Thoughts on life

I stood alone early this morning on top of a parking structure to experience the lunar eclipse, and record photos of the event. I wondered how many thousands of people slept through the eclipse, not even aware that it was happening.

Most people seem to avoid real life experiences. That amazes me. We are only given this one life to live. The goal should be to take in as much of this life as possible, to experience all the joy, and even the pain, that makes this life worth living.

Do you ever stop and just smell the world in the morning? The fragrance of flowers and grass and tree blossoms?

Have you ever stopped to listen to the sounds around you—the birds singing, and the insects humming to warm up for the day?

Do you ever take note of your own breathing, and the marvel that we don’t have to think about taking the next breath? Or find a place so quiet you can hear your heart beat?

A friend stopped by to visit last week. She was puzzled that we had no television in the room. Hers is always on, even when she is trying to talk on the phone. I don’t know why she needs the noise every hour of every day.

My wife left her first husband because all he wanted to do was stay home and watch TV. At least that was what she told me. 

She wanted to go down to the ocean and play in the surf. She wanted to drive through the tunnel tree in Yosemite Park. She wanted to hike up the Mist Trail and get soaked by the spray of Vernal Falls in the spring. She wanted to peer down into the Grand Canyon. She wanted to dance all night and into the morning.

So did I. We did all that, and more.

We were made for each other.

Even with the devastation of Alzheimer’s, we still find moments to enjoy just being together and holding hands and laughing and crying together as the mood strikes us.

When this life is over we will go with few regrets. We have tried to fill our lives with all the experiences and joy we could imagine.

So many people will leave this life with only memories of TV shows and movie plots they watched at home. Seems to me that is living someone else’s life, and not your own. 

It’s not too late. Isn’t there something outside the house you have always wished you could do? There will never be a better time. In this life there are no do overs. No second chances. 

Now is the time. Get out there and live your own life!

        

I left her asleep in bed...

As I walked into Carolyn’s room this morning my heart sank. Here we go again. Another day like yesterday.

The clues were right there in front of me. The blanket on the couch told me that the staff had moved her since I put her to bed across the room last night. But the covers were hanging off the couch, the pillow was on the floor, and she wasn’t there.

She was lying across the arms of the rocking chair, asleep. I don’t know if she intended to end up in that chair, or just toppled into it trying to walk by. She woke up immediately, and smiled when she saw me. She was ready to be rescued again!

I carefully lifted her legs and back, and pivoted her into a normal sitting position in the rocking chair. It is a light chair, with bent wood bows on each side, and a seat that suspends you like a hammock. It is very comfortable, and it is hard to get out of, too, I decided leaving her there might be a good idea.

She fell back to sleep in a minute, as I straightened her room, and got out a book to read. Today she was obviously very sleepy, unlike yesterday. The difference was so stark that I got to wondering if she didn’t take the medicines yesterday, but slid them to one side in her mouth and spit them out later. I don’t know that, but today the meds were in obvious effect.

She didn’t have the restlessness today at all. When she woke up, she made a halfhearted attempt to get up from that chair, but unlike the wheel chair this one won’t roll backwards and dump her on the floor. The arms just push down, the chair rocks forward, and if you really want to get up, a lot more effort is necessary. She never wanted to expend the extra effort, so she just sat back down and went back to sleep.

I wish I had thought of this chair yesterday. She stayed in the chair, and when she wanted to go somewhere, she would tell me, and I would put her in the wheelchair and take her. She went to the bathroom three times today, and we did two laps around the hallways. It was raining lightly outside, or I would have taken a tour of the sidewalks and parking lot, as we did yesterday.

I brought her lunch in her room, and she ate most of it. The mac and cheese went down nicely, she ate a little of the spinach, but it was kind of hard chewing for her. The vanilla pudding bowl was scraped clean.

I took her into the dining room for dinner, and sat beside her to help if necessary and prevent her from trying to stand. She ate the dessert first, as usual. I tell her it’s OK, she has lived long enough that the rules for kiddies don’t apply any longer. 

Actually, that may not have been dessert. It was peach slices with cottage cheese, which she loves, but probably would be called the salad. They had ice cream for the dessert. The main course was egg salad sandwiches and potato chips. She ate half the chips, took two bites out of the sandwich, said it was good, but she was full. 

She may have just gotten sleepy again, but I took her to the room, sat her on the toilet, which paid off, and then I tucked her into bed for the night. I told her I was leaving now and would be back in the morning, and she smiled and kissed me, and was snoring before I got across the room to turn off the light.

What a difference a day makes!

Last night I had another idea pop into my head I’m going to try in the future. As the disease has progressed, I have watched her memories and attitude go backwards through the years before we were married, back through the years she was a shy, bashful teenager who didn’t want me in the room while bathing or changing clothes. 

