Shrinking Worlds III

 I said before it is a hard thing to watch a parent in decline.

I’ve written twice before about the shrinking world of my mother as she aged. As I recall the first one we had been out on a walk along a trail that she enjoyed after she had moved in with my wife and myself. There were nearly daily walks for a couple of years and then they tapered off. it seems that as they did so, she also lost her ability to go the distance. One day she was unable to make it all the way back to the truck, and I had to leave her on the sidewalk sitting in the grass while the dog and I ran the mile back to the truck to come and retrieve her. 

The second time I noticed this, she had gone for a “walk around the block“. After she’s been gone an hour, I went looking for her and found her about a mile away and still moving away from the house. I didn’t want to embarrass her, so I drove past, around the block and came back, and when I had done so she had reversed her direction and was headed toward the house. After another hour, I went looking and found her about a block away, and looking at street times. She was obviously lost, but I asked her if she knew where she was, and she said “I’m just making sure.“

Then she became hospitalized with a serious UTI. After a week’s stay in the hospital on IV antibiotics she was discharged into the care of a hospice service. 

Over the next 14 months or so, she continued to slowly decline. Decline with dementia is horrible. There are gradual decreases followed by sudden drops in the ability to function. There were several of these over the last year. Then six weeks ago one day there was a sudden decline far greater than any of the others.  She was no longer able to speak clearly and her voice was very weak. Her ability to stand or to walk even a couple of steps had gone. 

Also during the last few months prior to this, she was increasingly living in the past. At night she would ask about the cattle having enough hay and if they were being taken care of. These cattle were sold off in the early 1960s. She would ask if there was anyone “staying at that cold farm house” (where she grew up). She would ask when her father would come to pick her up (he died in 1975). She looked at my wife, then at me, and asked “What you doing running around with that tart?” My father and I share a first name and look more alike as I get older. He died in 2005.

We continued to take care of her for another three weeks, but it was becoming impossible. Her needs had increased to the point that we could no longer meet them safely. I finally made the decision to move mom to a nursing home in the town where my sisters live. I also made the decision not to tell her ahead of time. There really would not have been any point as her ability to remember was almost nil. 

When it was time to go, we called  911 and asked for a nonemergency lift assist. In these cases, paramedics will come out and assist with getting someone out of the house and into a car, or vice versa. The drive to the nursing home took about 90 minutes and it was conducted in near silence. Mom spent most of her time looking out the window or leaning over as she seemed to have lost ability to hold herself up. 

My brother-in-law is a paramedic and met us at the nursing home. While I went inside to deal with paperwork, he spent some time visiting with mom. When I talked to him later, he said he thought she had suffered a stroke sometime in the previous three weeks or possibly a series of small strokes. 

For a week, mom stayed at the nursing home and was visited by my sisters at least twice a day. Her grandchildren also were able to come by a number of times. They knew that they were saying goodbye. This continued for a few days and then mom asked when she was getting out of there. I don’t know what my sister said to her. No doubt she deflected the question. The following week mom took another downturn. She was refusing to eat very much or even drink her shakes. She spent most of her time sleeping. Finally, the second Friday of her stay, she experienced what appeared to be a seizure, but it was really just a period of shaking really hard enough to make the bed move. The nurses were called and they administered the prescribed medication which calmed her down for a few hours. The second time it happened she slipped into unconsciousness and never woke.

We made it to the nursing home about 10 a.m. the next day.  Mom was unconscious.  Her breathing was labored.  We settled in for the vigil. 

The entire family was there. We spent most of the time talking quietly or in silence, sharing in the comfort of each other‘s company. I spend most of the time praying that my mother would stop breathing. Even with the comfort medication she seemed to have great difficulty.  

The hospice nurse said that people near death and unconscious are still able to sense the people around them. She said that this often prolong the amount of time that the dying person will hang onto life. I spent some of the time watching a timer on my Garmin and counting her breaths. She varied between six and 15 per minute over period of several hours.

At one point, a few of us slipped out to get a bite to eat and then come back. While at dinner, I got a text message stating that the nurse thought that the time was near. We grabbed our food to go cleared the check and made it back to the nursing home. As we entered the room, she began breathing more rapidly again. Finally about 10 o’clock that night my wife and I had to go home to take care of animals. About 4 AM my phone rang and the nurse told me that she had passed.

