Even the best layed plans...

I sat down here to go off on a tirade about how miserable my day was and how frustrated I felt. Enough so that at one point I wanted to throw up my hands and say fine, I quit!

The reality is that yes I am extremely frustrated but I don't intend to quiet.

Hubby and I made plans to attend a racecar show this weekend. Hubby loves the races. Or at least he did. There was a time in his life he used to drive dirt track. He was pretty good in his day and he enjoyed bragging about it. He even raced on the same track with a young and upcoming driver that surpassed him and went on to bigger and better things. Mr Mark Martin. A young "kid that could barely see over the wheel", Hubby would say. Even though Hubby and Mark never raced together, as they were in two different race classes, Hubby sure liked to talk about those days. A few years ago Marks Promo car passed through town on the back of a hauler and stopped at a local gas station. Hubby was there when it did and he had his picture taken beside the car. He is still proud of that picture and brings it to me to see every now and then. I miss that he doesn't talk about it anymore.

I like dirt track racing myself. There is nothing like the feeling of loud motors vibrating through your body or the taste of a heat lamp hamburger with ketchup and dust. That sounds terrible I know but I really love the races.

We also intended to double our pleasure, double our fun because we were going to see our grandchildren. We hadn't seen these since Christmas and I was so looking forward to spending some precious time with them.

Perhaps another day.

The plan was to take the 3 hr drive, spend the evening with our family, a night in a hotel and attend the car show tomorrow.
Our reason for going the day early was because it takes such a long time to get prepared to go anywhere. 2 hrs at the least and usually exhaustion sets in by the time Hubby is dressed, shaved, combed, fed  etc etc.
The show was going to start early in the day so that would have meant getting up extra early to accomplish those tasks and beginning the day hurried and have a very long ride.
I had a set time I wanted to leave that would allow us to arrive at our destination while still daylight. I do not like night driving. A hotel, for our convenience, could be found and we could get up and not rush to be at the show, be able to enjoy it and Hubby could sleep on the ride home.

Hurry is not a word used around here anymore. Oddly, I used to be the one ready right on the dot, Hubby was always reminding me of the time and trying to get me to rush. He never wanted to be late for anything. Now that time and space have no meaning for Hubby he moves at the slowest pace unaware. The more I attempt to hurry Hubby the more anxious he becomes. the more anxious he becomes the slower he gets. It's a no win so I try and allow all the time possible to do anything. Should I miss the 2 hr window even by 5 minsutes you can forget whatever plans were made. Hence, today.

I woke Hubby in plenty of time to prepare him something to eat and still have his good 2 hr window. 15 mins passed and still he would not get out of bed. 15 mins more I had passed and he went to the bathroom. YAY! I thought, a good sign. 15 mins later still no Hubby. I found him back in bed. Not a good sign. I asked Hubby if he was Ok. He seemed to take an extra long time to respond to my question and when he did he said "yeah". I reminded him we were supposed to go somewhere and we had a time we wanted to leave. He lay in the bed a long time with no movement or answer. I walked away and returned once more, 15 mins later, to ask if he was getting up, to which he said "You can go ahead and go if you want". Trying to reason with Lewy is impossible.

By then we had reached the 2 hr window. Anxiety high already I turned and walked away from Hubby. Apparently my anxiety found a way of escape through my eyes. Highly disappointed and frustrated I wanted to walk out the door get into my car and drive away.

Perhaps I should have gotten out and walked up and down the driveway but instead I filled my frustration, sadness and disappointment with food.

Hubby still sleeps and I have tried all day to come to grips with the hatefulness of Lewy. I want to yell at it and shake it hard but how do you make a dying brain understand? I have to learn to separate the disease from my Hubby. Sometimes a difficult thing to do as Hubby was able to get very stubborn and hateful without the help of Lewy. So once more I absorb the feelings.

I try to keep a smile journal. I wondered what I had to smile about today. Thanks to my daughter she was able to help me. She said, Well, at least he said you could go by yourself. We thought it was funny because in his health, he never wanted me to go anywhere by myself.

I will gladly pay you Tuesday for a hamburger today

Hamburgers!! That's all Lewy wants to eat around here, oh and Malt O Meal.

Because of the shaking disorder associated with Lewy Body eating has become a chore and frustration for Hubby.
Finding finger foods he likes has been a little challenging for me but I'm very sure less of a challenge than him trying to eat from utensils. So he has settled on Malt o meal and hamburgers.

Why? That's a good question but all I can do is guess.

You see, Hubby has had several embarrassing moments with food. Falling down and dropping an entire plate of food at a family function once. He was pretty annoyed with himself and the fuss the family made over him.
Truth be told he gets pretty mad when anyone tries to help immediately.
He dropped an entire plate of food in a restaurant buffet line once. He was so mad at himself but I tried to assure him all was well and we would get another plate. We didn't stay very long after that.  Our eating out has dwindled to almost none unless we have a dr appt or he is having a SUPER DAY!

