About 4am Mary Ann was up.  Then again once an hour until a little before 8am when we got up for the day.  There was some of the intensity that can develop into hallucinations and hyperactivity, but this time it did not get out of hand.

I suggested that after I wash her hair we should head to Perkin’s, where she always orders some pancakes and a couple of slices of bacon.  She liked the idea.  She did have juice and yogurt with her pills as usual, just not the bowl of cereal.  It took a while to get the morning chores done today, so it wasn’t until about noon that we actually headed to Perkin’s.  Then we headed to the grocery.  Even though I had a list, we ended up with more than intended.  Gratefully, it was all things that we routinely use.

During the morning, I began taking her blood pressure every hour or so.  Her blood pressure had been so high and the Cardiologist’s office on Thursday that it was pretty concerning.  Her morning meds included a whole Midodrine tablet with the purpose of keeping her BP up so that she doesn’t faint, on account of the Orthostatic Hypotension that has given her such difficulty.

I started at 8:17am, 220/115.  Then ranging from one hour to three and a half hours apart after that her blood pressure measured, 200/110; 160/85; 185/100; 200/100; 200/105.  I took it one other time when it the systolic was 200, but I didn’t get the diastolic.

I could not bring myself to give her even 1/2 of a Midodrine tablet for her midday and suppertime doses.  I know it is not good to stop meds cold turkey, but it just seemed crazy to give her meds that raise her BP when it was already dangerously high.  One thing that caught my ear was the Cardiologist’s ARNP mentioning the fear of a massive stroke.  I had mentioned that Mary Ann already had a stroke.  Angela responded immediately with that concern.  Mary Ann’s stroke was not a bleed, but a cluster stroke (bits of plaque, probably from the ulcerated lesion on her carotid artery).  Nonetheless, it is hard to accept blood pressure that high without major concern.

The last couple of days there has been some swelling of her feet.  She has not had that problem very often.  When she has had swelling it has gone down the next day.  Two days in a row catches my attention. She has not had the heaviness in her chest and the ARNP, Angela, did not hear any crackling in her lungs, the sign of problems with fluid build up.  I need to remember to weigh Mary Ann in the morning to see if she has gained any weight.  That is another of the signs of potential congestive heart failure.

Today, the hallucinations have emerged a bit.  When she started eating tonight’s two scoops of Baskin & Robbins, she asked Ashy if she wanted any.  She saw our youngest Granddaughter sitting in the transfer chair a couple of feet away from her. That Granddaughter is currently living in Kentucky, not in our dining room.

One of the choices we have to make for the remodel/addition of a Sun Room at the back of our town home will be vertical blinds to cover twelve feet of glass for the sake of privacy.  Stacey brought a sample book of blinds that seem ideal.  Mary Ann has gotten in her mind that there is another sort of blind that would be better.  The problem is, it does not exist.  She looked through the latest Martha Stewart magazine and has become convinced that she sees there what we should choose.  She said there are many examples throughout the magazine.  I paged through the entire magazine with her. There were a couple of pages that had what she decided she liked.  They were pictures of an open porch with no blinds, just greenery, vines and bushes in the yard the porch is overlooking.  Then on another page she pointed to some large pictures of pink and red nail polish she said were the weights at the bottom of the blinds.

I could do nothing but tell her that we could not find blinds that exist only in her mind but do not exist in a way that we could actually buy and install.  This one is going to be tough.  I have absolutely no doubt that as long as we live, she will  routinely mention that we did not get the blinds she wanted for those windows and sliding glass doors.

Mary Ann’s ability to feed herself simply was gone today.  At breakfast, I assisted her as she worked to get the pills into her mouth.  I fed her the yogurt and held the cup and straw to her mouth.  At the restaurant at lunch, after I buttered them, cut the pancakes into bite sized pieces and put syrup on them, she got the fork in her hand with my help and was determined to eat the meal herself.  After an interminable amount of time, in which I had long since eaten my entire meal, she was still frozen in place with her hand lying in the pancakes, holding her fork wwith her head down near the plate.  On occasion she tried to get the pancakes up to and into her mouth, but no pancakes ever remained on the fork long enough to make it in.

