caregiving

Dad and MomFor the past seven and a half years, my life has been largely defined by a series of responsibilities known as caregiving. For anyone who has ever been a caregiver, even for a short time, it is easy to understand what that entails, and what it means in the lives of those involved. Caregiving is not a job that usually becomes less demanding as time goes by, although that is not an impossibility. While caregiving is not an easy job, I can tell you from my personal experience that it is a very rewarding job. It is one that places you in a battle for life…or at least a battle to prolong life. While it is rarely a battle you can win in the end, you do win in that those final years are made more comfortable for the patient, and filled with the knowledge that you love that person so much that you are willing to make this sacrifice for them.

Now, after the passing of my dad, the recovery of my mom, the necessity of placing my mother-in-law in a nursing home, because Alzheimer’s Disease no longer allows her to stay at home, and the passing of my father-in-law, I find myself no longer in the position of being a full time caregiver. Yes, I still have minimal responsibilities with my mom and mother-in-law, like doctors appointments and visits with them, which are very important to their emotional well being, but the main responsibilities belong to others or are no longer necessary. So, I find myself wondering what do I do now that I am not a caregiver? What is life supposed to be like now? This has been who I was for so long. It was even all I talked about sometimes, as many of my family members can attest to.

A part of me is still very tired.  At times during the day, I feel like I could sleep for a month, and yet, I have trouble getting to sleep at night. A part of me is ready to get back out on the trails…walking and breathing in the fresh air, and yet a part of me feels like I just want to sit and do nothing. Maybe it’s an emptiness because of no longer being needed as much as before. It seems like concentrating is very difficult…unless it’s about why we lost the battle for life, or what we might have done differently.

I know that I will get used to having more time again. And as with my dad’s passing, I will come to know that you don’t get over it…you just get on with it. I will get used to not being a caregiver, but I know too, that I will never be the same person I was before. I can’t be. I have seen too much…learned too Mom & Dad Schulenberg_editedmuch…felt too much…know too much, to ever be the same person I was before. I have experienced the adrenalin rush needed to hold myself together during life threatening illnesses reaching emergency levels, and making the decisions necessary to treat loved ones who can’t speak for themselves. I have held their very lives in my hands, and been responsible for trying to bring them back. And, I have lost that battle…twice. I will recover from caregiving and I will get on with it, but I will never be the same. I don’t think it is a bad thing, and I would not change any of it, except the loss of my dads, but while I would do it all again, I know that I have been forever changed by this experience.

Track 2Everyone has a talent in life…something they are very good at. Even kids excel at things, for their age group, and sometimes, well beyond their years. My grandson, Josh loves to play basketball and run in track. Earlier this year, he played in his last middle school basketball game, and today I attended his regular track meet, and most likely the last of his middle school events. It is sad really, to watch kids grow up. Those years pass by so quickly. Before you know it, they are all grown up, and out on their own. That is why I like to attend their activities whenever I can.

So, today, I watched my youngest grandson run with all Track 1his heart. He was entered in four races, and happily, he placed in four races. He placed 6th in the 400 meter race. His team took 7th in the 4 X 100 Meter Relay. He took 4th in the 800 meter race, and his team took 2nd in the 4 X 400 Meter Relay. It was a fantastic day for Josh, and I am so proud of his accomplishments.

Josh had a rocky start in life…coming 5 weeks ahead of his due date, and spending 2 weeks in Presbyterian Saint Luke’s Hospital. While there, he was given great care, ans as soon as his lungs were developed enough to put him out of danger, he came home to live with his mom, dad, and big brother, Chris. In the years that followed, there were few signs of his early Grandma with Joshstruggles left, and most definitely none in the area of his lungs or his appetite. He grew strong, and active, and before long, was proving that he was a fighter…both in life and in sports.

Josh also has a heart for caregiving, and has been instrumental in the care given to his great grandparents since 2005. I think he could easily be an EMT or Paramedic when he grows up, because that ability seems to come naturally to him. Maybe he knows that there were people who stepped in and took care of him when he needed it most, I don’t know for sure, but whatever the case, he has a talent for caring for those in need. Josh is just a loving and talented boy. He has a big heart and I’m very proud of him.

Bob and Caryn - the early yearsWhile I was still in high school, I met the man who would be the love of my life. Since that day, I know that no other man would have ever measured up to him. Bob is my soul mate…the half that makes me whole. What would I be without him in my life. He is the father of my children and my confidant, but most of all, he is my best friend. I can’t imagine my life without Bob.

