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.

Saturday, July 21, 2012

Observations

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


6 comments:

  1. dianehaught@yahoo.comJuly 21, 2012 at 8:56 AM

    Thank you for sharing! You have always been and will always be an inspiration to those who are fortunate to count you as a friend.

    Reading your experiences and your reactions to them has greatly improved the understanding of our son who has autism.

    ReplyDelete
    Replies
    1. Diane,
      Thank you for taking the time to read and respond .
      I love you greatly and know I have a true prayer warrior in your friendship. I so treasure you.

      Your son is blessed beyond words to have such a wonderful and supportive family. His struggles with autism will be varied but he will learn who has his back ALL the time. I learn from your wit and steadfastness for family. Thank you.

      Delete
  2. Kathy, You are so strong and have a lot on your plate. You are the picture of grace and patience. I'm wondering if your Dr. did a thyroid test for you. Tiredness and weight gain are symptoms of thyroid problems. It's just a blood test. I hope he did that for you. Caregivers are tired, mentally and physically. It takes a lot out of you. Good luck and hugs to you.

    ReplyDelete
    Replies
    1. Hi Brenda,

      Thank you for your comments.
      Yes my Dr did run a thyroid test as well as blood sugars.
      I look pretty darned good on paper ;-)

      Perhaps some of my tired can be attributed to the extreme heat we are experiencing besides the day to days of caregiving.

      I'll give Dr a chance and continue my changes in lifestyle. If no relief is experienced I will look for other possibilities with my Dr or another Dr if he won't cooperate ;-)

      Thank you for thinking of me :)

      Delete
  3. Alzheimer's is the sixth leading cause of death & there are currently no effective treatments. Please share this video and one thing that you never want to forget to help end Alzheimer's. http://www.youtube.com/watch?v=xeHTTonG6co&feature=player_embedded

    ReplyDelete
    Replies
    1. Hi Samantha,

      I watched the video. Short and directly to the point. Thank you for sharing it.
      The one thing I would not want to forget is that I am a child of God.

      Delete

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