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November 24, 2009

Caregiver’s Self-Care and Excuses

Mary Ann’s day seemed to go reasonably well. There was no napping, although a few times during the day her head hung pretty low, resting on the arm of her transfer chair. Each time I asked her if she wanted to go in the bedroom and nap or stay out in the living room, she opted for the living room.

Zandra, her bath aide, came this morning, but she was pretty sleepy through the shower and getting dressed. By lunch time, she was open to going out to get something to eat. She did pretty well with a hamburger cut into quarters. She let me cut it into quarters for her, but she would not have tolerated my putting it to her mouth to help her since we were out in public.

After lunch, we headed to the grocery store. As tired as she seemed, she loves going to the store and reminded me that I had mentioned that possibility. It is still a marvel to me how it is possible for us to go through so much food, as little as Mary Ann eats. A few items on the list always seem to grow to a basket full.

After supper (Mary’s pork, dressing and gravy), Mary Ann watched television for a while, went to bed, got up again to watch some more televison in the living room, then returned to bed, where at the moment she seems settled.

In between lunch and the grocery, we drove up to Cedar Crest, and while Mary Ann sat in the car, I took about a mile long walk. That is the first time I have walked for exercise since before the trip to Hot Springs.

My excuses for not keeping up with the exercise walking that began a few weeks ago are legion:

First, there was a break in the pattern that had developed. The trip to Hot Springs was the first break — about a week. Then came the hospital stay. The walking was beginning to take on the character of a habit before the break.

Then, the hospital stay wore us both out. I was pretty tired when we got home. Mary Ann was dealing with such confusion and a lower level of functionality pretty much precluding my leaving her to walk.

Those first days back from the hospital, she slept pretty much all day long every day. I couldn’t leave the house for a moment while she was sleeping.

After a while, she was and still is often getting up pretty early in the morning. Before the trip she was doing so well that I felt comfortable walking for about a half hour before she got up for the day. I always made sure she had gone to the bathroom, and I put the Lifeline button around her neck. When she gets up early, walking is not an option.

When Volunteers have come recently, once I did take a walk. The other times, the weather has been bad, or I just decided I was too tired to do it.

The last few weeks after the hospital stay have seemed especially stressful. That is my excuse for returning to eating endless snacks to provide a treat, or just give me something to do to self-medicate.

It is true that working out times to walk has been more difficult in these past weeks. The trouble with that truth is that it is not the only truth in this situation. I am a resourceful person. With enough commitment and will power, I should be able to figure out how to get regular exercise.

And, of course, no one is shoving the food into my mouth. If there will be food in the house or food on the table, I am the one who will put it there. It is not as if I have no choice about what ends up on that table.

My excuse relative to food, is that I am trying to give Mary Ann things she likes and she needs lots of calories. Of course, I do not have to eat the same thing she is eating. It is my choice.

I have cancelled, at least for the moment, the exercise and weight control program at the exercise therapy clinic that I was going to begin after the trip. After the hospital stay, Mary Ann was doing so badly for a while that I didn’t think it would work to try to have her with me, sitting in on an exercise class.

Mary Ann is enough better that I should be reconsidering starting that program. Now with the holidays looming, that excuse has kept me from making the call to set the appointment.

Under the best of circumstances it is hard to develop and maintain a good set of self-care disciplines. We are not in the best of circumstances. All sorts of excuses to avoid good eating and exercise habits are readily available. The irony, of course, is that good eating habits and good exercise habits translate directly into feeling better and being better able to do the task of Caregiving. Sometimes we are our own worst enemies.

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November 22, 2009

Update and Local Art Museum

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Therapeutic Activities, Uncategorized | Tags: Art Therapy, Art Therapy for Caregiver, Burdens of Caregiving, Caregiver's Health, Caregiver's Source of Strength, Caregiver's Therapy, Caregiver/Spouse's need to get out, Caregivers can feel trapped, Caregiving Spouses, Chronic Disease, Coping with Challenges, Feelings of Care Receivers, Feelings of Caregivers, Freedom for Caregivers, Meaningful Caregiving, Parkinson's Disease, Parkinson's Disease Dementia, Practical Caregiving Ideas, Quality of Life, Television and the Homebound |
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Mary Ann got up early this morning since she had no supper last evening, other than a couple of snacks during the night. She ate a good breakfast with help, took her pills and ended up back in bed for almost four hours.

She ate a pretty good sized lunch, and we spent a while just sitting with the television on. Actually, I tend to be up and about doing anything I can think of to keep from just watching television. I was back and forth to the computer, outside to check on the birds, got the mail, paid some bills.

Finally I asked Mary Ann if she would be willing to head out for a bit, even if she just sat in the car while I did a couple of things. I had mentioned that I wanted to visit a small but nice art gallery on a local college campus. Our deal was that I would just go in for a short visit, assuming she wanted to stay in the car. That seemed to be her intention.

I had reached the point in the day that I just could no longer tolerate sitting around the house on a warm day, cloudy, but warm enough to be out. Gratefully, she decided she would go into the art museum with me. It took a while to find the handicapped entrance, on the opposite end of the building from the handicapped parking places.

Once inside, there were two major exhibitions that were very interesting. One is called “Stickworks.” It is pretty much indescribable. There are huge sort of huts on the lawn of the museum. People can walk into and through them. They are made from intertwining saplings into surprising shapes and structures.

Inside the museum are photographs of one after another sculptures made with willow branches and saplings, each stretching the imagination more than the last. Even though they are two dimensional photographs, the sculptures seem almost living. That room in the museum left me wondering how someone could even imagine creating such unusual pieces. The link for the artist is http://www.stickwork.net/news.php

The next exhibit made the one I just described seem quite ordinary. It was called “Hybrid Visions” by Ken Butler. An article online from the university described what he does in this way: “He is internationally recognized as an innovator of experimental musical instruments created from diverse materials including tools, sports equipment and household objects.”

This exhibit has to be seen to be believed. Ken Butler takes everything from the backs of old wooden chairs to a laptop computer and creates musical instruments that, apparently, can be played. This is impossible to describe because no one who has not seen it would have existing in their minds reference points to which to relate the descriptors.

While this has nothing to do with Caregiving other than our getting out of the house, doing something stimulating to keep this Caregiver from going crazy, there is an odd sort of metaphorical implication for framing our existence in terms of the exhibit. If it is possible to piece together found items that appear to have been gathered from dumpsters and front parkings on garbage day, add some guitar/violin/cello strings and make music, maybe we can piece together a life of good quality and make our own sort of music.

