My Roller Coaster Life

I occasionally hear from other caregivers, especially when they are struggling through some crisis. It brings my own difficulties into focus, and sometimes makes me feel a bit guilty for reporting mundane events in this blog.

But sometimes the mundane, ordinary things are what we like to hear. They are a true reflection of what caregiving is like. They give us hope that our lives will eventually return to some kind of normalcy. Even if that normalcy is unlike any others'.

To be honest, there are many small ups and downs with caregiving. But isn't life like that on the whole?

• One minute, I'm doing a happy dance when they tell me on the phone that Dean has passed his compliancy requirements with Medicare and will be able to keep his C-PAP.

• The next, I still trying to convince Dean that same night that he has to wear the C-PAP, in order for BOTH of us to have a good night's sleep.

• One minute, I'm enjoying the company of friends we've invited over for dinner (something I've started doing again to satisfy my social needs).

• The next, I'm trying to explain to a telemarketer that the 800-call my husband made to them was a "mistake" (his attempt to be social and connected), and to please take us off their call list.

• One minute, I'm happily watching my two granddaughters wash dishes in my sink.

• The next, I'm down on my hands and knees, trying to clean up the pancake batter that Dean has accidentally flung all over the kitchen.

Yes, life is just one emotional bump after another. They may not all bring us to the mountaintop or the lowest valley, but it's a ride nonetheless.

I'm determined to just sit down in my roller coaster seat, holding Jesus' hand all the way, screaming only at the scariest parts. That's all He expects.

Show Me the Way!

Last week I was disheartened to find that Dean is still not using his C-PAP enough hours to pass the Medicare requirements for coverage. But I begged the pulmonary company for the real deal on what it takes to pass the 30-day test. What I discovered was quite different than I had been thinking.

He has to use this needed breathing equipment at least 4-6 hours every day for thirty consecutive nights, or 24-hour periods (daytime naps count). But he has ninety days to reach that goal. And there's no way to cheat. There's a computer in the C-PAP that relays the usage data to the needed offices. It can even tell whether he's wearing it on his face, or just has the machine turned on.

Wow, what a revelation this was! But armed with our new information, I was able to motivate Dean to wear it all night for the last three nights. I am just praying that he continues this trend, because if he skips even one night, or fails it by even a few minutes, then the 30-day count has to start all over.

All this has made me grateful for a God who makes our salvation so relatively simple. First, He is very simple and straightforward in His requirements.

But best of all, He doesn't just sit there, pouring over our life record, waiting to see if we will pass the test of life. He actively gives us the needed tools to achieve our goal and makes sure we know everything there is to know about having success.

Praise God for making our victory so relatively simple. He truly wants each of us to be covered with His unfailing love and salvation. Once again, what a revelation this was!

Our Dinner Invitation

This weekend something very unusual happened. Someone actually invited my husband and I home for Sabbath dinner! It was someone whose wife has Alzheimer's. How could I turn it down?

Even though our cook admitted to limited kitchen prowess, he was quite the charming host with his catered pizza and service with a smile. We enjoyed an afternoon of food and fellowship, and it made me feel guilty for depriving Dean of this very real part of our former life.

I can't blame people for not asking us to their home. I have been negligent in inviting people over myself for the last ten years or so. Dean's increased dementia, tight budgets, the added stress--all have contributed to our social isolation.

I determine at the beginning of every year that I am going to make an effort to have someone over for a meal occasionally like the good ol' days, but it just gets harder, the longer I put it off. Surely, opening up our own home to visitors would result in more invitations like the one we just had.

But is this really how it should be? Many of the people Dean would invite home after church were the ones who seldom got invitations. We never worried how it would turn out, whether we'd get invited over to their place in return, what they would think of our humble dwelling, or our simple menu. It was all about caring about others that motivated our hospitality.

And we were never disappointed with our guests and the outcome of our visits. Whether it was our closest friends, a one-time visitor who may have been living on the street, or the pastor's family, everyone was a treat to have in our home.

I am truly resolved now to return to some kind of social life outside simple attendance at church. We must all get back to this very Christian habit of "breaking bread" with each other in our homes. It's personal, it's uniting, and it's fun! Thank you, Clyde, for your thoughtful reminder of one of our very important Christian duties.

The Best We Can

We're waiting for the results of Dean's second sleep study. We know in our hearts what the "verdict" will be--they will recommend a C-PAP again. The part I'm sweating about is how we'll ever get him to comply with this extreme adjustment. He has gotten used to wearing one, and I've seen him wear it all night quite often. But as with many of his assistive devices it tends to go through spells of neglect.

The hardest part to admit is that this mirrors my prayer and devotional life. There will be spells of spiritual fervor when I get immersed in the presence of God, but these are interspersed with drought, when I'm lucky to feel even a sprinkling of His blessing.

I must remember this very human phenomenon and know that God mercifully makes allowances for it. I'm sure even the disciples and early church believers experienced ups and downs in their religious practice. That's why God recommended that they fast and take times to separate themselves from the multitudes for fasting, prayer, and spiritual renewal.

I know that wearing a C-PAP for Dean is a very healthy thing for him to do. But just as actively and fervently seeking God is the most "healthy" thing I can do for my soul, God makes allowances for me when my religious zeal is less than robust.

