It will be vulnerable…
It will be raw…
It will not always be easy, but it will be worth it.
Please follow me as I write about living and dying with ALS.
This is the post excerpt.
It will be vulnerable…
It will be raw…
It will not always be easy, but it will be worth it.
Please follow me as I write about living and dying with ALS.
“I’m sorry, but you have ALS.”
This man who I had known such a short time was dying. He was my friend, and then my lover. I had known him less than two years. Our relationship was incredibly new, both of us not willing to jump into something so serious, so quickly. This was devastating and unexpected. And this changed everything.
I didn’t know what to do but I knew I wouldn’t leave him to go through this all alone. I promised to stay by him as he went through this. He would soon become my husband. Looking back, it all seemed so much easier in my mind than what the reality of ALS would bring into our lives. I wish there had been someone to sit me down and tell me what to expect, and what to do.
There are support groups, both in town and online. They were helpful, but somehow I would always leave feeling worse than when I walked in. The online support groups are helpful, but it was also incredibly overwhelming at first, as the people posting were much further along in the diagnosis then we were, and sometimes, I wasn’t ready to face what our reality would be.
Yes, I am saying “we.” I think by this time, I have that right. We are going through this together. I am right there, by his side, as he slowly deteriorates. As he has lost the use of his arms and legs, I am the one who has stepped up and become his limbs, his voice, and the person he turns to for help.
Becoming a caregiver is challenging and at times very difficult. It can be a very emotional time, as you are trying to care for someone else. The stress of having to learn new medical terms, find equipment, learn insurance jargon and paperwork, and numerous doctor’s appointments can be daunting. Depending on the speed of the disease, (each patient is different) some people find themselves struggling to keep up with all the new challenges. Many caregivers are forced to continue working and many are still raising families.
This was a completely new world to me. At the time of his diagnosis, I was 36 years old. The most I knew about how to care for someone else, was in raising my babies. A daunting task, but with each passing year, a child gains independence. I had never cared for someone who was sick. Becoming a caregiver to someone with ALS is not unlike caring for a child in some ways, someone who will become more child-like in his needs with each passing year. However, we grieve the losses now instead of rejoicing at the new accomplishments.
If I would have known then what I know now, I think I could have saved myself a lot of unnecessary stress. Now, when I meet with families that are dealing with many of the same issues, I give the advice I wish I would have known years ago.
I have met many caregivers and family members over the last few years who are now dealing with ALS as well. Like me, they too are overwhelmed and scared at what the future holds. I find that this role changes a person’s outlook on life. Many of the experiences I have had are similar to what they are now experiencing. I wanted to find a way to explain from a caregiver’s point of view, their needs that they are often too proud to ask for. Caregivers have pride and dignity. Sometimes, they are so proud, they want to ask for help, but find that they can’t. Other times, they fail to communicate their needs, and can’t understand why others can’t simply know what they need. They are sacrificing their own independence and goals and life dreams, while they care for someone else. They are also dealing with the fact that their loved one is dying and they are powerless to stop it. This is an extremely stressful time in their life, and there is no way of anticipating all the needs for both the patient and the caregiver, but I wanted to find a way to help others look for small ways they can help.
I have noticed that in the beginning, many people offer help, or they reach out and say that we should contact them if we want something. Please don’t expect us to ask for help. Often times, we can’t. It becomes a source of shame for us to have to ask for help on top of all the other things we do. We feel it is our responsibility, and we don’t want to burden others. Soon, the offers of help slowly fade, and so do the visitors.
Many people with ALS become lonely, as family and friends continue with their lives, with little to no contact from them. While phone calls and text messages are appreciated, so is stopping by and visiting. Each family is different. Maybe stopping in for a quick visit is a great idea to some, but to others, a phone call ahead of time to find a time that would be good for everyone would be better appreciated. Either way, don’t stop visiting. I understand it is difficult to see someone change, to look different, and to lose their ability to communicate or move, but I promise you, it is much more difficult to find yourself all alone because no one comes over to spend time with you anymore.
Below is a small list of ideas you can do to help someone you know who is a caregiver. Because by helping the caregiver, you are also showing your love and support to the person with the terminal illness.
Remember that the chances of you becoming a caregiver or patient at some point in your life are extremely likely. Maybe you will have to care for an aging parent, or a spouse who becomes ill. I hope that you never have to, but if you do, please remember to ask for what you need. There is no shame in asking, and being vulnerable to your own needs helps others to know what they can do to support you.
Showing empathy and support can make a world of difference for both the patient and the caregiver. If you are uncomfortable with helping, there are other ways to show your support. Just be sure to find ways to stay connected! A terminal illness is difficult for everyone, but it is important to realize that there are many ways to show your love.
If nothing else, share this. Maybe those you love will see it and it will remind them to step up and lend a hand!
