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Posts Tagged ‘nursing home’


This has been a long time coming.

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My Wedding Reception in 2001

Long, long ago (so it seems) in this here galaxy, I began to notice that my mom began faking it. While talking on the phone she stopped answering questions with any detail. I began to get very short answers that were excruciatingly vague. Things like “It was good.” “It was okay.” And really long pauses. I knew something was up. Shortly after this she was diagnosed with Alzheimer’s.

When we visited she would obsess with where the kids played as if they would do serious damage to their manufactured home with their toys. The next year my kids didn’t go inside, but if they got within 20 feet of the road she got worried. The fear she had hidden for so long (and so well I didn’t know about it) had taken over as her ability to control it was gone.

When she didn’t recognize me I didn’t realize how much it affected me. I mean, how can a mom forget her kid? But that is what this disease does. I had visited while we were on vacation. For the rest of that vacation (and beyond) little things set me off. I had so much anger and didn’t put the pieces together. It is so obvious now, but it wasn’t then. Grief seems so difficult for me because I grew up on a family that seemed to avoid grief. Ain’t nobody got no time for dat grief.

From afar I watched my dad care for her. It was like he was a different man- a better man. The first time we’d visited my parents after getting married, they began to bicker about how to put the growlers of beer I brought in the fridge. CavWife’s experience with them was VERY limited (she married me on faith!). “Oh, they’re kinda like the Costanzas,” I said. That changed after his heart stent. They realized the party would eventually end.

While Alzheimer’s brought out the not so good in her, it brought out the best in him. He was so patient with her. I think the right parent got Alzheimer’s. As the disease progressed, he struggled with when to put her into a nursing home. When I’d visit I was his friend, not her son. Her hallucinations were ordinary- her little brothers in the other room. Unlike other people with Alzheimer’s I knew there were no little friends hiding by your feet. But then she largely stopped talking.

Caring for her was tiring. He was always on duty because she’d get up in the middle of the night and try to flush the adult diaper, flooding the bathroom. But, understandably, he had trouble entrusting her into someone else’s care. The doctor and his staff would say she was ready. He wasn’t. For some reason I remember one of those conversations with him during the Red Sox 2013 World Series run. I was driving home from a hospital visit and the Sox game was on the radio. Yet, the timing is off. Odd how the memory can work.

Hanging Up PosterI remember starting to watch Hanging Up with Meg Ryan, Diane Keaton and Lisa Kudrow one Saturday afternoon during this period. Pre-plastic surgery Meg Ryan. When Meg’s character put her father (Walter Matthau) in a nursing home I completely lost it. I had to hang up, so to speak, on the movie. The kids didn’t need to come downstairs to find their father in a pool of tears and snot because he was watching a movie. This would be one in a long series of grief stuffing moments to come.

She wouldn’t end up in a nursing home until the fall of 2017. Those were 4 long years of visits when I was on vacation. I had started going alone, initially because I wasn’t sure how the kids would react to her declining condition and inability to understand why she didn’t talk to them or know who they were. But I went because I knew my father needed me to be there. It was hard to be so far away, but it was obviously so much harder on my father.

I struggled with guilt, false guilt. He wanted me to move closer. I thought about moving closer. There was a big church nearby looking for a pastor. The fact they had a woman as the interim pastor was a big clue to me that I would not be their first, or 30th, choice. Most of the churches that would be a fit were small. I was nearing 50 and a pay cut combined with a higher cost of living didn’t seem wise. I also knew myself, once she died I’d want to get out of the cold and snow. There’s a reason I’ve lived in Florida and Arizona for the last 30 years.

While the disease initially seemed to proceed quickly it seemed to have stalled. She was still mobile. My father was thinking about financial realities. Their long-term disability insurance would cover about 2-3 years of care and he was trying to maximize it. He hung on as long as he could because he loved her. Visits were with my father while she was the quiet spectator. We’d go to lunch and he’d order for her knowing what she’d like based on 50+ years of experience. At the house the Game Show Network would be on since she couldn’t follow a plot. The crosswords and Suduko she loved to do were put away. Soon the mirrors were covered because she’d yell at the old woman who was following her.

