The falling time

It’s been a busy week. Four days ago I left Carolyn asleep on the couch (futon) which is only about a foot off the floor. In the morning she was found on the floor beside the couch, unresponsive, cold and pale with oxygen levels in the seventies. No bruises or scrapes this time, though.

She recovered completely with just a few minutes on the oxygen concentrator.

She is also starting to have trouble swallowing. If they are serving beef, chicken or pork, it ends up packed into her mouth and cheeks, and we have to spend several minutes sweeping it out with a toothbrush. The nurses are crushing her medicine and mixing it with applesauce so she can get it down. They ran out of applesauce today, so I went and bought some. Still trying to keep her happy!

I still keep cups of yogurt, which she can eat OK. I also bought some diet shakes to supplement her nutrition. She did not like the Dark Chocolate flavor at all, which surprised me, but she really likes the Strawberry flavor. She drank about six oz. tonight. I took a sip myself. Not bad at all.

Falling is getting to be a daily thing now. Yesterday she fell in the dining area holding a plate in her hands. The plate broke in half, and she hurt her back or hips, but not seriously, we think. She can still stand and walk slowly. The fact that she put her hands out in front holding the plate, and that she twisted her back may mean that she was not unconscious when she fell this time. It may have been a trip or unbalance.

They have changed her medication to something more sedating, so I have discontinued the afternoon wine tasting for a few days. She is now sleeping most of the day, which should reduce the chances of a fall, I think. And since walking is a painful thing right now, she most likely won’t be pacing the halls at night for a while.

I spent the morning sleeping across the room from Carolyn on the couch, and then in the afternoon, as she was still asleep, I took a welcome break and went to Wilma Wright’s house for Holiday Festivities. I enjoyed myself immensely. I don’t think I could survive without the family friendship I have here in Oklahoma.

I went back to see her this evening, and for the first time in a week she didn’t recognize me. She was talking to me about what Don told her. I looked into her eyes and said, “I’m Don, and I love you!” Without any hesitation she replied, “Oh, good!” and pulled me in for a kiss.

The little things make it all worth while.

The Seventh Stage

The best of times—the worst of times. That phrase has never meant more to me than this Christmas season. The family has been together here in Durant, except for my son Wes and his family, and he is making plans to be here soon. I have received a bunch of support from many of Carolyn’s relatives who live in Durant and surrounding areas. I never have to feel alone here, even though I am losing my lover each and every day.

Our daughter Darlene and granddaughter Melissa and husband Rob drove up from Texas to visit for the holiday. Melissa and Rob stayed in a nearby motel (hey, they’re newlyweds, after all) and Darlene stayed in the room with her mother. 

The worst came on Christmas Eve morning when I opened the door after arriving at Carolyn’s room, and immediately smelled the odor. Darlene was still sleeping, at least until I came in and woke Carolyn up. She was a mess, to put it mildly. Her clothing was soiled, and the sheets on the bed were soiled all the way through to the mattress cover.

I led Carolyn in to the bathroom to clean her up. She objected a little bit until I told her I loved her and wanted to help, and I wouldn’t tell anybody. Darlene got up and stripped the bed, found clean sheets and made the bed up while I was cleaning up Carolyn in the shower. It wasn’t too much trouble—it gets easier with practice— and the only trouble was that the trash can had been emptied but the plastic liner had not been replaced.

There was a short moment of indecision as I held a really stinky diaper in one hand and the trash basket in the other. I put the diaper in the can and came back later and washed the trash basket in the shower after finding a plastic liner for it. I put the diaper in a plastic shopping bag, tied it off, and carried it to the dumpster out back.

I found a pretty red pajama set and dressed her in soft and fuzzy pajamas for Christmas. I brushed her hair and exclaimed how much better she looked all fixed up, and she smiled a little, I think. 

The rest of the day became very busy, as she needed to visit the restroom often, probably as a result of too much candy and sweets. She also became very restless, so I spent a lot of time walking her around the building, or rolling her around in the wheelchair when she looked too wobbly. 

In the evening I got her to lay down in bed, and Rob invited us out for dinner at Jalapeño’s Restaurant for a big Mexican dinner. When we got back to the room, I was surprised to find Carolyn still in bed snoring, so I sneaked back out and went home to my room at Joe Wright’s house.

