The oxygen is now running.  It took the oxygen and only one very small dose of Morphine to relieve the heart pain this morning.  Since then Mary Ann has been in bed 100% of th time.  She did not want to sit up any of the times we asked her today. She seldom moves at all, but just lies still, with her eyes open most of the time.

Daughter Lisa and I changed her while she remained lying in bed.  At this point it is not so much how difficult it is to help her in the bathroom but how hard it is on her for us to drag her around that has led us to that approach.  Each thing in its time.  We now have briefs that tape on the sides.

Mary Ann did take some sips of water at various times.  Earlier today, she ate a single serving container of tapioca.  That has been the sum and substance of her nourishment today.

Words are few and far between and barely audible when they come.  We have given up trying to give her any medicine.  She just can’t/won’t take it.

Daughter Lisa was due to leave tomorrow.  She has decided to stay longer.  Our Son-in-Law Denis will be arriving tomorrow evening.  He will stay a day and then take the girls with him back to Louisville, KY.  Gratefully, he has a huge, very close family there, with lots of Sisters and Nieces waiting in line to help with the girls while he is at work.

Needless to say, I am relieved that she will be here at least for a while as this new reality sets in.  Lisa has been a Certified Nurses’ Assistant [CNA] and later an Administrator of a large multi-level Senior Care complex.  She is checking carefully for any red spots that could develop into pressure sores, making sure her Mom is shifted regularly.

Son Micah opted to come for the day today. He dropped out of a BBQ contest in which he was enrolled to spend the day here.  This is hard on both of the kids.  We are all helpless to do anything about this, so we just hang out together, staying close to Mary Ann.  This could go on for some weeks.  The kids will have the challenge of determining when to be here and when to be taking care of their primary responsibility to their respective families (who are wonderful and understanding).

I was planning on attending a wedding this evening and offering the mealtime prayer at the reception.  In fact, that was one of the reasons Daughter Lisa had planned on returning home on Sunday rather than Saturday, so that she could stay with her Mom, allowing me to be away from the house for the wedding.  When all those plans were made, none of us had a clue about what would be happening.

We  have seen a Guiding Hand in the way things have been playing out.  Mary Ann’s decline came on suddenly only days before Lisa’s scheduled visit.  The girls were scheduled for a sleepover with friends, so they were not here last night to be disturbed by the Hospice Nurse and the oxygen delivery.  When there are huge things that are out of control, it is not unusual to notice little gifts that come along the way.  They are signs that we are not alone in this journey.

Tonight’s wedding was the wedding of Christine and James.  Chrissy will soon be an ordained Pastor.  I have enjoyed watching her grow in her commitment to that service.  On occasion when she was in town, as she began and continued her training, we would talk over coffee.  Those conversations always stretched me intellectually and Spiritually.  She has been in Africa a couple of times trying to make a difference for good.  She has a view of humanity that is not limited by national boundaries or ethnicity.

I didn’t like missing the wedding, but, just as I mentioned in an earlier post when I had to miss Katie and Jacob’s wedding, while they spoke their vows I was doing what they were promising.

Time for some rest.

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We are really not liking this!  The four of us, Mary Ann, Lisa, Micah and I are in limbo.  Now we know more about the landscape of limbo, at least this one, but it is still limbo.

Mary Ann has not yet begun actively dying.  Vital signs are not falling into the pattern of those dying of physical illnesses such as Cancer.  That could be comforting, especially to kids who live out of town, hoping to have time to get back when the end is near.

Of course, it is not likely to work that way with Mary Ann.  Apparently, dementia patients often don’t play by those rules.  They may have solid vital signs up to the moment they die.  When the mind precedes the heart or other organs in precipitating death, it can just happen whenever it chooses. There may be no warning.  It just goes with the territory.

I have become accustomed routinely to listening carefully when Mary Ann is sleeping or unconscious.  I listen to see if she is still breathing.  There is a new level of awareness of how easily my listening could reveal that the end has come.  Even after Hospice Nurse Emily said that, I still expect there to be more preliminary signs that the end is nearing. Many of those in the online group of spouses with Lewy Body Dementia, have described a traditional shutting down when their Loved Ones died.

