It seems so unfair to complain about frustrations with someone who is suffering from such a terrible cluster of diseases, Parkinson’s Disease, Parkinson’s Disease Dementia, and heart disease on top of all that.  My aches and pains and various annoyances are tiny by comparison to Mary Ann’s challenges.

Someone in the Lewy Body Dementia Spouses online group replied to me this way [I am paraphrasing]:  You may not have the disease, but, as the primary Caregiver, you suffer from it too.

Those of you who know Mary Ann love her and respect her very much.  Those who know her best know that she has a chip on her shoulder that refuses to allow her to let anyone push her around.  It is one of the things that drew me to her and one of the things that drives me crazy!

With this complex and maddening combination of symptoms that come and go and come again, sometimes in minutes, dealing with the ordinary daily activities can be utterly frustrating.

Mary Ann can move from concluding something completely untrue and impossible in her less lucid moments, seeing things that simply are not there, to being completely clear in her thinking, remembering events more accurately than can I. One result of the times of dementia and lucidity being interwoven together, is that I am not sure whether to take seriously what she is saying or not.  I am not sure if she is confused about something, unaware of what she is really saying or doing, or she is willfully exercising pushback, proving again that she can do what she chooses no matter what effect it has on me.

Last night was a restless night.  No amount of begging her to stay settled in bed could keep her from getting up.  Again, there were multiple trips to the commode, even when there appeared to be little or no actual need to use it.  There were changes in the covers, shifts from facing one direction to facing another, need for a snack.  Then this morning she decided to get up at 6:45am to eat and take pills.  Normally, she sleeps until 8:30am or 9:30am.  I was up with her most of the first half of the night.  There is no point in my trying to get to bed and to sleep during her restless times.

After pills and breakfast she wanted to watch television.  Once she is up, I have to be there with her, awake and accessible to her since she gets up and walks, subjecting herself to the likelihood of a fall.  Her schedule determines mine.  She reluctantly agreed to lie back down in bed.  Gratefully, she slept for almost three hours, allowing me to do the same to try to make up for a very sleepless night.

The frustrations continued with our at least daily battle over what to eat.  There were available to her, chicken salad that I had made, fresh sliced smoked turkey and provolone cheese, some lasagna from the freezer, some roast beef and vegetables from the freezer, eggs, bacon, fresh strawberries, blueberries, cantaloupe. seedless white grapes.  I spent at least forty-five minutes trying to get a response on what she would eat.  She came out to the kitchen in her search for something else different from what I had offered.  I asked about the lasagna, which she had liked very much.  She said it wasn’t as good the second time.  That one pushed me to the edge.  I asked again about the smoked turkey.  She said no.  Then, after almost an hour of this, she mentioned salami.  We had gotten that when we got the turkey at the store. It was hard for me to accept that it took that long to find our way to something she was willing to eat.

My assessment of her goal was that we go out to eat.  Since we can’t afford to eat out every day, that goal is frustrating to me.  We had gone out the last three days.  To waste all that food in the refrigerator because it just didn’t measure up to the wants of the moment is an intolerable thought to me.

The rest of the day was spent watching reruns of the most depressing and demoralizing accounts of the criminal behavior presented in vivid detail in a marathon of one of the incarnations of the Law and Order Series.  Since the house is small and I need to be very accessible to Mary Ann, it was hard to avoid at least seeing portions of some of them.

We did manage to get out for a while (a very hot day) to get some ice cream.  Then there was church tonight.  We had some freshly made food brought over to the house by a parishioner and friend later in the afternoon.

In writing this post, I have risked diminishing Mary Ann by speaking so candidly about my frustrations.  She has reason enough to be frustrated with me at least as much as I am with her at times.  She does not have the luxury of writing out those frustrations for others to read.

As unfair as it is, this is one of the ways I process my frustrations so that I can maintain my equilibrium as I serve her needs all day every day — and night.  My hope is that by putting my frustrations into words here, I can be a better husband and Caregiver to her for as many years as we have left together.

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.

I just finished a piece of wonderfully decadent chocolate pie.  Life is good!

For a few months we are providing a place to stay for the Pastor who is now the Senior Pastor at the Congregation from which I retired nine months ago.  His children are finishing the school year before the family moves to town.  The Congregation is bringing a meal a couple of times a week so that he can have real food once in a while.  Cooking is not one of my gifts. What a treat it has been to greet people at the door, loaded down with containers of nourishing food, providing an entire meal including dessert!

What was the norm for meals before he arrived, and what will be the norm again when he and his family settle into the home they have found here, is not so lavish and nourishing.  On a good day, there may be a relatively nourishing full meal.  A good day does not usually come more than once or twice in a week.  I like vegetables, and I can steam broccoli and will do the same with the freshly picked asparagus I hope to find at a local country market in the next few days.

