Archive for August, 2014
I’ve been a caregiver for almost 6 years now and I’ve functioned that way in several different ways from hospitals to nursing homes, rehab hospitals and finally home. I’ll be the first to admit (as most will) that it’s not an easy job. At times I miss the BC (Before the Crash) life that I had. Being a caregiver offers no breaks, a huge loss of freedom and major changes. It can be so difficult to just keep putting one foot in front of the other. Areas that were not a struggle before, are now front-and-center-in-your-face. One thing that many do not realize about caregiving is that even the bright spots can be overshadowed by the situation. It’s almost like you aren’t allowed to enjoy the pleasures of life like others, or at least not to the same degree of enjoyment. But tonight I had a great bright spot and I held on to it because I didn’t want to miss it.
My daughter and the grand-babies were here for the evening. Well, I’ve been trying to get out and walk each evening and my daughter has also started walking for health reasons. Tonight we walked through the park to the splash pad on the other side and let the grands play in the water. It was so much fun watching them run and play and giggle as they got splashed by cool water. We laughed a lot – and that was nice.
As we began walking back to the apartment my grandson took my granddaughter’s hand. I was trying to capture a picture so my daughter began pushing my son in his wheelchair. That’s not an easy task as he weighs about 150 and the chair another 80. I found myself caught between the two – my daughter in front pushing my son and my two grandchildren behind. I was listening to the children’s chatter and heard things like Eli telling Kyrie that he was the big brother and she had to stay on the pathway because he didn’t want her to fall in the icky water. In that moment I took a mental freeze-frame shot. I wanted to savor it, remember it and let it be pleasurable. It was just a perfect evening and I gave myself permission to enjoy it.
As caregivers we can get so caught up in taking care of others that we fail to miss these kinds of bright spots. Our schedules and lives can be so rigid that they shroud the pleasantries. It’s okay to enjoy some things in life; it’s not against the rules. Maybe I’m learning how to live a little bit. It’s certainly not what I had imagined, and it’s definitely not the way I had my latter years planned. But it’s okay to laugh, play and enjoy things. There’s no telling what tomorrow might bring – how well we know that – so when we have these little bright spots — hold on to them — let them be bright, don’t dim them with the gravity of the circumstances. It’s okay to live.
It has definitely been a random day today! I am not even sure where to start with all my crazy thoughts. Tonight was one of the many nights I crashed. Not really depressed, although that has been an issue in the past. I just go into overload mode or something and it’s like I can’t even function. It’s not indicative in any way that the day itself was bad- just maybe too much.
When I get like this (usually later at night) I’m not worth much at all. I don’t feel like doing anything. I can’t get my mind around working – words just don’t come out right – I don’t feel like running or exercising; I pretty much just don’t want to do anything. Tonight I started wondering if I’m just lazy. Maybe I don’t want to work or something. But then I thought back about my day – and all my typical days and talked myself out of it.
Nights like this I feel like I am a huge failure. I feel like I don’t get anything done. I know that this is not true – but it’s how I feel.
I did get a lot done today – just not enough. I’m nearly caught up with my work, between classes in school, and I tutored starting at 7 this morning. Chris sleeps in and I tutor in China and Taiwan. But then there is also all of the stuff I need to do for Chris. I bathe him, get him up, fix him something to eat and then feed him. Then it’s time for stretching, TENS unit, splints or other types of therapeutic activities. And that’s all just by about 11 in the morning. I still have writing to do!
I’m not lazy, I’m a caregiver! Those two really do not go together. Maybe we should classify the term “lazy caregiver” as an oxymoron. Caregiving itself is a full-time job, I have to remember that. But I still have to make a living on top of that. When Chris slept most of the time I had chunks of time to get my work done, thankfully he is awake more and more of the day and evening. But it leaves me less time to work. Not a complaint- just fact. I’m trying to figure it all out and adjust.
But it’s nights like these (and I’m having a lot of them lately) where I know I got a lot of beneficial things done, but it fell short of what needed to be done. I keep thinking “I’ll start over tomorrow” but it sure gets old. I’m wishing there was a restart button somewhere!