When Son Micah asked if Mary Ann was now on a trajectory of probably weeks, Nurse Emily said that what has been happening suggests that that is a correct assessment of her condition.  She quickly added the disclaimer, that things could change and Mary Ann could bounce back to better health for a time.

We talked about how much of what is happening might have more to do with the medicine than the disease process itself.  Nurse Emily reviewed what has been happening in these past days, noting that Mary Ann has not had many of her pills on a regular basis.  While the meds may be having some impact, the trajectory of the decline seems pretty clearly to be the disease process bringing her to the last stage of the disease.

In responding to my request for either some form that is easier to administer or permission to drop Mary Ann’s Crestor for cholesterol, the doctor suggested discontinuing it.  He said we could crush it if we wanted to continue administering it.  The truth is, I haven’t yet tried to give her any of her night time meds.  At this point in the process, Mary Ann’s comfort is the prime issue.  Any of the meds that will help keep her comfortable, have priority.

Even food is optional.  If Mary Ann wants some thing to eat, or will take it if put to her lips, she will eat.  If she indicates she does not want the food, that is her choice to make.  If she will take water or juice, we will be sure she has all she wants.  If she will not, that’s that. When at this stage in life, the body needs very little to sustain itself.  She will know what she needs and when — and if she wants to have it.

While she would not so much as take a drink of water most of the day today, late this afternoon, whe she started moving around in bed, Daughter Lisa got her up, helped her with personal needs, and started feeding her applesauce.  She ate about a cup of applesauce followed by a small piece of ice cream pie, followed by some water.  Lisa fed her the applesauce and I fed her the pie.  She was up for a couple of hours.  We are suspecting that the Granddaughters’ activity helped stimulate her to stay present with us for such a long time. I took her in to lie down when Nurse Emily came for the family meeting.

There is absolutely no predicting how this will go.  Mary Ann is not about to follow anyone’s expectations for the path she will take.  This will happen on her terms, and no one else’s.  God’s role was making her, not telling her how and when to die.  Gratefully, God’s love for her is without limit, just as it is for the rest of us.

With that said, those of us who love her certainly are in limbo.  It is too soon to begin grieving her loss.  She is not gone.  It was sort of odd to hear Nurse Emily speak to us words that I have spoken to hundreds of others in forty years of ministry.  She urged us to work through our feelings and when we are ready, to share with Mary Ann our love for her and let her know that we will be okay when she decides she is ready to go.  It is not urging a person to die, but giving permission to go when the time comes.

Mary Ann took a few sips of water when I went in at about 11pm.  I gave her a heart med and one that helps her sleep.  She seemed to manage swallowing them.  I will be very interested to see if leaving out so many meds will affect her sleeping pattern.  I hope we can find our way to restful nights as often as possible in what time we have left together.  That would be good for both of us.

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I simply could not get her pills into her mouth and swallowed this morning.  It is the first time this has happened other than many weeks ago when she slept through a few days.  She drank a couple of ounces of Cranberry juice as I prepared to give her the pills.  Then her lips sealed shut and she ceased to be responsive at all.  I was going to try to force the pills into her mouth, but when I determined that she could no longer drink the juice or water, I knew that I could not risk her choking on the pills.

Yesterday she stopped swallowing after swallowing her pills and eating a few spoons of yogurt. At lunch yesterday, she stopped swallowing after a few bites of food.  Last night she managed to swallow her night time pills.  Today, she stopped swallowing anything, including water for the entire day.  She got no pills, no food, no water.

She sat up some, with the saliva coming from her mouth much of that time.  Our Son, Daughter-in-Law and Granddaughter arrived in the late morning to spend the day with us.  For a while after they arrived, Mary Ann remained in the chair.  She was pretty much unresponsive, even to our Son, who can always get a response from her.

After a while I took her into the bedroom to lie down.  It became apparent that we needed a trip to the bathroom.  Our Son has been through helping his Mom with bathroom duties, so he helped with the project.  It was a comforting to me for him to have a first hand experience of just how difficult that task is.  It was hard even with two of us doing it.