I think that interpretation is a little contrived and heavy-handed for something so whimsical as “Hybrid Visions.” Oh well, remember, I spent forty years looking for sermon material wherever I could find it, so that the message of the Scripture readings could become more accessible in contemporary terms. It is an occupational hazard.

Mary Ann has gone to bed and seems to be settled for the moment. We will again hope for a quiet night.

November 21, 2009

Anosognosia — Say What??

Posted by PeterT under Daily Challenges, Help from Others, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping, Therapeutic Activities, Uncategorized | Tags: Anosognosia, Art Therapy for Caregiver, Burdens of Caregiving, Care Receivers in Denial, Caregiver's Health, Caregiver's Source of Strength, Caregiver's Therapy, Caregiving Spouses, Chronic Disease, Cooking and Dressing Challenges, Coping with Challenges, Feelings of Care Receivers, Feelings of Caregivers, Giving up Cooking Privileges, Lewy Body Dementia, Losing Ability to Dress Self, Meaningful Caregiving, Parkinson's Disease, Parkinson's Disease Dementia, Practical Caregiving Ideas, Quality of Life |
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Who knew there was a word for it? The online caregiving spouses of those with Lewy Body Dementia (or some form of it) recently contained a line of posts titled Anosognosia. Wikipedia defines it this way: Anosognosia is a condition in which a person who suffers disability seems unaware of or denies the existence of his or her disability.

Actually, those who have been reading this blog for very long, have heard me describe a variety of behaviors that could be described with the word Anosgnosia.

When anyone asks Mary Ann about cooking, her response is always: “They won’t let me in the kitchen any more.” What she seems to be saying is that she could cook and chop and handle hot pans and sharp knives and prepare meals, if only we (I) would let her.

Mary Ann will often start to undress while standing up, even though for a number of years now, her balance and coordination have not allowed her to do so without falling.

She has headed into the bedroom to get sewing paraphernalia to do repair work, most often on something that ends up being a hallucination.

While I sometimes do it, I dislike reminding her that what she is attempting is something she can no longer do on account of the Parkinson’s. I think the better choice when confronting some attempt at doing something no longer within her capability, is to redirect her attention to something else.

As troublesome as are the times she acts as if she has no limitations on account of the Parkinson’s, I can’t help wondering if they are not part of the reason she is doing so well. As much as she has been through, it is hard to understand how she is able to do maintain such a high level of functionality in so many areas.

Today went pretty well. She slept in late, essentially tacking her morning nap on to the end of her night’s sleep. She had a good breakfast, a fairly substantial lunch. We went out for a ride to Ensley Gardens (I walked through them while she chose to stay in the car) and a treat at the Baskin and Robbin’s on the other side of town.

Mary came over, brought the promised pork, dressing and gravy, and spent about an hour talking with Mary Ann while I worked at the computer. Since I tend to be quick to respond in conversation, my presence makes it hard for Mary Ann to be engaged in conversation. My leaving the room for a time allows her to interact more freely with friends.

Again, she has gone to bed early, without supper. I guess by now I should know that a mid to late afternoon ice cream treat is going to interfere with her eating supper. I suspect she will be up to have snacks during the night. I will, of course, need to assist in that activity.

The last couple of afternoons (before today), I have left the house for a time while a friend spent time with Mary Ann. I have spent the time in a different way from usual. Rather than sitting in the car in some natural setting to read or listen to music, or going for a walk, I have visited a number of small art galleries here. I am pretty much devoid of any knowledge in the area of the visual arts, but I am intrigued by them.

At most of the stops at galleries, there has been a docent or artist or owner there who was willing to spend some time in conversation. I have learned a bit about the art scene here, and how some of the artists have approached their subjects, what processes they have used. It has been very interesting, opening a new window on reality for these well-worn eyes.

The conversations have nourished a discovery I made decades ago. There is more than what first meets the eye in most of what we see. Whether it is a landscape, a city street, buildings, trash, telephone poles, growing plants in any stage, people, there are many ways to see them. What artists often do is provide new ways to see the ordinary. While I have no natural ability or inclinations in producing visual art pieces, my interest has been piqued.

One of the artists described her fascination with shadows on the water in a pond or stream or lake. The shaded area of the water’s surface reveals what lies beneath the surface. Lighted areas show a reflection of what is above. It is a phenomenon I have noticed when out walking with my binoculars around my neck. Often I will look for those shaded areas to see if I can locate fish or turtles or frogs.

In a couple of the visits yesterday and the day before, the descriptions of a particular art piece triggered the impulse to write and preach a sermon using the piece as a visual aid. I had enough sense to spare the poor person describing the work from my launching into three part homily on the implications of that piece for their spiritual growth.

Maybe I can convince Mary Ann to consent to a trip into KC to the Nelson again. There are rooms filled with art pieces, some incomprehensible, some boring (in the eyes of the beholder — me), some exciting, some very thought provoking. They also serve a great lunch in the Roselle Court. We will see.

After such a tough time post hospital stay, this one has been a pretty good week.

November 16, 2009

Imagined Possibilities – A Moment of Sadness

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Therapeutic Activities, Uncategorized | Tags: Burdens of Caregiving, Caregiver Seeks New Normal, Caregiver Thinks of Himself, Caregiver's Health, Caregiver's Identity, Caregiver's Longings, Caregiver's Sense Of Loss, Caregiver's Source of Strength, Caregiver's Therapy, Caregiver's Whining, Caregiving Spouses, Coping with Challenges, Feelings of Care Receivers, Feelings of Caregivers, Freedom for Caregivers, Grumpy Caregivers, Help Needed for Caregivers, Meaningful Caregiving, Music Therapy for Caregivers, Parkinson's Disease, Parkinson's Disease Dementia, Practical Caregiving Ideas, Quality of Life |
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Today was a good day in most respects. Mary Ann got up, ate, took pills and got dressed in anticipation of Volunteer Jan’s arrival. Jan did her hair and nails, a real treat. Mary Ann had eaten a good breakfast with some help. Around noon she ate a half sandwich, chips, Pepsi, and large and tasty chocolate chip cookie that Jan had brought.

Mary Ann was up all day, watching football — her choice. The Chief’s won!!! She was awake and mobile enough for us to go to the Evening Service at 6pm. She ate a little supper before church and headed to bed shortly after church.

