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.

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, March 6, 2010

LEWY vs PMS

I have worked closely with Hubby's Dr's to wean him from some meds I felt were not contributing to Hubbys physical and mental wellness. For the last few weeks Hubby has had no incidents of falling and he seems to be steadier on his feet and has a little more ability.
I fear that in my quest for Hubby's physical  gains the mental fluctuations have left me feeling like I am dealing with a double edged sword by the blade.

At a recent Dr visit with a mental health professional to discuss Hubby's feelings about his loss of independence, Hubby decided that I am the reason everyone is convinced there is something wrong with him. He is quite capable of taking care of himself and I have turned everyone against him. He then told his Dr that he was going to fix his car and divorce me.

Not a good day.

In Hubby's long silence between words and few word phrases to the Social Worker, Hubby announced, "I just found out about a house I didn't know we had".
The Social worker questioned Hubby about said house and I sat with a confused look on my face.
Asked where this house was Hubby couldn't answer so I asked him, "Do you mean the house we are living in now?"
Hubby answered "Yes"
I then asked "You mean the house we built 15 yrs ago that we are living in right now?"
Hubby looked confused and said "No"
I asked Hubby where said house was.
I gave him separate choices for deciding and each time he answered "No"
I asked what the address of said house was.
Hubby started giving the address but was having a difficult time recalling the numbers except for a couple I recognized so I asked him if they were thus and such and he, enlightened, said "Yes."
I looked at the Social Worker and he looked at me and asked me where that was.
I answered "That's our house we live at now.
Hubby insisted "No it wasn't"

Capgras delusional beliefs that people, places or objects have been replaced  with duplicates. 

After we left the Dr's office we stopped and had lunch and as I often ask whenever we have the opportunity to be out Hubby wanted to stop off at a friends place of business. Allowing Hubby to visit without my presence I sat in the car and waited for Hubby's return. Upon his return the friend told Hubby the tires he just ordered would be in Monday.
Stunned by this revelation and no legal authority to do anything about it, I simmered in my PMS.

Beating myself up for not shadowing Hubby. Refusing to make a stop and just bringing him home.
Then I would be beating myself up for keeping him captive. I feared that more than anything. I never want Hubby to feel like he is a prisoner. Sadly that is how he feels though.

So the double edge sword.
Hubby continued on the meds, stayed unstable sleepy and out of it not knowing who I am.
Not fearful or upset about his situation.
OR
Hubby cuts back on the meds helping him become more mobile and more alert to some things, yet still with a mental decline incapable of making decisions. Anxious and upset about his situation. Feeling trapped and controlled.

Now it gets interesting.

Lewy (Hubby) decides he wants to talk to me about leaving and driving but can't decide what he wants to say.

PMS (me) says that between Lewy's confusion and her confusion she needs to try and sort things out.

Lewy doesn't agree and says there is nothing wrong with him and PMS is trying to convince everyone that there is something wrong.

Gloves On. DING DING

PMS throws a verbal left and then a right jab telling Lewy she doesn't have to convince anyone of anything as Lewy does a good job on his own.  Case and point, house comment at appointment today.

Lewy counters with a series of paused 3 and 4 word incomplete sentences.

PMS continues the verbal assault with another right and a bash with a left and a heavy thud right into Lewy's insistence on how Lewy intends to care for himself .

Lewy leans left to avoid the verbal jab proclaiming he could care for himself like he used to.

In a succession of beautifully placed verbal punches PMS gets nasty and reminds Lewy he can't even care for himself at home, then lists the dirty list of problems Lewy has.

Lewy with his gloves up insists that there is nothing wrong with him and he has every ability to care for himself.

PMS circles the ring asking Lewy why he doesn't do anything on his own then.

Lewy jabs with short stuttered incomplete sentences asking what PMS does for him.

PMS, taking a stunned shot to the head launches a tirade of all the things she does for Lewy from personal care to home improvement for Lewy's safety and comfort.

Lewy stumbles backward into silence for as while then takes a wild shot at PMS
keeping him under thumb, never wanting him to go anywhere or do anything.

