Blowing Up Balloons

Another blurp in the medical history books for a Mr. Dean, aka Idaho or Shortcut, (my everloving caregivee-husband). Never thought I'd have to take him to the doctor for blowing up a balloon too hard. Yes, believe it or not, he seems to have ruptured one of his salivary glands (parotid gland, if you want to get medically technical).

I swear he was trying to make as many annoying noises as he could with this balloon he got ahold of the other day. I finally got tired of asking him to tone it down. He was obviously enjoying the highly-pitched squeaks and fart sounds he was creating.

Then I noticed the sounds stopped and he brought to my attention a great big egg-sized lump on the left side of his face, right below his ear on the jawline. Naturally, I went into panic mode inside and asked him how long it had been there. Well, of course, he didn't know. He just felt this pop or something on the side of his face after blowing real hard on the balloon, and there it was!

I tried to stay cool, calm, and collected and careful enough not to feel the lump too vigorously, so as not to burst it or anything. But I was naturally curious whether this would go away by itself. It was evening time, so thought I'd let it wait till the next day before I starting dialing some medical professionals.

Everyone I talked to the next day said it probably needed medical attention, because it was still there in the morning, though not as big. So I took him to the doctor's office that afternoon (their after-hours-you-don't-need-an-appointment time). Fortunately the diagnosis was not as complicated as I'd feared and the doctor just prescribed an antibiotic in case some bacteria might escape. He suspected it would go away on its own though, so we're just waiting to see.

What could I possibly have learned from this silly experience, you ask? Well, I, like Dean's balloon-blowing, have a tendency to blow things out of proportion sometimes. Causing my "worry-wart", like a lump, tendencies to overpower my otherwise calm exterior. During these times I'm sure there must be a worry lump there someplace, if I took the time to look for it.

But, most of the time my worries prove to be unfounded. The final "diagnosis" is not nearly as dramatic as I'd feared. I need the Lord's help not to blow so hard on my "balloons" too.

"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 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?

My Cover

A friend and I were chatting about someone we both knew, and one of us mentioned that she now has dementia. Due to our mutual experience with this, we both said we recognized it awhile back. Repeating yourself is often the first sign that gets noticed by friends and loved ones.

Then as I was leaving the house yesterday to run some errands, I asked Dean's home health nurse, who happened to be there, to remind Dean where I was going, when he got through with his shower. I laughingly told her that between repeating myself for his poor hearing and for his memory deficits, I was doubly cursed with repeating things.

It dawned on me as I got into the car that I was certainly repeating things more than most people. And with a chuckle to myself, I wondered how my family will know that I might be starting to have dementia. That's alright though; it will be nice to have a "cover" for my old age forgetfulness. I can blame it on being a caregiver!

There's another cover that I'm using a lot too. It's the cover found in Psalm 91:4. "He shall cover thee with his feathers, and under his wings shalt thou trust: his truth shall be thy shield and buckler." Yes, God is my refuge, my fortress, and my cover. I guess I can blame that on being a Christian.

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.

Walking a Mile in His Shoes

I should have known last week, when Dean insisted on buying himself a pair of tennis shoes, that he was serious about the annual one-mile Walk for Seniors that he signed up for. I've known for awhile that his chore provider, who told us about the walk, and who has been encouraging him to walk and exercise in preparation for it, would not be able to accompany him next Friday, the day of the Walk. And I also knew that our daughter babysits on Friday and would not be able to be his "walking buddy".

Since I'm his "buddy" for so much of life already, I just assumed that it would fall on me to be with him that day. For weeks, I've pictured myself walking by his side, looking for obstacles that he might trip on, making sure he didn't get confused about where he was or how many laps he'd taken, and being there to calm him down if he got frustrated about anything.

All of that I'm pretty good at. But then it dawned on me that the one thing I'm not good at is WALKING A MILE! Even though we'd be going at a snail's pace, I'd be out of breath after the first 30 seconds of walking. I shudder to think how winded I'd be at the end, even with my portable oxygen tank. It would look like I'd just run a 25-mi. marathon without stopping.

So, I broke down a few days ago and asked for help, something we caregivers are most reluctant to do. One of our pastors readily agreed to accompany Dean on the Walk. It's such a relief to know that Dean will be in able hands that day. I can kick back and enjoy the morning. I have to admit I was not looking forward to the dreaded task of walking with him.