This was pretty much a normal day even by pre-hospital standards. So far it appears that our new normal will include a little less mobility. Eating by herself was a challenge before the hospital stay. She now needs help much more often than before. Walking unaided seems to be less of an option now. It seems as if in most other areas, we are back to pre-hospital stay levels. That is pretty encouraging. I won’t deny that the last couple of weeks have been scary and stressful, with lots of fears about the possibility of not regaining any of what had been lost.

Maybe it was the barometer change today, but my time away this morning was not so refreshing as usual. The rain did not allow the long walk that releases the mood-lifting endorphins. I sat in the car enjoying the peacefulness of the rain at the lake, listening to a CD. The Taizé Music seemed to open a certain vulnerability to thoughts and feelings that usually don’t have the time or space for attention with the moment by moment demands of the caregiving.

I am embarrassed at the self-centeredness of the thinking, but I have never pretended to be perfect — far from it. I began thinking of who I am as an individual, separate from my role. I thought of all sorts of things I have not yet experienced in life, things that most likely will never come to be. I am not absolutely sure that I would really do some of them even if I had the chance. That is why I titled this post “imagined Possibilities.”

Imagined Possibilities:

Singing with an Early Music vocal ensemble.
Spending a week of study and reflection at Holden Village.
Hiking a section of the Appalachian Trail.
Birding in New Zealand, hiking to see some of the waterfalls.
Seeing the Snowy Mountain region of Australia, visiting each part of that huge country.
Visiting Cornwall England and searching out my Father’s ancestral home there.
Visiting County Cork Ireland, from which my Paternal Grandmother came.
Heading off to Poland and Germany to see where my Mother was born (a German settlement in what is now Poland).
Spending time at the Taizé Community in France and singing the music, having a chance to serve as a Cantor.
Seeing some of the National Parks with my own eyes.
Going on Spiritual Formation retreats at various places in the US.
Probing with great minds the intersection of theology and Quantum Physics (at least listening and questioning).
Attending organ recitals and hearing great choirs and orchestras.

What is so selfish about all this, is that Mary Ann has lost the freedom to do so much more than have I. This morning just opened a bit of sadness about what I might have imagined for myself. I don’t know all the things that Mary Ann would like to have done. Once I was asked where I would like to go if I could, and when I mentioned Australia, Mary Ann said she would like to do that too. We have both talked about never having seen even the Grand Canyon. We talked about going across Canada on a train, traveling to see the fall colors in New England. We got to visit England and Northern Europe forty three years ago, and had talked about wanting to go back, especially to England.

I know intellectually, and most often viscerally, that life is lived wherever each of us is. There is no need to be in some special, exotic place to live life to the full. The grass certainly is not greener on the other side of the fence, as they say. It was just a moment of imagined possibilities and some sadness at what will not be. No matter what any of our circumstances are, all of us have things that are beyond our reach, things we cannot have or experience. We can either face the loss of those imagined possibilities, grieve their loss and get on with life, or spend our precious moments stuck in self-pity.

I have the privilege of caring for someone I love. There are so very many who would give anything to have that privilege. I guess part of living this life to the full is allowing a moment of sadness into it.

November 15, 2009

She is Eating Better

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Uncategorized | Tags: Adjusting Medications, Appetite in Chronically Ill, Burdens of Caregiving, Caregivers Medical Responsibility, Caregiving Spouses, Cause of Weight Loss, Chronic Disease, Concern for Weight Loss, Consequences of sleepless nights, Coping with Challenges, Feelings of Care Receivers, Feelings of Caregivers, Managing Medications, Mealtimes with Handicapped, Meaningful Caregiving, med, Medication side effects, Parkinson's Disease, Parkinson's Disease Dementia, Practical Caregiving Ideas, Side effects of Parkinson's Meds, Weight Changes in Parkinson's, Weight Changes with Dementia, Weight Loss with Dementia |
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The night went pretty well in spite of the fact that Mary Ann had long naps, and ended up getting up from the last one only long enough to change for bed and have a snack container of applesauce.

While having no supper last night has a lot to do with it, her appetite was good this morning. She got up exceedingly early again (at least it seems so to me). She ate a good breakfast at about 7am. Then at about 9:30am, she asked for a sandwich. She ate what she normally eats for lunch, half of a pretty good sized sandwich, lots of chips, Pepsi and Mary’s Jello dish (Cool Whip, lime Jello and cottage cheese) for dessert.

She has been down for a nap since about 10:30am. It is 12:30pm now. Actually, I was glad for the nap. She had been in pop up mode for the morning. When she is in pop up mode I am reluctant to head in and take a shower, expecting her to get up and fall. She had at least one fainting spell this morning.

She got up shortly after 12:30pm. Not too long thereafter we headed out to do some shopping for grandchildren’s birthday presents. Mary Ann surprised me by being willing to go into Barnes and Noble and then Walmart to shop. She had declined doing so yesterday.

We followed the shopping with a visit to Perkin’s. I have been planning this trip as soon as she seemed to be ready to tackle eating in public. I purposely planned to start with this spot, since she always orders the Buttermilk Three pancakes from the Senior menu, along with a half order of bacon. I spread the butter, cut the pancakes into bite-sized pieces and add the syrup. She can handle the bacon with her fingers. She managed to eat about half the pancakes and all the bacon. She was not willing to let me help her with the rest of the pancakes. She was really struggling to manage the process of getting the pieces into her mouth.

This was her third meal today! I am encouraged by that. Through mention of it in passing in an online post, I was reminded that Exelon (she wears a 24hr patch) can in some cases cause anorexia. Another side effect (among many) can be diarrhea. That reminder caused me to pause a moment with the possibility that some of what Mary Ann is experiencing might have to do with the Exelon. She has been taking it for over a year now if I am remembering correctly. I suppose the food, sleep issues and meds at the hospital might have affected the way she metabolizes the Exelon, triggering a change is how she reacts to it.

At the moment, I am still giving plenty of time for her to return to the pre-hospital level of functionality. I don’t want to make (or recommend) significant changes in treatment until it is clear that her symptom changes are here to stay.

Mary Ann had a snack of Tapioca pudding and went to bed at about 6:30pm. I am hoping that she was up long enough today to allow her to sleep well tonight. Since there is not always a correlation between the amount of sleep during the day and the quality of sleep at night, we will just have to wait and see.

November 14, 2009

Fainting Returns!