Now she acts very much as a small child or toddler, and I’m wondering if maybe I might throw a blanket on the floor, put her down on the blanket, and sit down beside her to see what the reaction would be. Can’t fall if you are already on the floor, right? I am curious if she can get back up, how long it would take her to climb up and get dangerous to herself again, or if she would even try. It would not be a restraint in any fashion that I can see, but if it doesn’t upset her it might be a way for me to leave the room for a few seconds.

Tomorrow I’ll be talking to Rachel, the administrator, about her ideas on giving Carolyn the care that she is beginning to need as her dementia takes away her most basic ability to care for herself. She saved me when I first came to Durant. She knew just the right people to call and cure Carolyn of the hostility and paranoia that put her in an assisted care facility in the first place.

I love this place and so does Carolyn, but as circumstances change, maybe it is time to consider other options with more people on hand for the constant care that she is beginning to need.

However, if she was always as calm as she was today, I could handle that forever. I’d love to, in fact.

As I was posting this, I just got a call that she fell again, and her head hurts. They are calling x-ray. I'm outta here!

She's back!

I am just beat! I need to go to bed and rest, but my nerves won’t settle down. I tried reading, but my comprehension is nil. I can’t concentrate on the words, because my mind is whirling away elsewhere. This has been one of the hardest days yet since Carolyn broke her pelvis.

The drugs she has been taking, which kept her in bed and asleep for much of the time are no longer working. She has evidently developed a tolerance for them. All day long she has wanted to get up and walk somewhere. It has been a constant battle to get her to stay in her chair. 

It was a warm, if windy, day outside so I took her out for a stroll in the parking lot. She liked that, but it lasts only so long. I put her in bed, and she rolls out and tries to walk away. I caught her twice before she hit the floor. I parked her in her wheelchair facing me as I sat on the couch. She stood up and tried to crawl over my lap.

The one bright spot was when Leon, the Guardian Chaplain came by and we talked about religions, philosophies, and a little about how I’m doing in the caregiver role. Carolyn actually slept through that, even if she talked in her sleep most of the time.

Shortly after Leon left, I needed to use the restroom, so I parked Carolyn in her wheelchair facing the side of her bed and locked one wheel, hoping if she tried to get up, she would have to climb up on her bed first. As I just got comfortable in the bathroom, I heard a loud crash on the other side of the wall, and I had no doubt what had happened.

Pulling up my pants, I rushed into the living room. Carolyn was in a sitting position on the floor next to the wheelchair, which was on its side folded up, leaning on the rocking chair. After I got her up on the bed, and asked her if she hurt, and after looking for abrasions and contusions, I gave her a stern lecture in my best “Dutch Uncle” voice, just as you would to a small child. I have every expectation that it will be about as effective as lecturing a small child, too. She seemed more mad than sorry, for sure.

I’m at my wit’s end trying to figure out how to keep her from falling again. If it was just a balance problem, one of those wheeled walkers with handbrakes would be fine, but many if not most of her falls in the past have been either from epileptic seizures or Alzheimer’s related neurological glitches that render her unconscious before she falls. A walker wouldn’t help that.

After visualizing her in a harness hooked to the ceiling, or wrapped head to toe in bubble wrap, I am about out of ideas. Restraints on the wheelchair are forbidden, but I did visualize a board under her legs to keep her feet off the floor. Might work, but probably against OSHA regs, too. And, of course, I can see her scooting herself forward until the whole rig topples over forward.

Is the standard end for an Alzheimer’s patient a fall with a broken hip or skull, and then shortly after that they die? I hate the thought of that. My goal has been to get her to the end in as little pain and sorrow as possible.

I’m running out of ideas here.

NRA and ICE

I am very disappointed in the NRA. Years ago I was a Libertarian, and was a firm believer in the Second Amendment. I knew it was not about citizen rights for hunting, or target practice. It was about defending ourselves from a government that became tyrannical, and no longer followed the will of the majority of its citizens. The Second Amendment was the one that guaranteed all the others, like a free press, or the right to assemble, or the right to print the news without censorship.

Well, where are you, NRA? Our government is attacking the free press, and touting “news” that is totally pro-government propaganda. They are shooting street protesters, beating them with clubs, arresting them just for standing there, and smashing cameras of reporters who are trying to cover the protest.

Worst of all, they are instituting the same ugly policies against “undesirables” that Nazi Germany did eighty years ago. They are shooting unarmed people with impunity, just as the SS did. They are deporting thousands of people every day, without a whimper from our NRA “patriots.” 

“Law and order” you say? When Hitler did it he did it legally also. He also got laws passed to prevent a path to citizenship for Jews in Germany. But we’re not sending them to death camps, are we? Neither did Hitler, at least not so you’d notice. He told the Germans that they were just deporting them “to the East”. He didn’t tell anybody about the death camps in Poland. We are not being told of the people who are being killed in Mexico, Honduras, San Salvador and Nicaragua, either.

