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.

Showing posts with label Parkinsons symptoms. Show all posts
Showing posts with label Parkinsons symptoms. Show all posts

Thursday, January 24, 2013

Dr Grumpy

In all of my married life, 31 yrs, Hubby has had maybe 3 ER visits for himself. broken ribs (fast shower half time of a football game), asthma attack and kidney stone (hated seeing him like that but funny as all get out when he got some loopy meds).
But in the last few months, Lewy had sent us to the ER 3 times.
Lewy Body Dementia presents itself with symptoms of Parkinson's Disease.
From the lbda.org website Parkinsonism or Parkinson's Disease symptoms, take the form of changes in gait; the person may shuffle or walk stiffly. There may also be frequent falls. Body stiffness in the arms or legs, or tremors may also occur. Parkinson's mask (blank stare, emotionless look on face), stooped posture, drooling and runny nose may be present.
Hubby lives with all of these symptoms and the one that scares me, is the falling.

As a matter of fact, it was the falling that made me decide to seek Home Health Care. The day I was gone from home and returned to evidence Hubby had fallen but even worse, Hubby didn't remember what he had hit. You can read about "That Wash Woman" Here.

Hubby had taken a fall in the bathroom the other night.
He's taken some doozies in the past but always was determined that he didn't need to go to the Dr. Our stubborn heads butted many times about this. He won all the times but 2. This last time he didn't even argue and agreed to a late night visit to the ER. You know it was bad when he said yes.

His complaint was his back, we called the ambulance for transport. I grabbed our Emergency Bag and the Folder I had put together with Hubby's info. See my folder items here.
When the ambulance arrived I gave them the short version of the situation and about Lewy. They loaded Hubby and turned to me for info and I smiled really BIG, handed them the folder and declared, I'm about to make your night! And apparently I did because the look of confusion went to delight when they realized the treasure trove of information they had and it was theirs to keep! They went on and on about it :)
Hmm, now I wonder if I should have been all smiles while they were wheeling my husband off to the ambulance for a trip to the hospital. #visiblyconcernedwifefail

Next stop the ER. I went inside to present Hubby's info as the EMT personnel carried Hubby to the back. I was informed that I would be notified when they had him in a room. I politely took a seat away from as many of the obviously sick wall to wall people in the waiting room. Seriously, the flu has hit our area hard. And a posted sign stated that the wait time for minor cases was going to be 3 hrs. ! People just kept coming as I sat there.

As I waited patiently to be notified what room Hubby was in, I overheard one man I truly believed was not a minor case as he spoke loudly and rudely to his grandmother on the phone. I doubted it wasn't his finger he needed looked at. It was obvious he needed a serious attitude adjustment, and quick! >:|

After a 20 min wait I finally walked back up to the desk and asked about Hubby's room. I was buzzed through and Hubby had already been to and back from X-ray.
Everyone that worked with Hubby or had contact with us was very kind and concerned and attentive. It surprised Hubby to learn that the man that came in and told us who the Dr would be and took Hubby's vitals was his nurse. 

Hubby asked "Who was that?" I explained it was his nurse and Hubby was confused and I laughed when he said "That GUY?" 
Yep Hubby, men are nurses too. LOL!!

Another man marched into the room. The results were in and they showed a very small fracture to Hubby's T12 vertebrae. The man held up his fingers to show the approximate size of the fracture. He gruffly continued, There was no danger of any spinal cord injury to worry about. It's going to hurt like crazy, but if you think he can tolerate the pain take him home and give him meds.  The man quizzed me on meds and I gave him a short lesson on Lewy and pain meds and what Hubby was already taking. At this point I'm deciding this must be the Dr. I didn't see a name tag so I named him Dr Grumpy in my head. Dr Grumpy told me to double Hubby's current meds for his pain, then he turned and marched out. No hello, no goodbye from Dr Grumpy.  

I didn't let Dr Grumpy or the circumstances distress me, I actually saw a positive in the situation. Since we have to live with Lewy Body Dementia I use every opportunity to educate about it. This was Hubby's first trip to the ER in the night. This meant a new group of people to meet and share. I did.
Hubby was discharged for home.

Between Hubby's shot of Demerol at the hosp and his pain meds at home he slept the rest of the night. Good for us both.
The next day Hubby did well, still in pain but he slept most of the day.
Then the night came.
Hubby was calling out every couple of hours, even in his sleep. Neither of us rested well. 
I have a call in to his PCP to see if we can do something else for the pain.
Of course I'm worried about meds and worsening cognition changes but after last night I'll do whatever we need to keep Hubby pain free. I'm praying hard.

Today Hubby is still suffering with pain and is extra extra needy. 
I'm afraid to touch him because he hollers out but he needs my help with everything. Like getting up to go to the bathroom, getting in and out of the bed and the wheelchair, covering up and most recently he called me to help him divide a piece of candy evenly for the dogs to share. Really Hubby?! :/ 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.