Those Darn Bunnies

A dear friend came over yesterday and brought the makings for both lunch and dinner. She had arrived under the assumption that she would roll up her sleeves and help out in any manner that I chose. Unfortunately, my body and my calendar had me rescind on that offer.

Many people have offered to come to the rescue to help out Bob or me around the house. Now admittedly, I have never been known as an immaculate homemaker. Martha Stewart is not nervous of her demise due to my humble efforts. Even so, things tend to build up quickly. (That is not a pun to describe my family room table’s mountain currently growing faster than the mold in my refrigerator.) Bob drools at our window, just itching to be outside puttering in the yard while his body firmly anchors him to the couch.

We appreciate the many offers from our marvelous friends, but the acceptance of such proposals is not quite as easy as it sounds. You have to humble yourself to admit that you are no longer capable of many easy jobs around our home. I have become much better at those feelings and have gradually requested some assistance. Once people arrive set to do our bidding, we open not just our mind set but also our home’s disheveled appearance. A feeling of something close to shame silently chokes our pleas.

The goal yesterday was to finally put away the Easter decorations that still litter our home. I had planned to donate many items that continue to clutter our basement. My kind friend was unable to complete this task independently. My addled brain could not make such decisions. To sum it all up, Easter bunnies still scamper on our mantel.

In some ways, requesting help from even the kindest of friends declares that we are currently physically (or mentally J ) unable to complete day-to-day tasks. It also announces that we don’t think we will be able to do so anywhere in the near future. It almost is like waving a white flag. It not just humbles our pride but crumbles any self-esteem that still clings to our hearts. If we don’t ask for help, I get more angry and frustrated as those darn bunnies still glare at me. I need a genie to magically organize our belongings while we slumber and snore away in our bed.

Our basement is somewhat of a joke to our family as they question how so many boxes have transformed the basement into an obstacle course. They readily announce our shortcomings. Bob and I nod and admit our weaknesses with other feelings simmering away.

As I check over my writings, it sounds as if I am wallowing in self-pity and deserve to live in my squalor. I’m blessed to have people who care enough about me to want to help. I mustn’t let other emotions strangle their caring offers, but they must also acknowledge the multiple feelings that hide in my heart. It’s harder than it appears to open my doors to expose my faults. Oops! I’m starting to wallow again.

So if your offers are gently declined, let that go. We’re balancing the need to challenge ourselves physically with gratefully accepting the generosity of others. We’ll get there. Thanks for caring!

We Trudge Along

Each step that Bob and I trudge through indicates the effort that we take in order to fit into this active world. With both of us suffering from various chronic illnesses, we can empathize with the pain endured by each other. It’s somewhat humorous when new doctors ask if either of us is on any medications or if we have had any surgeries. My zippy self wants to retort with, “Do you want this week’s or this month’s changes?” I’ve got to have a little fun.

I’m back with the kiddos at church. They continue to make me smile and remember some of the reasons God planted me on this planet. Their stark honesty and skewed perspectives remind me of the joys inherit in my day-to-day life. I can openly share my love and have it returned exponentially.

By Friday, my body reminded me that I am no longer 27. Double that and you are getting close. The nap immediately taken on my return home on Friday felt fabulous and could be indicative of those before and after photos visible in many of the tabloids. My mind still feels a little muddled and my body cries for the return of my neurostimulator. This too shall pass.

Bob has worked hard this week to complete some of those tasks he placed on his own Honey Do list. Although employers would cringe at any dollars per hour rate, a simple salary would be appropriate. We are slow. I am proud of his efforts. He obviously strives to beat Lewy but yearns to do more as he watches neighbors place mulch and wash cars. I wish I could truly let him feel the pride I have for him.

His emotions are still hard for us. Physicians have described them as part of the mood disorder associated with Lewy Bodies Dementia. Some of his medications are aimed to reduce some of the “road range” attitudes that now are part of his daily behaviors. It’s surprising to see my laid-back hubby slowly morph into some other character unknown to either of us.

For the sake of honesty and humility, I probably would not be a recipient of the Miss Congeniality award. Headaches and back pain have returned and I’m not too pleased about that. It sometimes feels like I am walking on hot sand as I try to avoid topics that are now taboo with Bob. We have been fighting our chronic illnesses for too long and are both impatient to see this regression.

