleep in their bed. Merle realized the falling was going to get worse and agreed that it was time to look at assisted care. He had been a Freemason for over 60 years and they have a large, highly regarded assisted living community in Utica, a little over an hour from where they lived. Janet and Carolyn made arrangements to tour the facility with them the following week. On Sunday they all went to church and Merle announced to the congregation that they both had Alzheimer’s and after half a century with that church it was time to say goodbye and go to a nursing home, which kind of brought the sermon to a screeching halt. Their pastor, in a brilliant pivot, turned the sermon into a celebration for the Merle and Catherine that was so lovely both Janet and Carolyn were in tears. Even Catherine seemed OK in the moment with going.
Wednesday the 13th they loaded the car and headed out in the snow to Utica. The arctic freeze had settled in and temperatures were in the single digits. At a thruway rest stop about 15 miles from Utica they stopped for a bathroom break and within 30 seconds of each other both Merle and Catherine fell down. Carolyn was with Merle and without warning his legs went out from under him. His glasses cut his brow and he was bleeding like crazy. People swarmed around them and Carolyn couldn’t see her sister who was with their mother who was also on the ground. The police came. Ambulances were called. Following an MRI, Merle seemed ok beyond the cut but Catherine had broken her femur. She was checked into the hospital in Utica just a few blocks from the Masonic home they were on the way to visit.
Their accident happened at the “Little Falls” service area. You can’t make this stuff up.
Carolyn’s cousin Henry lives just south of Utica so they stayed with him while Catherine went in to surgery. Henry’s wife Anne is a retired nurse. They were both godsends. Catherine’s surgery went well and the hospital had outpatient relations with the Masonic home so Catherine was checked in to the rehab wing there; her broken leg letting her bypass the otherwise complicated admission process. Merle, Carolyn and Janet went back to Waterford to get Catherine some clothes and to figure out what to do next.
They had a couple nights back home. Then over dinner Merle lost the use of his left arm. 911 was called. Again. By now the text stream I was getting from Carolyn was filled with emergency rooms and ambulance tail lights and the most depressing emoji strings you could imagine. Doctors thought he had a micro stroke and that might have been why he fell. This was on the 16th. I got a red eye on the 17th and finally arrived in Albany the morning of the 18th with just enough time to grab a shower, change clothes and jump in the car with Carolyn and Janet to head to the Troy hospital to pick up Merle to drive him to Utica. Anne had intervened with the admission director there and they shuffled a few beds around and found space for him.
Merle was in good spirits but I couldn’t help feeling sad seeing him looking out the window and knowing he was never going home again. Both of them had left their home of sixty some years not knowing they would never see it again.
There were no bathroom stops on the trip to Utica. They were waiting for us. Merle was checked in and immediately swarmed with doctors and case workers and best of all, the lady who took his dinner order. I spent most of that afternoon with Catherine. She’s always thought the best of me - more than I deserve. We always found time to talk away from the rest of the family. She seemed OK but displaced. She was convinced she was fine and could go home. She kept forgetting her leg was broken. In the weeks that followed she would keep packing up her clothes and making Merle call Janet to bring them home.
We stayed at Henry and Anne’s that night. They do Christmas proud at their house. You can hardly move with all the decorations and you wouldn’t want it any other way. Carolyn slept well for the first time in a week. It snowed that night and old upstate NY was as pretty as a postcard.
The next day I drove downstate to spend Christmas with my family. My sister, after 30 years at Oregon Shakespeare Festival, resigned from her position there to move back to NY to be closer to home and mom. She, Maddie and Mallory’s cat Tony arrived at 7am Christmas Eve. Tony has decided NY suits his 15 year old bones. Mom has heated floors. We woke up to 5” of snow Christmas morning.
Carolyn and Janet went back to Utica and spent Christmas at Henry and Anne’s. They went up to the Masonic home with the grand kids and visited with Merle and Catherine. That night Merle went back to the hospital with severe abdominal pains. They couldn’t find anything wrong and sent him back. A few days later the Masonic home x-rayed him and discovered he had several broken ribs. I’m amazed that two hospitals missed that. I’m heartbroken knowing how much ambient pain Merle must live with. So much that he wouldn’t notice broken ribs.