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Uncategorized | Tags: Adjusting Medications, Administering Medications, Autonomic Nervous System and Parkinson's, Autonomic Nervous System broken, Balancing Medications, Burdens of Caregiving, Caregivers Bathroom Duties, Caregivers Medical Responsibility, Caregiving Spouses, Cause of Fainting, Coping with Challenges, Disposable Underwear Problems, Fainting complicates Parkinsonians' Lives, Fainting with Parkinson's, Feelings of Care Receivers, Feelings of Caregivers, Incontinence, Lewy Body Dementia, Managing Medications, Meaningful Caregiving, Midodrine for Fainting problem, Orthostatic Hypotension, Parkinson's Medications, Parkinson's and Parasympathetic Nervous System, Parkinson's Disease, Parkinson's Disease Dementia, Practical Caregiving Ideas, Problems with Falling, Reason for Fainting, Using Depends |
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Twice today Mary Ann fainted. She has not done so in many weeks. The fainting is due to a sudden drop in blood pressure, referred to as Orthostatic Hypotension. It is another of the systems run by her compromised Parasympathetic Autonomic Nervous System. That system runs the smooth muscles, such as those that create the peristaltic movement that keeps everything moving through the alimentary canal (esophagus, stomach, intestines, colon). It also runs the smooth muscles that cause our arteries to constrict when we stand up, raising our blood pressure to compensate for the pull of gravity.

That was a lot of technical language that simply means that people with Mary Ann’s version of Parkinson’s and Dementia are often constipated and often faint after getting up from a sitting or lying position. In both cases today, Mary Ann fainted when on the toilet stool, after trying to get up. Having watched this at close range for so many years, it was clear to me that both syncopal episodes (medical term for fainting is syncope) happened when a dose of her generic Sinamet kicked in. When it kicks in her body starts involuntary wavy motions called Dyskinesias. Sinamet (Carbidopa-Levadopa) is the main medication that treats Parkinson’s. It is the same medication that has been used for decades. Most of the newer meds just help the Sinamet do its job better.

During the hospital stay, I suggested lowering her dosage in half of the medicine (Midodrine) that raises her blood pressure to keep her from fainting. Last summer we doubled the dosage when the fainting got out of hand and was reducing dramatically our quality of life. That medication and the higher BP slowly damages the heart, reducing its flexibility. Her heart is enlarging, stiffening, her kidneys are being damaged. If we eliminate the Midodrine, it might add a little time, but the time would be of little quality. The goal of my suggestion of lowering the dosage is to find a middle ground that gives us the best we can get of both longevity and quality.

I am not yet ready to raise the dosage of Midodrine. If the fainting comes only when the Sinamet kicks in, I think we can manage the problem. If the fainting increases to the level it was last summer (multiple protracted fainting spells, sometimes even just when sitting in her chair) we will need to increase the Midodrine back to the full dosage. We will do what is necessary when it becomes necessary. Gratefully, the Cardiologist and Neurologist understand the problem and have given Mary Ann and I the freedom to adjust the two meds (Sinamet and Midodrine) within a prescribed range as we determine appropriate. I am grateful for the latitude in dosing, and I also feel the weight of that responsibility.

The day continues: Mary Ann slept until about 2pm. I got her some lunch. She did reasonably well at feeding herself. She still is not eating enough. I convinced her to let me help her with some cake after lunch. She kept putting the fork to her cheek instead of to her mouth. She was resisting my help, but eventually I was able to get most of it in her mouth She managed a snack of ice cream later.

We got to the grocery store! I was hoping we could get it done. Since she is in the wheel chair, mobility is not an issue when going to the grocery. I push her with one hand and pull the grocery cart behind with the other. It is a little tough on my wrists, especially when she drops her feet to the floor and I am pushing against rubber soles on a tile floor. Years ago, she used one of the motorized carts. We gave that up. There were too many displays put at risk by a driver with spatial issues.

We brought home Sesame Chicken from the Chinese counter in the store, so supper went pretty well. She went to bed at about 7pm and has been sleeping pretty soundly since. The first couple of hours after she goes to bed are usually pretty good. I will continue this post tomorrow with a report on how the night went (way more information than any who read this blog actually want or need).

Next day (Friday): The night wasn’t too bad, but it was another early morning with multiple trips to the commode in the wee hours of the morning and finally up before 7pm.

She ate a good breakfast with my help on the bowl of cereal. After a while in her chair she wanted to get dressed. Immediately after getting dressed, she got back in bed for a nap. That was about two and a half hours ago. She did get up once for a trip to the bathroom.

The issue of fainting continues to be a concern. She said that she has been dizzy the last couple of days. That is usually from the low BP. I tried to take her blood pressure while she was lying in bed this morning, but it didn’t register on the electronic monitor. That usually means it is too high for it to measure. BP is usually highest when lying down, since the heart is not pumping against gravity.

While she hasn’t actually fainted today, she came close to it once when I was trying to get her to the bathroom. She also has seemed to be dizzy at least a couple more times. I suspect that the switch to the higher dose of Midodrine will be needed. I am giving it another day to be sure.

The day continues: After getting up from her nap, I discovered something mightily irritating. We had to start using new disposable underwear today. Kroger’s generic has worked very well for us. They have just discontinued the combination male/female one for new gender specific ones. The same size and weight as we used before, but in the new female version managed to leak. It happened twice. All her jeans had to be washed.

I can only conclude that someone in the Kroger braintrust decided that it would be better for sales if they marketed gender specific disposables. That would be fine if they had bothered to make them in a way that actually accomplished their purpose. To those of us who use them, it is no small inconvenience. The small amount it took to leak the two times it happened today suggest that a long nap or a long time between trips to the commode during the night would provide enough leakage to demand changing the bedding and washing the linens, as well as whatever she was wearing.

I took them back to the store, got my money back and bought the Depend’s brand in hopes that they will work better. Even though they also are gender specific, the appear to be constructed in a way more like the generic male/female ones we were using. The Depend’s brand, of course are $12 and change versus the $9 and change price for the generics. We buy three or four packages every time we go to the store. There goes the grocery budget. We will soon determine if the Depend’s are adequate to the task.

The good news is that I found part of a package of the old generic ones in the bathroom closet. Hopefully that will get us through until tomorrow. I change the disposables often to protect against urinary tract infections.

Mary Ann was up for a while this afternoon, after her long nap. She ate a good lunch, lots of left over Sesame Chicken and a huge piece of cake with ice cream. We were able to run a number of errands with her in the car while I did the errands. She is now down for her third nap. It didn’t begin until almost 5pm. It is now almost 7:30pm. She has had no supper. I don’t think there is a chance there will be much sleeping tonight.