After that, Mary Ann settled into bed for a long time.  I enjoyed the time with Son, Micah, Daughter-in-Law, Becky, and Granddaugher Choe (11yrs old).  We spent most of the day watching the large screen wildlife display provided by the sun room and waterfall at the back of our house. I realized I have little to talk about other than Mary Ann and the birds.

We talked about the current change in Mary Ann’s situation.  It has profound implications.  We have both signed Living Wills excluding a feeding tube.  If Mary Ann is no longer capable of swallowing food, we have just come to the end of a long journey.

Son Micah and Daughter Lisa (in Kentucky) talked on the phone for a while so that Lisa would be fully aware of what is going on.  She and the girls are due in this Wednesday evening to stay for a few days.  This scared all of us.  We are not ready for things to move to the last stages.

I phoned Hospice to talk with the on-call Nurse.  When she responded to the page, I explained the situation, voicing special concern that Mary Ann was not able to take  her morning meds.  The Nurse mentioned that in some cases meds could be given rectally (whoopee!).  She said she would phone the Pharmacist and check to be sure of that. When she called back, the Pharmacist had told her that the meds Mary Ann is taking are not ones that have been shown to be effective when taken rectally.  We could do it, but it would not be likely to do much good, if any.

It seemed reasonable to accept one day of no meds, but that certainly could not continue.  I concluded that I would make one attempt at giving them to her orally, and if that didn’t work wait until morning.  I asked the Nurse to connect with our Hospice Nurse in the morning so that we could talk through options.

It has been a pretty tough day contemplating what might be coming sooner rather than later.  I went in regularly whenever we saw on the little video monitor that Mary Ann was moving at all.  Each time I asked if she wanted some water.  At this point I am not sure of the time, but around the supper hour or a little later, she was moving some.  I went in and she took some water and swallowed it — the first time since the few swallows of juice first thing in the morning.

When I asked her a couple of questions, she was able to answer, “no” (more water? get up?).   Not long after that she stirred again and this time was willing to get up.  I asked if she was hungry.  She said, “yes.”

Then came a very pleasant surprise.  I should have known!  On a whim, when returning from getting some coffee, I picked up a Baskin and Robbins Grasshopper Pie.  Mary Ann ate every bite of a good-sized piece of that pie.  She swallowed every bite, and drank lots of water afterward.

She responded a bit to Micah after that.  The Kids headed back home.  Mary Ann soon went back to bed.  I decided I would act as if she had no trouble swallowing and follow the usual routine of telling her what I was doing, sitting her up on the edge of the bed, putting the pills in her mouth and giving her water to drink through a straw (the norm for how she drinks).  She swallowed the pills!

I did choose to reduce the Seroquel from the 150mg she has been taking since January, to the 100mg she was taking before that.  Since it has become absolutely clear that the Seroquel exacerbates the problem of hallucinations, and since one of its main purposes is to produce sleep (too much daytime sleep in the last days) it seems reasonable to try reducing this.  In some folks who have taken Seroquel, it has produced a powerful drugged state.  We are living pretty much at the end of our options, so I am giving it a try.  Of course I may regret doing so depending on what happens.  There is just no clear and standard approach to this form of dementia.  It is just too unpredictable with no consistent responses to medications.

One characteristic of forms of Lewy Body Dementia is that people can present with symptoms that cause Hospice or whoever is doing the medical care to suggest that the family be notified that the end is days or hours away.  Then the patient can turn around completely for no apparent reason and return to relatively full functionality.  With some folks in the online LBD Spouses group that has happened more than once.

I don’t know if we have just come back from the edge to have lots of time yet, or if tomorrow will bring us back to the edge.  When I got out of College and Seminary at 26 years of age, I knew so much.  Now at 67 I know so little.  What happened??

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I forgot to put the clothes in the dryer and it is well past midnight.  I thought I was going to just write a couple of sentences of update, but I don’t want to leave wet clothes in the washer overnight.  There will be items that need to come out of the dryer immediately and hung on hangers to keep from getting wrinkled while sitting overnight in the dryer. I will have time to write more than a short update.