Sometimes I have to tell myself to be content. Paul said he was content in every state – whether there was abundance or lack etc. I have to find a way to walk in that kind of peace. I’m going to too!
I have to remind myself that I am not the Provider. God is my provider and I have to be content that He will take care of me body, soul and spirit. That’s not an easy task trusting Him – after all I have to believe that He allowed this to happen to my son. I question over and over. But over the last 6 years I’ve learned to trust Him in the trouble – without assuming He’s going to take me away from it. No matter what is going on it comes down to the question if I am going to fully trust Him or not.
Now I may state it through clinched teeth and white knuckled hands, but it is my choice to continue to trust Him – even on nights like these. I trust He will pick me up and dust me off one more time. So as I retire tonight, I’ll be thinking about His restoring power, His ability to pick me up and put me under His protective covering and offer me His peace. I believe I’ll just rest right there – and once again – start over tomorrow. He made each day new – and His mercies are new with the morning. (You do realize that it is always morning somewhere, right?)
So tonight I decided to get my son back outside for a bit. It’s funny how everything can become so terrifying. I used to walk him almost every evening. There is a nice paved walkway in a frisbee golf park behind the house. It’s pretty much a mile from my door, through the park and back so it makes for a nice little walk. Since he got sick back in November I have been so nervous about getting him out but tonight I figured we both needed a little “fresh air therapy.” We’ve been locked up in the house this week.
It was really a nice walk, it was still a little warm but there was a nice breeze blowing. I enjoyed the breeze, Chris not so much. Hopefully he will get used to it – we live in Oklahoma so he’s going to have to! We only saw about three people while we were walking. My mind can race and it sure did tonight. I noticed why each person “appeared” to be there. My assumptions of course can be wrong, but hey – it was my imagination. Anyway. One young man was exercising his dog, another lady was pushing a stroller and the other person was walking – my guess is to lose weight – but again it’s only an assumption.
The young man passed us twice since it’s an out-and-back route. Both times he spoke in a friendly manner, without actually generating any conversation. The lady with the stroller looked the other way as we passed by while she was sitting on the bench. And the other lady at least nodded in our direction. I started thinking that it seemed we were all in the same place, at the same time but with entirely different agendas. We used the same park, at the same temperature, dealt with the same wind and walked on the same pavement. But all of our motives and purposes were entirely different. I began to feel very disconnected. To them. To others. In life.
I realized the park scenario was very parallel to how I feel in general. I’m in this world, walking through life with a lot of people doing the exact same thing – but we are so disconnected. Our worlds do not overlap. I go my way (on the same path) and everyone else does the same. It can be so easy to get caught up in what I have to do that I do not have any regard for anyone else on life’s path. It can be so easy to live for the moment – and live in our own little worlds without thinking about others at all. I did a devotion called “Quietly Discarded” that kind of makes that point and talks about being politely ignored. I guess the lady on the bench got me to thinking about it. But we really get that a lot – people really do not know what to do with us – we don’t look like the typical picture of life and so it’s easier to ignore than to look at the “ugly” parts of life.
In many ways I feel like I just don’t belong in life’s picture. I’m here along with everyone else – but my walk is not like anyone else’s. It’s funny because we can all say that really. But I feel the disconnect from “normal.” At first, I feel angry about that. I get mad that I have gotten used to pushing my son everywhere in a wheelchair and learned how to navigate it through tight spots like most stores. You should see me at the grocery store, I’ve done quite well. I can push Chris with one hand and pull a cart with the other. We make a nice little train. But it makes me mad that I have to adjust to that. Tonight I was mad that we were different. I missed my son walking and talking with me. We had coffee together today – he drank a little – I drank a lot. But I remembered sitting on the porch with him literally for hours as we discussed God and church from many angles. We could dissect scripture and talk for hours only to realize we had no real solutions while we went through pots of coffee. I miss that. That’s when I get upset and start a horrible downward emotional spiral. I’m learning to catch myself.
