Stunned on a Monday

Mondays are always busy, but yesterday's Monday really kept me hopping. It was the day before our monthly brain injury support group meeting, and I have the pleasure of making reminder phone calls to those who come to the group. So phone conversations were interspersed all day with housekeeping chores and family matters.

I was down to the last person to call though, so things were looking pretty bright for a relaxing evening at least. But then came the shock.

The spouse, a caregiver wife about my age, told me, as gently as she could, that her husband had passed away a week ago from a virus. I was stunned to hear of it. Just stunned. They had been coming to our meetings for about a year. We've lost several people over the years, but who would have thought it would be Fred? He seemed so healthy and vibrant, despite the cognitive and emotional challenges he'd faced since his brain injury. I just grieved so much for this wife who'd already been through so much.

We caregivers can't wait for our caregiving to end sometimes. But when you stop and think what that end will actually entail, it doesn't look so inviting after all. I complain about my hard life with Dean, but life without him seems pretty bleak too.

I, and other caregivers, not only look forward to the Resurrection Morning, when Christ comes to redeem us all. We, more than anyone, look forward to our new bodies AND our new brains in those bodies. It's hard to picture. But really, it's our only hope.

This Hope

For quite awhile this evening I've been trying to think of something of note to report in my blog. And then the most notable news ever came to me. Sunday as I was making my monthly routine calls to remind people of our brain injury support group that meets this Tuesday, one of our friends from the group sadly told me that her husband had passed away a week ago.

As I'm casually hoping to recall something noteworthy in my life, a fellow caregiver/survivor has had her world turned upside down this past week. He was such a caring man too, who came to all our meetings with his wife. She had a brain injury many years ago in an auto accident. The support group will never be the same without his quiet, cheerful, smiling presence. He will be sorely missed by all of us in the group.

Life is so fragile. And so is our grief. Grief is personal, it's diverse, and it's never going to go away so long as we're on this sinful planet. But someday, God promises to take away the sting of death. No more will we feel its bite. No more will we have to say good-bye.

"And God shall wipe all tears from their eyes; and there shall be no more death, neither sorrow, nor crying, neither shall there be any more pain: for the former things are passed away." Revelation 21:4

Where would we be without this hope?

The Gift of Hope

Yesterday I went to a great support group for Alzheimer's and dementia. I knew the facilitator of the group and she asked me to talk about caregiving. We did discuss many aspects of caregiving, such as how it has changed over the last generation or two, what some of our common problems are, what feelings all caregivers share, and how to recognize signs of burnout and prevent it.

I was a bit more nervous about presenting to this group of seasoned caregivers. It was quite unlike the group of mixed, women caregivers at the women's retreat last fall. I pressed for more discussion this time, instead of waiting for questions at the end. So they actually carried the show and it went very well. Everyone had something to contribute--ideas and examples that spoke for themselves.

One thing I did notice though was how easy it was to veer off the topic of caregivers and start talking about our care recipients. They just were welded into the equation and you couldn't really separate the two. We exist because of them. The feelings and burdens we have are directly tied in to the persons we care for.

And there's nothing wrong with that. As a matter of fact, that's what makes family caregivers such good ones. We already have a bond with these individuals, which makes our loads easier to bear.

I'm sure God's sacrifice for us was made easier because of the tremendous love He has for His created beings. There was a close bond between us from the moment He breathed into Adam the breath of life. We should not wonder at the lengths God, the Father, would go through to not only save us, but to care for us from day to day.

Sure, God can't make everything smooth and happy for us all the time now--just as we can't make everything pleasant for the loved ones we care for. But God has made promises for our future--a future so bright, it's beyond our imagination. And isn't that the best gift we can give and have as caregivers? The gift of hope.

Why Memorize?

On the way to our monthly brain injury support group, I reminded Dean that it was going to be "talent night", our once-a-year opportunity to share something special with the group, following a nice potluck supper.

Dean started reciting a bawdy poem from his barroom days in his youth, but I stopped him in his tracks and reminded him that there might be children present. He said he could censure it, but I had my doubts about his ability to "clean it up" enough for a mixed audience. There wasn't any more said about it, so I thought he agreed with my assessment.

Imagine my horror at the meeting when they asked him if he had any talent and he started reciting the quite "colorful" rhyme, having to pause and clear his throat at very frequent, vital intervals. We made it through without too much embarrassment, and I had to admire his ability to remember something so well after decades of learning it and filter it fairly well.

It made me marvel also at the brain's ability in general to retrieve memorized information, and was a reminder to me that memorization is not a skill to be taken lightly. I wish I had memorized far more good things when I was young. I've memorized several Bible passages in the last few years, but I know it would have been easier to remember them when I was young and the recall would be more reliable. Even with dementia, Dean's recall was impeccable.

