Disclaimer

This is dementia. It's not just a memory problem.
What you read in this blog is purely my own personal experience in dealing with Lewy Body Dementia every day.

This is not meant to offer any medical or legal advise.
I have no professional training in care giving or experiences in formal writing.
I'm just a woman that loves her husband deeply and wants to provide him with the best quality of life he can and chooses to have.
My prayer though this is "Lord, What am I learning from this; how can I use it help someone else and to glorify You?"
If just one person finds comfort in this public blog. I will feel like it was a success.

Monday, January 18, 2010

A week of smiles and weak smiles 1/10-1/17


 I attempt to keep a daily journal of the things that make me smile about and or with my husband. My goal in doing so is to keep me focused on the good and prevent me from getting so bogged down in the sadness and frustrations of this wretched disease. Believe me when I say there are more negatives that happen throughout the day that it would be easy to concentrate on them. But, I am choosing to concentrate on the positives. I do not always succeed in my attempt and I try not to use the same generic thing more than once unless I can be specific about something he has done.

I never make new year resolutions but this year I did, and it is as follows pertaining specifically to my husband:

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.

Jan 10: I got nothing. Hubby slept ALL day. I woke him to eat supper and back to sleep he went. ( I had already used calm and peaceful )

I don't have to give thought to today's smile. Jan 11: Hubby asked me to do something for him and as I passed by him he reached up and "spatted" me then grinned real big. He has such a beautiful flirty smile :-)

Jan 12: Took Hubby to the Eye Dr and didn't get to leave until VERY late. We stopped and had supper. I appreciate the quiet relaxed time we got to spend together :)

Jan 13: Got a "me" day today and enjoyed every moment of it. Hubby was still in bed when I got home. I walked into our room to let him know I had returned and he said, "Hey Babe". Acknowledgement that has been 'lost' and momentarily returned to hug my heart :)

Lewy Body is no laughing matter but some of the things it does sure make me laugh. Jan 14: Hubby was looking outside today. The back deck doesn't get much sun so the uncommon ice and snow we got has been slow to melt. Hubby walks in to ask me, "When did we get all that ice?" I tell him about the extremely cold snowy weather we just had and he says, "hmm" ...as if he slept through it. Every day is a surprise :)

Jan 15: Enjoyed a lunch out on a gorgeous day with Hubby and his sister. Later when I said I had a good time at lunch Hubby said "Yes, that was nice" :)

Jan 16: There are times Hubby has his time of day confused and asks me to make his breakfast more than one during the day. Today I woke and made myself some oatmeal. When he woke he asked me to make him some breakfast and I said 'Again?" As soon as I said it I realized I was the one who ate, not him. We laughed about that and he just shook his head at me!! ROFLOL!! Maybe I have the problem ;-)

Jan 17: Quietly minding my own business and wrapped up in some silly computer game while waiting for supper, I heard hubby walk (shuffle)  into the room and he stood there quietly then unexpectedly YELLED "IS IT READY?!" and cackled like a loon after I nearly jumped out of my skin. What a goof ball! LOL! :)

 

Sunday, January 17, 2010

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.

Saturday, January 16, 2010

STOP THIEF!!

Lewy Body Dementia is a Thief:

Lewy is stealing what precious time I have with the one I love.
I believe it already stole 5yrs of my life and a huge chunk of my heart.
Every day a little bit more is missing. I can't stop it.
Oh how I wish I could.

I want my happy ever after but I know it won't come.
The best we can do is slow it down as it heads for the door. I grab hold and push with all my might just to wind up with skid marks on the floor as it departs into the eternal nothingness.
A vortex of swirling and confusion.

Lewy is stealing my Joy. Oh it thinks it's replacing it with humorous incidents and I won't notice the difference, but I do.

Lewy is stealing my passion. Most of the time my loved one has no idea who I am or what my relationship is to him. As such I find myself putting up emotional barriers and diverting most of his advances.

Lewy is stealing our precious memories. My loved one and I can't share the past and reminisce about our lives when time and space have no meaning.
So in the silence we sit.
The deafening, overbearing silence.

Lewy is stealing my space. How small my world is becoming knowing I can't leave my love one unattended.

Lewy is stealing my security. Now I must be the brave conqueror and protector.
My tag team partner is down for the count.

I hate Lewy. Lewy takes and gives back just to take again. Such a cruel heartless disease.

The only thing Lewy hasn't stolen is the love I have for my loved one.
Lewy can not take that away from me. I love this man beyond reason.
I hope and pray that  if Lewy succeeds in stealing all the memories from the brain of my loved one, the memory of my love is reminded daily by God to his heart.