Bob and I married young. I was almost 19 and he was 20, and I’m sure many people would say that we were lucky, but I have to say that with hard work, we beat the odds. Marriage is not an easy undertaking. When we are young, we tend to think it is all hearts and flowers, but if you can’t weather the hard times, you will not keep the hearts and flowers moments for very long. We are stubborn people, who hate to lose a battle and I suppose that is what carried us through the tough times, and after a while, it just became second nature…we knew that our love would outlast the tough times, and endure through the years.

I can’t begin to imagine how different my life would have been if we had never met, and I’m glad I have never had to find out. While there have been times that were hard in our lives, such as the hard work of the caregiving we are now working through, I think that we are both right where God wanted us to be. If we were not together, I can’t imagine where those we care for would be. You don’t know what kind of help your spouse will be in the care of your parents, until that time comes, and not all spouses are able to handle that job for their own parents, much less for their in-laws. I was thankful that Bob was there for Growing Old Togetherme, and I was there for him through those tough times.

So much has changed as we have grown from love struck kids, through being parents, and then grandparents. I look back on all that our lives have been and realize that while it was hard work at times, the richness that has been our lives, was well worth the teeny seconds in time that were harder, and I wouldn’t trade one moment of what I have for any other kind of life. I have taken this journey with the man I love, and I am so thankful that God brought us together. He knew what was best for us, and He knew that this would be the love of our lives. Happy Valentine’s Day my love!! Thank you for my life’s richest journey. I love you very much!!

As much as I dislike snow, and the inevitable wind that always seems to come with it, there are times when, if I have just a moment of free time, and if I stop long enough, I can look at the snow and possibly see something beautiful. It’s hard to do that though…slow down…look around…stop and smell the roses, so to speak. Everything in life these days demands a hectic schedule. Every day I try to cram everything I need to do into a day that doesn’t have enough moments in it, let alone hours.

I had just such a moment on New Years Eve. I had the day off, and Bob had to work. I still had my caregiving duties, but I had a little bit of quiet time late in the morning. I took a look outside, and there it was. The wind had quit. The snow was a little bit windblown, but smooth in many ways. The sun had come out and was shining brightly on the snow. The air was cold…frigid really, but it didn’t matter. I stepped outside, and looked at the snow. The sun was so bright, it made my eyes water, but I still couldn’t take my eyes off of it.

The snow was beautiful, but looking deeper I saw what the snow tries to hide from those who just casually glance at it. So often we miss the deep inner beauty of the snow. There in front of my eyes I saw the riches of the snow…the gems that it had been hiding…snow diamonds. “What”, you might ask, “are snow diamonds?” Well, they are not just ice crystals sparkling in the sunshine. They are much more than that. They are the little glimmer of hope that no matter how heavy our burdens are…no matter how tough our job or our life is…there are still beautiful things around us that can lift our spirits, brighten our days, soothe our souls, and mend the brokenness that comes from a life that is lived far too often in a hurry.

As I stood there in the crisp cold air, looking once more at the beauty that had been pointed out to me by my Lord, in an effort to show me the things He has made that I might have missed, I felt a warmth inside me…a smile that started in my heart and after making a brief stop in my consciousness, it came to rest on my face. I closed my eyes so I could fix the image in my memory. With  their beauty, the snow  diamonds  had completed  their appointed work. They had lifted this caregiver’s spirit…brightened my day…and made me feel like I could breathe again.

Sometimes, in our everyday lives, we forget to notice just how much God has blessed us with our spouses. It isn’t necessarily the big things they do for us, but rather it’s the little things, that make us stop and think of how blessed we are. Sometimes in a marriage, we forget to do the little, helpful things for each other, so when your spouse does something that is such a simple act of kindness and love, it can leave you…almost in awe of this love of your life.

Many of you know that we have been caregivers for Bob’s parents over the last few years, and I would never leave them in a position of having no one to help them. Still, it is a big job, and sometimes, I find myself feeling exhausted. There is no real help for it, as there are only so many hours in the day, and a number of them are required to give them the care they need to continue to stay in their own home.