November 12, 2009

Sleep! Sweet Sleep! Plus Physical Demands

Posted by PeterT under Daily Challenges, Family, Meaningful Caregiving, Practical Tools for Coping, Sources of Strength, Uncategorized | Tags: Burdens of Caregiving, Caregiver's Health, Caregiver's Source of Strength, Caregiver's Therapy, Caregiver's Whining, Caregivers Bathroom Duties, Caregivers Physical Demands, Caregiving Spouses, Children of sick parents, Coping with Challenges, Feelings of Caregivers, Help Needed for Caregivers, Incontinence, Keeping Care-receivers safe, Meaningful Caregiving, NIght time Commode Trips, Parkinson's Disease, Parkinson's Disease Dementia, Physical Risks to Caregivers, Picking up Handicapped from Floor, Practical Caregiving Ideas, Quality of Life, Sleepless Nights, The Effect of Chronic Illness on Children, Transfers of Handicapped, Turning Handicapped in Bed, Wheel Chair Transfers |
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Whatever happens today, last night we both got a good quality, long night’s sleep. Mary Ann is still sleeping. It is a little after 9:30am. Because of Veteran’s Day yesterday, Bath Aide Zandra did not come. She has arranged to come later this morning, so Mary Ann will need to be up soon.

Later: Mary Ann made it up in time to get her meds taken before Zandra arrived. She has had another loose stool (sorry!) which has been happening for many days now. It raises the question as to whether or not there might be some sort of bug causing some of her problems. We will wait it out. So far it is manageable. i just want to be sure Mary Ann doesn’t get dehydrated. Checking urine color (sorry again!) should provide evidence one way or the other on that. We will not involve doctors and hospitals unless there is something clearly demanding that involvement. If the weight loss continues, I will probably phone the GP’s office for a recommendation of a supplement. Actually, I will also check with the LBD Spouse Caregivers online group. They have far more experience with what works than any medical professional. It seems clear that Mary Ann is just not getting enough calories in to maintain her weight. Oh how I wish I could painlessly transfer about twenty pounds from me to her. I tried to get her to eat a some spectacularly sweet and tasty and moist cherry (homegrown and canned) and nut coffee cake that Maureen brought yesterday. She just wouldn’t eat anything. I, of course, had a huge piece.

After the intestinal activity, Mary Ann decided to lie down again. She has seemed very tired since getting up this morning.

Gratefully, whatever strain lifting Mary Ann from the floor the other night seems to have been healing on its own. The physical demands on Caregivers are often substantial and constant. When I read the online posts of other caregiving spouses, I wonder how on earth they can do it. Most of them are women, many of them my age or older. Some of them have husbands who weigh two or three hundred pounds (one is a former heavy weight boxer). I have no idea how they deal with the demands. Many have a Hoyer lift to use when necessary. We have one also, but have needed to use it only a couple of time in the years we have had it.

The physical demands of course include helping Mary Ann up from the floor when she falls. Our system is not necessarily recommended by physical therapists, but has worked for us for many years. When she has fallen, I work at sliding her (by pulling on her legs) into an open space where she can lie on her back with her feet toward me and her head away from me. I put my feet together in front of hers so that they won’t slide, she reaches up and I take hold of her hands. I rock back, using my weight as a counter balance so that my back is not involved in the process of lifting.

The risks in that approach are mostly to Mary Ann’s arms and shoulders. Again, since she is not heavy and we have been doing it for so many years, her arms and shoulders seem strong enough to manage. So far there have been no noticeable side effects to that process.

One of the movements that has created problems for me in the past, is that which is required to turn Mary Ann in bed and move her to the center of the bed so that she doesn’t risk falling off the side of the bed (been there!). We have single, adjustable beds. For many years she has been able to climb on all fours on to the bed and flop down one way or another. She has come very close to flopping right off the edge of the bed on to the floor. Now, most of the time she simply cannot negotiate that movement. When she tries, she usually gets stuck on all fours on the bed or with one foot still on the floor, unable to move any farther in the process.

Now, most often she sits on the side of the bed, and if she wants to lie on her left side, facing the television, I cradle her and twist her in a sort of dramatic swinging motion until she is facing the appropriate direction. Then I lean forward, slide my arms under her and pull her toward me to center her on the bed. That is the motion that has caused back pain in the past. Now, I squat down and let my body weight (lot’s more than her body weight) pull her to the center of the bed.

If she wants to lie on her right side, the side of choice for her, again, she sits on the side of the bed. I let her head down to the pillow and reach with my right hand to lift her feet on to the bed. Then I travel to the other side of the bed to pull her to the center. Since the size of the bedroom does not allow much space between the two beds, I often can’t seem to get accomplished the motion using my body weight. Most often, I slide my arms under and just pull her to the center with my arm muscles, a movement not unlike doing a curl. Again, that keeps from involving my back in the process.

Now with that image in mind, imagine the nights she is up every few minutes. One of those two actions of moving her to the center of the bed happens every time she gets up, even just to sit on the side of the bed. When I watch her on the monitor, if she begins to move at all, I head in to see what she needs. Sometimes she just needs to be turned from one side to the other, or the covers have gotten twisted out of place.

When we travel, the large beds pretty much preclude my reaching under her to move her. I can do some manipulating to help position her, but most of the options are simply won’t work. If I try to move her much, it puts my back at risk. It won’t help her if I am debilitated.

At the moment, one of the activities that is the most risky for both of us, is the trip to the commode. I pull her up to a sitting position on the side of the bed and pull the commode close enough so that it only takes a transfer with a few side steps to get her into position, pull down her Pj’s and disposable and get her seated on the commode. That part is pretty straight forward.

The risky part comes when she is finished. I pull her up and hold her so that she can use the TP I have handed her. Most often, she just cannot balance well enough to stand on her own. I hold her with one arm, feeling her weight against it, knowing that if I let go she would fall back down on to the commode and over the back of it into the wall (does that description ring of experience?). While holding her with one arm, I have to reach down first to pull up the disposable (we call it a pad), which of course binds since I can only pull from one side, the other hand attached to the arm holding her up. It is hard for her to remember and then to have the dexterity to move her knees apart enough to get the pad through and pulled up.

Then come the pajama bottoms next. They have always gathered at her ankles. Reaching down all the way to the floor with one hand while holding her with the other high enough to be above her center of gravity so that I can keep her from falling challenges my flexibility and strength. When I think of it, I remove the PJ bottoms so that I can put them on her in a separate action while she is safely sitting on the side of the bed.