In some ways the final injuries were a blessing. There was no second guessing whether this was the right decision or not. Neither can climb stairs now. Their home in Waterford, which I have referred to repeatedly as “a machine for killing old people” is nothing but stairs. They are both way past the point of independent living. The Masonic Home is an outstanding facility staffed with patient, caring people. It's not independent living so at a basic level, it's not what they want but Merle at least understands why this is necessary. Merle’s mind is going fast though he’s in amazingly good spirits. Maybe because he was able to name it before it took him, I think it makes it easier to find joy in the moment. He was always good at that. I don’t think he has much time left with us. He’ll be 95 in March and the last few years have been hard on him. I think he’s OK with that. Catherine’s road I’m afraid is going to go on for a bit. We’re hopeful she finds some space there to be happy but the person I’ve known for over 30 years is being overwritten by a lesser version of herself that’s confused, angrier, and has lost much of the past and the idea of the future. She still recognizes us and she thinks the world of me, which I will always be grateful for. I'm sorry this will just get worse and this Catherine will soon be overwritten by even less of that self as the slow destruction of her mind continues.
What do endings look like? Last October we packed off the last boxes of my Grandmother’s possessions in mom’s garage; five years after grandma passed away. That might have been as much of an ending to her life’s journey as any; that echo of possessions that persists after a loved one is gone. Certainly something has come to an end in Merle and Catherine's lives. But my in-laws are by no means gone. There is still more to share with them and more life to lead. To quote Joe Strummer “The future is unwritten.” There will be trips to the Masonic home and the opportunity to tell our parents we love them and hopefully, some laughter too. No, I’m certain there will be laughter. Even in the worst moments of the past months, there was laughter. Some of it was admittedly hysterical laughter, but a lot was honest - “can you believe that just happened?”- shared humor in the moment. When Carolyn read this, she thought it made it sound worse than it was. I'm sure that's because I wasn't there laughing with them in various ERs.
There will also be peace
of mind knowing they are cared for. Janet and Carolyn have a lot to do,
disposing of their parents’ assets to pay for that care. Merle and Catherine’s
life journey will continue on for some years and I suppose any “ending” will be
years after they are both gone as the last boxes are sent to Goodwill.
I’m having trouble bringing this to a conclusion, maybe because there isn’t one yet. That will be later.
Less than a week before Christmas, my in-laws reached a crisis point that signaled the end of their independent lives and the beginning of ongoing nursing care. I want to recount the journey to that crisis point. I apologize for the length of this. I need to get it out of my head. I need to document this because my in-laws are wonderful people who have reached the end of their independent lives and I want you to know what it was like.
The crisis had been building for some time. We knew something was going to happen to push this forward. Indeed, Merle and Catherine are where we wanted them to be but their journey there was so abrupt and terrible sounding, it actually made people laugh when I recounted it. We tried to get ahead of what was coming but the desire to let Merle and Catherine continue to live at home combined with their determination to stay at home entirely on their terms caught up and overran us all in the end.
Over the last year, Catherine’s dementia has been getting worse and Merle has begun to show signs of it too. It was becoming clear that neither of them could bathe; the old claw foot tubs were too hard to get in and out of. We suggested getting a plumber to put in a shower. They didn’t want it. Catherine couldn’t really cook any longer. Janet would bring food but they often wouldn’t eat it. Last spring Merle was robbed by a crooked handyman. I wouldn’t call him a con man. He wasn’t clever at all. He just realized Merle had a lot of money in the bank and would give him as much as he asked for. Their neighbors chased him off. My in-laws had fantastic neighbors. They brought meals over, helped getting the garbage cans out, shoveled the walks and generally kept an eye on them. By August Merle was having trouble paying bills. He just couldn’t remember they had to be paid on time and couldn’t really separate them from the dozens of junk charity letters they’d get. Even Catherine was getting concerned. We didn’t realize he had completely stopped paying them until October when their phone was disconnected. Janet took over the bills. Janet had been doing heroic work for her parents over the last couple years. She mowed the lawn. She brought them food. She took them to doctors appointments. We began to understand that the volume of work others were doing for them was going past the point of reasonable but they were very resistant to having any professional help.
In September they totaled their car pulling out of their church parking lot. They were amazingly unhurt. Two days after the wreck, before we could have a discussion about driving, Merle had bought a new car. He paid cash.
