I picked him up after breakfast and he worked on his word search puzzle on the way back to my house (complaining about the shaky car – hey, it’s the road, not my driving).

Once we got home, he watched church on television which I had set to record before leaving the house to pick him up.  (Okay, no judging! I realize it sounds odd that I make him watch church on television instead of splurging and taking him to an actual church but he likes it. Really!).

Robert then napped. (I’m not saying the two things are related. Just reporting the facts here.)

Next up, it was time for medicine and lunch. Oh, I hear you asking if I actually let him eat meat today. No, I did not. It was PB&J, chips and Rocky Road Ice Cream. (Wow. That sounds terrible in print. Does it help that it was whole wheat bread and organic jam?).

There was a bathroom break and then brushing his teeth (his dental hygiene habits are fabulous which is probably a good thing considering the lunch I just fed him).

Playing cards was next on the agenda. I won the first game (I know, look up and you just may see pigs flying around). He beat me the next game. (Phew – the world isn’t coming to an end!)

More meds.  Thankfully, he reminds me! (I tend to forget the 2:00 p.m. dose.).

Time for the store. I want to make sure he has enough back stock of supplies to last while we’re gone for a few days. 7-Up, toothpaste, nighttime briefs and pens. (The last time I was out of town, his pen ran out of ink. What are the odds?).

Not a lot of time for in depth talking during the day but it was fun anyway. On the way back to New Home, he finished a word search puzzle and he didn’t feel like starting a new one.

So we talked. I explained I wouldn’t be coming over for a few days because we’re going to be out of town. I also told him Other Brother was taking his family to the Grand Canyon and Las Vegas. He said, “Sounds fun” to both my stories about our vacations.

Robert surprised me by reminding me he won $100 in Las Vegas many years ago when he went with our dad. Did you win it at the slot machines?

“Playing cards.” How did I not guess that?

Even though Robert couldn’t play Blackjack now, it’s comforting (yet a little heartbreaking) to know he once was able to do so.

What was your best memory of Dad?

“He was nice. I liked him a lot.”

Hmm. If I had a gun to my head to come up with 25 words to describe our father, “nice” would come in at 137.

Memories are influenced by our perspective and since another of Robert’s memory of our dad is that he encouraged him to read “How to Win Friends and Influence People” by Dale Carnegie (which is now Robert’s favorite book), then I suppose Dad seemed nice to Robert.

What about Mom? What do you remember most?

“I liked her very much. Too bad she died from so many injuries.”

Sometimes when Robert says things I can’t help but try to figure out how his brain sorts through information. Mom died of cancer; cancer destroys cells; maybe the brain files this under “injuries?”

Mom and Dad loved you very much, too, Robert.

“Yes. I loved them a lot, too. Are we almost there?”

I’m not sure if Robert will remember this conversation a few years from now (or if he’ll remember to put on clean jeans tomorrow like I asked him to) but I’ll remember. Thanks for the memory, bro.

Every once in a while, I get a call to drive my mother or brother somewhere. When it turns into something much more than I’d planned, like a six-hour wait instead of a there-and-back commute, Lisa has a reaction. She wants to know if my family members appreciate how much my assistance involves, specifically how much Lisa gives up when I volunteer for some of these trips.

Like most of Lisa’s concerns about my caregiving, this one is about its impact on her, and no one denies that she puts up with a lot. Our therapist won’t let me mention that I put up with a lot from her mother over 10 years, so I can’t talk about that. As usual, it’s against the rules to use all my best weapons.

But just as caregivers must be caring people, we must also be great appreciators. In the name of my own mental health, I appreciate the value and magnitude of the gift of time I give to the family members who need me and I appreciate the sacrifice Lisa makes in allowing me to go when I am called.

But I also appreciate the emotional, intellectual and financial support that Lisa and I receive for the help we give. As we build our business, the family ship is being buoyed by gifts from these three people, but also from other family members who love them but can’t, usually for logistical reasons, be here to help out. Even Lisa’s family is helping us out now.

And as much as we appreciate the money, we get a lot of positive strokes from these people for the big and little things Lisa and I do to help those in my family who need help. That admiration and respect has a value that exceeds the monetary reward.

I was raised in a family where time was not money, money was not good and more was not better. It was an unpopular stance at the time, and we cut many corners to make it work. After 17 years, Lisa’s family might be beginning to open their minds to the concept, and I pray that it serves them well.

But as I scan across the big picture, I can safely tell Lisa that, yes, my family appreciates both the big and little things that we do for those we support. And yes, our lives are better for having earned that appreciation; and we should appreciate that.

For the last several years, I have taken a few minutes every morning when I wake up to just listen to Lisa breathing against the rush of her C-PAP, and celebrate that she didn’t die in her sleep overnight. I remind myself once each morning that the day is coming when she won’t wake up beside me. But that’s not today.

Around Christmas, I lost my full-time job and wrote my e-books about caregiving to pay the bills and maybe even get Lisa health insurance again. We have been trying to be careful so that she doesn’t get hurt, and we’ve succeeded at that. But we’ve also been trying to keep her from getting sick, and that doesn’t work nearly as well. Lisa has a compromised immune system and she’s allergic to everything. She’s violently allergic to some things, so it’s rare that three months go by without something she ate, drank, touched or smelled trying to kill Lisa.

Just before Memorial Day weekend kicked off, she ate half a sandwich that didn’t agree with her. The amazing part was that I ate the other half of that sandwich and it didn’t bother me at all. But as it always has, food poisoning launched Lisa into a bout of projectile vomiting and I had to start planning for a trip to the hospital that I knew we couldn’t afford.