Bob is usually right there beside me, working to keep them healthy, and many evenings find us sitting in our easy chairs, after getting them to bed, watching television…well, actually, sleeping through the show we are supposed to be watching. Not your typical date night. We used to walk 2 hours a day, but there is little time for that now…and that’s ok. Our time will come around again. This is parent time, and not only is it necessary, it is a very special time in our lives. I suppose some people think of caregiving as a burden, but I think of it as an opportunity to make the quality of life better for my in-laws, and my mom, although she has not needed as much care these days. It is also a time of bonding….of building a relationship that is so mutually blessed, that I feel a bit sorry for those who never have that bonding opportunity with their own parents or in-laws.

Often, with his mother, there is little Bob can do to help, but he shows his appreciation in the little things he does for me. Whether it is cooking dinner, washing the dishes (or helping me wash the dishes), or the many other little things he does for me, just because he knows I am tired, Bob always shows me how much he appreciates me. That means more than any gift he could give, or even places he could take me. He simply understands if I’m too tired to do some things around the house, and he picks up the slack. Love doesn’t manifest itself in any more beautiful way than that…and I couldn’t feel more loved.

Bob and I went on the first hike we have taken in a very long time today. We used to hike 8 miles a day at least 5 days a week. Now our days are filled with something different…caring for Bob’s parents. His dad has Emphysema and his mom has Alzheimer’s Disease. It takes time to care for another individual…much less 2 of them. Something has got to give when you are caregiving. There is no way to spend the amount of time necessary to keep a person healthy and still spend all the time you normally did on yourself.

When I was able to walk 8 miles a day, I was not only in great shape, but I was at my ideal weight. Now, I have learned to forgive myself, and to know that I cannot “do it all” and still take care of my aging mom and in-laws. I may not be in the best shape ever, but I could not look myself in the mirror if I did not take care of them. Besides, I love them, so I’ll set my needs aside for a while and care for theirs.

Our hike today was harder than I am used to, but it felt so good, and I want to be able to do more of it. I know that the road I have chosen to take will limit the hiking or even the after dinner walking I will be able to do, but…well, life happens, and we have to follow where the road takes us. Many times it is more important to set aside our needs for a time to do something that is more important for someone else. People do it all the time. Raising children is a prime example of it.

I will get back to having time for me again. I’m not worried about that. It is the way that I will get time for me back that I am trying to avoid. They will need help for the rest of their lives, so as long as they live my time will be less mine…and that is ok. I’d much rather have the parents I have left be here a while longer, than have the time for me.

Yes, our hike today was lovely, and it took the work of 5 other people to make it happen. Corrie, Amy, Josh, Brenda, and Jennifer gave of themselves to give Bob and me a vacation, and it is a gift I will never forget. I know it was extra for each of them and their families sacrificed too. I want them each to know that I love them and I appreciate the time I have been given to rest and get my strength back. I will be forever grateful.

My sister-in-law, Brenda has been a part of my life since she was 10 years old, and my sister-in-law since she was 11 years old. She has always been a sweet girl, who was kind and loving. Her loyalty to those she loves is unsurpassed. During the time that her parents have been ill, she has been someone we can count on to be there to help in any way she can. She is one of our village, and she is invaluable. She has dealt with some pretty tough things, and she knows how hard it is on a person.

Brenda is more than just a sister-in-law to me…she is a friend. She cares about me. Recently, when we had a birthday party for me, my daughter Corrie said that part of my gift was to go to lunch at Mongolian Grill. With the events lately concerning my in-laws, I was not really sure when we might be able to go to lunch. A little more than a week had passed, and I was too busy to think about the planned lunch date with my daughter. Brenda, however, didn’t forget. She was going to take a couple of days vacation, and she planned the daily lunchtime duties into her vacation days, in order to allow me time to go with Corrie. It was such an incredible thing to do…and one I will not forget!! Sometimes my days are very full with caregiver duties, and it makes me feel very loved when someone steps up and does something so nice for me. Brenda is the kind of person who looks for ways to help out and make life easier.

In some families, the longer you are part of the family, the more distant people become. They move away, and come home once every 5 years, or they live in the same town and you hardly see them, but not so with Brenda. She has stuck with the village during some of the toughest times we have gone through. She can always be counted on to do whatever she is able to make our journey a success. We are up against health issues and of course, time. We know that at some point the journey will end. All we can do is try our very hardest to hold that day at bay for as long as possible. Team members like Brenda are extremely important to that goal.