When I write this out, we sound like the worst kids in the world for not stepping in sooner.
You have to understand this was a very slow emergency and they were putting a lot of effort into looking like they had it all under control. We all lower the bar as we get older. We slow down. We cook less. The driving starts to get dodgy at night. All those little functional declines pile up but it’s hard to pick one that tips the scale from independent living to assisted care to full on nursing home. And we had stepped in; especially Janet. She took over a lot they were having trouble with. We all encouraged them to get more structured help but they kept saying "no". At what point do you, can you, ignore those wishes? How do you ignore them? Then there was the speed of their decline. It was only between April and November that the conversation shifted from “we really need to convince them to do Meals on Wheels” to “I think the Meals on Wheels ship as sailed. This can’t go on.”
Somewhere in that time window Catherine began having night terrors, an extension of “sundowning”; increased anger and anxiety at the end of the day. It's a common symptom of dementia sufferers. She was prone to outbursts and Merle was on the receiving end of most of them. When we’d talk to Merle, we begged him to let us know when she was too hard to take care of. He was never going to do that, of course. By November it was clear they were falling a lot.
In early December the shoe finally dropped. Catherine fell at night and Merle couldn’t get her up. An ambulance was called. They didn’t call Janet until the next morning. Catherine was really agitated and even pulled out her IV at one point. The hospital was leaning toward moving her to assisted care straight from there. Carolyn flew east on the 8th to help her sister deal with things.
Catherine pulled herself together by morning and managed to get discharged right when Carolyn got back. Carolyn and Janet stayed with them for a few nights and it was clear things were bad. Falling was inevitable. Catherine wouldn’t sleep in their bed. Merle realized the falling was going to get worse and agreed that it was time to look at assisted care. He had been a Freemason for over 60 years and they have a large, highly regarded assisted living community in Utica, a little over an hour from where they lived. Janet and Carolyn made arrangements to tour the facility with them the following week. On Sunday they all went to church and Merle announced to the congregation that they both had Alzheimer’s and after half a century with that church it was time to say goodbye and go to a nursing home, which kind of brought the sermon to a screeching halt. Their pastor, in a brilliant pivot, turned the sermon into a celebration for the Merle and Catherine that was so lovely both Janet and Carolyn were in tears. Even Catherine seemed OK in the moment with going.
Wednesday the 13th they loaded the car and headed out in the snow to Utica. The arctic freeze had settled in and temperatures were in the single digits. At a thruway rest stop about 15 miles from Utica they stopped for a bathroom break and within 30 seconds of each other both Merle and Catherine fell down. Carolyn was with Merle and without warning his legs went out from under him. His glasses cut his brow and he was bleeding like crazy. People swarmed around them and Carolyn couldn’t see her sister who was with their mother who was also on the ground. The police came. Ambulances were called. Following an MRI, Merle seemed ok beyond the cut but Catherine had broken her femur. She was checked into the hospital in Utica just a few blocks from the Masonic home they were on the way to visit.
Their accident happened at the “Little Falls” service area. You can’t make this stuff up.
Carolyn’s cousin Henry lives just south of Utica so they stayed with him while Catherine went in to surgery. Henry’s wife Anne is a retired nurse. They were both godsends. Catherine’s surgery went well and the hospital had outpatient relations with the Masonic home so Catherine was checked in to the rehab wing there; her broken leg letting her bypass the otherwise complicated admission process. Merle, Carolyn and Janet went back to Waterford to get Catherine some clothes and to figure out what to do next.
They had a couple nights back home. Then over dinner Merle lost the use of his left arm. 911 was called. Again. By now the text stream I was getting from Carolyn was filled with emergency rooms and ambulance tail lights and the most depressing emoji strings you could imagine. Doctors thought he had a micro stroke and that might have been why he fell. This was on the 16th. I got a red eye on the 17th and finally arrived in Albany the morning of the 18th with just enough time to grab a shower, change clothes and jump in the car with Carolyn and Janet to head to the Troy hospital to pick up Merle to drive him to Utica. Anne had intervened with the admission director there and they shuffled a few beds around and found space for him.