I offered to help a number of times.  A couple of times I moved her hand with the fork in it so that some pieces were stuck on the fork.  She still could not seem to get them to her mouth.  Finally, she agreed to let me put each fork full into her mouth.  I did the same with the bacon, and with the straw in her Coke.  She ate most of the food on the plate.

At supper at home the same thing happened, she could not get the food to her mouth.  What seems strange to me is that she refused to let me help her even though we were in a completely private setting.  She ate almost nothing.  When I returned with the ice cream from B&R, she could not manage that on her own either.  After a while she did let me help her eat the ice cream.  I can only guess that she really likes pancakes, bacon and ice cream, so she allowed my help.  She was not so fond of the ham and cheesy potatoes at supper, so she was not so motivated to accept the help.

After getting back from the grocery this afternoon, I worked on filling the pill containers for the week, while Mary Ann watched television.  Her head was hanging on her lap much of the time.  One of the times I came over to help her sit up, she said one of the things that always triggers feelings of guilt and some helplessness.  I don’t remember her words exactly, but message was: I am bored sitting here all the time doing nothing but watching television, and I am just wasting away.  The implication was: you aren’t providing me with enough activity and stimulation to provide a decent quality of life for me.

I have talked about this in earlier posts.  I do feel guilty about not providing her with more attention and engagement.  My rationalization is that my life already revolves around her wants and needs all day every day and all night every night.   There are two truths that sort of intertwine as I process what she said.  One is that I really should do more to engage her attention and improve the quality of her days.  The other is that she has Parkinson’s Disease and Parkinson’s Disease Dementia and there are resulting consequences and limitations that I cannot fix.  I cannot give her the life that has been taken from her by the disease.

One goal in processing this issue is to keep my feet to the fire to try to come up with things that will keep her interest.  My hope was that the lunch out and the trip to the grocery would help.  Tomorrow I hope to get both of us going early enough to make it to the 11am worship service followed by a meal out at a nice restaurant that we both like.  Then later in the day will come the Superbowl.  She loves professional football and will enjoy watching the game.

The other goal in processing this issue is to accept my own flaws and imperfections and let go of the guilt and frustration that I am not doing more.  This has actually been a better than average week in one regard in particular.  I don’t think I have said a cross word to Mary Ann this week, nor have I felt like doing so.  Sunday morning’s experience seems to have had some residual effect.  I have no illusions that the change in attitude will remain, but it has felt good to set Grumpy Caregiver aside for a few days.

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There are a couple more of observations on Mary Ann’s appointment with the Cardiologist, Dr. M, on Friday that have come to mind today.  They were comments that he made may be of interest to other Caregivers and Spouses.  I mentioned them in passing in last evening’s post, but they seem to me to warrant more reflection.

As I mentioned in last night’s post, I had brought some information from the Internet on a medication that seems to offer a an option for keeping Mary Ann’s blood pressure up when she is standing, to keep from fainting, without raising it when she is lying down, the time it is already too high.

I had brought the information to his office earlier in the week to allow time for him to look it over.  He didn’t see it until he studied the chart before coming into the Examination Room.  He did take time to read what I had brought.  When he came in he said that he thought the medicine sounded very appropriate.  In fact, he indicated that he appreciated the information and would consider using for others when the need arose.

He added that he was not at all uncomfortable with patients bringing in information.  He did not perceive it as a threat.  Not only was I grateful to hear that, but it impressed me as an attitude that any of us, Caregivers or patients, should look for in a doctor.  Dr. M is confident enough in his role, that he is not afraid to deal with any sort of question or suggestion.  He will answer the question if he can and tell us if he can’t.  He will take suggestions when they are good ones, and explain why if they are not good suggestions.