I had written before about the shrinking of the world of the elderly. Mom‘s world shrank from driving to see her daughter’s grandchildren to just going into town to the store to barely doing that. When she moved in with us, we took the keys to the car, so it shrank even more. At that point though, she said she did not want to drive anymore. That was a good decision on her part. At that point her world shrink to as far as she could walk and at first, that was a mile in one direction and then back or down the trail and back. And then one day she couldn’t make it back. At that point, she limited herself to going down the patio, but then she didn’t like the stairs. Then she was only on the deck and eventually not even that. I suppose that is the way it is for all who age into senescence , and I suppose someday I will find out. I know that we did what we could for her and feel very privileged that we were able to do so. But still, it is a hard thing to watch a parent die. 

https://www.foxfuneralhomecolecampmo.com/obituary/mary-harris

A Bridge Too Far and Waking Ned Devine

I said it before: It’s a hard thing to watch a parent in decline. It doesn’t get easier and there is no respite. At times I feel I’m living on the ragged edge.

It isn’t just physical frailty, though that has continued. We completely stopped the walks, whether around the block or on the walking paths over a year ago. There were too many times she couldn’t make it back to the car. Falls are becoming increasingly common. There is a walker, which she didn’t want to use, but now doesn’t go anywhere without. Her bed was removed and replaced with a hospital bed. There is a bedside commode due to the risk of fall should she go to the bathroom in the middle of the night.

Decline is more than that. It is a decremental loss of the person you knew. In this case dementia is a part of that. It is insidious, slowly robbing the afflicted of the most basic of memories. Mom has said several times when she thinks of home she pictures the farm where she grew up.  She has no memory of the place in Cole Camp and thought that it had been sold (It hasn’t and is not for sale.).  No real memory of living in North Carolina. Recently the pastor from Cole Camp called and spoke with her.  Mom didn’t really talk, I don’t think she knew who it was.  The Ladies Aide (or whatever it is called) from the church sent her a care package and all signed the card.  Mom looked at it and said she had no idea who they were.  She recognized some of the names, but couldn’t put a face to them.

Last summer Mom was on the deck enjoying the sunshine.  She had a puzzled look about her so I asked what was troubling her.  “My daughters are Stella and Hester…right?” I waited a few moments before replying to see if she would correct herself.  “And Leslie,” I replied.  She looked a bit confused and then nodded. I don’t know if she remembered or merely took my word for it.

In February, Mom was hospitalized for a few days due to a severe infection and medication reaction.  It was an ordeal.  She was discharged into routine hospice care.  This is apparently for the elderly when death is not imminent. Since then family has visited her more often. Increased visits revealed more memory problems. She has difficulty remembering who her grandchildren are when they are here. The older granddaughters seem to take it in stride. However, the much younger grandson (13) seemed hurt when she asked “who are you?” She has always confused granddaughters with daughters and that has continued.

Routine seems to be the best thing for her.  She has almost completely stopped eating solid food, in favor of relying on Boost shakes.  Which is fine, as long as she is taking in calories, and they are full of those. She can only do the simplest of daily care activities (get dressed, toilet, brushing teeth). Hospice came with nurse aides which assist with bathing.  I shudder to think of Mom trying to use the shower on her own. Certainly that would end with an ambulance ride and a relocation to a nursing home.

Days are spend re-reading the same books over and over: Sharpe’s Rifles series, Agatha Christie, P.G. Wodehouse, Tolkien.  Wash, rinse, and repeat.  These books are all very familiar to her, I wonder if she is actually reading skipping about the pages? I know she’s been on page 100 for a time and then on page 20. In the morning she carries a half dozen books to the living room. At night she carries the same half dozen back, and perhaps more.  She says she’s reading them, but that doesn’t happen. In the evening she’ll decide she’s going to her room and when she does, she puts on a movie.  Invariably she’ll go through her DVDs almost one at a time.  “Oh, that’s a good one!” She says pointing to Patton. “That one’s good too!” (A Bridge Too Far). She goes through them all. Her favorite is Waking Ned Devine. More often that not, she’ll choose one of these films or a DVD of  Jeeves and Wooster or Rumpole and settle in for the night. She has literally watched these dozens of times, particularly A Bridge Too Far and Waking Ned Devine.

