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, January 30, 2010

A very, very mild taste of Lewy? BLUCK!!

The last few days I have had my fair share of an intestinal virus YUCK!

In his concern for me, Hubby has tried to be helpful to the best of his ability.
Instead of telling me what he has needed done like opening packages of chips or cola cans or dispensing his BC headache powder Hubby has gathered the things and brought them to me to do. Now that may sound strange but it truly is a sweet and helpful gesture. And I SO prefer it to him attempting to do it on his own. Those attempts most always result in a big mess for me to care for.

For the first few days I wasn't sure if I  was getting sick or not. I felt OK just not quite right. Then I had my first bathroom run and it was downhill after that. The many trips have left me feeling weak and lethargic.

I tried to sit at my computer but because I have felt so badly any attempts to read have caused my eyes to hurt resulting in a nauseous feeling and headache. Listening has also been frustrating. The noise even from Hubby's television became a bother and since I had no interest in what he was watching and only half paying attention to it, the show wasn't making sense to me causing me annoyance. I just wanted to lay down and sleep and keep all the confusion at bay.

Food was a concern because I knew I would need to feed Hubby. The aromas were terrible and bless his heart for realizing I felt so badly. Hubby was easy to please with simple foods.

When I tried to talk to Hubby, as usual, he had a difficult time hearing/understanding what I said and asked me 'what?' more than once, actually 3 times (not unusual). In a moment of snit I loudly repeated myself in a gruff tone resulting in Hubby replying in a gruff tone followed by my immediate apology for being so snappy and his having to get the brunt end of my frustration. The balance went back and all was well again after that.

I went to bed pretty early and our son called. I must have been half asleep and half awake because I couldn't really remember if he called or not when I woke but as the morning wore on (and I had some coffee) I was able to recall the night easier.

So what does my illness have to do with anything?

I wondered if the way I was feeling could be anywhere close to what Hubby experiences with Lewy on a daily basis.

A loss of bowel and or bladder control. Close calls and or complete misses.

Reading  frustrations. Hubby had an eye Dr appt that discovered beginning stages of glaucoma which can and are being treated with drops. They will do field vision testing in a few weeks. At the appt before last he was told his vision was actually 20/20. He always complains about not being able to see well and rubs his eyes. I wonder if much of the eye trouble is related to the way his brain often interprets what he sees.

Hearing problems.
Many many many, did I mention many?, times Hubby will say "What? after I say something to him. I can be standing right by him looking at him speaking in a normal tone when he will say "what?" I will admit this annoys me to no end but many times I have to chuckle because Hubby will repeat what he thought I said and it is so far from the original it HAS to make you laugh!
 He used to watch the news all the time but never does anymore. He can't keep up with the fast pace of the information. We don't watch TV movies together because he can not keep up with the plot. I usually watch them late at night while he sleeps beside me and I stroke his hair. He keeps the western channel on and the rerun channel. Some shows he has on we would have never watched before but I don't believe he "watches" them. I think that is one of the 2 channels he knows he can turn the remote to, so there it stays.

I try to avoid news shows and violence shows. Hubby has a tendency to incorporate something he heard or saw into his conversations or believe it has happened or is happening. Believe it or not we do not watch much MASH either. War related.
I started a journal about Hubby and Lewy and I found this passage (one of many) the other day

"June 29, 2008
I don’t know why but I find it amusing that he incorporates the TV conversations in with his conversations. Like the other night I was flipping channels and had stopped on a show about how guns were made got bored and changed to the news and they were talking about Nelson Mandela. (Hubby) started telling me about how he needed to find his gun and clean it. I asked him what gun did he have. He said he got it a while ago. I asked where he got it and he said from that Mandela guy. It struck me as funny."

A well meaning and beloved family member told me I was wrong in not keeping his brain stimulated by keeping up with the news. As much as I appreciate the advise I assured family member that at this point in Hubby's illness he couldn't comprehend the news. I felt that keeping stressful things out of his environment would keep him from feeling that he needed to take measures in warding off the bad. In other words, I didn't want to be mistaken as a criminal and beat up or worse while I slept.
Maybe I am wrong but I don't want to risk finding out.

Weakness. Hubby has lost so much muscle tone due to inactivity that any attempt to do anything results in muscle soreness and inability. Even opening a bag of chips is difficult but he tries. We will not even discuss jar lids. ;-)

SLEEP. Hubby sleeps so much. I wondered if because his brain is slowly being killed by Lewy he stays sleepy or if he is trying to escape the confusion as I did in my sickness. I just wanted to sleep and make the confusion stop. Sadly though Hubby's REM Sleep Disorder prevents him from getting a good rest. He thrashes and fights all the time. The other night he did that ALL night. I don't know if staying up all night would have been better  for him or not. I would have felt "safer".  Yesterday while I was napping with Hubby he was dreaming and woke me as he swore a vulgarity and mumbled something incoherent. Jerked his covers off as if he was going to attack someone and beat his side table up. I thought he was going to break his lamp again. Nearly off the bed and in the floor I reached over and stroked his hair. Not too smart on my part as he turned in my direction to ward off the rear attack but quickly settled. WHEW! I don't know if I could have defended myself by retreating. ;-)

Food, as mentioned in an earlier blog is a challenge. The very odor of food was a bother to me in my illness. To Hubby finding foods he likes is difficult. Hubby complains that his "Taster" & "Smeller" are messed up. Hubby often smells things that I do not so if food doesn't smell right to him he wont eat it. His taster needs stimulated by lots of  spices. Otherwise food is bland to Hubby and he doesn't like to eat. He has always enjoyed VERY spicy HOT foods so I make sure to keep the hot sauce handy.

I have always said I wish I knew how to get into Hubby's head to figure out what he was thinking and if what I felt during my measly illness is anything close I am sorry I said it. If any good comes out of my illness I hope it is that I will have a much greater compassion to Hubby's struggles as compassion has been bestowed upon me.

Psalm 103:8-12 (New International Version)

 8 The LORD is compassionate and gracious,
       slow to anger, abounding in love.
 9 He will not always accuse,
       nor will he harbor his anger forever;
 10 he does not treat us as our sins deserve
       or repay us according to our iniquities.
 11 For as high as the heavens are above the earth,
       so great is his love for those who fear him;
 12 as far as the east is from the west,
       so far has he removed our transgressions from us.

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