Home Alone

A preliminary assessment with a small monitor that Dean wore at home one night led to a decision for a complete sleep study to check his breathing while he slept, which meant a possible diagnosis of sleep apnea.

When they called me to schedule it at one of the sleep clinics here in town, I asked numerous questions about their setup and procedures out of concern for Dean's peculiar night-time needs. When I described his fall risk and symptoms of dementia, she determined that a hospital setting might be warranted for his safety.

So after four emergency room visits last month between the two of us (see my previous post), when each time a hospital stay seemed quite possible, Dean finally earned his hospital stay just to monitor his nighttime sleeping habits! And it wasn't even through the emergency room!

I wasn't about to complain though. It would mean a night of freedom for me, and since it was in the hospital, that also meant freedom from worry. On the way home, after dropping him off at the hospital in the evening, I thought about how to celebrate my night alone. Should I go shopping, eat at a restaurant, go see a friend?

But then I thought, no, I'll just go home and enjoy my freedom there. It would be a night of relaxation. I would choose a DVD to watch, without haggling over the choice with someone and having to pause it every time that person got up to leave the room. I would leave lights on in rooms I left, without having to go back and turn them off if I forgot. I would leave the toilet seat up or down as I pleased, and not even change the toilet paper roll immediately when it ran out. I might not even pick up after myself. My purse and keys would remain ON the table, instead of under it out of sight.

The evening was sounding more and more inviting. Only occasionally did I harbor thoughts of how Dean was faring at the hospital. Or how the hospital staff was faring with him there.

It wasn't until I got home with him the next morning that I learned that perhaps he was not enjoying his night away as much as I was. When I got there he seemed perfectly happy, feasting on his second pastry and downing a glass of orange juice.

The truth came out in the answering machine messages that awaited me when I got home. Three times he had called and told me that I could come and get him any time. He sounded rather desperate to get home, so it was good I got there when I did.

Evidently they had tried a C-PAP on him during the night, when he showed signs of needing one to see if it would make a difference. He said his nose felt like it was burning, with all that air blowing in there. Oh, my, I hope we can resolve this and find the best overall solution if he does have sleep apnea. I'm trying not to think about it.

Those messages on our answering machine still play in my mind though. I too am anxious to go home...home to heaven, where true rest and relaxation exists for an eternity, and not just a brief night while our loved ones struggle somewhere else. Help me not to lose my zeal for that homecoming called The Second Coming. "This world is not my home..."

Caregiving for Me

Two weeks ago I came down with a monster cold. It was so bad even the first day, with my wimpy lungs, that I went to see the doctor for some additional medicines. Even though I had already started using my nebulizer and cough expectorant, I knew that prednisone and even an antibiotic would probably be added. And it was.

I still went home with the fear that this cold would not end without a call to 911 when my coughing spasms would turn into a choking episode. With less than half of my lungs functioning due to a deformed chest cavity (scoliosis), I just don't have the pulmonary power needed to cough up phlegm or even a tiny piece of food or water that might get lodged in my windpipe.

Three days later after an intense coughing spell, I had the phone in my hand almost ready to punch the 911, before I started to get my breath back. A week after that I actually did dial the 911 when I started to choke again, but told the paramedics I was alright and they didn't have to come.

The very next morning I had to call 911, when I couldn't get any air due to the phlegm closing off my breathing. Even though I had thankfully started breathing by the time they got there, and was using my nebulizer, they insisted I needed to go in to ER. Still in my nightgown, I thought to ask for my purse as we went out the door.

The worse part of my ambulance ride was when I looked in my purse and didn't see my car keys! Sometimes I just leave them lying by the purse and sometimes they are in. I was terrified that Dean would get in the car and drive himself to the hospital! He would be OK driving even though he hasn't been a licensed driver for fifteen years, but would he actually be able to find his way to the hospital without getting lost? I doubted it.

My cell phone was in my purse, however, so I managed to call my daughter when I got to the hospital. Bless her heart, her dad had called her about what had happened, just as she was getting off her night shift and gotten almost asleep. But she said she was on the way to the hospital. I tried to divert her to our house first, but she was determined to be by my side and was almost there.

The happy ending was that after a few tests and they didn't see pneumonia or any sign of infection, I was allowed to go home before noon, with another round of meds to get filled at the drug store. I was so thankful that my daughter was there to take me home, and the house was still standing when we got there, although Dean had been pretty shook up over it all.

I had assumed that he would go ahead and take his van to his day program that day, but he hadn't been able to get his socks on, so had stayed home. How could this man have taken care of himself, if I had been admitted to the hospital? I hope I never find out. But it was comforting to know that my daughter and son-in-law are here to step up to the plate and help. I even have a nephew fifty miles away, who would have dropped everything to come, had I needed him.

