Caregiver Guilt

It's been a difficult week and month. First, my mother's only sister passed away in California, bringing many flashes of mom's final illness and death in 2010. I can't imagine the recent pain of my niece and her husband as they dealt with all the caregiving and final arrangements without the support of siblings. They are to be commended for their brave decisions and actions these last terribly busy weeks. I pray for comfort in their grief as they try to take up their normal duties at home now.

Besides all the feelings that came with my aunt's passing, I've also been trying to ignore my own feelings of guilt. There, I've said it. It's definitely guilt. I feel guilty for not being happy over Dean's improvement in health since we stopped one of his medicines.

The simple fact is that he was much easier to care for when he was sleeping most of the day and wasn't having any emotional outbursts. Sure, he was having vivid dreams and even hallucinations, and had much more memory loss. His overall health and strength seemed to be slipping away. I was terribly worried about him and it took a second opinion of another specialist to pinpoint what the problem was.

But now that he's back to his ol' ornery self, I find myself wistfully wanting him back in "la-la land". It's a selfish wish for sure, but if I totally come clean and confess, maybe I can quit feeling sorry for myself. There are joys in this difficult task of caregiving. I just have to look for them again.

Taken this Easter Sunday, at our in-laws' church...a joyful occasion!

Ernie's Tribute

Yesterday I attended the funeral of someone many in our church would call a spiritual giant. He was just-turned-98 Ernest Long and he was a favorite for people to visit, because instead of blessing him, you were always the one who felt blessed. This was mentioned repeatedly by those who spoke at his funeral.

Ernie attended my Sabbath School class many times over the past few years. I sometimes made it a point to speak to him privately before class, because he always had a wise thought gem about the lesson that he wanted to make sure got shared with the class.

Pastors found that their prayer for Ernie after a home or hospital visit was followed by a passionate prayer by Ernie for the pastor that often brought a tear to the eye. His name certainly described his prayer life--earnest.

One of the secrets to this fervent prayer life of his may be attributed to a book he shared with me on one of my visits. The author was E.M. Bounds. I found this Christian classic of the nineteenth century a powerful guide to revitalizing one's prayer life and something I really needed at the time.

Ernie's life of devotion to family, his country (as evidenced by his many military honors), and most of all to his faith will be a powerful legacy to all who had the privilege of knowing him. The church yesterday was not packed, but was definitely full. If all of the lives he touched over the past 98 years could have been there, they would have had to rent a sports stadium. May you rest in peace, dear friend, knowing that you were loved and will be sorely missed.

Of all he had, Ernie was most proud of the roses in his yard!

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

Too Late

I thought I was leaving in plenty of time yesterday to make it to the governor's signing of the proclamation for March being Brain Injury Awareness Month at the Nebraska State Capitol Building. There were forces working against me though.

With last month's snowstorm and the cancellation of the proclamation signings that were scheduled then, there were organizations, causes, and consequently people attending for both months. Therefore, I ended up having to park over three blocks away, but thankfully it was on a residential street, so didn't have to worry about feeding a meter.

After a grueling, long walk in the freezing weather, I was approaching the south entrance of the building and I couldn't remember if it was one that had public access. I had always gone in from another direction. As cold as it was and as short of breath as I was, I was dreading having to walk another block just to go in another door.

The thought struck me when I didn't see many people entering or exiting on this side that maybe I wouldn't be able to get in for security reasons. I wondered wildly if it would be this difficult getting in the Holy City, the New Jerusalem.

We've been told there will only be one narrow gate to that magnificent structure though. And none will enter who God deems unsafe to be there. Heaven must be free from sin. Talk about a security system we can trust. As we trust God, He can trust us. What a beautiful relationship we can have with Him. And how glorious it will be to see Him signing proclamations throughout eternity.

By the way, I was too late for the signing at our state capitol. Quite disappointed. But was there for a board meeting, so the day wasn't lost.

Where the signing took place

takes up a whole city block!

Close Buddies

As I look over the past week, the past few days actually, I've noticed an improvement in the "dream" area. Dean hasn't been living his dreams, like he was there for awhile. It's been nice not to have to worry about him waking up, ready to act out whatever he was dreaming about. I like it when he knows who I am in the morning.

It may have been the last medicine we stopped entirely. It was only a pill we split in half, but it must have made some kind of difference. He also went to Easterday (his adult day program) on both of his scheduled days last week. Much to my enjoyment.

He's still taking quite long naps, like five or six hours, as opposed to eight or nine. And occasionally getting up in the middle of the night and not going back to sleep for several hours. A problem I've had myself recently. Maybe it's the weather.

One thing I have to share that just happened early this morning. Out of the blue, it seemed in his sleep as we both lay in bed (I was lying there awake, trying to go back to sleep myself), Dean said a very brief and heartfelt prayer to God. It was so sweet and I just felt God's presence in the room. Usually his prayers of late have been very long, slurred, and repetitive. But this one was just as clear as a bell.

What a blessing it is to have the Holy Spirit convey our prayers to God. He does all the translating for us, even when we are at a total loss for words. I do believe it will be easier for me to trust Dean to God's care today. I know they are still close buddies.

Dean's new lift recliner (it seems to do more reclining than lifting these days)

Don't Make Me Change

Dean went to the dentist this week to be fitted for a partial, in lieu of getting a couple of teeth on the bottom extracted here soon. I've forewarned them that he most likely wouldn't wear the partial, but since it's required by our insurance that he have it, we'll give it a try.

While we're at it, they're going to take a look at his upper teeth (the kind in a jar) and make sure they would fit with them, in the wild chance that he would actually begin to wear them again too. Fortunately, I have found both his partials here at home (he's been through two now) and will now take them in for a fitting.

The reason I am skeptical about his wearing anything artificial is the track record he's had with that over the last few years since his brain injury. First it was hearing aids. Got him the best, professionally fine-tuned device we could get to make up for some of the hearing he lost after the tractor accident. But he barely wore them one day, before retiring them to a box on his dresser. It's probably there still under the mountains of other items he has planted there.

Then there has been leg braces to help with his drop foot. The first two, I'll admit were very cumbersome and he absolutely refused to wear them. We got lucky with the last one though. It's streamlined enough that he hasn't minded it too much. Only wears it when he has to though.

I've come to the conclusion that it's change that Dean is so resistant to. His adjustment abilities are quite minimal. We did have one victory on this front yesterday though. He went to a barber shop and got rid of a bunch of head hair. Only wish he'd consented to having some facial hair removed too. But maybe someday I'll see that.

I hope I'm open to change when it comes to spiritual matters. It's vitally important to be open to new spiritual truth, while at the same time, resistant to false teachings. I just pray I will know the difference.

Effortless Work

I should be enjoying the freedom of Dean sleeping so much around here. When I mentioned his recent sleep patterns to another caregiver recently, she even commented that it must be nice not to have him up and around as much [the annoyance factor--she lives with it too].

While it's true that I have less behavior issues to deal with, I still feel pretty tied down to the homestead, because I worry about him when he does wake up and feels so disoriented. I went from being alarmed and then amused by some of his comments when he wakes up. Now I barely pay them any mind, after giving a quietly diplomatic and neutral reply.

His standard questions range from "Where have you been?" to "Where have I been?" Quite frequently he tells me where he's been though. So far he's chopped us enough lumber for a big woodpile in our yard, dug ditches with a crew of young guys (he was doing most of the work, trying to teach them), built a race car that almost beat the land speed record. So, he's a busy man...while he's sleeping. *wink*

Reminds me of the effortless way we'll be able to accomplish tasks when we get to heaven. Like doing them in our sleep. *sigh*