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 falls. Show all posts
Showing posts with label falls. Show all posts

Saturday, July 21, 2012


One of the truths about Lewy Body Dementia. Tonight Hubby told me (slowly, repetitiously and broken up) "I think I have something in my hand, it feels like it, but I know I don't. I can see I don't, but I think I do"

Hubby has had a permanent decline.
I say permanent now because I've seen it coming but we always had a bounce back, like Lewy Body Dementia likes to do. This time however, the decline is constant and has been for a while now.
I'm talking about location. Hubby is completely lost when it comes to where he is now. He will ask repeatedly through the course of a day, Where are we?
Always I answer matter of fact that we are at home. I'll give our address and answer any questions about it for him short sweet and to the point. Hubby accepts my answer, sometimes with confusion but acceptance anyway. For that I am grateful. It wont be long before he is asking again and after the umpteenth time of hearing it I still answer the same way. I remind myself that to Hubby this is the first time he has asked and he sincerely does not know he has asked before. It's not like he forgot and it will snap back and most of all it's not like he keeps doing it to annoy me, although I can see where it could grate my nerves to snapping if I didn't keep reminding my own self about that truth.
A funny thing happened the other day, I've been assembling a photo album for Hubby so he can flip through the pages. I asked him to join me so I took him into the dining room with me where I had the pictures scattered about the table. As Hubby looked through the photos, I put every one he recognized into the album. After a while he asked me where we were and when we were leaving to go home. I tried to assure him we were home but he wasn't so sure with me this particular time. I told him we were in the dining room and that was probably why he was more confused. Still unsure he asked me when we were leaving to go home. I told him we didn't need to leave because we were staying here where we live. In a huffy tone Hubby insisted "Well we can't stay here!"  Raised his arms and looked around the room. I got tickled and escorted him back into our bedroom where he was more content. Perhaps he thought I was going to make us sleep in the dining room :)

Update on the falls specialist orders. The alert mat for the floor finally arrived and I got it installed. What I've observed about the mat is that it does a good job when it is walked across, BUT Hubby steps ACROSS the mat to avoid the sound it makes. No matter where I place it, he insists on stepping over it. One very early morning he got up and made the attempt to step over the mat, in the process he fell. He wasn't injured thank goodness. When asked why he tried to step over he told me that he didn't want it to bother me LOL!!! At least he still thinks about me :) I haven't taken it up yet and assured him I WANT him to step on it. It's a work in progress.

Now the hip protector shorts. They are very nice, similar to athletic shorts. They have the bulky padding for the hips sewn in the sides and Hubby wore them once, backwards, and has refused to wear them again. He shuts down when I try to explain their function. sigh. I'm not so sure there will be any progress in this area.

My own Dr appointment left me knowing nothing more than I knew when I went in. Appointment day after arriving early and getting all my paperwork filled out I still had to wait before seeing the Dr. When I got in to see him I felt like I was chatting at 100 mph, this is what I do, this is what I don't do, this is what I feel this is what I don't feel. We decided a blood workup was in order but I had eaten so it was a no go, I had to go back. Apparently the only time they would do it was during the hrs I wasn't able to and their lunch hr(s 2 of them to be exact) fell in my aide time. After explaining that I was a caregiver and to my husband with Lewy Body Dementia, Dr was nice enough to make sure someone would be available to draw my blood when I could get in. At my return nurse and I were conversing and I told him I appreciated his time, I knew it was his lunch and I thanked him and told him I was a caregiver to my husband with Lewy Body Dementia. Nurse was intrigued. He didn't think he had ever heard of it before. And stupid me forgot to bring the print off I keep for times such as that. UGH!! (note to self, print off and carry extra copies in car) So I gave him a mini course and we discussed a family member of his that had alzheimers. Being the scardy cat I am of needles anyway and willingly at that, I was very relieved that I felt little to no pain. He hurt me more when he squeezed my arm :/ I was told results would be back in 24 hrs.
I waited, no call
I waited another day, no call, maybe I was supposed to call them
Next day, I call and am told nurses only work on Mon Tues Wed, so now I have to wait and someone would call me. it's Friday.
Mon, no call
Tues, no call, Wed, you got it..
The next Mon I call and inform them I have waited 2 wks could a nurse please call.
Mon afternoon the phone rings, finally, oh but not so fast, apparently they wont talk to me on the phone so I have to go back in. It's a good thing I am not a paranoid person otherwise I would have diagnosed myself with a life threatening disease with days to live and they were afraid to tell me! Ok so maybe I thought about it. once.
Turns out all my labs came back glowing. On paper I looked great except for 2 numbers, weight and cholesterol. The 2 things I already knew. I need a cholesterol med to help speed along the process of ridding myself of the yucky bad stuff. So my question was, "Will this help me feel less tired? (remember the reason I was there)
Oh you will love this part
Dr said, If I lost weight by eating a low fat diet (already been working on it I told you last time I was in here) exercising ( I mentioned that I was doing that too and had taken up my running again since the weather cooled down) drank plenty of water ( that too) I would feel better. The heat probably isn't helping either. Come back in 3 months and lets do it again.
The GOOD NEWS about this return is that I took my print off and asked the nurse if she would care to read it and share. I told her about the other nurse and she was happy to have it and promised she would, (I like to believe people do what they say) I walked out with a feeling of pride at educating the medical community about Lewy body Dementia. So it wasn't all bad.

