"Unplug for a Day" Challenge

This has been the summer of the ice bucket challenge fundraiser for ALS. All month I've seen friends douse themselves with ice water to raise awareness of this neurodegenerative disease that eventually results in total paralysis. The ice water is apparently to remind them of the nerve-shocking effects of ALS. What a successful fundraiser this has been for their organization!

I wonder, what kind of fundraiser would be useful in making others more aware of symptoms of dementia and brain injury? Short term memory loss, in and of itself, doesn't sound too frightening, but I'm sure there must be something that would allow one to experience the life changing event that it is.

Perhaps the activity that would most closely simulate what it's like with dementia would be to "unplug" for a day. No electricity, no technology, for a whole day.

I will attempt to relate this to Dean's present life:

• Without proper lighting, our senses would change...Dean has this challenge with vision in only one eye and with little periphery vision in the other. He falls a lot, just like we might in the dark. His other senses suffer too. Limited hearing in just one ear and having no sense of smell are what he lives with every day.
• No electricity would make our daily tasks more challenging...Dean has difficulty with many chores we take for granted. Taking a shower, for instance, is a major undertaking.
• No technology means no cell phone or computer. For us, this would be very limiting, especially if all our contact info is on our phone...Dean misses every day the enhanced communication and socialization that these gadgets bring into our lives. But not having a cell phone or Blackberry for some might be like having part of their memories erased. Say hello to Dean's world.
• No television or entertainment...Dean's greatest desire is to interact socially with his friends, and this has become more and more difficult as dementia takes over his life. He misses this activity as much as people would miss their television programs.

Yes, Dean misses out on a lot in life: his senses, ability to perform simple tasks, being able to remember what he did just a short time ago, and just interacting normally with others. In a sense, he has become "unplugged".

But God has not left him powerless. Many times angels have kept him from falling. He has a faithful wife caregiver who is able to perform the work he can no longer do, and most of all, he has retained his desire and ability to worship God. Human relationships may have suffered, but his spiritual relationship with God has never been better.

If caregiving for Dean has taught me anything about life, it's the meaning and value of being "plugged" into God.

P.S. Remember to donate to www.biane.org

This Battered Life

A few blogposts ago, I reported my long-due visit to the dentist. Well, this has turned out to be a sinus problem rather than a dental one. I am taking a daily antihistamine and using a sinus rinse quite frequently and the facial pain I have experienced all these months has wondrously disappeared. Being on oxygen for nine years must be very drying on the nasal passages.

But now there's this sore on the bridge of my nose (been there for weeks) and it just keeps getting worse. It couldn't be in a worse place--right where my nasal mask hits. The doctor suggested not using the bi-pap for awhile or changing masks (which I will be able to do this coming week, when Medicare will pay for another type of mask).

But doing without the bi-pap is just not an option for me. I have tried cutting down on its use and napping during the day without it, with just the oxygen feed, and for a couple of hours at night. But it feels like going into a boxing match without gloves or any protection. I wake up feeling pretty battered.

This has reminded me of waking up at the Resurrection when Jesus comes. We won't feel battered then. We'll wake up as refreshed as the day we were born. But even better. For gone will be all our human frailties, our petty health grievances. The Master Physician has a whole new body to give us--one that won't wear out or grow old. No more birth defects (like my scoliosis) or brain injuries from having tractors run over us (like my husband). Now that's one kind of waking up I won't mind a bit!

Babysitting, Old and Young

Two big events this past week added to my already exhausted body. But I wouldn't have missed them for the world.

Vacation Bible School with my two granddaughters was wonderful. Watching them do the motions and singing the celebration songs, learning about how to trust God through the story of Moses, seeing their eyes light up with a new craft each night. These were priceless moments I was privileged to share with them.

Then yesterday was Jenna's big 6-year-old birthday bash. The kids went swimming in their apartment complex pool, enjoyed a bouncy house, and of course, the traditional ice cream and cake. I loved every minute of it. And so did Dean. Although I was beginning to worry about his third helpings on the eats, and how many times we had to refill his soda and chips.

But we made it through the week. I have made up for lost time with more sleep this weekend. Bracing up for another week of babysitting my three charges (I include Dean in the count.)

Babysitting for the young and the old certainly has its challenges, but it has also taught me about the human condition. When I am weak, He makes me strong. Some days I'm weak on patience, but strong on perseverance. Then sometimes I stumble with my physical ailments, but He gives me strength to get through it. I'm constantly reminded of my humanity, but also of my need for divinity to step in. Thank you, God, for getting me through one more week.

"Therefore I take pleasure in infirmities, in reproaches, in necessities, in persecutions, in distresses for Christ's sake: for when I am weak, then am I strong." II Corinthians 12:10

Our Father Knows Best

This past week has been a repeat of something that has happened to my car for the last six months to a year. Every month or so I go to the garage to go somewhere and the car won't start. Even my totally expert mechanic son-in-law couldn't solve the mysterious car behavior.