The commode trips come very often since one of the problems of a compromised Parasympathetic Autonomic Nervous System is the need to urinate frequently. The last time Daughter Lisa stayed with Mary Ann over a couple of nights, she shared with me that she was pretty concerned about the risks associated with the night time commode trips. Both of our children are very concerned about the precarious nature of our situation. They recognize that it would not take much to mess up our system. If I am not able to handle Mary Ann, either due to her physical condition or mine, a whole new set of challenges would emerge. None of us wants even to think about it, although it is hard not to do so.

One other activity has become more challenging since the hospital. There are more times when she can’t open her eyes, and/or is almost too weak to walk making the short trip from the door to the car pretty difficult. If this continues, I will set up the aluminum ramps and roll her down the two steps to the door of the car in her transfer chair. Oddly, steps are far less problem to handle than walking on a level floor to those with Parkinson’s. Steps usually are her best thing.

While I need cardio-vascular conditioning exercises, I think I am getting plenty of upper body strengthening in this caregiving role.

It is still only mid-day, but this has gotten far too long — as have most of the recent posts. She is still sleeping. I hope to get her in the car and to the grocery store this afternoon. We will see.

November 11, 2009

Wake up! Go to Sleep! Please!

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Therapeutic Activities, Uncategorized | Tags: Burdens of Caregiving, Caregiver's Health, Caregiver's Source of Strength, Caregiver's Therapy, Caregiver's Whining, Caregivers Bathroom Duties, Caregivers Household Duties, Caregivers' Sleep Deprivation, Caregiving Spouses, Consequences of sleepless nights, Coping with Challenges, Daytime Napping and Sleep, Daytime Sleeping due to Dementia, Dementia and daytime sleeping, Feelings of Care Receivers, Feelings of Caregivers, Grumpy Caregivers, Hallucinations, Help Needed for Caregivers, How Long to Let Sleep, Incontinence, Mealtimes with Handicapped, Meaningful Caregiving, Parkinson's Disease, Parkinson's Disease Dementia, Practical Caregiving Ideas, Quality of Life, Sleep issues, Sleepless Nights, The Good Life, Writing as Therapy |
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It was a night from Hell. We have plenty of them. I went to be early in hopes that my presence would help her sleep. Not so. She wanted to go home more than once. Often she would get up and when I asked, admit that she didn’t know why she had gotten up. Once she woke up and said she had swallowed a snake. I have no idea from where that thought came.

It went on through the night. Once there were only seven minutes between times of getting up with some need. The next one was twelve minutes. Then came a couple about twenty minutes apart. I am just tired enough that I went back to sleep during each of those short times, only to be wakened again. I am not sure what words to say to communicate the level of frustration with that behavior.

One of the times she got up, she agreed to go to the table and eat some applesauce. We started toward the dining room, and soon it was apparent that she just couldn’t walk well enough to make it there. I asked her not to move, while I ran a few feet to get the transfer chair. Of course she fell. My level of frustration was enough that while I was complaining about her not staying still, instead of patiently working out how to get her off the floor in a way that was safe for me and her, I just picked her up off the floor and seated her in the chair. Yes, she is only a little over 120 pounds. No, a small 66 year old man with a family history of back issues should not try to pick up someone from the floor, someone who is not able to help in the process, essentially dead weight.

While it hurts, at the moment (six or seven hours later), it is not excruciating. I am hoping only minor damage was done and that Advil, ice and a call to Chiropractor Tim will eventually take care of it.

Last night, all I wanted was for her to go to sleep! She got up early again. I just insisted that she stay in bed so that I could get another hour of sleep. Gratefully, she did stay in bed for a while.

When she got up, things were pretty difficult. I, of course, was not in a very pleasant frame of mind having been up and down every few minutes during most of the night. She was able to get some of her food eaten by herself. After breakfast she sat by the television in her PJ’s. She was in popping up mode. While at the moment, she is not fainting, her weakness and balance are making her vulnerable to falls. I got a phone call. Just as I got into the conversation, she hopped up and headed across the room. I was frustrated by the timing of it, but after determining it was a bathroom need that precipitated it, I got off the phone and got her into the bathroom and seated.

I have not mentioned this much in the last three days, but there has been intestinal activity verging on diarrhea. Sunday morning when I was gone, she had some major activity. That activity required a later cleanup that involved removing the toilet seat, taking it to the large basin I had installed in the basement storage area for things like this, soaking the toilet seat in water with lots of Clorox Bleach, scrubbing the hinges with a toothbrush, rinsing, drying, disinfecting the stool itself and replacing the toilet seat. This is all taught in Caregiver school.

The good news is that the activity does not come often. It is just takes some extra effort to keep her and whatever else clean. We have dealt with much worse in this area. This morning’s trip to the bathroom was not an easy one.

When she returned to the living room, the popping up continued. She was almost always getting up to look around at the floor. I don’t know exactly what she was seeing, but it was some sort of mess that needed cleaning up. Just going into the kitchen to get a bowl of cereal had to be done in short segments of time, often less than a minute in length so that I could check on her and get her seated again.

I had not yet gotten my morning shower. I could not trust her to stay seated for the ten to fifteen minutes it takes for me to get ready. She often agrees that she will stay seated, but pretty much does not do so. I finally realized that the only way I was going to get ready myself, would be for her to be napping.

There is such an conflict of wants and needs that converge on this simple process. I want her to stay awake during the day and sleep at night. I want her to be sleeping even during the day so that I am not dealing with the popping up, the constant needs, the hallucinations, not knowing what will come next. I should keep her up in the daytime, but when she moves into her need-for-sleep mode, she ends up hanging her head and sleeping in her chair, if not in her bed. There is a sense of relief when she is sleeping during the daytime hours, but a dread for the horribly frustrating nights that come when she can’t sleep then.

I suppose I could sleep during the day while she is sleeping. I don’t want to shift days and nights for both of us. I want to be tired enough at bed time that I can go to bed and sleep, if she will allow it. When she is asleep, I have the freedom to do things that nurture my own well-being both for my own sake and so that I don’t lose the capacity to care for her. These posts have been long and detailed lately because she is sleeping enough during the day that I am free to write. These posts have been long and detailed these last days since we are almost entirely homebound now and the task is frustrating enough that I need the outlet of writing these posts as therapy.

Then there is the question, how is Mary Ann dealing with this new place in our experience. She is stuck with the frustration of not having the mobility and mental acuity she has had, and she is stuck with Grumpy Caregiver who gets frustrated with things she cannot control. She vacillates between days when she is exhausted and just wants to sleep, and nights when she can’t sleep, wants to be up while the person on whom she depends is scolding her and insisting she stay in bed. She needs food but often not what is in front of her. She hates the feeling of needing to be fed but often needs to be fed. She wants to do things for herself but is constantly being asked to sit down, being reminded that she can’t do them.

