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.

Showing posts with label Scripture. Show all posts
Showing posts with label Scripture. Show all posts

Monday, April 5, 2010

Sufficient Day

"I messed things up, didn't I?"

I had to agree with hubby's statement. We were in a fix.
The next statement made me laugh,

"You didn't have to agree with me."

I had to laugh and hugged him tightly. He then said "I know I can get hateful sometimes." his way of apologizing.
I said that I understood that it isn't always him and he can't help it, for the most part. I hugged him again and reminded him I loved him. He said he loved me too.

I have this very deep faith. I follow the leader of my heart. Even with this faith, many times I see a road that looks easier to take and attempt to travel it only to find myself in a mess for sure. I run back to the leader and find Him waiting for my return and happy to see me. I follow and the way looks steep, narrow and scary. I cover my eyes and ask "Are You sure, are you sure?" but I keep walking. I wonder if He sighs as we pass another pretty path and I point to it with anticipation to go that way. Forging ahead there are times I find myself mired down in the day to day monotony so I sit on a stump and just sit and sit. Absorbed in myself  and my situation until I get knocked off by some strong event. Again I follow for fear of being swallowed up in fear, depression, anger and bitterness. Not that I'm not chewed on by them, I just don't want to be swallowed.

One day I know I will come out on the other side until then I take one day at a time. I try and do the best I can for the day and let tomorrow worry about itself.

Truthfully I wasn't sure how we would get out of our fix. I just knew that I would do what I could for the day. Blessed beyond words by the most understanding people, prayer warriors and family. Our youngest daughter and our blessing of a son in law took it upon themselves to pay one of our bills. My heart rejoices that they want to take care of us, at the same time my heart hurts that they felt it necessary. All of our children and family and friends have rallied to offer help in whatever way. I believed it would all work out some way and to some degree it has.

Hubby had the bank check from the account he closed. He never signed it for me to use as it is in both of our names. He even hid it from me by putting it under a drawer. He later revealed it's location to me after we had the mess conversation. He finally signed it and I shall carry it to the bank and open an account in my name and pay our due bills. Of course it will only go so far and when it's gone it's gone but at the very least the bills will be paid this month. God is always an on time God :-)

The next obstacle is his monthly checks. When will they arrive and how will we be able to use them if he hides them also? But that's a problem for tomorrow.

Matthew 6:34 Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.

Wednesday, March 10, 2010

Stinky Fruit

Galatians 5:22-23 But the fruit of the Spirit is love, joy, peace, patience, kindness, goodness, faithfulness, gentleness and self-control. Against such things there is no law.

 I think fruit baskets are so pretty. Big, roomy, beautiful, intricately hand woven baskets. I imagine that inside them contain edible goodies of
 Apples, red, green and yellow, with deep colors. Some sweet, others tart, Some crisp some a little softer to chew.
 Peaches plump and tender with that fuzzy baby soft feel to them. Once bitten into a syrupy sweet juice rolls down the side of your mouth.
 Bananas safely swaddled in their yellow cocoon protecting their delicate sweetness.
 Pears smooth yet soft to the touch.
 Strawberries bright red capped with their star burst leaves.
 Oranges round with their bumpy outer layer encasing the sweet goodness of those small juice filled capsules.
 A tangy lemon that can leave you with a sour looking "lemon face" but beckons you back for more.
 Lest we forget the raspberries or cherries or blueberries or the plethora of others fruits each with their own delicious flavor and appealing looks.

As I envision this beautiful basket my mouth waters and desires to have some of this goodness and upon seeing such a basket I'm sure some of you would even be tempted in wanting to partake of  it's bounty.

 As a child of God and believer in Jesus I consider my body a vessel or basket if you will allow me, for the Spirit to reside in. This does not make me perfect by any means. My basket although intricately woven is pretty bent and lopsided. The fruit inside that I desire to have is not always fresh. Many times my fruit begins to turn. The fruits bare spots of brown. Many times I overfill my basket with sourness and bitterness. Some fruits of the not so appealing kind I have a tendency to throw. Other fruits I completely ignore leaving them to become molded and rotting. As such my basket begins lo leak and ooze leaving a messy trail. Sounds gross, feels gross, smells gross.

Stinky Fruit!

Lewy Body is certainly a strange  and complicated disease. Not only to and for the person that it has been afflicted but also to those who love them.
As a spouse and a full time caregiver I try so hard to be loving and supportive. I have Hubby's best interests at heart and I advocate for a better quality of life for him.
 
I love Hubby. He is the other half of my life. During the time of our 17 month separation I realized that I had not many adult memories that didn't include him in one form or another. I couldn't find much that didn't involve him.

I was joyful he returned even though he was soon diagnosed with Lewy. I still am. I make it a point to look for something daily to find joy in. With Lewy some days are easier than others.

I try and keep an inner peace for both of us. Hubby has a difficult time processing lots of information. We tend to always eat at the same place for the familiarity. The crowd of people, although he is familiar with many of their faces, and their conversations has a tendency to confuse Hubby and he will usually sleep a few days afterward whenever he is overstimulated. We try and remain a drama free zone.

I am fairly patient person. I learned NEVER pray for patience as it's just asking for trouble. Tribulation worketh patience. My lessons learned! Why don't people realize that? LOL! So, it takes at LEAST 2 hrs for us to get ready to go anywhere. So, I can wait 30 or more minutes for Hubby to finish a meal before we leave a restaurant. Yes, it takes Hubby an extremely long time to answer a question or say a sentence. We won't even mention the time it takes to walk from the bedroom to the bathroom. I have nothing else of great importance to do, and if I did, I would have made different arrangements to accomplish my task.