Today is Brenda’s birthday. I want to wish her the very best birthday she has ever had. She has been so good to me, and I can’t tell her how much that means. Happy birthday Brenda!! We love you very much!! Have a wonderful day!!

I have been caregiving for my parents and my in-laws now for almost 7 years. In the last couple of days, I have spoken to clients and business associates who know about my situation, and as we spoke, the conversation turned to the blessing of my girls and my grandchildren. I don’t know how I would have made it through these last 7 years without them. Each and every one of them has gone above and beyond the call of duty, and their husbands have given up time with my girls and their kids to make sure that I had the help I needed. How do you ever re-pay such love, kindness, and compassion? You can’t, of course. You are simply forever in their debt…and forever grateful that they answered the call of duty and took on a responsibility that was bigger than any they had ever known, and one for which none of us had any formal training.

As I told of the help I received, I felt such a sense of pride in my family. I am able to count on my whole family to step up and help me in caring for their grandparents. Right down to my teenaged grandchildren. In fact, my grandchildren have been helping out in the field of caregiving since the youngest was 7 years old. They were not squeamish, or grossed out by blood or any of the other things they saw. These were their grandparents, and they love them. The rest didn’t matter. I was and still am so proud of them. Words cannot say how proud, because there are no words big enough. I am also grateful beyond words to each one of them, because they never let me down…not once in those 7 years, and I know I can always count on them. It was not with a sense of gloating that I told of the help my family stepped up to give me, it was more with a sense of gratitude and pure awe at all that they had done. Talk about heroes!!! Heroes don’t come in a finer form than my kids and grandkids.

No one ever wants to be in a position of having to make life changing decisions for their parents, but the harsh reality is that before this is all over, most of us will have to make those decisions….and I’m not just talking about life support and nursing homes. Many of us have to make the decision as to “do we go to the doctor or the hospital” over and over. Many of us have to help out with daily activities too, such as dressing, bathing, meds, shots, and bedtime. Sure, these are hard things to take on for your parents, in-laws, or grandparents, but for me and my family, the decisions are a no-brainer. Do everything to help them to live, and live life to the fullest extent that they possibly can. And when it comes to doing that, I know that my kids and grandkids are right there with me…on board in every way. I just can’t ever thank them enough for the awesome support they have given me and their grandparents at this difficult stage in the lives of my parents, their grandparents. I love you all…more that I can EVER say!!

When Rachel married my brother-in-law, Ron, it was the beginning of a new life for her…many changes were coming, including some that were impossible to prepare for. As you begin married life, you expect certain changes, such as moving, having children, or as is the case in this marriage, adding a step-dad to a family in which the children are already there, and down the road, becoming grandparents. Still, some changes are very unexpected.

Ron is the youngest of my in-law’s children…in fact, he was born 18 years after their first child, his sister Marlyce. That said, when he married Rachel, she was instantly moved into an ongoing family caregiving situation, due to her new mother-in-law’s Alzheimer’s Disease, and her new father-in-laws, COPD and Emphysema. That is a lot to walk into for a 35 year old woman. Of course, she wasn’t the first line caregiver, but as we all know, when it comes to caregiving…it takes a village, and every person is important, right down to the children. The great thing about Rachel is that she can be counted on to come and help out with anything I ask, whenever he job allows. She also has a tendency to stop by, out of the blue, with lunch and just to visit our in-laws. It is a very sweet thing for her to do, and one for which we are all grateful.

Rachel has a daughter, that she had early in her adulthood. Cassie is quite a bit older that her two half-brothers, Riley and Tucker. Cassie actually got married on June 2, 2010, 10 days before Rachel and Ron. Before long Cassie would find out that she was pregnant, and due on August 3, 2011. Early on in the pregnancy, the doctors found out that something was wrong. This is a time when a girl really needs her mom. While Rachel lived in Casper, and Cassie in Powell, Rachel quickly went into action. Prayers were requested from anyone who knew how to pray, and Rachel immediately began to encourage Cassie and her husband, Chris. On July 3, 2011, one month prematurely, little Lucas Rae was born. While he dose have Down’s Syndrome, and had to have heart surgery, he is now a healthy 8 month old baby boy, who is as sweet as he can be, and who definitely loves his grandma.

Rachel’s life has taken many twists and turns, but because of the awesome person she is, it has all turned out to be a wonderful life. Happy birthday Rachel!! I’m so happy to have you for my sister-in-law. Love you!!

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