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. 

New drug schedule

This morning they changed Carolyn’s medical regimen again. She had gotten tolerant of the Haldol, and was awake and alert in the mornings and afternoons. But she was still having pain from that broken pelvis, and her persistent attempts to get up and walk were preventing the break from healing, I think.

She has been getting Tramadol on an as needed basis, and since she seldom complains, she wasn’t getting it very often.

Today they decided to give her Tramadol on the same morning and evening basis as the Haldol. The combination has really wiped her out. She has been deeply sleeping all morning, and she didn’t look capable of sitting up for lunch, so she is going to continue her sleep, and when she comes awake later, I’ll give her some Ensure, or yogurt, or what ever else I have in the fridge.

The really good part is she is not moving around, and not in any pain, and possibly the pelvis will have a chance to heal before she adapts to the new drug combination and becomes more active again.

Her heart rate and oxygen levels are normal (I’m checking them obsessively) and she looks very comfortable for the first time in days. I’ll leave it up to the hospice nurses if they want to try to give her a bath this afternoon. I think one of them may have to hold her up on the shower chair for the bath.

For the first time in a while, my morning has been relaxing and restful, without having to guard her from trying to get up and go someplace, a place she doesn’t know and can’t tell me, but wants to go there anyway. I usually wheel her around the hallways several times a day just to let her get out of the room. But not today.

If she continues to sleep this deep, there won’t be any wine this afternoon. She has plenty enough medicine reactions with what she is taking now. 

I may get a chance to slip out and goto the store and buy some things, and maybe get back to the house and move my washing to the dryer. Just about ran out of socks and underwear. I’ve been spending most of every day with Carolyn for the last week and a half. Never realized how tiring it is to just sit and guard somebody. Of course, my emotional attachment doesn’t help. It’s hard to be dispassionate when it’s the person you’ve lived with and loved for forty nine years.

Our son Wes and his family are coming to visit at the end of the month, and I’m hoping she is back to alert and awake and with her pelvis healed back to one piece by then. 

It’s 12:30 and she just opened her eyes and said something, but I didn’t catch what it was. I'd better go see to her.

That’s all for now. More later.

Can't keep a Good Woman Down

Things are happening so fast that this report on Carolyn’s condition is becoming a daily log. 

This morning when I came in to see her, she was sleeping soundly in bed. It looked like there wasn’t much of a story to tell today. I went out in the hall to talk to the nurse on duty. She is working a sixteen hour shift this Sunday. That ugly sore throat and cough crud is going around. The staff is spread pretty thin this weekend. 

When I asked about Carolyn’s morning, the nurse gave me kind of a wry smile and said, “I got her up for breakfast, and she ate it like she was hungry. I put her back to bed and took care of some other residents, and when I went back in her room in a few minutes to check on her, she was gone.”

“Her wheelchair was still there, so I checked the bathroom and hall, and she was nowhere to be seen. I called the other staff on duty, and when I told them I couldn’t find Carolyn, they told me she was sitting up front in the lobby!”

Last week she fell and broke her pelvis. This week she is hobbling, limping, shuffling her way halfway around the building to sit out front.

I know that has to hurt, but I don’t know how much. I just know that when she makes up her mind to do it, she does it. No complaining, no whining, no crying—she just gets up and does it. I’m the one who is crying. See why I love her?

I stayed with her the rest of the morning, to make sure she doesn’t get up again and hurt herself. I notice she has a new bruise near her right eye. I suspect she fell somewhere on her journey this morning, but she isn’t admitting to anything.

I am going to stay here with her for a few days to increase the surveillance coverage. She needs constant supervision, I think.

I am also going to try to teach her the art of traveling in a wheelchair. If I can get her to stay in the wheelchair and move herself around that way, she will reduce her chances of falling, and surely cut down on the pain.

I wish there was some way to restrain her in the wheelchair. But that is illegal. The reason is that they are not prisoners, so they don’t deserve being confined or restrained. I am baffled. Are these the same liberal thinkers that decided to levy fines on everybody for not buckling up when driving? I’m more liberal than most Democrats I know—way more liberal than any Clinton—but this is effete liberal irrationality at its worst. Sure they don’t deserve to be restrained, so we will just allow them to fall and freely break their hip and die. Let’s just let old feeble people fall and kill themselves, but for sure let’s punish young healthy people in cars for not buckling up.

Rant over, until the next one.

I put her in the wheelchair and took her to the dining room for lunch. I wheeled her to a place at the table, and then I went back to her room to relax for a few minutes. In just a couple of minutes I hear, “Carolyn, what are you doing?”

I jumped up to see what’s happening, and I see Carolyn standing near the kitchen entrance, two tables away from where I left her sitting. She decided to get something to drink, so she just rolled back, stood up and started walking over to get a drink. I caught her and took both hands in mine, and walked backwards, leading her back to her table. I got her seated again, and pulled up a chair next to her, to keep an eye on her. There was only one server for all the people in the dining room, and they can’t sit guard on Carolyn and serve the others, too.

 After lunch she slept for an hour or so, and then she tried to get up out of bed again. I put her in the wheelchair and asked where she wanted to go. She didn’t know. That makes it hard on me. I think this may be karma for all those times she asked me, “What do you want for supper?” and I said, “I don’t know. Whatever.” Now I understand how unsatisfactory that answer is.

So I took her out in the hall and showed her how to put her hands on the wheels rather than the armrests and push the wheels around to move the chair. She was doing pretty good for about 15 minutes. But an hour later she forgot. This lesson is going to take a lot of reinforcement. 