So tonight I had to choose once again to forgive. And I chose to be thankful -for many things. One is that Chris is still breathing for as long as there is breath there is hope of better days. I get really frustrated when he does not respond favorably – on days like today. But I have to keep pushing on, moving my feet and trying. People keep telling me how strong I am but on days like today I feel so vulnerable and weak. I’m reminded of a scripture which helps me refocus my energy and efforts on the things that matter:
And He has said to me, “My grace is sufficient for you, for power is perfected in weakness.”
Most gladly therefore, I will rather boast about my weakness, so that the power of Christ may dwell in me.
Therefore I am well content with weakness, with insults, with distresses, with persecutions, with difficulties,
for Christ’s sake; for when I am weak, then I am strong. (2 Cor. 12:9-10) NASB
There is a lot going on which means that my mind is working overtime to keep up. Hence, the post midnight blogging. I won’t even try to tell you all that is going on but right now things are in an upswing. Chris is doing well and making slow but steady process once again. It’s almost like he picked up where he left off last year when he started getting sick. It seems to be going much better. When he does better – my whole mindset is better. Trust me – it’s just good when it’s all on the upswing together.
I really do feel like I’m on a roller coaster much of the time; or maybe the correct analogy would be walking a tightrope where I have to keep perfectly balanced or fall to my death. Yeah, that’s what it feels like. The trouble is that I have some very good problems. Chris is doing better, up more hours of the day and needing a lot more one-on-one therapy and attention from me. He is eating good again so that consumes some time – not a complaint – just a fact. Think about all the things you do just to take care of yourself each day – eat, shower, brush your teeth, eat, go for a walk, eat again… everything I have to do for me also has to be done for him – it’s almost like it cuts my time in half to start with. Then add to that my work load which has grown which is another great problem, it’s just difficult to keep up with. And I’m about to finish up my Master’s in Health Education. 12 weeks and I’m done. Then I need to exercise and train for my races – unfortunately when I’m in a time crunch the thing I need the most – gets cut most often. So like I said, it’s a balancing act to keep it all together without losing it sometimes. (smile)
Anyway – that kind of catches you up to where we are and I hope to be a little more regular with the blogging because it helps me process my emotions and thoughts – and boy do I have a lot to process! But tonight I had something really crazy happen at the race. It was the Limbs for Life 5K and the proceeds help provide vets with prosthetic limbs. Usually there are runners with prosthetic devices and I really do not feel worthy to run with or for any of these honored individuals. There is a wheelchair division at this particular race too.
They kept telling us to stay to the right since it is an out-and-back and the wheelchairs and other runners will be returning and they will need the other side of the track. Somehow a kid got tangled up with a racing wheelchair at about one km in. The wheelchair went flying and the guy in it fell completely out. It’s a good thing he was wearing a helmet. I stood there for a minute to assess the situation. What I witnessed in the next 2 minutes was simply amazing. One lady began directing traffic and making the runners move back to the right so that they could continue moving. The mother of the child and two other people ran to the overturned wheelchair and started checking on the young man. They turned the wheelchair back upright at which time I stepped over to help steady it for them as two people picked the man up and put him back in his chair. He kept saying he was fine and he took off again. I took back off leaving the poor little boy crying in his mother’s arms. I took away a lot from this experience. One was that before Chris’ injury I’d have likely kept running with the other runners because I’d have been terrified to even think about helping. It actually was very natural for me to step over and offer assistance, although I really didn’t do anything much.
The second thing was I got mad. I was so angry that the young man in the chair could have been seriously injured because someone didn’t follow the directions. Now I do not know if the child’s mother didn’t try to keep him to the right or what happened as I did not see that part – but I got fighting mad as I thought about how negligence could have really hurt someone and almost 6 years ago my son was injured through a negligent (not purposeful) act. BUT — before we turn our noses up and pass judgment on this kid and his mother – let’s examine ourselves. How often do we go over the speed limit because we know that they won’t stop us up to 5 over – right? It’s no different. The rules and laws in most instances are made to provide protection and our carelessness or need to “get on with our agenda” can cost someone else dearly. Later I did muster up some compassion for the little guy as I know he was really frightened by the ordeal.