I had a terrible night. My legs kept cramping, probably from all the extra walking I did with Carolyn. When she got tired, I got to push her in the wheelchair. I was just miserable. My whole body ached and itched. I got up and took a hot shower about midnight, but still couldn’t sleep, so I fired up my Mac and searched for information on Alzheimer’s.

The Alzheimer’s Association had an article on the Seven Stages of Alzheimer’s, so I read it to see what I could learn about Carolyn’s condition. I was surprised to find she is in the last and final stage. 

Most of the time she is completely incontinent. Guardian hospice has been providing us with adult diapers, which work well most of the time. 

She is having more and more trouble swallowing. If she has meat of any kind—chicken, beef or shrimp—it ends up being packed into her mouth and we have to spend several minutes raking it out with a toothbrush.

I have been feeding her yogurt, which she seems to be able to swallow better than hard food. I bought her some Ensure today, but she did not like the flavor of Dark Chocolate, so I will have to try some other flavors, I guess.

She was talking mostly gibberish, but since I have been giving her a little wine in the afternoon, she is using real words, even though they are not always in a sensible sentence. Tonight she surprised me by talking about her “environment.” I asked her what she meant, and she repeated it! Before the dementia came on, she played a mean game of Scrabble!

She also now knows me by name, and she recognized her daughter Darlene. She could do neither a month ago, before the afternoon wine. 

I think the falling down is part of the progression, also. They mention how many women fall and break their hips, which leads to a rapid decline and death. She has not broken any bones yet, but the inexplicable falls are coming more often, and we can’t seem to find a cause or cure. I think maybe her neurological networks are blinking out now and then, and either her breathing or heart stops. She passes out, crashes into the floor, and then the heart or lungs restart, with only a low oxygen saturation level to show what happened.

I also read an article on a change in protocol for listing causes of death on death certificates. Many Alzheimer’s patients deaths are being listing as pneumonia, which is true but incomplete when the root cause is Alzheimer’s. If all those who had Alzheimer’s when they died had that listed as the cause of death, the horrendous numbers would be even worse than we know.

I don’t know how many days or weeks she has left, but it seems as if it could be getting close. Then again, she has been unbelievably tough and resilient all her life, and she might surprise us all.

We just continue to keep her comfortable, and give her all the hugs and reassurance we can.

Losing her is hard, but loving her is the easy part. 

The Church Lady

Last night my wife fell again. She had been hiking around the halls, searching for something that she can’t find, anxious and maybe afraid to sleep. I don’t know what delusions she sees at night, but she seems unable to relax and sleep most nights.

The floor rose up and struck her square on the left eye, leaving a shiner worthy of a boxer who forgot to duck. The staff at Featherstone called a nurse in from Guardian Hospice, and I arrived just as they were tucking Carolyn into bed. She was still trying to get back up, so I think they were glad to leave her in my care. 

She called me by name, and hugged me, and told me how relieved she was that I had come. Last month, before the wine, I would have had to tell her who I was, and she still might have looked quizzical.

I put a cold wet washcloth folded up on her eye which was swelling rapidly. I was sure it would be closed completely by morning if I didn’t do something. In a half hour the swelling was much reduced, and I did some simple tests to make sure both eyes were working together, both pupils were equal and reacting to light, and she was focussing on me with no trouble at all.

Soon the nurse from Guardian walked in and asked Carolyn how she was feeling, took her blood pressure, oxygen saturation and heart rate, and wrote it down in her note pad. She asked me how Carolyn’s dementia status was changing, so I told her we had seen major changes in the last few days, as I had been sharing about 4 - 6 oz of wine each evening with her. As I started to explain how much better her cognitive awareness has gotten, she cut in with the fact that she didn’t believe in any drinking because some people get into trouble with too much, and she didn’t drink at all. 

She went on to tell me that some nursing homes don’t allow alcohol on the premises with out a doctor’s OK to make sure that it won’t interact with her other medications. She had a point there, but she didn’t offer to clear it with the doctor, either.