I’m going to stay with her for the night and try to keep her from walking anywhere. She is not accepting the oversight with grace. She is snapping at me with hostility in her voice when I tell her to sit back down. All the explanations about trying to keep her from hurting herself are completely lost somewhere. I am trying hard to convince her that the pain she suffers when she walks is telling her she shouldn’t be walking. Reasoning doesn’t work at all anymore, though.

She is sleeping now, I think. In a couple of hours she gets her medications, which should keep her sleeping for the night.

I’m guarding the door. Almost afraid to close my eyes.

Healing time

This morning I feel as Evel Knievel’s mother must have felt. So proud of my wife and yet so afraid of what is to come. 

When I got to her room this morning, music was coming through her open door loudly. It was “Amazing Grace” by Elvis Presley, one of her favorite CDs. I found her sitting in her chair in her nightgown, and she smiled and kissed me when I came in and told her who I was. She always loves to see me.

I sat down in the wheelchair beside her, with a coffee mug in my hand, and started talking with her. Then I noticed a soggy diaper on the floor next to the bed. I picked it up and put it in the trash, and assumed the nurse had forgotten to pick it up after changing her.

Carolyn was getting sleepy, so I put her to bed, and after she closed her eyes to sleep, I went out to talk to the nurse about Carolyn’s morning. I told her about finding the diaper on the floor, and she said she had not changed her, and wondered if Carolyn had done it herself. I didn’t think so, since I didn’t think Carolyn was walking yet due to the pain.

When I went back to the room, Carolyn was getting out of bed. I asked her if she needed to use the restroom, and she said yes. So I moved her into the wheelchair and trundled her into the bathroom. I lifted her nightgown and was surprised to see she had no underwear on at all. That could have been bad, but her nightgown was dry, as was her bed and chair where she had been sitting.

I put clean diapers on her, after washing her front and back with the bidet, and wheeled her back to bed. She wanted to lay down and sleep some more. When I stood her up beside the bed, she shuffled herself forward and turned and sat down on the bed. This is one week after she fell and broke her pelvis. I have never met a tougher woman. She has always healed fast, but this is amazing!

I went back out in the hall and told the nurse she was right, that Carolyn had taken her diapers off herself. Either she took them off or they fell off as she got out of bed. 

I don’t know at this time whether she got across the room, put on the CD of Elvis, and then came back and sat down all by herself, or someone else helped her. The nurse on duty said it wasn’t her.

If she is actually up and about again, I guess the respite from worry about her falling is over. She is still sleeping more than she did, and maybe she is replacing pacing the halls with relaxing to music. I can always hope.

As they say, Hope Forever Springs Eternal. Not much choice at this point. 

Winter and spring falls

It’s a new year, and already big changes are happening. To try to reduce the restlessness that is causing Carolyn to pace the halls until she passes out and falls, they have started her on Haldol, which is a great improvement so far. 

At first she was sleeping around the clock, but after a couple of days she is adjusting to the drug and is awake in the morning and afternoons now. I’m hoping for continuing calmness and comfort for her.

The other big news is that she fell last weekend, and after the pain would not go away, they brought in a x-ray machine. She has a minimally displaced pelvic fracture on the left side. I was worried that she might need palliative surgery to recover, but after a meeting today with her nurses, it seems that it will eventually heal without surgery. We all agreed that she would not be likely to fully recover from general anesthesia in her present condition.

We are all learning how to handle her when transitioning from bed to wheelchair to toilet and back. She has no pain standing or sitting, it’s just the movement from one position to the other. I have noticed that it isn’t necessary to have her try to rotate after standing to get perfectly aligned with the toilet or bed. The twisting hurts worse than just tipping her in sideways. After she is down, then it is easy to move her without much pain to where she needs to be. The key seems to be having her hold on to me and help lift herself as we move her.

We discussed whether she needs stronger pain medication, and I expressed my reservations on that, because the pain that occurs when she tries to walk is what is keeping her from getting up and walking around and possibly falling again. As long as she is comfortable and pain free while sitting or lying in bed, I am OK with her pain drugs at the level they are. It’s a relief not to worry about the next call that she fell again, and wondering if this is the time she leaves us for good.

I was surprised to find that the nurses were worried that I was dissatisfied with the care that Carolyn is receiving. I reassured them that I am grateful for the care and concern she receives at Featherstone, and I don’t know how I could manage with out the help we get. 

I guess it is the constant falling that has them worried, but it worries me, too, and I know there is no way that someone could follow her around 24/7 with their arms under hers to catch her in every fall. As I peruse the multitude of websites and Facebook pages from others dealing with dementia, a constant theme is that in the later stages of this awful disease, falling is inevitable. 

For many, the end of life and the cessation of dementia occurs after they break a hip during a fall, and never recover. I am hoping that doesn’t happen with Carolyn, but I realize with fear and trepidation that it is a real possibility. I am trying to spend more time each day with her to fill in the times when the nurses have others to care for.

I have suspended our afternoon wine tasting sessions while she adjusts to this new drug. Maybe in a week or two I’ll resume, but I will notify the nurses when I do. They need to know the schedule so they can plan their daily drug regimen to allow for that. 

Carolyn no longer recognizes me on sight, but she smiles and wants a hug and kiss when I introduce myself each day, and that is good for me and my mental health, too.

The solstice is past, the bitter cold spell is breaking, the washing machine on the back porch has thawed, and spring is on the way. Every day is a new opportunity to find moments of joy and peace, amid the fear and chaos that also is part of life. 

I take a deep breath, and know I can do this.