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. Show all posts
Showing posts with label Parkinsons. 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!

Thursday, February 16, 2012

Treading Water

Feels like Hubby and I have been treading water for quite some time now.
Although we are still moving along in the Lewy Body Dementia waters at least we are not being sucked into it's undertow.
That's a good thing.

We still have cognition problems.
Just last night Hubby asked SonnyBoy where we were.
Hubby was obviously concerned and SonnyBoy got concerned about his father's state of confusion and obvious fear and relayed it to me.
Since I see this so much I suppose it's a normal question to me.
I went to Hubby and asked if he needed or wanted anything, meaning I give him yes or no questions.
Do you need a blanket? Can I bring you some water? Lemonade? Would you like cheese with crackers?
Are you feeling ok?
Hubby can answer these types of short sweet questions.
He asked me where we were and I assured him we were at our home.
Hubby's response, "That's what I thought. (SonnyBoy) didn't know where we were and I didn't know if maybe we got kidnapped or something."
I laughed and so did Hubby, then I hugged and assured Hubby nobody had been kidnapped and retrieved a snack for him.
All was right with the world again.

Mobility is getting worse.
Hubby struggles more and more with walking but is still able to get to and from the adjoining bathroom. He has limited the number of times he goes though. That reminds me, note to self, buy more laundry detergent.
Sitting up is also very difficult for Hubby. He falls over because he cant sit still.
The Parkinsons type symptoms of his Lewy Body have increased to a frustrating degree for Hubby.
Unfortunately the meds in the past we have tried for Hubby's shaking have not worked.
So he must live with the shaking. In order to combat it, he stays horizontal; even when I wake him to eat.

I think this activity stresses me a little for choking possibilities and I have expressed my concerns about it so as a compromise, Hubby lays on his side to eat and drink.
I even tried to get him to let me raise the hosp bed for him but he doesn't like the bed up, sigh.
Since there is no serious issue, pick and choose your battles with dementia.

I feel fairly confident to say that we may have been able to get Hubby's back pain to a manageable level with the increase in meds. He still has pain but at least he isn't complaining as much.

Hubby hasn't been trying to figure out ways to get away and his attitude toward me is softer. Even very dependent at times. There are times I will hear him call out to me in a distressed tone. I will hurriedly go to him only to learn he didn't know where I was and got concerned. My presence eases his distress for which I am thankful. Of course that isn't to say he doesn't get cross and suspicious, just not as much.

So here we are, treading water, staying afloat for the time being and every now and then, I can touch the bottom and stand up to rest.