For my part – I surprised myself. It was so natural to step in – the race did not matter. I had no thoughts about the race until I was sure the young man was up and rolling again. I estimated we were there with him for about 2 minutes. That’s about what my final time reflected – and I still came in third in my age group and came home with a medal! I’ll try to not be so judgmental about the other guy – and concentrate more on my own character. Forgiveness many times, is an everyday thing for me. Gotta keep working on it….
No one plans on caregiving particularly, for many it just happens. In my case it was an automobile accident which left my son Chris with a serious traumatic brain injury (TBI). For many of us, our lives stopped that day. But then slowly each of those affected began gradually moving back into their normal lives…without us. Even though my world seemed to stop that day and made some very sharp turns – it didn’t really stop; it just changed.
I guess what I am saying is that all of life’s events still occur alongside caregiving. Once I had become adjusted to the caregiving aspect – which is never anything I had imagined in my “former life,” other life events went on. People got married, had babies, I became a grandmother, my parents continued aging, and friends died. For awhile the emotions around all these events were strained at best. Even the good stuff was difficult to bear. Now that I’ve settled into my life as a caregiver and I’m not looking for anything in particular to change anytime soon – the emotions don’t seem as raw. Perhaps it’s more that they have shorted out and fried and I just don’t know it! But at any rate, the emotions seem more rational and normal again.
Don’t get me wrong – nothing and I mean absolutely nothing is normal. There are some things that seriously pull my emotions all out of whack. For instance, when I see my son’s friends getting to go on with their lives – they travel the world, continue to pursue their dreams, play music, marry and have children, I just wonder. Where would Chris have been? What would he have been doing? Would he have married his true love? Would I have more grandchildren…the questions run in huge packs. But I have to make them stop. It’s not fair, or healthy, to allow my thoughts to run away with my emotions.
Today I was pondering some of these types of things and realized that they were not nearly as difficult as in the past. For one thing, I have developed my own personal strategies for dealing with these types of emotional upsets. It was kinda – do that or be overtaken by grief. So today, I found a tiny bit of comfort rather than discomfort in the fact that life has gone on. It’s really the same for everyone – we all have grief, sorrow, pain, joy and triumphs that we work through. I just have to work through my life occurrences while providing full care for my son.
Even though life is not an even playing ground and it’s not exactly the same for everyone, there are some things that we all have in common. We all have exactly 24 hours in a day to accomplish all our goals. We all have a circle of influence – some are smaller than others but we all influence and inspire someone; and someone influences and inspires us. The question is now what we are going to do with what we have?
One day I was whining about my whole situation (yes – I do whine!), then I found this quote that totally changed the way I was thinking. It said simply: Crying will get you sympathy, sweat will get you success. I have lived by that for some time. I chose to start working and then to work harder at working in order to succeed. I didn’t want sympathy – I wanted what was fair. Well – life is fair in some ways even when it’s not fair in others. For instance, we all have tools, we have a mind, emotions, creativity, and time. It is up to me what I choose to do with those elements.
First of all, I choose to rely on God for my strength – I just don’t know any other way.
Secondly, I choose to continue to press my son toward improvement – who knows what may come of it?
Thirdly, I choose to not live my life with my head in the sand – or in my circumstances. We have to look past ourselves and our own situations no matter how difficult or painful they are – other people are hurting too.
It’s my choice to live by crazy faith that is not about getting “prosperity” which is not soul prosperity at all – and walk with God each day of my caregiving journey. It’s not that knowing God is walking beside me makes it any less difficult – or any more normal – but it sure helps to know He’s there to lift me up when I get down, to strengthen me on those many occasions when I feel so very weak. All I can do is pray that He helps me to help others deal with their own situations. We have permission to grieve, hurt, laugh and play. We really can live life with everyone else – even from the cave – or from the furnace. We may be singed and smelly – but life is still worth living in Him.