When I was a child, I remember routinely finding a plastic bag of wet clothes in the refrigerator to avoid mildew until they could be ironed. The rest hung outside until dry — even in freezing weather.  In rainy or snowy weather they would be hung in the basement to dry.  By the way, Mom ironed everything, of course shirts and blouses and pants and skirts, but also sheets, pillow cases, handkerchiefs, T-shirts and underwear.  I am unable to run the iron.  It is an unfortunate disability that has no cure.

Today Mary Ann got up early and just headed out the door of the bedroom.  By the time she reached the door, I woke from REM sleep containing one of those pastor dreams in which there is a service that I am leading and I am not prepared, or something that I need can’t be found, or I have lost my place in the service book.  I guess I should thank her for ending the dream, but I certainly was not done sleeping.

I moved quickly and got her seated so that I could put on something and take her out for food and pills.  Almost immediately after eating, she agreed to lie down in bed for a while so that I could get a little more sleep.  She ended up sleeping for close to three hours.  I got about an hour and a half more of sleep.

After she got up, I gave her a sandwich for lunch.  Then came some reluctant intestinal activity, needing my assistance.  When that was done, she was very tired again.  She had fainted a couple of times before and after lunch.  She slept again, for about an hour and a half. Oddly, when she awoke, she was convinced that it was early in the morning.  It was actually after three in the afternoon.  She didn’t seem to believe me at first.  It took quite a while to finally convince her that it was not early in the day.

While she was napping Arlene came over with a plate full of fudge and candy she had made.  Wow!  Is that stuff good!  Later Glenn and Margaret brought over a plate of goodies.  They also are very good.  Yesterday afternoon, Don had brought over freshly smoked salmon and bread.  In each case we were the recipients of a wonderful gift of food and, in addition, some pleasant conversation — especially enjoyed by this retired pastor suffering from Diminished Conversation Opportunity Syndrome.

This evening our Kids from Kentucky (staying with us) took us out for an Anniversary Dinner.  Our little five year old Granddaughter, Ashlyn, was diagnosed with a Strep infection this morning, so she was not a happy camper today.  She was feeling well enough for us to go to Famous Dave’s and enjoy a nice meal.  I ran into one of the young people from the congregation I served here, reminding me just how much working with Youth meant to me over the years. (The majority of my 407 FaceBook Friends are Youth.)  Juli is a beautiful young lady inside and outside, with a heart of gold.  Her Mom is one of the Volunteers who stays with Mary Ann.

Dryer is done!  So will this post be done soon.

One interesting sidelight today is that Denis bought a Wii for the family.  They tried it out this afternoon.  They are going to love playing that, especially when they use it on their large screen digital television in the large family room at their house in Kentucky.  We tried to help Mary Ann do some bowling, but the coordination just isn’t there.  I have often thought about how beneficial it might be to have a Wii to help Mary Ann stay active.  She loves games.  I have been waiting for clear evidence that it will actually accomplish the goal.  It is too expensive to buy and then find out it is not helpful.

An update: Daughter-in-Law Rebecca’s Gall Bladder surgery went well today, and she is at home, feeling good (according to the last emailed report).  The email was titled “Weight Loss Program” using the removal of organs as the means.  She is a Corker!

Time to edit and get some rest!

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On Sunday it was a real joy to have all nine of us in this small immediate family together to eat and talk and open presents.  Each of us will incorporate corporate worship in the our celebration later in the week.  For that day our time was spent celebrating what the Lord has done in our little family. 

I am sure Mary Ann enjoyed the day, even though she headed in for a nap right when our Children and Grandchildren arrived.  After a couple of hours of preparation for the meal, Mary Ann got up to join us for a late lunch.

We now have a spotlessly clean oven!  We were able to reheat the Prime Rib that was “smoked” two days before in the oven that had Honey Crunch Pecan Pie deposits on the bottom to flavor the smoke.  This time there was no smoke!!!  That is especially good since our Son and Daughter-in-Law brought the ingredients for the Triple Fudge Cake they often make for family gatherings.  Yes, they brought ice cream to eat with it.