Someone else has promised me much needed rest too, a time to kick back. Jesus said, "Come unto me, all ye that labor and are heavy laden, and I will give you rest." He says to take His yoke. Of course, I can't do that without putting my own yokes and burdens down first. Lord, help me not hesitate to take you up on this offer for help. I need to quit thinking it all depends on me, when actually none of it does. It's your yoke I want to wear. Mine is much too heavy. I get out of breath just thinking about it!

Me-Time

The caregiver retreat I attended the last two days must have been a success. Today Dean is at his adult day program, which he regularly attends on Friday, but I can't believe all the relaxing I've been able to fit into my morning since he's been gone.

Normally I'm in a frenzy, trying to get as much accomplished as possible, but today I took the message they were pointing out to us at the retreat to heart and just did everything at a more leisurely pace, and it has worked. I not only got in my shower time, a nap, and some relaxing on the back deck (finally feels warm enough to do that), but also got some closets worked on, a load of clothes laundered, a phone call made, and now am even writing this blog (forgive me if it's a short one). Who would have thought?

I debated about whether to go to Wal-mart to pick up a couple of items we're about to run out of, but the crowds there didn't sound conducive to my new "me-time" awareness effort, so I've put it off for another time.

I might even have the fortitude stored in me to think of taking Dean with me to the store this week-end. Notice I said "think". *wink*

Peace and Quiet

Don't know why I've been in such a dark mood. Yesterday's stop at a rehab center with Dean, which included visiting someone we know in the dementia unit, was rather unnerving to me. That was probably part of it. Just couldn't explain why I was feeling so out-of-sorts lately.

Today Dean had to go get more blood drawn to check his platelets, which were low the last time. And then on to visit his podiatrist for a regular nail clipping. I asked Dean to go into the doctor's office by himself, so I could brood for awhile by myself in the car. I even told him that's what I was going to do.

Just those few moments alone helped. All I did was sit in the peace and quiet. When I felt somewhat recharged I went in to the waiting room till he was done with the doctor. I'm not sure it totally did the trick, but it did feel good to be alone for just a bit. A caregiver has to get respite anyway she can.

I thank God for opportunities of refreshment and renewal. God knows we all need them. I'm sure that's why He gave us the Sabbath. You don't have to be a caregiver to experience Sabbath Rest. It's built right into our week. And it's ours for the taking.

Food Hide-and-seek

I have become an expert at food hide-and-seek lately. With Thanksgiving last week and Dean's birthday celebration this past weekend, there are sweet treats hidden all over my house. I have to hide them from Dean, and I'm sure he's been hiding them from me so I don't hide them from him.

As a matter of fact, there is a can of mixed nuts in such a good hiding place that neither of us will find them for quite awhile. Dean, because he doesn't remember that he has them, and me, because I can't remember where I put them. They must be in a very secure location. Either that, or Dean has found them and finished them off. Like he did with the box of chocolate-covered cherries the other day.

This impulsivity or lack of self-control is a typical symptom of someone who is brain-injured or has dementia. It has resulted in some weight gain for Dean lately, as you might imagine. I even threatened to send him to a "fat farm" today, when he was complaining about my tight restraints on the food pantry. But probably we'll just end up readjusting his medicines at some point.

Do I complain about God's restraints sometimes too? I'm sure I do. It seems like He's hiding all the good things in my life in very secure locations, and leaving me without any of the luxuries that make life sweet. I must stop complaining and remember that God is doing it all for my best eternal interest. He's a caregiver I can really trust.

Remember the Landmarks

I just happened to find myself downtown today, looking for a parking space somewhere near the State Office Building, so I could attend a coalition meeting for caregivers there. Having just changed purses before I left the house, I neglected to include in it any coins, so was hard-pressed how I was going to get parked and inside before the meeting started.

Finally, I saw a parking space close enough that offered easy access and room for the big Lincoln I drive (my dad's old car). The meter showed I had about a half hour left, so I planned on finding my meeting place inside and letting someone know that I would have to get a dollar changed and get my meter fed before I got a ticket. I'd just be a little late for the meeting.

Wearing a visitor tag fastened to my coat, those I was meeting with cautioned me to just act like I knew where I was going and I could get in and out of the building easy enough to take care of this business, without having to return and pick up another visitor tag.

No problem. I thought I indeed did know what I was doing and where I was going. But when I took one of the many the elevators back down to the first floor, and hurried outside to feed the meter, I suddenly found myself lost, which was preferable to my car being lost, heaven forbid. Although that thought did occur to me as I proceeded to walk frantically all around the block to the other side of the building, where I hoped my car would be obediently parked.