I wish I were better at this caregiving task. On the positive side, I think that most of the time I act in ways that are caring and helpful and affirming of who she is. I try to treat her with respect, recognizing that my words are not always respectful when I am frustrated with some difficult behavior that seems still to be under her control (probably most often a result of the disease more than her willfulness). I work hard at keeping her neat, hair washed, dressed appropriately, the house in order, beds made, kitchen in order. I work very hard at determining what she needs or wants and if it is possible, trying to provide whatever it is. With that said, in fairness, my assessment is based on who I want to be, not necessarily who I am in her eyes. In the area of this sort of self-awareness, my propensity to feel guilty when I have been unkind provides some internal metrics. My self-centeredness drives me to do things that allow me to feel good about myself. My batting average in that task is probably just that, painfully average.

Back to our day: When med time came after she had been sleeping for a couple of hours, I decided not to make yesterday’s mistake. After I took her to the bathroom, she stayed up for us to head to Glory Day’s Pizza to bring a couple of slices home for her (lunch and supper). Her mobility was very poor, and she still would not open her eyes, so the trip out to the car and back afterward was pretty difficult.

She insisted on eating the slice of pizza without help. She only managed to eat the topping (cheese only) from a little more than half of the one piece. Then she was done. After refusing once, she finally agreed to a dish of ice cream. She is about five pounds lighter on our scale than she was the last time she weighed herself before the trip and the hospital. She has been eating so little it is no wonder. When I took her to the bathroom after the pizza, as I was getting her clothes down so that she could sit on the stool, she stopped me, asking what I was doing. She thought we were still in the dining room.

At about 4:45pm, she wanted to get her bed clothes on and get into bed. She got up again when a paid worker from Home Instead to stay for a few hours while I honored a commitment that was important to me. She was still up when I returned and went to bed at about 9:30pm. Let’s hope for some sleep tonight.

November 10, 2009

Is This The New Normal?

Posted by PeterT under Daily Challenges, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Uncategorized | Tags: Burdens of Caregiving, Caregiver's version of Normal, Caregivers Bathroom Duties, Caregiving Spouses, Consequences of sleepless nights, Coping with Challenges, Feelings of Care Receivers, Feelings of Caregivers, Finding what is normal, Hallucinations, Incontinence, Lewy Body Dementia, Mealtimes with Handicapped, Meaningful Caregiving, Parkinson's Disease, Parkinson's Disease Dementia, Practical Caregiving Ideas, Quality of Life, What is normal behavior for those with Parkinson's |
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I explained that she wouldn’t be able to get the pills taken if she did not open her eyes. “Will you open them now so you can take your pills?” I said. She replied, “I will when I am damn good and ready!” Now that is the Mary Ann that Joy, Terry and Cherri remember. I just laughed and told her that I liked her better when she was sleeping. She laughed too.

We both had trouble getting to sleep last night. I suspect a change in the weather and the barometer might have played into it. I think it was some time after 1am that we finally went to sleep. Mary Ann woke up very early. There were trips to the commode, a snack, a period of time she sat in the living room in front of the television while I slept.

While it was not so apparent in the early times she was up, when she got up around 8am, things did not go so well. I had asked her to stay lying down while I showered so that I would not have to come running at the sound of the thump, evidencing a fall. When I got out, as usual, she had not stayed put and was in the living room in her transfer chair.

She seemed pretty confused. Her eyes were tightly shut. She was talking as if to people. Earlier she had seen Granddaughter Ashlyn. This time she was asking Granddaughter Abigail to show her what she was drawing. They, of course, live ten hours away in Kentucky. She said a number of things to me that I just couldn’t connect with. She got irritated with me for not understanding what she was talking about.

I got her to the table for pills and yogurt. Her eyes remained closed. I put the pills and water and yogurt in front of her. She had begun putting her fingers together as if grasping something and putting them to her mouth as if eating. During our interaction about taking her pills, she seemed to be convinced that she was already taking them, even though there was nothing in her fingers. I offered to help her take them, and she refused, again, seeming to be convinced that she was taking them. After the interaction with which I started this post and the laughter that came with it, she was willing to allow me to put the pills in her mouth, a few at a time, give her water and feed her the yogurt.

She kept her eyes closed and would on occasion talk about things she thought she saw, seemingly unaware that her eyes were still closed. Zandra, her bath aide, came to give her a much needed shower and wash her hair. I usually wash it at least once between Zandra’s Wednesday and Monday visits. Mary Ann had been in bed almost the entire time. When she was up for the couple of hours three or four times in the last three days, I offered many times, but she declined having her hair washed.

Zandra reported a comment Mary Ann made as Zandra was getting her cleaned and dressed. Mary Ann mentioned how tired she was and how much she was sleeping, and then she told Zandra it was the dementia. That comment surprised me since I just did not expect that level of self-awareness. I talk about our situation in front of Mary Ann, using language that matches what I understand to be so. Trying to spare her by only talking about the facts in whispers away from her hearing seems to me to risk reinforcing mistrust and encouraging paranoia, which is one of the expected symptoms of this strain of dementia (Parkinson’s Disease Dementia, a Dementia with Lewy Bodies – different from Alzheimer’s Dementia).

Mary Ann has identified the probable cause of the daytime sleeping. That is one of the symptoms of Lewy Body Dementia. As the disease progresses, often the daytime sleeping increases. I seem to recall William posting online that Cindy (he calls her Sweet Cindy) is sleeping about 21 of the 24 hours each day.

Mary Ann laid down for a nap right away after Zandra got her cleaned up and dressed. After a while, one of her pill timers went off. I always give her the one of two pills while she is lying down, lifting her head, and putting the straw to her mouth. In the past it has always worked to do the pills that way. This time, while she was alert enough to indicate that they were still in her mouth, she was not able to suck on the straw. I had to sit her up completely and put the cup to her mouth to get the water in so that the pills would go down. Struggling with pills, both this morning and during nap time, is a distressing development, hopefully, a temporary one.

Needless to say, I called and canceled the appointment with the Dentist. She slept soundly through that entire time. Trying to force her to get up when she is sleeping as she is now, is not much of an option. She pretty much can’t be aroused, or if she is, she can’t track mentally, her head hangs down and she can’t get her balance or her feet to move.