I hope to encourage my granddaughters to memorize Bible verses. Because one verse tells us, "Thy word have I hid in my heart, that I might not sin against thee." Psalm 119:11 It isn't just for show; it will help them all through life to stay away from sin and stay close to God. It's part of our spiritual armor. Ephesians 6:17.

A Big Change

Dean really has to be improving for me to take him where we went this afternoon. It was an Alzheimer's support group that meets socially at a small cafe near our house every month to have pie and just share each others' company. It was the first time we have attended, and those "first times" are always hardest for me, it seems.  Consequently, I have put it off for months now, simply because I wasn't sure if Dean would fit in, would stay awake, or would become frustrated with...well, almost anything.

But Dean did wonderfully well in interacting with the small group, all seated about two big tables, pushed together for the dozen or so of us. We were about half and half caregivers and those with dementia, so it was a perfect mix for some lively conversation and some excellent pie. Dean and I shared a sour cream raisin slice.

And Dean, of course, held up his end of the conversation well. The storyteller in him was rejoicing with his fresh audience, and it was clear to see that Dean was in his element, telling about heating our home exclusively with a wood stove (which we did in the 70s), and about his brother, a mason by trade, refusing to finish the fireplace in his own home, because the tax auditor told him a finished fireplace would increase their taxes too much. Yep, these brothers were definitely cut from the same cloth.

What gave me the courage to venture out with Dean today was a comment, relayed to me by the director of his adult day program. One of the staff there, who has known him the longest, made the statement that she sees the "old Dean" back. That was so comforting to hear. Up until that point, I felt like the only one noticing the change since we cut off one of his medicines, but it was great to hear it confirmed.

I'm really looking forward to the day when I really have the "old Dean" back. The one before his tractor accident, the one before sin entered his life, the one that he will have for eternity. "...for the trumpet shall sound, and the dead shall be raised incorruptible, and we shall be changed." I Corinthians 15:52

A Piece of Cake

Dean is at our brain injury support group by himself tonight. I didn't feel anyone would want exposure to my cold, so I dropped him off--with name tags and refreshments (it was our month). I'm sure he'll do alright there by himself. We've known these people for ten years. Same meeting place, same time, same night of the month. We give reminder calls just before the meeting night though. I called my list just today, rather late. No excuse, I was even reminded to do the reminding. Oh, dear. Is my memory slipping too?

I remember one elderly couple who used to come to our meetings years ago. He had a head injury and the wife was his caregiver. Over the course of a few years, however, it became obvious to some in our group that she was having memory problems too. What a sad affair! Neither of them being able to remember appointments, etc. I was hoping they had family who was ready to step in and take over her caregiving duties when it got bad enough. I believe they finally did.

Who knows what the future holds for any of us? I'm just barely in my sixties, and these things do weigh on my mind. Probably because I have dealt with Dean's dementia and memory loss for so long already. My family and I are pretty much professionals by now. So, it should be a piece of cake for us. Right?

Not so fast here. If there's one thing I've learned as a caregiver, it's that no one has all the answers or skills needed to deal with the hard issues of life. No one, that is, except God. The thing I fear most is not being dependent on others, but not having God to depend on. And of course, that will never happen with our awesomely faithful God. His promise was and is: "And lo, I am with you ALWAYS."

Chore or Ritual

Our topic for discussion tonight at our brain injury support group was sleep. It seems that we all have different sleep habits and strategies for getting a good night's sleep. Sleeping well has a positive impact on our overall physical and mental health, and is especially needed for brain injury survivors and their caregivers. Put simply, it just makes you feel good.

One thing we talked about was what you do just prior to sleeping. My bedtime chore, since I've been on oxygen, consists of setting up my Bi-PAP machine. Filling the humidifier with distilled water, attaching the hose and oxygen tubing, turning on the oxygen concentrator, putting on the face mask, and finally turning the machine on. All that activity was not conducive to sleep, believe me. And I hated it.

But then last year, a nurse introduced me to a new face mask with a design that allowed me to wear my glasses, rather clumsily, so I could read myself to sleep with the mask and machine already on. For five years, I had missed falling asleep reading a book. Now I don't mind the Bi-PAP setup nearly as much. Instead of a chore, it's just my regular bedtime ritual or routine, a positive strategy to getting a good night's sleep.

It's amazing how the same activity can be perceived in a totally different way, simply by my attitude about it. God is the same way. Some think that anything to do with religion and God is not to be desired. That serving God, attending church, witnessing to our friends and neighbors, or having a personal devotional life are hated chores. But when seen through the lens of love for God, the same things are beloved activities that we cherish and adore.

Knowing and loving God is just like a good night's sleep. It just makes you feel good. Your attitude is what counts. Cultivate a loving one.