I make an effort to treat everyone with kindness. Hubby is no exception. Kindness goes a long way, even with Lewy.

I seek to do good for Hubby in ways that will make him more comfortable and his life more convenient and less stressful.

I remain faithful in advocating the best care for Hubby. I promised better, worse, richer, poorer, sickness and health until parted by death. I meant it, I mean it. I will do my best to keep Hubby home for care. I do know the day might come that placement in a care facility may be the best thing for him. Should that day ever have to come I will know in my heart that I did everything in my power to afford him a quality of good life and placement does not mean giving up and forgetting.

It is my desire to handle Hubby with gentleness not only in touch but in word.  I let Hubby do the clinging to me if he needs support for walking, standing or whatever. His muscle tone is so weak and skin so delicate that a tight grip can leave a bruise or a mark. I try to speak in gentle tones as not to startle Hubby. Often though he is startled by me whenever I say something to him. Sometimes he even makes me jump.

There are times when Hubby can do or say things that can leave me annoyed or frustrated or angry. Much of the time I have to treat things like water off a ducks back. Sometimes I can remember that becoming immediately upset only leads to frustrations for both of us. SO I take a split moment to ask myself, how much self control shall I apply? The usual answer is a ton!

Now the BAD news. I finds that there are times I get sucked into the rotting fruit category.I don't check the basket for signs of decay and place heavier items on the tops of delicates leaving them squished a unrecognizable by the time I choose to dig them out and engage in a food fight. Sometimes I throw the entire basket. Sometimes I completely trip and scatter my fruit unable to find it. Much of the time because I chose not to really look that hard for it.

There is GOOD news. Human as I am with emotions and feelings of the stinky oozing nature I still covet to have good fruits. So instead of beating myself up over and over about the things I did in a food war I can ask for the loving Grace and forgiveness of my heavenly Father. He, the master gardener and healer purges the bad fruits from my basket. Making it whole once again and replaces it. He plucks the thorns and rocks I have collected. Sometimes it hurts when He does. Sometimes he shows me that the things I have placed in my basket weren't really fruits at all and I hope that I have learned to distinguish them from the real thing the next time I see them. He balances the sweet with the sour and arranges them once again in my lopsided basket.

If I learn something from Lewy I hope it is how to polish those fruits and share them with others. My desire is that others WILL want to partake in the bounty of goodness.

I also hope the Hubby is the recipient of many of those good fruits, just not by having them thrown at him

I serve a loving God who knows how to take care of stinky fruit.

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.

Friday, January 8, 2010

A day in Lewy Life

I have really enjoyed the reasons to smile list and I know some are trying to make their own.
BUT I have really struggled some days to find the smiles. I know that what is posted makes things sound so easy. Honestly finding something amongst the struggles we are faced with every day can be a tad overwhelming and there are times I just don't want to look for anything good. So I decided to share a recent day and then what I chose to concentrate on.

Hubby sleeps most of the time. He is usually up towards the late afternoon and as the night wears on he becomes more confused about things. The last few days he has been very busy going through everything. I kid you not about everything, looking in and pulling things out of every drawer and cabinet. I have asked him numerous times what he was looking for and he just says he is looking. I think he is looking for anything he may recognize as his or have some memory of. Of course what he takes out NEVER gets put back by him. It gets frustrating seeing him sit in the middle of the floor pulling out all the clothes from the drawers and rifling through papers knowing I am the one to pick them up.

On one night in particular he ran across the car title to his green car. Last year I renewed the tag although he hasn't driven in almost 2 yrs now. It expires in May and he came to me with title in hand and asked about the license. I explained the tags were still good he left the room. He returned again about the tags. Once again I explained. He did this over and over and over and the final time he came and handed me the title and said in a huffy tone, Well this says 1994. At which point I threw my "Good Wife" crown, banged and re bent my scepter and wanted to choke someone with the frayed sash and said in a gruffly annoyed tone, THAT'S THE YEAR THE CAR WAS MADE!! He looked at me suspiciously and left the room.

Deciding that there was nothing to smile about for this day I retreated to play Zelda and save the monkeys. On the way I let the baby kittens in the house. Seeing the kittens he then shuffled into the kitchen and watched them play for a little while then went to the dining room and started going through the books and pottery and dishes (I could hear) then I heard a THUD!! I rushed to the room to find him lying on his back as he had taken a tumble in the floor. As the norm for falling I survey for visible damage and make sure all limbs are movable. Then I wait for him to decide when he can get up. I have learned not to try and physically help as he can not understand the process and the result would be both of us getting injured.

As he lay there one of the baby kittens rounded the corner and walked over to him and stared at him. He in turn looked at the kitten and said, "It's a good thing you weren't under me". I started laughing and he smiled. He finally got up and I re checked for damage then we went to bed. That was close to 11 PM.

My status for that was: WHEW Barely got this in. Jan 4: Hubby enjoys watching the baby kittens play. I let them come inside so he can see and interact with them. I enjoy seeing his gentle nature with them. :-)

So perhaps the reason for sharing this was to show you that no matter what situation you may find yourself burdened or overwhelmed by keep looking, seeking. The positive is always somewhere. It wont always be funny, it may just be knowing a friend said they were praying for you or a stranger did something considerate.

This is my resolution for the year. "Philippians 4:8 Finally, brothers, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things."