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.

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.