As I made my way back inside and up to the fifth floor, I consciously remembered landmarks this time, so I could truly know where I was going, instead of taking the wrong door out, when it was time to go home. I'm ashamed to admit that I was concentrating so hard on finding the correct way out later though, that I neglected to return my visitor tag.

Let's just say that at that point I knew where I was going, but didn't know what I was doing.

How easy it was for me to get lost in the small confines of a city block today. I pray I can do better on my trip to our heavenly home. It's obvious that my only chance is with Jesus Christ, my Divine Navigator and G.P.S. And how nice that at this heavenly destination, there won't be any visitor tags to worry about returning.

Giving a Care

With a board meeting over in Hastings this morning, I wasn't sure how I would find time to get ready myself and also help Dean get ready for his adult day program before I left. After helping him get his clothes and shoes on, I had to set out his clothes, medical folder, and towel for his bath aide and nurse who would come in the afternoon. Then make sure he had taken his pills, eyeglasses, cap, and cane, and had the day of the week changed where we post it prominently in the living room. I also had to remember to put an insulated bag out for the Meals on Wheels when it came. Then uncover and feed the bird, let the dog out, bring the trash can off the curb, and dress and try to get a bite to eat myself. But somehow it all fell into place and I arrived precisely at the scheduled time and place for my car pool ride to a Brain Injury Association meeting in Hastings.

All this activity reminded me how thankful I am that I don't have a regular daily job I have to go to. So many employed caregivers struggle with this additional activity every day. People don't have a clue what is involved in taking care of someone else, whether it's an adult or a child with special needs.

All caregivers need to feel supported and appreciated. November is the month to do it too. This is National Caregivers Month.

Romans 15:1 says "We then who are strong ought to bear the infirmities of the weak, and not to please ourselves". Who among us are fulfilling this Christian mandate more than caregivers?

Focus on the Volunteers

For three days this week there is a Center for People in Need in our community that dispenses holiday food and goods to needy families. I went there today to see what kind of holiday cheer they could offer two old, disabled seniors on a pencil-thin budget. Fiscal difficulties are definitely one of the major problems reported by caregivers. This one included.

The first thing you notice, as you drive into the parking lot, is how many hundreds of low-income people are looking for something special to offer their families this Thanksgiving and Christmas. The parking spaces were filling up fast, and the place was overflowing with vehicles. Then, the lines of people inside and the waiting required because of the streams of people pouring in convinced me that there are more low-income people than I had realized in our town.

I didn't just notice the people there getting things though. There were also many smiling volunteers, who were valiantly and tirelessly distributing the items. I tried to focus on them, because it's so easy to become judgmental when you are sitting there "people-watching" in a place like that.

I was tempted to think that some of the "needies" there certainly didn't appear to be lacking in material goods. Take that young mother with the expensive looking cell phone, whose child was in an obviously top-of-the-line stroller. But you know, she may have downgraded from her internet connection at home and is reduced to the cell-phone kind only now. And I've seen nice strollers at garage sales too, so I suppose I can overlook that expenditure too. Personally knowing a young mother who fits this description exactly helped me overcome my temporary lapse into judgmentalism.

From now on, I'll definitely focus on the volunteers instead. ;-)

Remembering the Best

For a man who can't remember if he just had dinner five minutes before, my husband has remembered all week that we discussed going to church today. So I couldn't deny him the opportunity to attend the early service at the large college church this morning. I purposely only mentioned it that one time and waited to see if he would remember our conversation.

He mentioned it last night again for the first time in many days since we first discussed it, so I knew we would be going. I just couldn't deny him something that he has missed so much. Church attendance with him has proven very stressful for me in the recent past, and he has basically stopped attending our home church because of it.

But he wore his dress pants, street shoes, even tucked his shirt in today, like I requested. As a matter of fact, he was on his best behavior the whole time. We got there just as the service started, and left immediately afterward in order to meet the bath aide who was to arrive at the house at eleven o'clock. I, for one, breathed a sigh of relief when we pulled back into our driveway at home. All potential disasters averted.

What thrilled me the most though was the fact that he remembered that we talked about attending church today. For a man who forgets almost everything, even important things like food, it shows where his priorities lie. There is a portion of Dean's brain that isn't damaged or showing signs of old age. And that is his desire to worship God.