Eventually he couldn’t do it any more. She could get angry. I experienced that a few times when my attempts to be kind and convey warmth were misunderstood (or perhaps that squeeze on the shoulder was stronger than I realized), and there it was. It was sort of like Gollum fighting over his precious. And he lived with that 24/7. It got to be too much.

Going into the nursing home didn’t start well. She wandered into someone else’s room. When the care giver tried to lead her to her own room a fight erupted. I laughed out loud thinking about my 80+ year-old mom punching someone in a fist fight, but she was sent to the hospital. And my father was crushed. He wondered if he’d done the right thing (he did!). He didn’t want her sedated all the time. But sedated she was, and they backed it off to the minimal level necessary.

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Summer of 2018

It is hard to face the good and the bad of my mother. My parents didn’t talk about their childhood. She was the oldest of 8, having 7 brothers. Her father was not in good health (he died when I was 4 or 5. She was likely engaged in child-rearing at a very young age. She was likely robbed of a childhood and adultified.

Her ethos, shared with a Mormon missionary at the door when I was older, was “do your best.” I think she did, but I suspect she didn’t have all we might want in a mother. She loved me as best she could, I don’t deny that. Yet I found myself “adopting” other moms to supplement, never realizing what was really going on until many years later while in a counseling program. I began to sort through some of this as I read books like The Mom Factor. I learned the phrase “good enough mom.”

“For one, she was my mother. Who knew her better than me? Who knew her stories? Her triumphs and losses? Who knew what she had overcome? Who knew her great loves and dreams? I did…” Mike Glenn in Coffee with Mom

I read the above and thought … I don’t know those things. So much was hidden, undisclosed. She was shut up tighter than a house ready for a cold New England winter. I knew her from my experience with her, but I didn’t know her experience. I feel like a man trying to put together a jigsaw puzzle with more than a few pieces gone.

She got her nursing degree but was quickly married and having children. I’m not sure she had a firm sense of herself apart from raising kids. For a time she worked at the hospital, as an operator not a nurse. But when I was in middle school she began to watch kids for teachers at the school down the road. She’d do this until they moved to California.

She confused me at times. She taught me to save. But in round about ways. She made me save for driver’s ed. So, I put aside money from my paper route, mowing lawns and shoveling drive ways. I saved the money and took the course, which she then proceeded to paid for. She hid her motives at times, but when you are a teenager it was very frustrating.

I shouldn’t have been surprised. When I was young (5 or so) her mother gave me $5 for my birthday (that was quite a bit in 1970). While going somewhere my mom stopped to get gas. My grandmother said I should offer to pay for the gas with my birthday money. That didn’t make sense to my young, greedy, selfish self. “Don’t you think I’d give you more?” was her reply. Confusing. And my mom could be the same way. Life was a series of tests of my character.

We didn’t talk about emotions aside from the admonition to not to get so angry. Like many in her generation, she couldn’t really go there. As a result, I wasn’t sure how to go there and didn’t really grasp that it was an issue until a girlfriend got angry with my obvious struggle to empathize with her own loss. I’m not making excuses, but she loved me (us) as best she could.

When I graduated from high school we all went out for dinner. I think she had a tad too much wine because for the one and only time she mentioned she had miscarried a daughter. In talking with one of my brothers later, he indicated they knew something had happened but not what it was. The timing was shortly before I was conceived. This had to be incredibly painful for her. She had only brothers, and give birth to only boys. It was a wound she didn’t share, wouldn’t share and probably couldn’t share. When I had a daughter, she was filled with joy. They made a trip to Florida in order to meet their granddaughter. But I was left with the sense of “I wasn’t supposed to be here, someone else was.”

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With the first grandchild.

When I moved to Florida in 1991, my parents moved to California for a job. She’d never lived more than 40 minutes from where she grew up. That decade in California was hard for her. They lived in 3 different cities for 3 different jobs until my dad retired early. He loved southern California, but with the birth of the first grandson she wanted to move back.

I visited them a few times while they were in California. The only of their 3 children to do so. They flew me out twice. They were generous toward me in many ways. During a few times I lived at home post-college she kept a mini-fridge in the basement family room stocked with Bud and Sipps (still a joke with one of my old friends). When my car died while I was in seminary, a check arrived so I could buy a used car another student was selling. I borrowed money to buy my next car. There was a loan when I was in between pastoral calls and under-employed. They showed their love through gifts like the money I needed to buy an engagement ring, and a new washer & dryer when we moved to AZ.