I have the advantage of being in an online group of folks who have all had years of experience dealing with Lewy Body Dementia and often Parkinsonism if not Parkinson’s Disease itself.  The thoughts and ideas and suggestions there are very helpful since they have been tested in real world situations.  One thing may work for one person and not work for another, so the suggestions can only be just that, suggestions, when taking the information to the doctor.  Bringing an arrogant attitude to a doctor’s appointment is sure to produce an unpleasant result.  I suspect that doctors feel the same way about arrogant Patients and Caregivers as Caregivers and Patients think about arrogant doctors.

Another conversation the Cardiologist had with us was triggered by my asking if the Congestive Heart Failure that took us to the hospital actually demanded a hospital stay.  I told him about the tough time we have had since the hospitalization.  He suggested that if we come again, we ask if it would be possible to monitor her situation for a few hours rather than admitting her right away and starting a regimen of medicine administered intravenously. Again, if we explain our reason for asking rather than simply being demanding, it might impact the doctor’s decision.

Dr. M made the observation that doctors factor in their assessment of the Caregiver or Patient’s wishes concerning whether or not they want to be admitted.  I inferred from what he said that there is a sensitivity about whether or not Caregivers and Patients feel able to handle the situation at home, when deciding whether or not to admit the Patient to the hospital.

We have a pretty good system here at home for dealing with Mary Ann’s problems.  If (when) we end up in the Emergency Room again, we will evaluate carefully the value of being treated at the hospital against the toll a hospital takes on her ability to function.

In Mary Ann’s case, that might have meant getting the shot of Lasix and checking the Cardiac Enzymes for a few hours to see if they stayed the same or declined.  While sometimes I feel pretty overwhelmed by what is already needed to give the care that is necessary, I think we would even be able to deal with IV meds at home, as long as a nurse put the IV in, and a nurse would be on call in case it got pulled out and needed to be inserted again.  It is too bad that our system of medical care does not make more allowances for care to be given at home.   It is easier on the patient (more rest) and it would seem to be less costly.

The day was quiet.  PBS had a number of specials today with Celtic music.  I told Mary Ann that I wanted to take charge of the television today and watch them.  As I have metioned before, in our division of duties, she is the boss of the TV remote control.  She stayed awake to listen to the music with me.  She ate pretty well.  She has been a little restless tonight.  I hope she settles in for the night soon.

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First hugs from the Grandchildren answer that question.  It just isn’t easy!  Of the many things that are more difficult when traveling as a Caregiver, one of the most frustrating is the sole responsibility for packing. 

I remember hearing from single parents and those who have lost their spouse in death one of the most difficult challenges is making all the decisions without access to consultation.  There is no one to ask, should I let the kids do this or not — should I do that repair on the house? 

When packing for a trip, each has a certain amount of responsibility for remembering what to bring along.  There are endless decisions to be made.  What clothes should we bring so that we can be fitting for weather and formality of events.  If we bring one color/style of shirt or top, there need to be shoes and socks and slacks to match. 

Decisions are tough to make at best when one has the beginning stages of dementia and the other isn’t exactly on his best game.  I asked Mary Ann what she wanted to take along.  She wanted what I call her fancy pants and top.  The most hated black shoes with short heels are a part of that outfit.  I hate them (not too strong a word) because they are treacherous for her to walk in and they refuse to stay on her feet — I am chasing them constantly.  Their favorite trick is to pop off midstream in getting on or off an elevator, going in or out of a door.  Maybe it was due to a subconscious aversion to them that resulted in my forgetting to put in the knee high nylons that she wears with them. 

I work very hard at creating and sustaining certain rituals associated with medication so that there are no missteps in having what is needed, and administering it on time each day.  There are, of course, multiple prescriptions, many including more than one dose a day.  There are four compartments in each day’s plastic pill holder.  The morning one has six pills, the next one has six pills spread through the day, the next compartment has three pills spread through the day, and the night time compartment holds four pills.  There is also a powder to mix with water or juice four of the seven mornings each week.