Oh, that we all had that priority straight in our lives. Forgetting all else, let's all remember God.

Winners AND Losers

I can't wait for the news coverage of the election tonight. I really enjoy the suspense of the outcome. We are definitely focused on the winner in this presidential contest. What is really sad to think about though is that someone will be a loser. You only have a 50-50% chance, especially with an election this close. And what will that be like for the one who doesn't win the election? After all the effort and money that goes into a campaign, it must be excruciatingly disappointing when the other side wins.

As a caregiver, I have grown accustomed to feeling the losses of someone who has lost a great deal of normalcy in his life. People with disabilities of any kind can easily fall into the category of loser, without someone by their side assisting and encouraging them to keep trying.

Our main purpose as Christians should also be to reach out to people who are losing out on eternal life. Because there is no greater loss than missing out on heaven. Introducing people to the greatest campaign manager of all time, Jesus Christ, is not that difficult a task. He will take over their life, just like real campaign managers do, and success is guaranteed. None of us have to be losers of heaven. We elect, or choose, to be.

Daughter's Humor

The presentation about caregiving that I have been looking forward to giving for the last year is over now. It was gratifying to see over twenty women at our church's Kansas-Nebraska Women's Retreat attend, the majority of them caregivers themselves.

The one caregiver woman that I was most interested in this weekend was my daughter. This is the first women's retreat we have attended together.

Last night I was rehearsing my seminar presentation alone in our motel room with Kayla as my practice audience. My nervousness was seriously reduced by one of her comments, because it brought about such a good laugh for both of us. At one place in the PowerPoint I ask what a highly mobile society means to caregiving today. She quipped "We are on the phone all the time?"

All I can say is, she has her daddy's sense of humor. And when I needed it the most. She also had prayer for me just before the seminar began. Just when I needed it most.

Dean's Memory

I have a list and a thousand things to remember and do tomorrow to get ready for Women's Retreat this weekend. In addition to remembering my oxygen equipment, the Bi-pap machine, tubing, and portable container, I will have my laptop and notes for conducting a seminar on Sabbath/Saturday about caregiving.

Then there are things to remember for Dean while I'm gone. Even though he won't be totally alone in the house, my nephew is here, I'm sure Dean will feel alone with me gone. I will be making frequent phone calls, so he won't feel so lost. I really am his "memory" these days.

I just pray that God will use me in this seminar. Non-caregivers don't have a clue about what it's like to be a caregiver. I will probably mostly have caregivers come to my "break-out" session, but I'm hoping the information will spread out, even from the few who will attend.

I will report back next week. Keep me in your prayers.

Super-caregiver Sister

There's only one kind of stress that equals that of a caregiver that I can think of, and that's the stress of an educator. Especially a teacher in the middle grades. My sister-in-law falls in this category, but she also has the distinction of being a caregiver. I don't see how she copes with all life is handing her right now. Throw in almost an hour commute each way to school and you can see why I look up to her as a super-caregiver. She and my brother both have enormous family and job responsibilities, and I know it can only be by the grace of God that they can make it through each day.

The reason they are on my mind particularly this evening is that today my sister was hurt at school, trying to break up a fight among some students. She's not seriously injured, but will have to wear a half-cast on her left arm till the tendons heal. She was bruised up enough to be sent to the hospital for evaluation. How tedious it will be for her to type and do many of her teaching tasks after this mishap. We're just thankful she wasn't hurt more seriously.

Whenever any of us feel that our life is spinning out of control, it is often only our faith that keeps us going. This is the main theme of my blog. I want people to know that when we are in the middle of trying times, God is there with us. Sometimes it's even easier to see Him then than when things are going smoothly. We seem to lose sight of Him in the good times. But God is everywhere.

And that's why I will never run out of material for this blog. Look for Him in your life. He is always as close as you will have Him.

Battle Position

I'm taking a cold lying down today. Seriously, I don't feel like getting off this pillow, so guess I'll stay and do battle in a reclining position. The only thing that gets me to rise is a coughing spell or to blow my nose, and these are becoming more frequent as the day progresses. My colds morph me from a well person, almost instantly to a very ill and frail old lady. I've been on oxygen so much today, I may float away into a cloud by tomorrow.

I can only hope for a short duration cold. But that is the exception, rather than the rule around here. So, guess I'll get back to my battle station and pray myself well. God knows when the caregiver needs care. Being the Sabbath, I think I'll rest on that promise.