I also extended a work trip for Ligonier to spend some time with them. But those trips were also hard. It was like I was still a kid (Let’s do the time warp again!). She had a hard time hearing my ‘no’. This sounds stupid, but I didn’t want her to do my laundry. I was an adult for the love of Pete. But she’d do it anyway. She did it out of love, but I felt disrespected and treated like a child. I struggled with that. It was like a time machine, and I wasn’t liking it. She struggled with boundaries.

They traveled to New Hampshire in September 2001 to look for a new home as a result of that grandson. They were originally booked to fly back to Los Angeles from Boston on 9/11 but decided to stay longer. I got the gift of two more decades of my parents as a result. I had also learned to accept my parents’ limitations better. I was learning to love them better instead of demanding that they be the parents I wanted instead of the parents I actually had.

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2011 by the source of the joke that bombed.

She had a strange sense of humor. Like many teens I wanted a car for my 16th birthday. So she got me a matchbox car. That’s okay when your 16. But when you’re 6 or 3, not so much. After we moved to Tucson they came to visit us. During that visit we put in a swing set. While I was working on it, and my kids excited about it, she told them it wasn’t for them but for other kids. They were confused, and hurt. I have to be careful that my sense of humor doesn’t hurt the ones I love. She loved them, but didn’t always know how to show it.

I guess that is how I process my experience with my mother. She loved me, but didn’t always know how to show it appropriately.

Loving someone with Alzheimer’s is difficult. It is like they are gone, but they aren’t. You feel like you should grieve, but there they are. Sort of. When I visited her in 2018, I tried to use my phone to show her pictures of her grand kids and AZ. She took the phone and studied it as if it was something new and strange. To her it was. On a later visit she largely ignored me and my brother, wandered the common area and straightened just about everything. As my dad noted at the time, she always kept a clean house. This was a remnant of who she was. The woman I knew was there, but not there. And I was no one to her.

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Summer of 2019

You struggle with wanting her to live and also wanting her suffering to end. You know there is likely a high level of fear in there precisely because they don’t understand much of what is happening. There are also the realities of the physical decline, the inability to do what you used to do for yourself. She had become like a child in many ways. Add to that what you see your father enduring. You become seriously conflicted.

I had hoped to visit after Christmas. But it just kept snowing and I’m 30 years removed from regularly driving in ice and snow. The journey from my in-laws to my parents goes thru Vermont and Killington ski area, not a place I want to drive right after a winter storm. I was also struggling with plantar fasciitis in my right foot. A 4-hour drive would be incredibly painful.

A niece was heading to NH to visit her brother and I could have gone along. But it was during my daughter’s birthday which I didn’t want to miss. I also had that flu/cold going through the family. I made what I thought was a wise decision. While my niece was in NH my mother collapsed and ended up on the hospital. I wished I could be there for my father. It was likely the result of a virus, but after a hospice consultation she was approved for hospice care. Another mile marker.

While I wasn’t physically there, my dad and I had a long over-due conversation about her care. CavWife and I had talked about this over our anniversary lunch a few days earlier. I didn’t want a repeat of his delay in putting her into a nursing home. She met the markers for hospice care, and they could provide him with experience and wisdom in questions of appropriate care based on her terminal disease. It also helped him with out of pocket expenses. This was a win even though she could live much longer.

She seemed to bounce back. She was eating again, and with her walker make it to the dining area. She was talking more than she had in quite some time. It didn’t make any sense but she was verbal.

A few weeks later she walked to breakfast and all seemed fine. While he was visiting something suddenly seemed wrong to him. She suddenly seemed unable to walk, and any sign of recognition of my father vanished. He wondered it her knee was giving her trouble again. But then he discovered she couldn’t use her right arm. She’d had a stroke. Everything changed.

And so I travel home tomorrow. I might make it in time to say goodbye. I might not. She hasn’t been eating and drinking. Her breathing has finally become labored. Flights are harder to come by last minute these days. I want to go, and don’t want to go. My inner conflict continues.

 

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