The directions for the self-cleaning oven made it absolutely clear that all the pools and puddles and burnt patties of stuff on the bottom of the oven needed to be removed before using the self-cleaning function.  I had, of course, figured that out before reading the directions, after having smoked both a pie and a Prime Rib.

Saturday’s preparations for the family gathering and meal on Sunday went reasonably well.  Putting together the grape salad (extremely good), and the cheesy potatoes was not difficult.  The combination of Mary Ann’s napping and a long lunch out in the mid-afternoon pushed the preparations very late in the day.  There were some other household chores.  As a result the present wrapping ended up going until 1:30am, long after Mary Ann had gone to bed.  It is at times like this that I really respect single parents who take care of everything themselves, including all the needs of their children.  It is surprising to discover how fast small and seemingly insignificant tasks can add up to proportions almost impossible for one person to manage.

Again, this is a sexist observation, but nonetheless true for me.  As a male Caregiver, tasks that my Mom did when I was growing up, tasks that Mary Ann did, enjoyed doing and did well, I have found to be very difficult.  They are not necessarily difficult tasks by themselves.  It is the comfort level with doing them that is the problem.  Shopping for Christmas presents, wrapping them, getting and sending Christmas cards, putting out Christmas decorations, as well as food preparation don’t come naturally to me.  They are just uncomfortable enough for me that I come up with all sorts of reasons to postpone dealing with them.  The Christmas cards are still in the unopened boxes sitting in a bag on the floor.  I should be working on that instead of writing this post!

Mary Ann enjoyed the day Sunday, but got very tired late in the afternoon.  There was a much anticipated Choral Eucharist at church last evening at the time we usually worship on Sundays.  It was clear that Mary Ann would not be able to manage the Service.  She was in bed for the night not too long after 6pm, the same time the Service started.

This time there was no option of my leaving Mary Ann at home with the family.  Our Daughter had surgery two weeks ago and could not help Mary Ann physically, Our Son could have helped with her, but he had to take our Daughter-in-Law home since she is having Gall Bladder surgery on Tuesday.  She was also very tired.  As a result, there was no one at the house other than me who could take care of Mary Ann’s personal needs.  I missed the opportunity to enjoy a wonderful worship, our choir and soloists, instrumentalists, bell choir, our Organist-Choirmaster, all of whom are outstanding.   The quality has always been far beyond what would be expected for Volunteers.  It always sounds very professional as well and meaningful Spiritually.  The Christmas celebration has a completely different feel as a retired pastor.  While we will attend church on Christmas Eve, the services with full choir and soloists come too late in the evening for Mary Ann.

Gratefully, what the celebration is about transcends any specific event in that celebration.

The Christmas celebration meal was okay, but the Prime Rib did not go over as well as I had hoped.  The rare look of a good piece of Prime Rib is not appetizing to everyone, especially little ones.  Thank goodness for Kraft Macaroni and Cheese.  Actually, our Son, Micah, and Granddaughter, Chloe, would probably not be alive today if it were not for Kraft Macaroni and Cheese.  Our Daughter, Lisa, found the microwave to be what was needed to get the red out.  She admits to having an aversion to meat that provides any visual evidence that it was ever part of a living animal. 

Today has been a sort of recoup day, with minimal activity.  Mary Ann again needed to crash for a about two and a half hours mid-day today, even though she slept well last night. 

Mary Ann continues to seem less functional and engaged, and more tired than in the recent past.  I am not sure about that since I am with her all the time.  One particularly bright spot was an email from Marlene, one of the Kansas City Crew, who took a picture of us on Friday.  Mary Ann was smiling.  It seems as if it has been an eternity since Mary Ann was caught smiling in a picture.  If I can figure out how to do it, that picture may make in on my FaceBook page. 

It is a very good thing to have our two little Granddaughters here at the house for a few days.  There have been plenty of Grandma and Grandpa hugs to brighten our days.  Our Daughter, Lisa, is deeply caring and her love for her Mom is apparent in everything she syas and does.  She is also a tremendous support to me.  Our Son-in-Law, Denis (yes, spelled with one “n”), is a man of great character, who is willing to do anything he can to help us. 