Well, I guess her personal beliefs are OK for her, but it ignores the fact that I am doing the dosing, and too much isn’t a factor. She asked no questions about how Carolyn’s cognitive awareness had increased, or what other effects the wine might have had. Her focus had switched from the patient to her self and her disapproval. 

I quickly brought up my last blog post on the effects of wine on her sexuality on my cell phone, and she said she didn’t spend any time on social networks, either. I explained that this was my logbook for the changes I see in Carolyn day by day, and it would explain what results we have seen in the last few days.

She took my phone and read the story. I actually tried to put in a little humor as I wrote, but she did not smile. When she finished, she handed the phone back and went into a short lecture on her experience with dementia patients, and how Carolyn was a terminally ill person. 

She was sitting at Carolyn’s feet, and talking in a voice loud enough for Carolyn to hear. Carolyn made a loud noise, of which the words were indistinct, “Unnngghh!” but the attitude was unmistakable. She was obviously completely aware and processing what she heard, and not happy at all. Since we started the wine at night, she has become very aware that she has dementia, and it makes her sad. Last night I found it seems to make her mad when people talk about it in front of her.

I thought they taught medical professionals that you don’t talk about the patient in front of the patient, assuming they can’t hear. It was as if she had forgotten that Carolyn was still in the room with us. She didn’t stop and acknowledge or apologize, either.

I would like to find a professional person who can discuss without embarrassment sexual relations at seventy plus years. I would like to find someone who knows something about the effects of alcohol on dementia. I already have found for myself that the alcohol has a far greater effect than expensive drugs like Nemenda and Aricept. I don’t know how long, if ever, until I find such a person.

But I think I found the Church Lady.

Warning- Mature eyes only.

December 18, 2017

For the last three days Carolyn and I have been sharing a glass of wine at bedtime. It relaxes her, and helps her sleep through the night. We don’t drink much; about 6 oz. or so. She not only relaxes, it seems to make her stronger, and more aware of her surroundings. 

Amazing changes are occurring. I can’t find much in the way of research on this topic. When I was younger and single, I had a Tee shirt with the words, “Candy is Dandy, But Liquor is Quicker!” Truer words have never been printed on a tee shirt. 

Tonight as we sat on the couch sipping wine, she snuggled up next to me, and then threw her leg over mine and asked, “How about we go to bed?”

No more talk of babies this time. She has become aware of what she wants, and she’s not wasting a lot of time with subtle Freudian suggestions. I think I remember a poem about “the ways of a woman and wine.”

We have always enjoyed a vibrant and mutually satisfying sex life, but after some bad experiences about six months ago, I had held back, not wanting to cause her any confusion or embarrassment. The last time she forgot who I was about halfway through, and panicked. Made me feel like a rapist. I don’t want to repeat that scene.

I told her I have to get some things first, like condoms to prevent UTIs. So I begged off until later. I also might go out to Mimi’s Toy Box south of town and get some battery powered help, just in case. I have no idea how well her erogenous zone neurons still work. Of course, the biggest erogenous zone is the brain, and evidently there is activity going on there.

The Alzheimer’s Society of the UK actually has a good article on Alzheimer’s and sexuality, but it mostly deals with the loss of sex and how a caregiver can cope. I already know about that. Eccl. 9:10.

The issue of hygiene also presents itself, but that doesn’t bother me, either. I have showered her before, and in our younger days we took showers together often, invariably leading to other enjoyable activities besides washing.

So wish me well. I will be exploring an area of Alzheimer’s caregiving that isn’t much discussed in group therapy sessions. I seem to be the only male spouse with a wife deeply into dementia.

If the door to 304 is locked, don’t get out the key right away, especially if happy sounds are heard inside.

Kneeling beside the bed

She wasn’t in her room, but I found her in the dining room by herself this afternoon, staring at a plate of spaghetti and a saucer of shrimp. I think she ate some of the food, but couldn’t get up from the table. The chairs do not have wheels, and don’t slide well on the deep carpet.

I didn’t think to cut the spaghetti up to make it easier to fork. Several days ago I found her staring at some roast beef slices, wondering how to eat them. I took her knife and cut it up into one inch squares, and she eagerly ate the whole thing. She forgets how to cut up her food sometimes, I think. We should live in Japan, where all food is cut into bite sized pieces before it is served.