So if you think that Americans would never allow something to happen in the United States like happened in Germany back then, don’t kid yourselves. The Nazis are back, waving their flags, spewing their hate, and American citizens, NRA “patriots”, good Christians all, just like the Germans, are doing the same thing the German population did. They are either cowering in the woods with their weapons, or helping the government by turning in their neighbors.

You do remember that Anne Frank was turned in by a neighbor just doing her patriotic duty, don’t you? We have to uphold the law, we can’t provide cover and sanctuary to those the government wants to deport, can we? 

We are no worse and no better than the Germans eighty years ago. We are the same.

 “ We have met the enemy, and it is us!”

Happiness

What is happiness? For me today, the answer has become much simpler.

Happiness is is watching my wife sleep comfortably, her heart rate and respiration normal, no seizures, and hearing from the nurse that she ate breakfast this morning, able to bite and swallow her food again.

Whatever went on Saturday seems to have passed for now. I don’t know how long now lasts, but I am treasuring every moment.

Her drug regimen consists of Haldol and Tramadol twice a day, and everything else only as needed. Those are Ativan, and Respertal, to reduce restlessness and insomnia.

She is not experiencing nearly as much pain when we have to move her, so maybe the pelvic fracture is healing. 

I didn’t sleep well last night. I couldn’t put her out of my mind. But now I have an opportunity to relax and maybe get a morning nap in her room this morning.

Did I say how happy I am today?

It's Not Funny Anymore

On Thursday, Carolyn’s drug regimen was changed to take away the restlessness and keep her in bed until her pelvis could knit together and heal. 

She was given Haldol, and Tramadol together to make her sleepy and keep her off her feet at about 8:00 AM. It did the job well. She slept soundly until nearly 2:00 PM, missing lunch. I fed her some yogurt and Ensure to tide her over until 5:00 PM, when she ate dinner. She ate about half, maybe. She wasn’t too hungry.

She was given the drugs again at 8:00 PM and when she fell asleep, I went  home to my own bed and slept soundly through the night, having spent most of Thursday with Carolyn.

They repeated the dosage at 8:00 the next morning after a big breakfast, and she went to sleep again. Assuming that she would sleep until about 2:00 PM and wake up again, I went back home and ran a load of clothes through the washer and dryer.

When I came back to her room in the after noon, she was still sleeping soundly. Her shirt was wet on the back, and I was afraid she had wet herself in her sleep, but her underwear was dry and clean. We had left her covered all day, and she was sweating. I changed her shirt to a dry tee shirt, and moved her to the couch and left the bed open so the sheets could air out and dry.

I stayed with her until 5:00 PM, and she was still sleeping, so she missed dinner . She looked really drunk. I made a joke to the nurse about never having seen anybody that drunk since I was a soldier on Okinawa.

I went home and ran the dryer again because the clothes didn’t get dry enough, and got a bite to eat for myself. I went back to be with Carolyn, and her condition was unchanged. At about 9:00 PM we all decided to skip any more drugs—she could not have swallowed them anyway. I went home and slept again.

Friday morning came, and she was still out. The nurse told me that there had been a miscommunication on the drug changes. When they added the Tramadol to the twice day day regimen, they were supposed to have removed the Risperdol, but it didn’t get on the aide’s chart, so Carolyn got all three drugs. The combination gave her a big overdose, and that is why she didn’t wake up. (Not true—corrected later in this narrative) She could not focus her eyes, and her head lolled to one side, and she couldn’t turn it back. I sat her up on the couch, and held her up and tried to put a little water in her mouth for her to swallow, but it just dribbled down her chin.

Today, Saturday, she smiled when I told her who I was, and was focusing on me. and lifting her head. Her shirt was wet on the back again, even though we only covered her with a sheet last night. I lifted her into the wheelchair, and took her to the bathroom, and got her clothes down and her sitting on the toilet. Her diaper was a little wet, and she had made a small mess in the diaper, but it was all contained and easy to clean up.

After a clean dry shirt and underwear, I put her back on the couch.

Her level of consciousness varies minute to minute. At about 10:30 I thought she was trying to cough, and then as it got stronger, it looked like she was going to vomit. I picked her up to a sitting position, and realized that she was having seizures. The convulsions lasted for about 30 seconds and then subsided. 

Soon thereafter, she started breathing fast and heavy. I checked her with the pulse oximeter and her heart rate was dropping down to about 40 bpm and oxygen saturation was down to 88-89. I called the aide and she took a blood pressure reading at 96/56. 

It’s not funny any more. I’m worried.

Her respiration has increased to 37 a minute, as her body tries to compensate for the heart slowdown, I think. 