PMS  deflects Lewy's hit by reminding Lewy he chooses to stay home and never wants to do anything but stay in bed.

PMS launches an uppercut at Lewy by informing him that he is the one that chose to give up and just die.

Lewy then swings in with a confused glancing blow that leaves PMS herself reeling in confusion as Lewy once again takes off about the capgras house.

PMS is confused and realizes this is a no win battle she grabs her crying towel and both she and Lewy complain with headaches and go to neutral corners.

I am not sure who got the TKO as neither seemed victorious.
PMS surely doesn't feel like a winner.
In Lewy World everybody looses.
And I feel like the biggest loser of all.

Tuesday, March 2, 2010

Super Heroes

 Hubby has no concept of time.

Time passed, time passing or time to come. Days, weeks, months ago could be a few mins ago to Hubby. An hour ago could be last week.
With no time concept Hubby is liable to do or want to do anything at any time.

The other night while we were lying in bed he decided he needed to shave. I am always happy to oblige this request as he hasn't the ability to do it on his own anymore, but 11:30 at night is a little late for me so I didn't offer. Hubby rose from the bed and walked into our bathroom then returned a short while later with a towel wrapped around his shoulders. Hubby made an announcement "I'm ready to take off"

Of course I laughed and asked where he was taking off too. He told me he had on his Superman Cape and clutched the towel. We both laughed and I got up to assist him with his shaving. After all, Who could say no to helping Superman? ;-)

Then there are occasions when he will get up at extremely early hours like yesterday.

Hubby had gotten up and ready for the day way before I ever got up and had any morning coffee. (never a good thing)

I found him sitting at the dining table going through the pictures I had laid out for scanning. I think I scanned about 100 new ones and added them to the digital picture frame. Hubby was very pleased with them and he and I sat and admired and talked about our lives that were flashing before our eyes.

I can not even begin to say how grateful I am for this awesome gift. A gift that reaches much farther than just a piece of technology. A gift that reached into the mind and heart of Hubby. Returning happy times and precious memories.

He then decided he needed to go outside and do some work on his car. He has his old car sitting outside on flat tires so I don't fear he will try to drive away. Nor do I believe he has the ability to fix the tires. He picked up a battery that was dead and carried it to the porch. He then connected the charger to it after filling the water levels in the battery. Then things got fuzzy. He wasn't sure how to turn the charger on so he came to me and asked for my help. 

I was surprised he was able to lift the battery and carry it. He hasn't done anything remotely strenuous in a very very long time. Because he sleeps so much and never does anything, his muscles have all atrophied. These days any activity on his part causes him discomfort from sore muscles. He stays in chronic pain, I believe, mostly as a result of no daily physical activity. I will not go as far as to say that is the only reason.

Hubby piddled around with his car for a while then came inside. I had been checking on him and at one point he was leaned over in his trunk. Feet on the ground, knees still locked so I knew he was ok but I thought to myself , "His back will be killing him for sure." And sure enough just a matter of moments upon his entrance to the house he requested a BC Headache powder for his aching back.

A couple of hours later he requested another but I told him it was way too early for another as he had just taken one. He wasn't happy with this answer and quizzed me about the time. Hubby stayed up the rest of the day but never did go back outside for anything. Later in the evening he was still complaining about his back hurting so I offered him another BC. He looked at me a little annoyed and said. "You just told me I couldn't have one, it was too soon". I told him that it was a few hours earlier I had said that and enough time had lapsed for him to have another. Suspicious, he accepted my offer to get him a dose.

As a result of Hubby's movement he was able to have another movement ;-)

Because Hubby doesn't move enough and continues to have a good appetite when he is awake or raiding the refrigerator at night while he wanders, he suffers with constipation. I keep harping to him that he needs to drink more fluids and move more but my words just float away. If he is going to sleep all the time I almost wish he wouldn't eat so much. If he's going to stay awake I wish he would be more active.

I guess I'll just keep wishing and every 3rd day or so arm myself with the bathroom weapon of mass destruction as I assist "Superman", as his sidekick "Plunger Girl".