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!

That Wash Woman

Sometimes,
OK lots of times,
Hubby can not remember the name of his personal care aide so He calls her That Wash Woman.
She and I think it's very sweet :-)

Our life before her;

Hubby has gradually forgotten how or was unable to perform his basic care needs. There are times he can function quite well in remembering them but less and less. Shaving was one of the first to go. Mostly as a result of his shaking and trying to use a razor. I purchased him an electric shaver to use but eventually I started shaving him. Hubby is a fall risk so I took measures in trying to prevent that by placing anti slip strips on the bottom of the tub and I purchased him a shower chair to sit on while taking a shower. I also installed grab bars. In addition to what I purchased, the Veterans Assoc supplied many medical supplies that Hubby needed or would need in the future.

Concerned with falling, helping Hubby in and out of the shower was all that needed to be done with shower needs. As Hubby lost the ability to wash his hair and tipping his head back caused him dizziness I started helping with that. Now you wouldn't think that would be such a difficult job would you? Well I assure you that it is very different than sharing a shower ;-) We were both drenched along with the floor and everything else around us. It looked more like a dunking than a seated shower. :-)

We ,OK OK, I, eventually got the hang of it and shower assistance went much smoother.






So now more things to add to my list of caregiver duties.
Some days it feels like raising a child in reverse.

In the beginning leaving Hubby at home alone wasn't a huge ordeal. He was never without his cell phone and was always able to call me if he needed me. I wouldn't be too terribly far from being able to get to him myself or call emergency personnel if necessary. On the rare occasion I was a great distance away I would have our son call and check on him. I felt comfortable in doing this UNTIL
a day of shopping when I returned home Hubby was asleep in bed when I returned, That was normal.
I woke him and let him know I had returned and gave him a kiss on the forehead and he acted like I sent electrical shock waves through his body and grabbed his forehead.

I asked what was the matter and he tried to tell me his head hurt. (I guessed, go me!) I turned on the light to examine him closer and he had a bump and red spot just over his eye. I started twenty questions and by process of elimination surmised he had fallen down but he doesn't know what he hit. I surveyed him for other damage and limb movement.

Then it hit me like a panic, All the horrible "what if?'s " crept into my mind. I called the VA and they made a home health recommendation. I was afraid to leave him alone, no I would NOT leave him alone. I bought a monitor to have so I could hear him if he needed me and I was in a room too far to hear him easily. His safety became paramount. and still is.

Hubby was ambivalent to the idea of someone coming. I just needed a respite so I could run to town and grab milk, toilet paper, and coffee along with other necessities and know he wasn't alone should he fall again. The intake process was slow (dealing with the V.A. imagine) but when we finally got all the red tape ironed out he qualified for a personal care aide. I was so happy to have some relief and willing to let go of some of the responsibilities I carried. Or was I?

After the Nurse left, my emotions became jumbled up.

I was truly grateful to be getting the extra help. Help I had prayed for. I knew how much good it would do physically and emotionally. But at the same time I was stressed about another person caring for my husband in such an intimate way.

This is going to sound so silly and I can just hear your remarks now but my feelings were very real.
The fact that another woman would be in my house, my bathroom, my bedroom to assist my husband with bathing and dressing had me in an emotional spin. I don't know why either. I never ever felt like that when he was in the hospital or had female drs he needed to see. So why? I didn't understand my reaction.
It never even hit me and I never even thought about it until the nurse left. I was so ready for the help that I needed and need. I felt foolish about it.

I cried and prayed that I was doing the right thing.

I realized after much thought that I needed to move mentally from a 'wife' to a 'caregiver' frame of mind. I suppose I worried that in such an intimate setting I would lose the affections of my husband to this other person as she cared for his personal needs. I have lost so much of him to Lewy already I wanted to hang on to what was left.

So I made the emotional transition from physically intimate wife to wifely caregiver and this makes it easier for my heart to endure the things I must concede for his well being and mine. It feels like I have grieved for so many years already.

Please do not think for moment of time that I do not love Hubby. I most definitely do. He is the other half of my heart. It just hurts my heart when he doesn't remember who I am. Lewy Body has forced our relationship to change.

And That Wash Woman, she has been with us more than a year now. We all hit it off quite well and I am more than happy with her. She conducts herself in a very professional manner. Both Hubby and I are comfortable with her and he seems to be more cooperative for her because he knows she will only be here at certain times where I am here all the time he can just put things off until later.

She has certainly been a blessing to our lives :-)