After talking with her at the table for a few minutes, I asked if she was ready to leave, and she nodded assent. I pulled the chair away from the table, but she wasn’t able to get up on her own. So I took both hands and lifted her. She was nearly completely limp, and had trouble standing when I got her up on her feet. So I just held her in a hug for a minute until she got her balance, and then I led her back to the room holding both of her hands and backing up. 

Two of her nurses from Guardian Hospice showed up and we talked about how Carolyn was doing, and they seemed a little surprised that I had made her bed up the night before. I excused myself while they took care of Carolyn, and dozed in the library for a few minutes. They came in and woke me up, and told me Carolyn was sleeping also, and said she almost went to sleep before they could get her into bed.

I decided not to wake her, but to return for a visit in the evening. That’s when she is most awake anyhow. Getting over this bug seems to require a lot of sleep. Especially at siesta time in the afternoon.

As I pulled up and parked at about 7:00 PM I noticed her room lights were out. I opened the door to complete darkness, so I flipped on the light switch for the front room, and saw Carolyn kneeling by the bed as if she were praying. I knelt beside her, as she was crying, to find out if she had fallen and hurt herself. She was able to tell me she didn’t hurt, but couldn’t move. She was on the wrong side of the bed to pull the alarm cord to summon a nurse for help, too.

Pulling back to observe the scene, I saw that her left foot was caught in the spokes of a wheelchair, and she was wedged between the wheelchair and the bed, so she couldn’t extract her foot. I couldn’t lift her foot out of the wheel until I dragged the wheelchair away from the bed. I didn’t know how long she had been in that position, and I worried some, knowing the circulation can be cut off and major paralysis can occur. 

She was OK, though, just needing a little help to get to her feet. I hugged her some more, and let her down easy while I checked to make sure she could still stand without help. She said she needed to go to the bathroom, so I led her there and got her pajama pants and ‘pull ups’ down to her knees and carefully sat her on the toilet. She was probably trying to get to the bathroom when she got stuck getting out of bed.

While she sat on the toilet with the bathroom door open, someone came down the hall and opened the main door, as a bunch of the staff came down the hall singing Christmas carols. That upset Carolyn as she still has a little modesty when surprised on the pot, so I went and closed the door, waving the carolers away for a bit.

I helped her get her drawers and pants up after she wiped herself, and we went down the hall to see what the commotion was all about. We figured out the staff was all assembled for an employee Christmas party, so we pulled up some easy chairs and sat down to watch. They had a big bottle of champagne on the table so I poured about half a red plastic tumbler full for me. Carolyn wanted to try it, so I poured another for her. She started to chug-a-lug it down, and it made her cough. After I got her to sip it, she liked it fine.

She settled in and enjoyed the party. The champagne made her face feel warm, she said, and I noticed her smiling and laughing more, too. Unlike me, alcohol makes her happy and excited. Always has. Me, I just get sleepy and look for a dark corner to nap in. 

All the staff exchanged presents from under the tree, and then they played “Dirty Santa”, taking turns taking gifts from one another and laughing a lot. They played a game of musical chairs with a hula hoop, everybody holding hands in a circle and passing the hoop from person to person, climbing through it to get it by to the next person. When the music stopped, the person with the hoop dropped out. When they got down to two people, there was hula hoop contest, which didn’t last long. Neither hoop made more than a turn before they hit the floor. I don’t know who won.

Anyway, after about half an hour she wanted to go back to the room, as the front lobby was chilly. She had finished her champagne, so when I got up to help her, she stood up and started walking down the hall. There is no doubt in my mind that alcohol seems to have a profound effect on her brain and nervous system. She became much stronger, more animated, and seemed to talk plainer. I wonder if there is any literature on this phenomenon in the medical realm.

She had no trouble climbing into her bed, ready to sleep. I moved the wheelchair across the room, and replaced it beside the bed with a rectangular footstool, which should provide a place for her to roll out and hold on to as she gets out of bed. At least it will shorten any fall.