Merle was in good spirits but I couldn’t help feeling sad seeing him looking out the window and knowing he was never going home again. Both of them had left their home of sixty some years not knowing they would never see it again.
 |
| Merle getting checked in |
There were no bathroom stops on the trip to Utica. They were waiting for us. Merle was checked in and immediately swarmed with doctors and case workers and best of all, the lady who took his dinner order. I spent most of that afternoon with Catherine. She’s always thought the best of me - more than I deserve. We always found time to talk away from the rest of the family. She seemed OK but displaced. She was convinced she was fine and could go home. She kept forgetting her leg was broken. In the weeks that followed she would keep packing up her clothes and making Merle call Janet to bring them home.
We stayed at Henry and Anne’s that night. They do Christmas proud at their house. You can hardly move with all the decorations and you wouldn’t want it any other way. Carolyn slept well for the first time in a week. It snowed that night and old upstate NY was as pretty as a postcard.
The next day I drove downstate to spend Christmas with my family. My sister, after 30 years at Oregon Shakespeare Festival, resigned from her position there to move back to NY to be closer to home and mom. She, Maddie and Mallory’s cat Tony arrived at 7am Christmas Eve. Tony has decided NY suits his 15 year old bones. Mom has heated floors. We woke up to 5” of snow Christmas morning.
Carolyn and Janet went back to Utica and spent Christmas at Henry and Anne’s. They went up to the Masonic home with the grand kids and visited with Merle and Catherine. That night Merle went back to the hospital with severe abdominal pains. They couldn’t find anything wrong and sent him back. A few days later the Masonic home x-rayed him and discovered he had several broken ribs. I’m amazed that two hospitals missed that. I’m heartbroken knowing how much ambient pain Merle must live with. So much that he wouldn’t notice broken ribs.
In some ways the final injuries were a blessing. There was no second guessing whether this was the right decision or not. Neither can climb stairs now. Their home in Waterford, which I have referred to repeatedly as “a machine for killing old people” is nothing but stairs. They are both way past the point of independent living. The Masonic Home is an outstanding facility staffed with patient, caring people. It's not independent living so at a basic level, it's not what they want but Merle at least understands why this is necessary. Merle’s mind is going fast though he’s in amazingly good spirits. Maybe because he was able to name it before it took him, I think it makes it easier to find joy in the moment. He was always good at that. I don’t think he has much time left with us. He’ll be 95 in March and the last few years have been hard on him. I think he’s OK with that. Catherine’s road I’m afraid is going to go on for a bit. We’re hopeful she finds some space there to be happy but the person I’ve known for over 30 years is being overwritten by a lesser version of herself that’s confused, angrier, and has lost much of the past and the idea of the future. She still recognizes us and she thinks the world of me, which I will always be grateful for. I'm sorry this will just get worse and this Catherine will soon be overwritten by even less of that self as the slow destruction of her mind continues.
What do endings look like? Last October we packed off the last boxes of my Grandmother’s possessions in mom’s garage; five years after grandma passed away. That might have been as much of an ending to her life’s journey as any; that echo of possessions that persists after a loved one is gone. Certainly something has come to an end in Merle and Catherine's lives. But my in-laws are by no means gone. There is still more to share with them and more life to lead. To quote Joe Strummer “The future is unwritten.” There will be trips to the Masonic home and the opportunity to tell our parents we love them and hopefully, some laughter too. No, I’m certain there will be laughter. Even in the worst moments of the past months, there was laughter. Some of it was admittedly hysterical laughter, but a lot was honest - “can you believe that just happened?”- shared humor in the moment. When Carolyn read this, she thought it made it sound worse than it was. I'm sure that's because I wasn't there laughing with them in various ERs.
 |
| Janet and Merle at the Utica ER |
I’m having trouble bringing this to a conclusion, maybe because there isn’t one yet. That will be later.
Comments
Jody let me know of your blog and I am amazed at what I've just read. I'm sending you both (and both of your families) my prayers. After my mom passed in 2007, I moved my dad (he's now 94) into an independent living apartment here in Portland in 2014. He's moved from there several times and is now in a great assisted living studio but unable to walk - his legs kept giving out as well. I've been through some of what you both have recently experienced, but nothing like the fast transition you've just gone through! Nobody prepares us for these situations and I've learned so much about the aging process from both my parents.
I applaud you both for stepping up - it's not an easy path.
Take care, Kelly Z.