There have been times when after several tries it will start for us. Or it may start as they are backing it out of the driveway for the tow truck to pick up. Once they got it towed all the way to the garage and before they could get their diagnostic equipment to locate the problem, it would start again.

But this week we actually solved the dilemma. It was a leak in the crank sensor. Don't ask me any more than that, but we got it replaced and now I'm hoping our worrisome non-starter has kept me home for the last time.

As my son-in-law related the problem to me, he was also relieved that this refusal to start only happened in my own garage at home. We both felt the hand of God in the situation. I could be tempted to wonder why God was not able to just make the car start when we needed it to. We did pray for it many times to start and it didn't.

This seems to be a pattern for God. He doesn't promise everything will work out as we would like. But that doesn't mean He isn't in our lives working things out as He sees best. We won't know this side of heaven all the times He has intervened for us, keeping our way safe, in ways we hadn't imagined. Surely, our Father knows best!

My dad's '96 Lincoln Town Car

Our Tame Holiday

As with most people, I still look forward to holidays and celebrations of important events. Problem is the older we get, coupled with Dean's dementia issues, our holidays are getting more and more tame.

For the Fourth of July we casually watched the neighbors' fireworks from the safety of several blocks away. This wasn't always necessary before our new next-door neighbors moved in. Even last year we could serenely take in the festivities right from our own front yard swing.

These new younger families are the firecracker-light-'em-yourself type though, so things got really noisy and festive on our street last night. (Besides, I was afraid the air would get too smoke-filled. Being on oxygen, I'm sensitive to that. Learned my lesson with that a few years back.)

Finances what they are and keeping the food diet trimmed down with the healthiest foods we can afford, we didn't exactly splurge on holiday treats either. But I relented and got some vanilla ice cream to go with our frozen strawberries and blueberries, presenting a patriotic red, white, and blue dessert to eat while we watched the colorful displays in the sky.

I can totally relate to soldiers suffering with brain injuries and P.T.S.D. though. They must not have looked forward to hearing the pop-pops all through the night. What terrible memories these fireworks must hold for them. Or anyone who comes from a war-torn country.

Not having had their experiences though, I try to focus on the glorious appearing of Jesus in the clouds someday. That event will make all our attempts to beautify the sky on the Fourth seem like nothing. But there will be people then who will also dread it and others who rejoice that it's finally happening.

"...and they shall see the Son of man coming in the clouds of heaven with power and great glory." Matthew 24:30

Let's all be ready!

Don't Wait

When I took Dean to the dentist the other day, I just had to ask the receptionist how much teeth cleaning and an exam would cost. I've been having mouth and jaw pain myself now for months and been worrying about whether it might be a dental problem, the start of gum disease or something.

At first I thought the pain might be teeth grinding or jaw clenching--a response to stress. Especially since it seems to come and go. I even changed from a full facial mask at night back to my nasal one for my bi-pap. But even that didn't help for long. Just trying to find my own solution. Something that won't cost me much, since my insurance doesn't cover dental, and only partial medical.

Well, the dental exam she finally gave me just revealed that I do have a lot of plaque, but only one small cavity to fill. Not bad for not seeing a dentist for seven years, I thought! She thought getting my teeth cleaned would relieve my facial pain, so I'll get them cleaned and the cavity filled this coming week. I have my doubts that it will solve anything, but will see. Thinking now it might be a sinus problem. There is a tenderness higher up on my cheeks now when it does hurt.

What does all this have to do with caregiving for Dean? Nothing, really. Except it does reveal my tendency to work things out on my own. To shy away from things that cost something (understandable though, when finances are so tight--not uncommon for caregivers, by the way).

But all this is informing my faith life as well. I need to turn things over to the professionals more. And my professional Spiritual Advisor would be God. Counting the cost has to go too. Sin, no matter how painful or intermittent it may be, has to be resolved. Jesus already paid the price. Life is too short to be figuring things out on my own.

It's a Miracle!

It's been awhile since I posted on this blog for caregivers. I've made a grand start a couple of times, but just never could grab onto the right train of thought. I guess my thoughts had actually all left their stations and were going in all directions and it was hard to track a traveler down for his particular destination.

But now that I've lost my voice with a cold virus and life is moving at a slower pace, I have an urge to get some of my thoughts out to somebody. They may not be worth anything, but they will serve to relieve my guilt of silence.

First of all, I thought the world would end if I became sick with a cold again, and certainly it would be in God's interest to keep me healthy and strong. This was my prayer at least as one after another of my loved ones got sick. It's true that it's been hard to find substitute babysitters for my granddaughters, and Dean has had to do more for himself since I got sick. But hey, life moves on. With or without my services.

I was a bit upset with God, but only for a few seconds. I had prayed for a miracle to happen and for me not to succumb to the pestilence that surrounded me, but it was not to be. Instead God has performed another kind of miracle though in helping me survive this new onslaught of sickness.

God knows what He's doing. I am content to be His instrument, as long as He gives me breath. Even if that breath is aided by a nebulizer, a bi-pap machine and oxygen concentrator every night. So there, cold virus, do your stuff.