I wished her a good night, told her I will be back in the morning for sure, “because I love you, and I’ll never leave you!” She loves the reassurance.

I’m hoping she has a good night. Maybe the champagne will help. If it works well, I may stop in every evening for a nightcap with her.  

Family Christmas 2017

It was a great weekend, with both children come from across the country to visit their mother and me for an early Christmas family get together. Carolyn was not very aware when they first came, but the next day she perked up and came alive. It was obvious that she enjoyed the visit. 

Monday after they were both gone, she cried for awhile. She has always hated partings and goodbyes. I sat with her for a couple of hours and shed a few tears myself. One of the wisdoms that comes with old age is that it’s OK to recognize your feelings and let it flow. Good for your heart, I think.

Today I went in about 1:00 PM to visit her, and found her asleep on the couch, with the bed stripped bare; the covers piled on the chair. I left her sleeping, and went down the hall to see what was going on.

The nurse said Carolyn had had a heck of a morning. She had been up all night walking around the halls. She gets into “sundowner” mode, where she sleeps during the day and then wakes up to give the nurses a hard time at sundown.

By the morning she was exhausted, and the nurse noticed she needed a shower. She did not want to take a shower and didn’t go easily. I suspect when she knows she has made a big mess, shame and embarrassment have a hand in her obstinate refusal to shower willingly. All her life she has liked to take showers. I suppose that she just doesn’t enjoy someone else giving her the shower and seeing the mess.

I left her sleeping on the couch, and didn’t return until 9:00 PM to see if she had awakened. I found her sitting on the bed, which had only a blanket on it. I sat beside her on the bed and talked for awhile. She just listened and leaned on my shoulder.

I just read an interesting article on the discovery that some of the lack of recognition in Alzheimer’s patients is not memory, but a loss of the ability to recognize faces. I have been avoiding mentioning my name most of the time, because I didn’t want to cause her confusion and frustration if she couldn’t remember. 

According to this article, it is good to tell them who you are when you first meet, to help her with recognition. It’s not a problem if you don’t ask her to remember—it’s just an extra clue. If she does remember, great! If she doesn’t remember, at least she knows your name now.

Most of the time when I tell her I’m Don, her husband, she smiles and hugs me. A couple of times she indignantly replied, “I know that!” I wish I had known about this a year ago. 

After a few minutes of sitting beside her on the bed, I began to put the picture together of the probable morning events. I’ll bet the sheets are off the bed because she got them soiled before they found her and got her showered. So the sheets may be down in the laundry room. The bed was probably open to allow the mattress cover to dry after needing cleaned.

It looks like the nursing staff here earned their pay this morning. I bet they aren’t paid nearly what the work is worth. I am so grateful for the care they give Carolyn. 

I searched the room and found a spare set of sheets in the cabinet under the bathroom sink (?) and made the bed up, with a couple of light blankets on top. During the search I also ran across three blouses that were the wrong size for Carolyn, so I hung them back up in the laundry room. If the other sheets were down there, they were still in the dryer. 

I walked with her one time around the building hallways, and she was almost spry compared to the last few days. She was walking with her head up straight, taking long strides instead of shuffling along, and she did not reach out to take my hand for balance. I was amazed!

Maybe it has to do with the head cold that we are all getting over around here. She had it first, (might have been pneumonia), and she is getting over it now. I can hope, huh? I am getting over it myself, even though this last week has been torture. As my bronchial tubes heal, they get a tickle going that causes continuous spasmodic coughing fits that feel like my ribs are tearing loose. 

Wish the coughing would go away, but leave me the great bass voice. My son Wes has been getting over the same bug, and he mentioned he has been going around singing “Elvira”. I’ve been singing the same song! 

Here’s hoping we all recover and have a Merry Christmas!

The Rings

It must have been about 6:30 this morning that my phone rang next to my bed and woke me from a sound slumber. I am recovering from a cold, and I had taken some NyQuil to help me sleep without waking up in a coughing fit in the middle of the night.

I rolled over and rubbed the fog out of my eyes, wondering what would prompt a call this early on a Sunday morning. It can’t be good. That thought was reaffirmed when I saw the number was that of Featherstone Assisted Living home where I had left Carolyn a few hours ago. She must have had another oxygen deficit attack.