The reality is that our normal does not include daily home cooked meals, far from it.  There are some dynamics in our pattern of living that do not make healthful eating an easy thing to do.  I suppose that Caregivers who have had food preparation as an element of their portfolio prior to the addition of the chronic illness to the family, do a good job of providing regular.  Cooking was not part of my portfolio.

Among the dynamics of caregiving that works against eating regular, balanced and nourishing meals, is the impact the chronic disease has on the appetite of the one receiving the care.  In the case of Parkinson’s Disease and Lewy Body Dementia, one of the early signs is the loss of the sense of smell and taste.  I have in the past asked Mary Ann how she determines what she likes and dislikes since from long before she was diagnosed with Parkinson’s those senses had diminished.  I don’t know exactly how she answered, but my memory of what she said is that there are some flavors she can pick up, then there are textures and visual cues and just a general awareness of what she likes and dislikes.

One thing that many of the Lewy Body Dementia Spuoses online group say is that their Loved Ones like ice cream.  One said that a health professional told her that the taste buds that sense sweetness are the last to go.  Mary Ann could easily eat two large servings of ice cream a day if it was available.  I need to add quickly, that when I was growing up, at least during the summer months, I remember my parents and I heading to the Oatman Dairy for hot fudge sundaes (topped wtih salted pecans) pretty much every evening.  My taste for ice cream is legendary among those who know me.  Don’t start a conversation with me about ice cream unless you have a substantial amount of time to give to that conversation.

Here is one of the problems Caregivers have in their attempt at healthy eating and weight control.  It is the needs of the one for whom they are caring that take priority.  Especially when there is some level of dementia in the picture, food issues emerge.  Just finding foods that are acceptable is no simple matter. The house ends up filled with what the one affected by the disease will eat.

Sometimes there are diet restrictions placed on the one with the chronic or progressive disease.  He/she may have diabetes or heart disease added to the primary illness.  It would seem then that it would be easy to maintain good eating habits.  Not so!  When your Loved One is suffering from some sort of major debilitating disease that steals them much of what brings them joy, how can they be denied a few simple pleasures.  If Mary Ann likes ice cream, that is what she gets.  The ice cream may be a couple of scoops from Baskin – Robbins, or a Sheridan’s Concrete, or a Turtle Sundae at G’s Frozen Custard, or a Dairy Queen Blizzard, or a Pecan Caramel Fudge Sundae at the Braum’s Dairy an hour away.  She likes Glory Days’ Pizza.  She gets a couple of slices of all meat pizza once a week, providing her with two meals.  She likes burgers and fries and KFC and Long John Silver’s and Steak and Shake and a Steak Burger and Cheese from the Classic Bean. She loves sweet jello dishes with cool whip and sour cream or cottage cheese.  She likes bratwurst and sour kraut and beef and potatoes and pork roast and chops.  Lunch at home almost always includes handfuls of Fritos and a regular Pepsi.

Yes, she has heart issues and should not be eating red meat or anything with cholesterol.  Yes, she has had congestive heart failure suggesting a diet low in sodium.  But she also has Orthostatic Hypotension (low blood pressure episodes) that is controlled better when fluid is retained allowing blood pressure to remain at a higher level.  Salt provides that fluid retention.

After weeks or months or years of trying to negotiate the mine field of evil foods, after fighting endless battles on what should and shouldn’t be eaten, this Caregiver, and most with whom I interact have concluded that there is more to be lost than gained by continuing the battles.  What is the point of denying someone simple pleasures just to add some more years to avoid those simple pleasures.

One thing that militates against a Caregiver eating a healthy diet is that the house is filled with food that is not helpful to maintaining a good balanced diet.  Of course the presence of that evil food does not force the Caregiver to eat it!  Isn’t the obvious solution simply to have healthful foods in the house to eat as well as the evil foods?  It may be the obvious solution to the problem, but it doen’t work.

The real culprit that sabotages efforts at healthy eating is the stress that comes with the task of living on a roller coaster going at breakneck speed completely out of control.  Food is the drug of choice for Caregivers.  We may not be able to stop the roller coaster, but we can head for the kitchen and eat a bowl of ice cream followed by a handful (or two) of cheddar cheese flavored Sun Chips.  We can slather the back of a a couple frozen cookies spoonfulls of Nutella.  We can eat a heaping spoon of chunky peanut butter dipped in a dish of chocolate chips.  Caregivers’penchant for late nights provides plenty of time for more than one foray into the kitchen. If we can’t stop the roller coaster, at least we can treat ourselves while we ride.

This is where suggestions for solutions to the problem usually come in these posts.  If I had a solution to this one, I wouldn’t have 165 pounds hanging on a frame built for 145.  I guess I need to watch Oprah while I eat my afternoon snack.

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.