These days whenever we get that rare opportunity to eat out we ALWAYS go someplace we can be waited on and food brought to us. Including any salads or drinks

Because Lewy Body has many of the characteristics of Parkinsons he shakes. When he gets upset he seems to shake more but that might be anxiety. Eating from utensils is difficult so I try to avoid foods that will easily fall from a fork. But even foods spooned and pierced are shaken from the utensils. Cutting foods is especially difficult so I try and cut things before he ever gets his plate and should we be someplace public I discreetly try to cut for him as to preserve what independence and dignity he feels he has left. Many a time Hubby has refused to finish eating and left food on his plate just from sheer frustration.

Finding the line between helping and babying has been a challenge for me. He wants to be so independent and to a point I just let him. If it's walking a long distance without assistance (scares me so I follow with the wheelchair or walker I bring "Just in case you get tired" and he always does), closing a car door (several attempts), buckling a seatbelt, carrying a beverage (even if it spills) things of that nature.  All those seem like they would be easy tasks but to Lewy they are huge chores.  Once I notice frustration setting in I assist, suggest or find other ways to distract while I take care of the need. Stealing a kiss is a good distraction while I reach across and buckle a seatbelt and securely close the car door ;-)

So back to the hamburgers. With a hamburger, Hubby can hold it in his hands. He doesn't want anything on it but mustard and he mashes the bun flat on it. This prevents the bun from sliding off and he has control over the food getting to his mouth. With the Malt O Meal I can make it thin enough to drink from a straw. I purchased Hubby an over the bed table about a year ago. Hubby only eats in his room so this was the perfect purchase. Since the table is adjustable Hubby can raise it to the level he need to "drink" his Malt o Meal or eat his food. That position is usually right up to his face.

Over bed table 

There are other styles available but this particular one suited our needs.



I also purchased a travel mug . Short and squaty with a lid. The hole in the lid is just narrow enough to prevent the staw from easily falling out yet wide enough to be able to draw fluid through the straw adequately.

These items and actions are just a few of the things that help make Hubby feel independent still. As long as he can manage I say let him.

A day in Lewy Life

I have really enjoyed the reasons to smile list and I know some are trying to make their own.
BUT I have really struggled some days to find the smiles. I know that what is posted makes things sound so easy. Honestly finding something amongst the struggles we are faced with every day can be a tad overwhelming and there are times I just don't want to look for anything good. So I decided to share a recent day and then what I chose to concentrate on.

Hubby sleeps most of the time. He is usually up towards the late afternoon and as the night wears on he becomes more confused about things. The last few days he has been very busy going through everything. I kid you not about everything, looking in and pulling things out of every drawer and cabinet. I have asked him numerous times what he was looking for and he just says he is looking. I think he is looking for anything he may recognize as his or have some memory of. Of course what he takes out NEVER gets put back by him. It gets frustrating seeing him sit in the middle of the floor pulling out all the clothes from the drawers and rifling through papers knowing I am the one to pick them up.

On one night in particular he ran across the car title to his green car. Last year I renewed the tag although he hasn't driven in almost 2 yrs now. It expires in May and he came to me with title in hand and asked about the license. I explained the tags were still good he left the room. He returned again about the tags. Once again I explained. He did this over and over and over and the final time he came and handed me the title and said in a huffy tone, Well this says 1994. At which point I threw my "Good Wife" crown, banged and re bent my scepter and wanted to choke someone with the frayed sash and said in a gruffly annoyed tone, THAT'S THE YEAR THE CAR WAS MADE!! He looked at me suspiciously and left the room.

Deciding that there was nothing to smile about for this day I retreated to play Zelda and save the monkeys. On the way I let the baby kittens in the house. Seeing the kittens he then shuffled into the kitchen and watched them play for a little while then went to the dining room and started going through the books and pottery and dishes (I could hear) then I heard a THUD!! I rushed to the room to find him lying on his back as he had taken a tumble in the floor. As the norm for falling I survey for visible damage and make sure all limbs are movable. Then I wait for him to decide when he can get up. I have learned not to try and physically help as he can not understand the process and the result would be both of us getting injured.

As he lay there one of the baby kittens rounded the corner and walked over to him and stared at him. He in turn looked at the kitten and said, "It's a good thing you weren't under me". I started laughing and he smiled. He finally got up and I re checked for damage then we went to bed. That was close to 11 PM.

My status for that was: WHEW Barely got this in. Jan 4: Hubby enjoys watching the baby kittens play. I let them come inside so he can see and interact with them. I enjoy seeing his gentle nature with them. :-)

So perhaps the reason for sharing this was to show you that no matter what situation you may find yourself burdened or overwhelmed by keep looking, seeking. The positive is always somewhere. It wont always be funny, it may just be knowing a friend said they were praying for you or a stranger did something considerate.

This is my resolution for the year. "Philippians 4:8 Finally, brothers, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things."