All of it was in order for the trip, along with all the meds needed to refill the compartments for the last half of the trip.  At least that is what I thought to be true.  Saturday, after returning for the night to the extended stay motel, I began filling the compartments.  To my horror, there was no pill jar of Midodrine there.  That is the powerful med that raises Mary Ann’s blood pressure to keep her from fainting.  To stop cold turkey the next morning would be dangerous.  When I have adjusted that med in the past, the doctor has insisted that the dosage be raised or lowered a small amount at a time over many days. 

What had happened?  I had broken ritual.  The caps of the medicine bottles are numbered (Mary Ann’s idea many years ago).  Refills not yet in use have no numbers on the top.  I transfer the old cap to the new bottle when the old one is empty.  I had not put a numbered cap on the new refill of Midodrine already in use.  I grabbed only the numbered cap bottles.   

As I sat there Saturday night, looking at the pills, my panic shifted quickly to planning.  I am grateful for the national database maintained by Walgreen’s Pharmacy.  I phoned the nearest 24 hour Walgreen’s here in Louisville, KY.  They accessed our account in Kansas.  While we normally use mail order meds, the recent change in dosage had required a short term prescription at Walgreen’s.  There was a current prescription that could be filled here to rescue us from our distress. 

After I phoned and was told the refill would be ready in 45 minutes (about 11pm), I resumed filling the bottles.  To my chagrin, the Thyroid med bottle only had two pills left in it.  I suspect you can imagine just how horrified I was at my own incompetence.  This morning I suggested to Mary Ann that she might want to trade me in on a more competent Caregiver. 

This med will demand a new prescription from the doctor, since we have only the mail order prescription open.  The request is now in the hands of the Pharmacist who has assured us that by tomorrow afternoon it should all be worked out.  Gratefully, the two pills will cover Mary Ann until then.

The other travel trouble is less appropriate for publication.  It is in the area of the Caregiver’s role in waste management [see earlier post].  There has been a difficulty in that area demanding my hands on involvement for three days now, with two or three sessions each day.  Those problems seem much more troubling when dealt with away from home.

Since there is a need for a handicapped friendly environment in which to stay, the costs of traveling have increased dramatically.  Staying with folks in their home, no matter how gracious and welcoming they are, is often simply not an option.  Lodging costs add up at a frightening pace.  A trip that we have in the past made in one day, now demands an overnight stay, adding still more to the costs. 

It is a little embarrassing just how long it takes us in the morning to get ready to leave the room so that we can start the day’s activities.  The usual multiple times up at night make early rising a less than satisfying option.  The result is that there is not so much time for doing things together each day, the object of the travel. 

While this is a litany of struggles that come with traveling, the hugs more than compensate –  the smiling, enthusiastic little faces drain away the frustration and replace it with joy and satisfaction. 

Is traveling worth the trouble?  Yup!

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.

Count them, twelve prescriptions and three over the counter medicines make up Mary Ann’s daily regimen.  That translates into Mary Ann consuming twenty-one doses of that collection of meds most days. 

One medication is not supposed to be taken with food.  Another that is taken five times a day at two hour intervals, alternating between one half and one full pill, should not be taken with protein.  Another prescription is to be taken every four hours, a whole pill for the first two doses and a half pill for the last.  It is not to be taken too late in the day or if she is going to lie down for a nap (a need that comes without warning).  One pill is taken half in the morning and half at night.  Another is kept in her purse at all times to be used only if there is chest pain that is not diminished by taking a Tums, suggesting that it might be her heart.  She has to lie down to take it so that she doesn’t faint.  One over the counter med is to be mixed with juice or water and taken Tuesday, Thursday, Saturday and Sunday. 

One prescription is intended to raise her blood pressure so that she doesn’t faint.  Another prescription is intended to lower her blood pressure and help control heart pain. 