Whatever our challenges, our Children, their spouses and our Grandchildren provide us with joy beyond measure.

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Maybe this will be our new Thanksgiving tradition, barbequed ribs, pork and brisket with stuffing on the side.  The meal was tasty, lots of food, great desserts, both pumpkin pie and Baskin & Robbins Grasshopper Pie for Granddaughter Chloe’s birthday treat.

Mary Ann seemed pretty tired today, especially in the morning before the kids came.  She did not talk much during the day, but Son, Micah, got her to laugh a few times. He has a way of connecting with her that is fun to watch.

Chloe is, of course, a breath of fresh air.  She is warm and engaging always making clear to both her Grandma and her Grandpa that we are loved.  She is such a sweety.

Becky brings a brightness and positive energy with her that lifts us up.  She treats us with love and respect, always thoughtful of our unique circumstances.  She always provides relief from the cleanup task by insisting on doing it for us.  That gift does not come from some automatic domestic role expectation, it is an intentional and thoughtful act of generosity, offering me some respite from the task.

Chloe and I did a little bird-feeding together.  Micah helped with a clean up of some of the Cypress needles that had fallen into the lower area of the pondless waterfall installed last summer.  I described to them plans for a possible remodel to the back of the house that would provide additional indoor space with lots of glass so that we could enjoy the waterfall and the birds more than we can now, since there is no easily accessible view of the water fall from inside the house.  No decision is made on the project, but the decision-making process is in motion.

Later in the afternoon, Micah shared something he had been thinking about.  He has plenty of access to information on my side of the family in terms of health history.  My siblings are all living, and over the years he has had a fair amount of contact given the geography with cousins.

Micah noted that he has very little knowledge of his Mom’s side of the family.  Only Mary Ann’s Mother was still living when Lisa and Micah were born.  Two of her three brothers died, one of Lung Cancer and the other of Acute Leukemia, when Micah was almost too young to remember.  The third brother chose to alienate himself completely from the family at the death of their Mother.  It is pretty much too painful for Mary Ann even to talk about.

As a result, Micah did not have a chance to get to know her family other than her Mother.  The same is so for Lisa, although, since she is three and a half years older than Micah, she probably has a few more memories of her Mom’s brothers.

What developed from the conversation was the idea of our traveling back to Northern Illinois to visit with Mary Ann’s two deceased brothers’ families to hear stories about them that will help fill in that void of knowledge.  The email has gone out to see if there is a possibility of having a family gathering to reminisce and share stories.

After a nice time on the phone with our Daughter Lisa, who shares her brother’s interest in connecting with their Mom’s family, Mary Ann has settled into bed, and I have been thinking about Mary Ann’s family connections.  She loves and is loved by her family.  The death of her Father, a few weeks after we were married, the deaths of her two brothers (each one at the age of 51), being hurt so deeply by her other brother as that relationship was severed, and finally the death of her Mother, left Mary Ann feeling very much alone.

Her Sisters-in-Law and her Nieces and Nephews seem to love and respect Aunt Mary very much.  She is not only separated from them by geography (a ten or twelve hour drive demanding two days of travel for us to get there).  She cannot talk audibly on the phone, or react quickly enough to maintain a conversation on the phone.  Sometimes she can’t get any words at all to come out.  She hasn’t been able to write legibly for the last few years.  She cannot negotiate a computer keyboard or control a computer mouse.  It is frustrating to her and to those who long to interact with her.

I hope something materializes that will allow our children a window into Mary Ann’s family, and a chance for Mary Ann to feel part of a family of her very own.

Tomorrow afternoon is the first meeting with our Cardiologist after the trip to the hospital for Congestive Heart Failure three weeks ago.  He was out of town at the time of the hospital stay.  I delivered to his office a letter and attachment requesting consideration of a change in meds that might help with the fainting while not raising her blood pressure when lying down.  I intend to report on that visit in tomorrow evening’s post.

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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.

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