One thing that brought a smile was when Dean and I went to church this weekend, and they handed him a microphone to share a prayer request. He asked that people pray that his wife not have another coughing "spree". Yep, that described it pretty well. Some people have shopping sprees; I have coughing sprees.

I was indeed thankful that prayers did see us both through this eventful week. But as soon as I feel better, I'm going shopping instead.

my "at home" hospital

The Mystery Whistler

As many married folk have been known to do, we have accused each other of snoring during the night, with expected denials by the accused party.

Last night was no different. Once again, just as I would be about to drop off to sleep, I repeatedly found myself awakened by an annoying whistling sound that just had to be coming from one of Dean's famous snoring episodes.

Curiously enough he would stop whistling the minute I woke up, turned off my bi-pap machine, took off my nasal mask, and began to ask him to stop making the noise. After about the third time, it began to dawn on me that my nasal mask must have been losing its "seal" and causing the offending whistle. Dean had informed me that sometimes I whistled in my sleep, but I naturally didn't believe him.

Jesus' plea came alive for me: "Judge not...why do you look at the speck in your brother's eye, but do not consider the plank in your own eye?" (Matthew 7:3) For me it would be "why do you accuse your husband of snoring, but do not consider your own annoying whistles?"

Even caregivers need to take their eyes off others and look at their own needy selves for a reality check now and then.

Machine that gave me a whistle and a laugh!

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.

Reminders

Been so busy this week taking care of myself that I haven't had time for much blogging. A monster cold came on like a lamb, but soon showed itself as a lion, and set me reeling again with two episodes of coughing that ended up as choking, near-911 calls. (Praise the Lord, this is the first cold I've had since last February though!)

Most of you know about my pulmonary restrictive disease, causing me to be on oxygen part of the time. My deformed chest cavity from scoliosis doesn't give me the room I need to breathe. When asked by the nurse if I was short of breath, it was tempting to report that all my breaths were short. I haven't had a deep breath in years, maybe never really. Wouldn't know one if it hit me!

But this blog isn't about me. It's about my caregiving life with my hubby dear. After returning home after a six-hour emergency room visit, my daughter (MY caregiver for the day) gave her dad the low-down on not overworking her momma while she's sick. Her lecture really seemed to influence his behavior these past few days. He has been much less needy himself and more observant of my needs, constantly asking what he can do to help.

One thing I've discovered with my illnesses though is that I need reminders for my care. Not taking my medicine or breathing treatments at regular intervals gets me in trouble every time. Seeing my medical arsenal on the washing machine may have reminded Dean of the seriousness of my condition too. It looked like this:

Living in a household with someone who has memory deficits keeps me looking for memory aids for both of us. I have to be doubly cognizant of remembering appointments, medicine times, getting bills paid on time, etc., etc.

How nice that God placed one reminder for us that happens at regular intervals, making it even easier to remember. How important to remember our "weekly date" with Him! He actually blessed a certain day and placed it in the Ten Commandments, so we would never lose it. What could be easier?

Reputations

Dean's sister Lynn and brother-in-law John came for a visit today. They live in another state and we seldom get to see each other. His family was having a big family reunion in town, but we had our own little one right here in our cozy living room this morning--a much better place for Dean to be able to reconnect with his only sis.

Lynn helped me identify and mark some of their family photos, a task I hadn't even asked Dean to tackle. It surprised me how his sister could get stories out of him that I hadn't heard before though. As it often happens with dementia, his long-term memory is still pretty intact. I had hesitated to have him help me on his own simply because I know how frustrated he gets with such activities.

There was one relative she was telling us about who I was really interested in--perhaps because of my own breathing and oxygen problems. Dean's grandpa on his father's side was reportedly not a good provider. First of all, this was during the Great Depression. But he was nevertheless considered a good-for-nothing, and forced his grandmother to work and support their children. She later divorced him and continued to provide for her four children on her own. Then Lynn told me that he had asthma.

I instantly thought of my own great grandpa, who had asthma and an almost identical story of not working, leaving my great grandmother to support their eight children during the Depression. He was thought to be pretty worthless by the family, even to this day too.

Having experienced shortness of breath and several episodes of calling 911, I can relate to the debilitating effects of asthma, or any pulmonary problem. Keep in mind that there was no medical support of any kind back then for lung patients--no nebulizers, medicines, or inhalers. I doubt there was even portable oxygen for home use. Both of our grandfathers died at an early age, and from the sound of their stories may have suffered from mental depression as well.