I must not be anxious about Dean, but trust that overall, we are doing the best we can...and that is all God expects of us.

Eternal Respite

A friend and I recently attended a training session for respite providers. I told her later that she was already providing respite for a caregiver by attending the seminar with me, a caregiver.

I'm sure she would be good at providing others respite, or rest, from caregiving too though. She has a friendly, confident, positive attitude that both caregivers and care recipients would love to be around. Just to know Betty is to have respite, in my book. I'm glad she's my friend.

But here's some of the reasons I crave and need respite.

At home...

1. to enjoy a quiet house (no television noise)
2. to have more dietary choices (trying to watch his weight and mine isn't easy)
3. to be able to have an uninterrupted hot shower or phone conversation

Out of the house...

1. to complete shopping or errands in a leisurely, unhurried fashion (fortunately, I can still leave Dean home alone long enough to accomplish this...most of the time)
2. to be with friends or groups that allow me to forget I'm a caregiver, at least in the immediate sense (going to our church choir practices or walking at the mall with a friend)
3. to make me feel like a whole person on my own, with the option of helping other caregivers as I'm able (attending meetings that advocate for caregivers)

I'm so fortunate to have outside care and chore providers for Dean these last few years. He still attends an adult day program three times a week. Plus a bath aide comes to help prevent falls in the shower. And a home health nurse helps monitor his symptoms and manage his medications.

I don't think I could have survived these last sixteen years without the support I've had.

And I don't want to leave out one avenue of support. We all have access to God. His services are free and absolutely essential for handling the daily crises that arise in our very unpredictable lives.

As my favorite verse says, "casting all your care upon Him, for He cares for you." I Peter 5:7 Don't ever feel that, as a caregiver, you aren't cared for too! There is a God who cares for all of us. And His respite will last an eternity.

Fleeting Fame

For the last month or two I have experienced some fleeting celebrity. It started out feeling like a brilliant flame of glory, but alas, when the embers died down, I am reminded that there was a reason for all the hoopla.

My first call of notoriety came when Outlook magazine I blog for wanted to do a feature article on me. Then, just weeks later, the local newspaper wanted to do a front page story on me. These requests to be interviewed resulted in major coverage, with photos of me no less, on the magazine cover and front page of the newspaper. (Notice I'm using the word "me" a lot here.)

Even though I was excited to share my celebrated status with my family and closest friends, it continues to be uncomfortable with others seeing it, when I think about it too much. People might think I'm getting too proud of myself. Indeed, I am finding it difficult to remain grounded and just keep reminding myself what these articles were really all about, and what they were meant to accomplish.

The Outlook, my church's main news outlet for Adventists in the Midwest, wanted to draw attention to the in-depth Bible study that can achieved, utilizing our Sabbath School Bible Study guide and all those resources meant to support it, including my weekly blog.

The Journal Star newspaper wanted to draw attention to caregivers across the state, making it easier for people to understand why certain proposed state legislation might help a large segment of our population...over 200,000 caregivers across the state of Nebraska. I just demonstrated what a typical caregiver's life might look like.

Nothing special or magical about my caregiving experience. I feel nothing but praise for anyone who attempts to pick up the slack for a friend or family member who needs help with any of the daily tasks of living. These caregivers all carry burdens, some light, others quite heavy. I represent an average family caregiver...and that is all.

The Lord is daily teaching me where all the glory needs to go. I love Him for sharing a brief moment of it with me these last few weeks. But the only glory that will last is the kind we will taste someday in heaven. I long to be there to share it with Him then.

Below is the link to the newspaper article, in case you haven't seen it. If you're a regular or new reader of this blog, you may be interested.

http://journalstar.com/legislature/mother-teresa-lincoln-woman-finds-calling-in-husband-s-care/article_60e14bc5-0316-50ac-876d-abff97f9f072.html

How true. Should applaud them all!

Intangible Gifts

Ending my fourth year of blogging here with my 500th post, how fitting I'm writing this then at the turn of the New Year.

I seemed to sense early on that this blog would end up being about caregiving. Being a caregiver has consumed my life for over sixteen years now. My husband contributes greatly though to its success and I always give him credit for providing me such interesting content to write about.

To prove that our life may be hopefully more stable this coming year, Dean surprised me by folding the towels from the dryer this morning without even being asked. As he put the last one away in the closet (leaving me with the washcloths to do), he came to announce at the door of my computer room that he would like to list all the ways he helps me around the house. Here's all I do, he said, (as I mentally prepared to discount all his assertions):

1. not much
2. very little, and
3. almost nothing

Well, he got no argument out of me with that one! Perhaps even his mental confusion is finally making a turn for the better.

This must mean that I do:

1. very much,
2. a whole lot, and
3. everything

That does seem to sum up our roles around here. At least as far as the household affairs. But there are other areas that my husband shines.

He provides me with:

• laughter
• love, and
• a purpose for living

 What would I do without him?

Maybe God isn't helping me with all the material things of the world these days either, but He's always there supplying me with intangible rewards that I wouldn't want to do without. (...another lesson of faith in the life of a caregiver)