No, not this time. The nurse was very calm and reassuring. This time it was more of a courtesy call. The nurse had noticed that Carolyn’s wedding band was becoming uncomfortably tight and her finger was turning dark. She had called the hospice nurse, and they were coming out to see if the rings could be removed. They wanted to make sure that I would not be surprised to find her without rings later that morning.

I thanked her for calling to let me know, and told her I would be in later to pick up the rings. Then I went back to sleep.

But I didn’t. As I lay there, I became more awake by the minute, and after about ten or so minutes a light flashed on in my mind. 

I thought, “I put those rings on her hand forty eight years ago. I should be the one taking them off.”

I quickly sat up, put on my clothes and ran a comb through my hair. I opened my bicycle toolbox and took out a pair of small diagonal cutters I use for trimming brake cables and put them in my back pocket. I walked out to the car, and drove on the deserted streets of Durant over to Carolyn’s home.

There was no activity showing out front, so I went to the back and talked to the nurse. She said the hospice nurse had not yet arrived, but they had given Carolyn some Valium to calm her down, because she was up all night walking around the halls again. I went into her room and found her asleep. Her fingers were greasy where the staff had tried to remove the rings, with no success. 

I woke her up, and she groggily came awake as I told her what I intended to do. She agreed, and watched as I carefully slipped the tip of the cutters under the rings, one at a time. and clipped them free. I spread them out a bit, and slid them off. Spying the birthstone ring on her other hand, I took it off without cutting it. It was tight, but It came off without too much difficulty. 

I spent a few minutes talking to her, reassuring her that I still loved her, and that I would take good care of the rings. I caressed her fingers to make sure the circulation was good. She closed her eyes and relaxed. I left her sleeping again, and went out in the hall to show the nurse and make sure she noted that I had removed the rings and had them in my possession.

She said she would call the hospice people and explain that the rings were off and that Carolyn was sleeping now.

Those rings always meant far more to Carolyn than they did to me. I was raised in a strict religion that equated wearing gold rings with some kind of moral idolatry, and wedding bands were included in the prohibition. She was raised in the South, mostly Baptist, and the rings were the proof to the world that you were actually married. We needed to talk about it, but I was still too dumb to know it.

Soon after she had agreed to marry me, and we had moved together as a couple, we had our first big argument, all about the rings. 

She and I and my brother John were coming out of a store in Huntington Beach—maybe a K-Mart—and John came up  and handed me some rings that Carolyn had thrown down on the pavement behind me. I had missed the whole thing, including that she was mad about something. John had to tell me she was pissed. Talk about clueless!

When we were alone back at the house, I presented her with the rings she had ditched, and asked what was bothering her. She exploded in anger that I had made a large purchase, (a mower, I think) and she was waiting for me to buy her a ring. The rings she threw away were the ones from her former husband.

Well! What a revelation to me! We were raised in different worlds, so if one thing was going to have to change, we needed to communicate. I apologized for not suspecting, and promised to take her down to the jewelers and we would pick out the rings. 

We did it within the week, and she has worn those rings ever since.

To me, the rings mean nothing—the promise means everything. I promised to love her and stay true to her forever, and I meant it. I don’t wear any ring, and never have. It is just a symbol of the promise made, and if you don’t keep the promise, what difference will the ring make?

Now and then I read in novels or see movies where people take off their rings or turn their spouse’s picture to the wall while they take another lover to bed. The whole scene baffles me. My slightly autistic, literal mind just does not grasp the concept. Either you keep the promise, or you don’t make the promise.

I have known couples with open marriages, and I have no problem with it, for them. It’s not my choice, but if it works for them, at least they are honest. Carolyn and I have been invited to join key clubs and other wife swapping groups back in the Sixties and Seventies, but we liked the relationship we had, and saw no reason to change it. 

What research I can find, including Masters and Johnson’s book “The Pleasure Bond” shows that few marriages last more than a few years unless they share exclusive sexual privilege only to each other.

So as at the beginning, this marriage is now without rings, but still with the love and commitment promised then. I cannot imagine not loving her. I know the day will come, but I am hanging on as long as I can.