One prescription, when she first took it immediately after diagnosis, helped her keep movement, rather than freezing up.  It ceased to be helpful after about three years.  After a decade or so hiatus, it was added again to help diminish the extra movements produced as a side effect of the main medicine she takes to keep from freezing up completely.  Those extra movements are what Michael J. Fox often presents.  They are called dyskinetic movements, or dyskinesias. 

Side effects of the two meds that treat the movement disorder aspect of Parkinson’s increase the susceptibility to hallucinations.   The disease process itself of the Parkinson’s and Parkinson’s Disease Dementia produce hallucinations.  That means there is also a prescription to help diminish the hallucinations.  That is a medicine which can produce a fatal side effect in the elderly.  You tell me just how old we have to be to qualify for that side effect.

The brain chemistry of Parkinson’s produces depression.  Wouldn’t a person with Parkinson’s have to be crazy not to be depressed once in a while?  There are some prescriptions to help with that chemical imbalance.  The side effect of one is to make Mary Ann sleepy, but some of the others make her restless. There is something added to help her sleep. 

Two of the meds thin her blood and help reduce the likelihood of her having another stroke.  The lesion on her carotid artery has a rough surface — not a good thing.  The list of side effects of most of her medicines includes the matter of dizziness when standing up.   That means they interfere with her autonomic nervous system, reducing her body’s ability to adjust her blood pressure quickly enough when she stands up.  The disease process of the Parkinson’s and Dementia are complicit in that nastiness.  The result of the low blood pressure is that she faints, increasing the likelihood of hitting her head and having another stroke or breaking the skin and producing a major bleed. 

The newest prescription is a patch to be put on her back daily.  It is intended to help her memory and alertness.  It’s main side effect is vomiting.  I can hardly wait!  One additional side effect can be diarrhea, but then listed among the side effects of most of the rest of the meds is constipation.  She, of course, takes a couple of over the counter meds to counteract the constipation.   

I could go on!

Every Saturday my to do list includes filling the pill container, four compartments for each of the seven days.  Mary Ann used to do that for herself.  There was a time when she had even more prescriptions and multiple doses of some of them.  When she was having trouble getting them all organized and in their spots without missing some, she devised a numbering system for the bottles.  By the way, the numbers go up to eighteen, seven more than she has now.  The job of filling the compartments is now mine, but I still use her system.  I have to follow a meticulous routine with bottles set out in certain places on the table if there will be any hope of my getting the job done accurately. 

Once all the compartments are filled, we are ready for the week.  Each morning, one of the day’s containers is snapped out of the holder.  The pills must be distributed into the pill cup for the morning pills, taken with yogurt (with active cultures), juice and maybe cereal.  Pills from the other compartments are transferred into two pill boxes with timers, one set for two hours and the other set for four hours.   The timers beep at ten minutes, five minutes and three minutes before beeping for a full minute to tell us the time has come to take the pill.  It is a miracle that I haven’t thrown then on he floor and stomped on them to stop the endless beeping.  The bed time meds are left for another cup to be set out at the end of the day. 

Do I even need to tell you what the frightening error was that I made one dreary morning a few years ago?  I was sleepy.  I got Mary Ann to the table and filled the morning pill cup — with the night time pills!!!!!  It wasn’t until she was pretty much out of it and back in bed that I discovered what I had done.  I called the Pharmacist and we worked through the implications and what to do.  Gratefully, the doses were all low enough that no damage was done.  After that experience, I now make sure that all the lights are on, my glasses are on, I look at the pill container three or four times, and Mary Ann always counts the pills and examines them carefully before she takes them. 

Every once in a while, someone asks me what I am doing now that I am retired.  After they regain consciousness from my having whacked them up side the head, I explain gently that Caregiving is a full time job. 

The pills are a wonderful gift.  They have helped provide a quality of life we could not enjoy without them.  It is tough to live with them, but we can’t live without them. 

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.