Our love is still obvious as we hunker down on our personal ends of the couch. Our daily prayers are for guidance and strength. It takes about 36 minutes to walk from the family room to our kitchen. Perhaps that is why my body has rounded so I may soon be able to roll there instead of slowly plodding along the way.

Oops! I’ve returned to negative reports about my own self-image and I can hear the responses of my daughter. It’s probably my own efforts to remain upbeat and provide some humor along the way. It’s one more thing I need to work at.

That’s our week and probably our month and year and even decade. We are blessed with a strong belief in God and a strapping support system waiting for our call. We’ll be fine for we are together and determined. Life is good!

Is It Funny?

As you can probably imagine, I am a voracious reader. I feel it important to post this characteristic in order to inform others that I know and can correctly use a nine-letter word. Besides a variety of fiction texts, I’ve been perusing books about Lewy Bodies Dementia. I’m praying that this knowledge can better prepare me for what lies ahead. The outlook is daunting at best so I have some work ahead of me.

My latest book was Over Streams & Squirrel Woods. Although this volume was not my favorite, parts touched my soul and made me ponder my own opinions. Let me share one such portion:

People with dementia are easy targets for humour. They can’t defend themselves, so any treatment can be meted out to them: minimum care standards, cheap, badly cooked food and love and respect withdrawn. Is this why there is no political will to improve elderly care? There is no legal requirement to do so, many are too ill to vote or complain, so any attitude is excusable. We lock them away out of sight. They’re deteriorating so why bother to do more than leave them in front of a TV, until they give up living.

I’ve noticed that I always note much of my life with a humorous tint. I had already worried that this view may need to be modified as reality slapped me hard and fast. I would never want to ridicule my fantastic husband, particularly as his fight with Lewy becomes fiercer.

Help me out with my quandary. How can I survive some huge hurdles ahead without taking a positive spin? I’ll need to balance my remarks with careful knowledge on the identity of the speaker. How do I share this on a blog when my tone is lost and readers may not be aware of my intentions?  My perspective must always first look at my darling. Jokes won’t take away his diagnosis and his bitter battle.

As my blog has shifted, please write your comments here. (Can you hear my desperate begging?) If that is difficult, jot me an email or respond on Facebook. I need some help! Thanks for caring.

Twelve and a Half Weeks

Twelve and a half weeks ago, my health took a dramatic turn requiring CPR after a cardiac arrest. Tomorrow, I finally go back part time to my job at church with people who worked diligently to help in my recovery. I could not be here - literally - without my fantastic family. God bless that Williams family and my darling husband. Thanks God for being with me.

The wonderful women at church have provided me with a complete support system that filled my heart with love and concern. These people definitely walked the true path of Christians as they wove their love throughout each day. I am so blessed to now know these women as more than peers but some of my very dearest friends.

My fellow Stephen Ministers demonstrated the power of prayer. They were always only a phone call away. They maintained a direct path to God at the times that I needed that the most.

My daughter and her family came immediately to my side. Those darling little grandsons were two of my biggest reasons to keep on fighting. I still picture Teddy’s pictures on the glass in ICU. The support of my son-in-law, as he also rushed to Minnesota to allow my daughter to be by my side, will not be forgotten. I didn’t think it possible, but I have come to have an even greater respect for my fabulous daughter. I thank God each day for having her only a phone call away.

Then there is Bob. It was not easy for him to remain by my side and report my changing condition to a wide variety of family and friends. I could always feel his love gently wrapped around me. One of my strongest images from those full days in the hospital is the picture him standing back watching over me when I had major problems while they were inserting my PIC line. The look of fear, dread and depression etched every line on his face as he watched more and more medical professionals rush into my room. God provided me with one fantastic spouse.

I haven’t used this blog for a long time. I needed and still need to truly evaluate what I am ready to share with anyone who stumbles across this post. Not only my health concerns, but also my husband’s fights with Lewy Bodies Dementia fill my thoughts leaving me much that I need to contemplate. I foresee myself requiring a lot of time questioning my purpose in whatever amount of time that I will continue to walk this Earth.