Oh I wanted to share this status from my FaceBook: 
Hubby has been sitting in the room with me and we have been semi engaged in many conversations. In other words, he has sat here and tried talking with me for a long time. I see his attention is diverted many times for various things but continues to be directed to a certain spot more than one. All of a sudden he yells, "Stop staring at me cat!" I jump, at this outburst but smile thinking he has mistaken the dog for a cat so I look at where he is looking and realize, he's seeing my ceramic cat and it's facing him. I turn the cat and ask if that's better, he says yes and continues his talks. I even amaze myself at how quickly I can fix a situation ;-)

 Proverbs 15:1
A gentle answer turns away wrath, but a harsh word stirs up anger. 
Repeat as often as necessary

Wednesday, February 9, 2011

We all fall down

We have had our fair share of unsteadiness for the last couple 3 days!
Before then, Hubby took a downward turn in cognition but had some 'busy and awake' days.
Those days followed by a sleep crash. Waking only when reminded to use the bathroom or to eat.

Besides the downturn in cognition Hubby has had mobility problems. We've had to retrieve the wheelchair on 2 separate occasions for transport.
On one occasion Hubby made it to the kitchen but on his way back he froze up and was unable to walk. I tried holding him and guiding him but he never could understand that he needed to move his feet.
The other occasion and on a separate day Hubby was able to walk into the kitchen to retrieve a can of chips and toddle back into the bedroom, but through the door was as far as he got before he froze.
Unsteadiness accompanied Hubby and while I was busy in the kitchen, Hubby lost balance and fell forward onto out bed using his hands and arms to support himself as he bridged the distance of 3 feet. I walked in to find Hubby clutching the can of chips and keeping himself supported.
I was able to upright Hubby and balance him long enough to slide the wheelchair under him and get him moved to safety.

I fear we may lose our walking abilities sooner than I anticipated if we continue on this course.
I have made a couple of extra efforts in providing the safest and easiest way for Hubby to rise from his sleeping position but even doing that has proved futile.
For the 3rd time, in as many days, I have found him lying on the floor wedged beside his bed.

I think the most frustrating to me is that the falls are always when I have stepped out of the room.
I purposely moved my computer desk and household bookkeeping into our room so Hubby would not feel so alone upon waking. I practically live in there with him, so afraid he will fall and get injured.
Feeling a little 'captive' I bought myself a camera and monitor. A nice little gem so I can keep an eye on Hubby if I need to step outside or out of the range of  site or hearing. Yet he ALWAYS manages to fall when I am no where around!

Gentle coaxing and demonstration is usually the key to getting Hubby to understand what he needs to do to get up from the floor.
Even at 2 AM when he fell last night. I jolted up so suddenly I made myself sick. Poor Hubby, I got the gait belt and used it as a pull coaxer for the direction I needed Hubby to move and un-wedged and moved him enough to support himself leaned against the bed. Hubby looked up at me as I apologized through the huffing and puffing i was doing. I told him I was sorry for having to tug and pull on him. Hubby's reply. "We have to do alot of that. I may get pulled in two."
He smiled

I did too

Then I excused myself from the task so I could sit down and let my heart and stomach settle and cry for a min.
I don't do that often, maybe I should.

After I was able to get Hubby up righted we tried to walk into the bathroom. His walking ability has declined so much so quickly it seems. He can't move his feet. The best he has done for a while is just about drag one foot. No he hasn't had any type of stroke. He has just lost the ability to know how to use it. His legs want to move and he can 'spring ' up and down a little but moving the feet is a whole other feat. (I just made myself smile so I'm keeping the word LOL)

I'm very tired. I've written and re written this about 4 times already. I tried so hard to give it a positive tone.
But the reality of this day is I can't.
Hubby rests now.
And I have things to do.

It will get better. I will adjust and re group and trudge forward and smile.
That's what I do and I seem to do it well.
Just not today.