Looking at the prospect of paying someone $1,000 an hour when I don’t have an income is daunting and frightening and not something to be done recreationally. But there we were, too weak to crawl to the toilet, plugging in everything we learned about treatment that New Years Eve not so long ago. It was OTC anti-nausea drugs and sips of GatorAde until it cleared up. My decision cycle from one hour to the next was based on the question of whether Lisa was getting worse, staying the same, or getting better. Lisa hit a higher bottom this time than she did a year and a half ago, so I never found myself torn between nursing Lisa myself and dialing 911. That’s probably because she was not as “poisoned” this time as last.

But they had prescription-strength nausea meds at the ER, so they were done with Lisa in ten hours. It took three long, exhausting days and nights before the over-the-counterparts got the job done. This year’s Memorial Day Weekend will live in infamy at our house for a while.

But it serves as a reminder to us to celebrate every day we have together because we don’t know when our time together will end. That reminder to us is now our reminder to you.

That’s all I wanted to say, was “NO.” When it comes to household chores and activities I’m not your typical male. I can cook, clean, do above average general home repairs (I finished my own basement), laundry, grocery shopping, paying bills and I’ve even been known to bake once in a blue moon. I can look forward to many things each and every day. What I didn’t look forward to was planning meals. I’m a manager of teams and volunteers but I could not wrap my head around what are we going to have for supper for the next 5-7 days! Now being a typical dad, when mom goes out for a night or a few days, I will settle on pizza, BBQing, McDonald’s and all the other typical dad meals when mom is not home. Like most dad’s, I will threaten my brood into silence about not telling mom what we have eaten while she was away. It sometimes works, but most times doesn’t.

The problem with this recent situation was that my wife was going into hospital for somewhere between 4-6 weeks. I don’t think I could handle the typical dad meals for more that three days let alone for 4-6 weeks. What was I going to do?

I pulled a a group of close friends and family together, four couples in all, and we talked over dinner and put a plan together. All of this took place before my wife went in to hospital so that she could be part of the discussion but also so that she could rest in hospital knowing her family was being taken car of as well. This group became our advocacy team and spoke on behalf of my family situation to others and communicated on our behalf as well.

Here’s what we decided:
- One night a week @ friends for dinner.
- One night a week a meal would be brought over. (More were brought over and stored in our freezer.)
- This group also provided gift cards for gas, groceries, restaurants, coffee, and many other things that they collected from others.

Now that took care of two nights a week but what about the other 5? I decided to pull a cook book off the shelf and what I didn’t realize was that this book was going to revolutionize my meal planning life in a way I had never imagined.

This book gives you 10 weeks of recipes for 5 days. Now the portion size is for a larger family than my three but we had left overs and loved 95% of all the meals in here. Now the best part of this book is that it also gives you a shopping list for that week. The only things that I had to do was add anything else to the list that we needed as well as take anything off the list that we already had in the house. It was that easy.

Each recipe tells you how long it should take from prep to table. Let’s you see how it should look (I never achieved this one). Some meals needed preparation the night before but most didn’t. And it gets better!

Sandi Richard has multiple books. And it gets better!

When you go to her website: Cooking for the Rushed, click on the grocery list tab and you can download and print the grocery list for that week off your printer. It is in PDF form and I would have loved one I could edit but that’s a convenience I can live without.

Now we have a life threatening allergy in our home so I would have to substitute or just subtract some items but anything you do for your family needs to fit them.

As a family we would rate the meals as “Keepers or Jeepers.” Keepers we would have again and Jeepers we would mark in the book so we would not make it again.

As a family we would not follow these meals everyday. We always had a frozen pizza we could use or go out for convenience  to McDonald’s. What this system did for me was simplify things on an ongoing basis. Something I didn’t like to do in the past, I now enjoy.

Parenting tip: I would not make multiple meals for anyone in our home no matter what age they were. What I made, we ate. I was not going to be a short-order cook for anyone. If they went to bed hungry, they always had a big breakfast the next day and they learned to eat what was prepared.

(Editor’s Note: Today, we welcome our newest blogger, Donna W., who cares for her mom.)

To escape, to have respite, take a vacation, however you would define the luxury of getting away, it has a much different definition and result for a caregiver.

I have been able to get away at least once a year since I started caring for mom. That isn’t very much, but it has become what is  normal for me. For my husband and I to go anywhere more then a few hours  involves a great deal of planning and preparation. That task is enough to make me stay here and not go!

But, I manage to pull it all together and we leave. I have lived an isolated  life here since caring for mom, getting out sometimes only once a month sometimes not even that. The norm for me would be at least once every two weeks. My “radar” is always tuned into what mom is or isn’t doing, whether she is sitting in the wheel chair, in the front room, or in bed in her room, no matter what time of day or night it is, that is my norm.

Now you would think I would relax and enjoy wherever I was going, whatever I was doing? No.  Why? Because I have left all that is normal to me and my daily routine, my  normal environment, my normal eat and sleep schedule, not to mention what I sleep on.

The sights and sounds elsewhere are foreign and even unsettling. Getting away takes me out of my normal  24/7 on-call, round-the-clock way of life and put into the normal routine  of someone else’s life. It is not comfortable, it should be, but it’s not.

Speaking for myself, I am not comfortable going  somewhere else, and I am always anxious to get back to my normal.  As much as this home has become my prison and caregiving my jailer, this is also where I feel secure. It is difficult to just sit and do nothing somewhere, to not feed someone, change them, listen to them whine, even missing all the emotions and frustrations that are a part of each day.

Even though there is a desperate need to go away at times and have what others call normal take place for awhile, I can’t really relax and enjoy it because I do not relate to or respond well to others’ normal lives anymore.  I don’t know how I will begin again and adapt to what others call normal once mom has left us.