Have aliens come and stolen my Mary Ann, replacing her with with a look alike imposter???  She ate the whole thing!  Mary Ann ate the chicken salad that I made from scratch with my own culinary-challenged hands. 

On three or four different occasions in the last few days, I put a couple of spoonfuls of that home-made chicken salad on her plate.  It is shredded chicken (from the freezer, prepared by our Daughter Lisa when she was here), grapes, pecans, celery, Miracle Whip, some fresh dill and a little onion powder mixed together.   She ate every bit of it every time I put it on her plate.  Potato chips and Pepsi rounded out the meal each time. 

If that is not enough, when I listed the options for supper tonight, she chose the beef, potatoes and carrots I had cooked in the crock pot the other day — and she ate it!!!  Now do you understand why I have posited the alien imposter theory?

On another matter, last night I asked three questions of the people in the online Caregiver Spouses of those with Lewy Body Dementia: 

The first question was about Mary Ann’s hair.  It seemed as if there was more hair than usual coming out on the brush when washing and combing her hair recently.  I asked if others’ Loved Ones had experienced hair loss.  Some Loved Ones have lost their hair, with no explanation from their doctors.  Group members mentioned the dry air at this time of the year, stress, too much washing, thyroid problems, and Discoid Lupus Erythematosus (DLE).  Since the problem seems to have subsided, I suspect it was just a natural occurance with no long term implications.  Needless to say, I will pursue it if there is more evidence warranting it.   Mary Ann’s hair is thick and dark with some gray mixed in.  She routinely gets compliments on how nice it looks. 

The second question had to do with disinfecting items in need of washing.  At the risk of being indelicate (I have been painfully explicit many times before), when there is need for cleaning matter (euphemism) off clothing before putting it in with other wash, I use Clorox in the water in a downstair sink we had put in for such things.  The last time I used the Clorox to disinfect some clothing, it was new red plaid pajama bottoms from LLBean.  I moved very quickly in the task of putting the pj bottoms in the water, swishing them around to get all the matter off, then rinsing and squeezing a number of times to get the Clorox water out of them.  Needless to say, they magically turned from red plaid to pink plaid pajama bottoms.  The suggestions from the group included OxiClean and Vinegar.  After some checking, it appears that OxiClean may and Vinegar certainly does disinfect pretty well.  I will probably substitute a 5% vinegar solution for the Clorox water when this need arises again. 

The third question had to do with disposable underwear.  The latest marketing tool is to replace unisex disposables with disposables specifically for men and for women.  The problem is that the women’s are made to be more comfortable for daytime use by enlarging the leg holes.  The net result is that  while they may be fine when up and walking, they leak badly if there happens to be a daytime nap.  Daytime naps are routine for many who need disposables.  I asked the group for suggestions of disposables that work for them.  I have had no responses to that one yet.  I suspect one reason is that the vast majority of those in the online group are women caring for their husbands.  The needs in this area are gender specific. 

One other note concerns a member of the congregation that I served before retiring.  He has had Parkinson’s longer than Mary Ann, over thirty years.  He fell and ended up in the hospital.  He has a strep infection that is interfereing with the healing of the arm on which the skin was broken when he fell.  In Emailing back and forth with his Daughter, I noted that people in her Dad’s and Mary Ann’s circumstances live in a narrow margin of functionality.  This fall and infection are taking Norm to the Rehab Unit of a local nursing home for a while.  He has been declining for the past few weeks.  Apparently, the treatment for the infection is helping him regain much of what he has lost in the last six months.   

In a sense, we are living on the edge.  In reality, all of us are living on the edge.  Anything can happen at any time.  Those who are in circumstances like Norm’s and Mary Ann’s are just more aware of it.  We can choose to live in terror of what might happen, or we can just choose to live. 

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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.

If you want to write a comment about this or any of the posts on this blog, look to the column on the right side of this page, titled “Recent Posts,”  click on the name of a post and you will find a box at the end of that article in which you can write a comment.  Clicking on the title of the post you are reading will accomplish the same thing.  Comments are appreciated.