I turned her oxygen concentrator up to four liters, and her oxygen level is back up to 95%, but her heart rate is still down at 44 bpm, and she is still panting at 35 breaths per minute. 

Could this be a repeat of the sudden seizures that have making her pass out and fall for all these weeks? Or is this part of the recovery from the drug overdose?

It’s a weekend, many of the nursing staff are dealing with their own sicknesses, but we have a nurse on the way. 

It’s now 12:30 PM on Saturday, the nurse has arrived, and reassured me that it is not a drug OD, that they did not give her Risperdol—that was discontinued before this happened. The miscommunication was not about Risperdol, but about another drug Restoril, a sleeping pill. 

In any case, that is not what is causing this problem. She hasn’t had any drugs at all for over 30 hours. Something else is going on, maybe related to the seizures that she was taking Mysoline for until the doctor took her off to determine if that was causing her memory problems. She has not taken that drug since May of 2012.

The doctor has been contacted by the nurse, and he is concerned about the rapid breathing and, with a pelvic fracture, maybe a blood clot in the lung. He has ordered x-rays of her chest to see if pulmonary emboli might be present. We’ve been here before. She still has less than full lung function from an earlier pulmonary emboli event. 

It’s now 3:00 PM, they got the x-rays, and they will have the results later. Nothing obvious showing up on the monitor.

Carolyn is waking up slowly. She wanted to go outside, I think. She kept pointing at the wheelchair. So after I checked her oxygen (96%) I put her in the wheelchair and took her around the building. She started with her head held up, but halfway around she got tired, and her head fell back, so I held her head up for the last part of the ride.

I am so relieved she is coming alive again. I hope it is a continuous process. She was able to drink a few sips of cold Dr. Pepper a minute ago, and she is laying on the couch snoring now. 

For the moment, her color looks good, she is breathing normally again, and she’s snoring peacefully. 

And I’m breathing normally, too, now. These days are getting harder and harder.

Dementia and racism

I’m glad I’m not the administrator of this assisted care living facility. It has to be one of the toughest jobs in the world. We’re talking trying to keep harmony and peace with a very diverse set of patients who come from many different beliefs and cultures, and are not functioning on a sane or rational level.

Several months ago one of the female residents got into a personal tiff with the manager. The resident is extremely thin and loud and quite deeply into dementia. She finished her argument by following the manager down the hallway as she tried to leave, calling her disparaging names like “fat pig” and oinking loudly behind her. Like many of us, the manager is dealing with some weight problems (hers due to medications she is taking) but she is not obese by any means.

She brushed it off with humor, but I know that kind of thing has to hurt, even if you don’t show it.

Last night as I was taking Carolyn to dinner, I heard loud shouting from the dining room, so I turned around and wheeled Carolyn back to the room for a minute. I came back to the dining area, and I see one male resident verbally attacking one of the female employees and threatening her. She was having trouble getting away from his abuse, and eventually some other employees told him to leave. I didn’t see that, but I was told later. 

I took Carolyn into the dining room after he left. As he went back to his room he was accusing the employee of blocking the hallway with her drug dispensing cart (she wasn’t—it was against the wall) and it was obvious he was trying to find some pretext to getting her fired.

The the other obvious thing was that he was Republican and she was Democrat. How did I know this? Just a lucky guess. He is an old, white, well-to-do southern man who likes to play with small white children, and she was black, with black children who were helping serve last night. 

He objects to her serving him at the table or dispensing his drugs, so she has tried to avoid being the one to do that. But sometimes when the staff on duty is pretty thin, there is no choice. 

Not only that, but when she is on the other side of the building, he will follow her and berate her job performance, trying to make a scene and get her fired. 

I’ve never quite understood what some of these people want. They object to hiring blacks, they want to get them fired from their jobs, they hate when they get welfare assistance. I suppose they just want them all to die of starvation? Maybe they want to be nicer than that, and just ship them all to nice painless gas chambers?

I stood in the hallway after I got Carolyn seated and watched for him to come back. Sure enough, he soon came by me, and I told him to keep the noise down, that he was scaring the other residents. He came over and took my hand for a handshake, and said there wouldn’t be any problems. I took his hand and squeezed it a little firmer than he liked, and told him I was glad for that. He went on down the hall, did not turn into the dining area, and went all the way around the building to keep from coming past me again.

I stayed in the hallway until I took Carolyn back to her room. He appeared a couple of times, but went back to his room when he saw me.

I should mention that he is very slight and short, and I am much bigger and taller than he is. I’m a lover, not a fighter, but when you are big enough it doesn’t matter.

Solving such issues would be hard enough with everybody in good mental health, but how you deal with non rational cultural biases and overt hostility from people with dementia issues has got to be nearly impossible. 

I don’t know the answer.