This brought home to me how one's reputation can suffer unjustly and how important our understanding of disabilities is. My hope is that people now will become familiar enough with dementia, and all the other "invisible" disabilities out there, and that the memories we leave will be seen in a kinder light.

And of course, the greatest legacy of all is the life that reflects the Father's love. After all, God has a reputation to guard as well.

Dean and Lynn

 

Balance

Don't know when I've felt as sick as I was this afternoon and evening. Oh, yeah, it was when I went to an emergency room a few years back for a migraine. Today I was so nauseous with a headache, I didn't eat all day, except a little applesauce before bedtime. And I turned down babysitting for two of the sweetest granddaughters around (my own, of course)!

I've finally discovered by my own research that my headaches, which I get every few weeks, but which last more than one day, are related to carbon dioxide buildup in my blood. When you've had respiratory failure like mine and are on oxygen therapy, it can happen.

Problem is I don't need oxygen much during the day. I mostly use it at night. But it seems when I'm particularly active, or skip my naps (with oxygen and bi-pap machine), I tend to have these headaches for awhile. Just hard to regulate how much oxygen I need, since I'm not on it all the time. (The opposite effect of having too much oxygen is feeling dizzy all the time. I've been that route too.) Finally woke up at midnight tonight and noticed the headache was gone. And what a relief it was to feel like myself again.

Balancing oxygen and carbon dioxide, like balancing all areas of life, is really tricky. Only when God, properly understood, fills your life can you have true balance. How great it is to feel like yourself--your best self, the one God intended.

Choking

The first question Dean's nurse had for him today was "Have you been chewing your food?" Then I remembered last week that Dean almost choked on a piece of meat from his "Meals on Wheels" while she was here. We both heard him say that his meat was too tough to cut, but we kept on with our conversation till he stood up suddenly with a scared expression on his face and we knew instantly that he was choking.

Even though Carla, the nurse, is a good foot shorter than my tall husband, I'm sure she'd have stood on a chair to give him the Heimlich any second if she had to. But he instinctively pounded his own chest and up came a gigantic piece of meat. It was a miracle it came up. And we were all shaken and thankful that the emergency was averted.

One of the first things that Dean said after it was over was that now he knows how I feel when I have breathing episodes and we've had to call paramedics. I said yes, that's exactly how it feels. It's pretty traumatic when you can't get air.

God breathed into us the breath of life. Our breath can't be underrated. Each one is a gift of God. I feel sorry for those individuals who feel they have to supplement their air with tobacco smoke. They are poisoning the air that God gave them to breathe. I know it's a hard addiction to break, but it's also worth every effort. Recognizing the true source of help in quitting should be easy though. If God gave us our breath in the first place, He must have an interest in restoring it to us. As a woman on oxygen myself and seeing my dad die of lung cancer and emphysema, I encourage everyone to keep trying as many times as it takes to quit the habit.

Staying Connected

There's nothing like the sinking feeling when you discover that your supplemental oxygen was turned off all night and you were breathing with a Bi-PAP and some flimsy stuff they call room air. Instantly, I just wanted to re-do the whole night--to go back to bed and start over. Does this mean I start out the day with fatigue, instead of ending it that way?

I tried not to let it matter, but questioned my stamina all through the day. Amazingly, little difference was noticed, but how many nights would I be able to pull this off and not have my blood gases suffer? I'm not willing to find out.

This thinking got me to wondering how long it would be for me to miss God, if He were to disappear from my life. Would I notice right away? Would I want to start over? What difference would it make for my strength and stamina for daily living? Just as with my oxygen, I'm not willing to try.

It may be called supplemental oxygen, but we all know it is vital. And God is no different. He not only gave us the breath of life when He created us, but He IS the Breath of Life when we are born again. One is for our mortality, and the other for our immortality. I choose to keep my life support for both every day. And to make sure I'm connected to Him when I go to bed and when I get up in the morning. My prayer check. Gotta' stay connected.

A Breathtaking Experience

Having a fractured foot, in addition to a restrictive lung condition (like having an elephant on my chest most of the time), has been a breathtaking experience to say the least. But I have noticed that when I can bear a little weight on the walker boot, I am not so winded when I go places. When I am literally hopping without the boot, I'm huffing and puffing so bad you'd think my lungs were going to explode.

I was thinking about the difference in my breathing effort and wondered if that's how it is with Jesus. Even leaning on Him a little bit brings relief, but imagine how well we can walk through life if we allow Him to carry us entirely. No need to huff and puff and expend all that effort. Jesus has promised to carry our burdens, if we "take His yoke". That means plodding alongside our Lord, every step of the way. He pulls the cargo, we just have to stay in step. I can breathe easier and walk better just thinking about it.