So with these words, I will stop my typing for tonight. I’m still unsure on my frequency with writing some posts. It’s not that I won’t continue my frank honesty, but I need to decide myself my own direction. Do me a favor and go give your family a kiss or a phone call. You never know what your future will hold.

WOW

I just glanced at this site since I have been ignoring my little keyboard to express any of my feelings and happenings. I looked at the bottom of this website to check out the page views and was amazed to see that I am over the 10,000 mark. Holy moley - that's a big number. It's even bigger when my writings have become more and more infrequent, lacking any regular schedule. Thanks everyone. I'm amazed. We'll fight Lewy while you root us along on the sidelines and take time to share with others. God bless.

Looking for the Good in 2013

I so much remember as 2012 crept into our lives that my hubby confronted it with a sense of zeal and optimism that usually isn’t quite as readily apparent in his personality. Bob was convinced that 2012 would be a good year for us with important positive changes in our health and diagnosis.

He was accurate in the prediction that 2012 would bring us lots of news affecting both of us in the health department. Obviously, the biggie for us was Bob’s summer diagnosis of Lewy Bodies Dementia. We had our moments of “Now what in the heck are we going to do?” and even “What in the world is God doing to us? This is nuts!”

Now, I for one have never been one to confront God or state my displeasure to Him. Those emotions had never been allowed to show to the Almighty. Bob always has felt more comfortable telling God what it is like. He even felt comfortable yelling at God about various cruddy happenings.

Bob and I are to a new level as we combat Lewy with all of our gumption. It’s vital to get information out in the vain hopes to bring money for research so we can squash this horrid disease.  This blog is just one way we have attempted to spread this news.

Our perspective on Lewy and even on life (Boy, this suddenly has a more serious tone to it) has swayed. We are trying to make the most of our days and search until we find the best in it. Bob and I will fight things together and celebrate our lives holding hands. We have many blessings, not at all limited to our family and friends.

We will start 2013 with even more of a renewed sense of security. God has blessed us. It is our responsibility to find the good in each day – not really a difficult task. May your outlook also be through those rose tinted lenses. Thanks for being part of our lives.  Life is good.

God Uses this Blog to Show that Life is Good

       Take time to look out and see all that is good!

Watching Life Approach

I’ve been skating through these winter days, not willing to totally succumb to this latest strain of influenza but not eager to fight it off either. A week ago, I lay comatose to the world, my body inert in a darkened bedroom. Life is slowly being restored, but I’m not sure if my brain is ready for such a change. As long as I am still, I appear almost healthy, but if my body is tilted greater that three degrees, coughing racks my body. Not a pretty sight.

Bob and I have needed to take our names from participating in many wonderful activities for the past week. We only made it to our night Christmas service for all of ten minutes. Days with the grandsons just weren’t possible this year. A few hours on Christmas day brought fabulous memories our way. Parties have needed our regrets as we pretty much ignored anything on the social calendar.

We really regret that we were unable to attend a special birthday celebration today of a dear member of our congregation who is truly ninety years young. Earlier this year, he said goodbye to his dear wife. The two of them were role models of an ideal Christian couple always willing to share their love and knowledge of the Bible. So although we missed the cake and candles, we’ve tried to keep that endearing love visible in our lives.

I wonder what people think when they look at us. We’re obviously not a poster couple for any of the newest diet trends, although we would be a darling “before” shot. I don’t want to become known for any hermit trends although that would surely be easy. I would hope that glances our way are not ones of pity for God has provided us with so many blessings. Without seeming morbid, I want people to be able to witness our deep love for family in a Christian home. (Is that laughing I hear out there?)

I need to lose my narcissistic tendencies to view the world of Lewy through the eyes of a caregiver. Bob is trying to fight off the encasing bonds, and my job is to support him. When Bob is getting stressed about bills, unhappy family members or pain, Lewy sneaks up behind him and drops a trance over him. I have to admit that I need more patience. I don’t need to always be the aggressor ready to go to battle against LBD. Sometimes, I must just gently be by his side and together to watch this disease approach.

Life is good. I can’t strive for constant perfection for then I miss the wonders of a job simply well done.

God Uses This Blog to Remind Me that Life is Good

          I need to slow down for things get blurred when living in a blender.