I don’t know when she sleeps. She complains of tiredness during the day, but we can hear the television at night. I’ve particularly come to detest the British comedy “Are You Being Served?” Absolutely hate it. More often than not, this is what is playing when me and my wife rise in the morning.  The DVD will be on the title screen on repeat. Yes, Mom is sleeping, but I don’t see how she can possibly be resting.

She has become far more emotionally labile than in the past. I don’t know whether sadness or despair, but suddenly bursting into tears in the evening happens more and more frequently.  Especially since we brought her home from the hospital. I’ll tell her we’re just trying to take care of her and not to worry about things and it happens. I mask my own feeling so as to not burden her further. Or she’ll look at a picture of her deceased grandson and cry.

Mom’s world continues to shrink. Where she used to go down on the patio in the summer, she changed to staying on the deck. She’s afraid of the stairs.  Last summer, the boundary shrank further and she only went on the deck two or three times. It was either too hot or too cold. Though not exactly homebound, she makes no effort and expresses no desire to leave.  When asked if she’d like to go out, she’s pretty adamant about staying home. 

My wife and I are constantly exhausted. It isn’t physically hard, but it is emotionally draining. Nothing can be done about this, it just has to be borne. We do what we can for the people in our lives. It’s called family.

Shrinking worlds

It's a hard thing to watch a parent in decline. 

Physical failing, cognitive decline, disturbed sleep patterns, forgetfulness, bad decisions.

Two years ago we took my mother in. She had been living on the family homestead, out from town in the Ozarks.  Several months prior the well pump gave out.  That was not so surprising, it had lasted forty years.  I went ahead and replaced it.  The first week of February, 2018, I was driving to a work site in Texas and thinking to myself the next thing to go would be the furnace.  The next day, my sister calls me. "Mom doesn't have any heat." One of my sisters went and got her. A couple weeks later we had the family intervention and she (and her Australian Shepherd) came to live with me and soon to be wife. 

Mom was pretty angry for a time, though this improved as we moved in more and more of her stuff. I managed to get her to the eye doctor as she couldn’t see to read or the television. Her glasses were trashed and she had severe cataracts. Naturally cataract surgery was refused. “I don’t want to go borrowing trouble.” Fortunately the eye doc told her she could no longer drive. It took a year to get her to agree to getting that fixed.

A number of years prior to coming to stay with us, she had briefly been taking medicines to slow the progression of arthritis. She was non-compliant with the medication and follow-up visits. At that time I am not certain whether stubbornness or forgetfulness was the primary factor in this. We suggested on several occasions, when she was in pain, that she could see a doctor much easier here than back home.

Typically she’d reply with some irritation

“I had a doctor tell me the best thing you can take is aspirin!”

“When was that Mom? 1960?”

“Well...yes!”

Reason is not always effective in dealing with a declining parent. We did get her to start taking some arthritis medication, but it took a middle of the night fall and ER trip for stitches to make it happen. The good thing about the fall, is that she did see a doctor. In the year’s time she stayed with us she’d gained 20 pounds. Apparently she’d been forgetting to eat.

After our father died fifteen years ago, Mom went back to work for a short time. Eventually she retired completely and spent time on the homestead. She was well known for taking the dogs for long country walks. Almost daily, as long as it was not raining or icing. Walking became somewhat incorporated into our days here, though somewhat limited as both I and my wife work. Fortunately my hours are rather flexible. Last March, with the spread of COVID-19, both our employers sent us home to work. This has been a very good thing for us. It has allowed the walks to continue more regularly. However, over the last year the distances involved have become increasingly short. Yesterday, we went from the trail head to the waterfalls and were going to walk back to the truck. Mom couldn’t make it back, with only a quarter mile left. The pain was just too much. I had to have her sit down and run for the truck, drive around and pick her up (we live in a small city near a military installation, it’s pretty safe). After a couple hours sitting at home, she appeared mostly recovered.

 The long walks appear to be a thing of the past for Mom. I know that will be a hard thing. As we age, our world shrinks. We simply do not stray far from home. Mom had stopped driving even as far as the nearest WalMart (like 20 minutes away) because it was "too far." It occurred to me that her world had just become that much smaller.