I am not ready to accept that our new normal will include constant hallucinations and sleeping entire days at a time, but I do recognize that we will probably need to accept a new normal of some sort, one at a significantly lower level of functioning than about ten days ago. It is what it is. We will adapt and find ways to live meaningfully with what we have.

Accepting a new normal does not mean there is no longer any option for improvement. While the long term trajectory of this disease is not good at all, the short term is very unpredictable. Dramatic changes for the better can happen just as quickly as changes for the worse.

It is a little after 2:30pm and she is still sleeping. She was able to take the last round of meds in our usual pattern, while lying down, with me holding up her head. She managed to use the straw.

As I sat on the deck yesterday, I concluded that I would rather be sitting there with her lying in bed, than be sitting there without her lying there in bed. If this continues, I don’t know how I will feel a week or a month or a year or an hour from now, but at the moment, there is nothing I want to be doing so much that I would prefer it to having her here with me to care for. Those of you who have lost a spouse know the profound loneliness that comes. With Mary Ann, even sleeping, here in the house, there is some loneliness, but not of the deep and painful sort.

I gave Mary Ann her last pill at about 5pm, and she finally got up. I consider myself a reasonably intelligent person, but I managed to completely blank on an obvious reality. She needed to have been awakened and taken to the bathroom. Her pad was full to overflowing. Zandra had put a daytime pad on, not realizing that she would end up in bed for most of the day. Needless to say, the sheet and her jeans needed to be washed. Since I put Chux (a plastic pad with absorbant paper on top) under the bottom sheet to protect the mattress pad, the clean up was not too bad. At this point, I think we can put away the daytime pads unless things change for the better.

She is not eating much no matter what I offer, up to and including ice cream. Her ability to walk has diminished dramatically. She went to bed at about 8pm and has been restless off and on for a while. It is now about 10:30pm, and for the moment she seems settled. We will see how the night goes.

Addendum: She just stirred and decided she wanted to get dressed. She didn’t want to spend the day in her pajamas. I explained that it is after 10:30pm, and it would be hard for me if she was up for the night and slept during the day. When I asked what she would do if she got up and dressed, she said she would read. Finally, she decided she could watch television in the bedroom without getting dressed. I assured her I would be heading to bed soon. This may be a long night.

November 9, 2009

Hospital Stay and Days Following: Reflection

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Sources of Strength, Uncategorized | Tags: Burdens of Caregiving, Care Receiver's Friends, Caregiver's Source of Strength, Caregiver's Therapy, Caregiving Spouses, Consequences of sleepless nights, Coping with Challenges, Feelings of Care Receivers, Feelings of Caregivers, Freedom for Caregivers, Friendships that endure, Help Needed for Caregivers, Hospital Stays Increase Dementia, Incontinence, Lewy Body Dementia, Meaningful Caregiving, Parkinson's Disease, Parkinson's Disease Dementia, Practical Caregiving Ideas, Quality of Life, Value of Friends' Support |
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Mary Ann slept reasonably well last night — back to a more normal pattern of getting up to use the commode. She was up before 6am for some food, but was willing to lie back down for a while. She got up at 7am for food and pills. She did pretty well, handling most of the consumption on her own — just a little help with some of the yogurt. She continues to be able to hold her head up, at least for a while. She is communicating a little better.

She was up for about two hours and is now back in bed. Yesterday late afternoon she was up for about two and a half hours. I am assuming that as time goes by she will be able to stay up during most of a full day, but there are no guarantees that will be so. I am certainly feeling better about how she is functioning now than I was two days ago. There is a way to go yet to regain the pre-hospital norm, if that is to be the case.

One of Mary Ann’s friends from Junior High days is celebrating her 50th wedding anniversary today. This was the 50th anniversary year of Mary Ann’s graduation from East Aurora High School East High is, of course, an arch rival to West Aurora High from which I graduated a couple of years later. We have been married almost 44 years — and they said it couldn’t work, a girl from East High and a boy from West High.

Cherri is thrilled with the celebration. In these times, it is a remarkable thing to have longevity in a marriage. They have children and grandchildren that bring them great joy. Cherri shared words of love and concern for Mary Ann, recognizing the contrast between her mobility and the options that mobility provides and Mary Ann’s plight. She and Joy and Terry, along with Mary Ann made up a foursome to be reckoned with. When they are together it is as if not a day has passed since they hung out together so many years ago. They all care very much for Mary Ann and hate seeing that feisty lady they have known, trapped in a body that won’t cooperate and diminishing in mental acuity. She has had such a wonderfully wicked sense of humor that could get you when you least expected it.

Along with the sadness at what has been lost, is something that is not so obvious, something that is important. It is something that has not been lost, but found. It is something that is there, available to all of us if only we will pay attention. It is something that our situation makes more visible. It sounds very trite to say it this way, but it is not at all trite.

Mary Ann and I live at the very core of life all day long every day. There is deep and profound meaning in the simplest of tasks. There is not a trivial moment in our days. While there are great limitations on the options available to us for activities, there is no limit to the value of our time. Our lives are filled with meaning. Whether there is sleeping going on or time on the commode or eating or going in the car or sitting on the deck or watching the computer screen saver move through pictures of our Grandchildren, there is value attached to each moment.

Anyone who has lived long enough to have gone through painful times is likely to be aware of the meaning attached to the time we have. Every moment we are in, contains all the time there is. It is a moment of life, which my spirituality understands to be a moment intentionally given by the Someone who gives us life.

While the heart of Christianity often gets clouded by caricatures shaped by the loudest voices who seek to define what Christianity is, the truth is, it is a relationship created and sustained by a kind of love that is ultimately beyond human comprehension. It is not a set of behaviors or a political position but a connection with One who produces good behavior to the degree we don’t ignore that connection. The core is the relationship, not the behavior.

Back to Mary Ann’s day. Edie spent the morning with her. Apparently, Mary Ann got up and spent the morning engaging in conversation as well as watching and talking about the preparation of the meal. We enjoyed a hearty meal, watched football for a while (of course, the Chiefs lost again), and then Mary Ann decided to lie down again.

Tonight is the time we usually attend a worship service. At the moment, I am not very confident that will happen. She has not yet dressed today. I would be surprised if she would tolerate preparations to be out with people. We will see. It is still a couple of hours to Service time. She is sleeping soundly at the moment.

As expected, she was not ready to try heading out in the car and attending the Service. She was up for a while, ate a little, watched a little television and headed back to bed.

Tomorrow begins with the bath aide and includes an afternoon trip to the dentist. It will be interesting to see if she has the stamina to do both.

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