Wishing you all a wonderful holiday season, with love and laughter,
“I haven’t talked to you in forever…how are you?”
I am pretty sure my voice is raised in that high-pitch sound I make when I am trying to sound more excited than I really am.
“Well, I’m here…”
I could tell by the way he was out of breath, he had been scrambling to find his phone. He’s upgraded past a flip phone, somewhere close to a smart phone, but that means little to an old man who cares little for technology. I doubt he knows how to use any of the features on the phone, except to swipe on or off and to answer incoming calls.
He seldom sounds happy to hear from me anymore.
I made this call, even though I had been dreading it. I haven’t spoken to the man I have called “dad” in almost two months. We seldom talk anymore. When we do, it is forced. Both of us not knowing how to get past the wall that somehow has been built between us.
I am calling him to invite him to our dedication ceremony tomorrow…knowing he won’t come. I am not sure why I feel compelled to invite him.
I want him to be proud of me?
I want him to give me just one compliment?
I am a glutton for punishment and rejection?
He laughs at the invitation.
“We are handing over the keys to the first family. The house is finished, and I thought you might want to see it now that it is finished.”
I feel my stomach flip and turn into knots again, knowing his answer before he even gets the words out. Somehow, I feel like a little girl again.
“No…no I don’t do people”
He pauses as he says this, as if this isn’t the same answer he gives every time I ask him if he would like to join us. If there is even a small chance of there being more than a few people around, he makes a fuss about how there are just too many people.
I feel that same rejected feeling that is becoming familiar every time we speak. It’s the same reason I don’t call anymore.
I try to persuade him again.
“I doubt there will be very many people there.”
There it is again. That damned high-pitch tone in my voice.
“I am not going anywhere. Besides, if I come, it will probably end up costing me money.”
This…this is the one thing I do understand about him.
It always come down to money with him. I am pretty sure this man was born on a budget.
How much will it cost?
Why would anyone spend money on that? or doing that? or for that?
How will someone take advantage of him this time?
Everyone is out to get him. Everything is a scam.
I try to convince him that no one wants his money. I even point out that I have never asked him for anything during this project, or for the foundation and I didn’t want him to come for his money. I just thought he might like to come and see what we’ve done.
He isn’t interested.
I tell him about the luncheon today and how our foundation has been nominated for an award. We were picked among numerous non-profit foundations across the state. He doesn’t seem impressed.
“I don’t understand your world.”
He says this in almost angry sigh. As if this is my fault for changing the status quo on him.
And that is really all it comes down to…
I disappointed him four years ago when I left my first husband. He has never forgiven me. I went and turned my entire world upside down. I didn’t ask permission, nor talk to him about it. I just did it. No one saw it coming, myself included. Sometimes I can’t even explain why I did it myself. But it doesn’t matter because he wouldn’t listen. He knows….or at least he assumes he does.
I quit working the job he thought I should be working. I wasn’t happy being a stay at home mom either. However, his opinion was that if I couldn’t make an insane amount of money, then I should be content being a good little wife and be at home with my children, waiting patiently for my husband to come home from his office, dinner on the table and house immaculately clean. Don’t forget to stay thin, look pretty and not complain. After all, I would never find another man who loved me as much. I should be happy with that life, right?
Who needs that? I didn’t need an education, and I was stupid for wanting one. I just needed to keep putting that money away, live as frugal as possible and stay away from all those scary people who only wanted my money and stay away from all the scams out there that sneak and steal that almighty dollar.
Imagine his surprise and frustration when I enrolled in school full time, left my husband and did everything he always told me not to.
Imagine his surprise when I found grants and scholarships to pay for my schooling.
Imagine his surprise when I introduced him to Matthew a year after I went through this midlife crisis of mine!
A man so unlike my first husband, in looks, lifestyle and life experience.
My dad would sulk about the first marriage ending, (I think he took pride in my marriage and he was disappointed in my divorce, although he will never admit it.)
Before I introduced him to Matthew, he told me I was just doing what every other woman does in her thirties. I just wanted to go “whore” around while my ex-husband played Mr. Mom. There was no use in trying to persuade or argue my side. There was no point in arguing that I had my children with me all the time even as I managed being a full-time student.
I wonder what he thought when I called and told him my boyfriend was just diagnosed with ALS?
After Matthew proposed, I called my dad and asked if he would like to spend the day with me. His response was, “What do you want?” He assumed I wanted money.
This would begin an entirely new way of communicating with someone whom I have loved so dearly most of my life.
This man picked up a broken widow, and a scrawny, half-starved, scared little nine-year old girl almost thirty years ago and helped them after a series of traumatic events. He would become a father figure to me, but most importantly, he was my friend. I relied on him. I used to call him almost every day! Never for money, but just to talk….about anything and everything! I idolized this man! I thought he was brilliant and I thought if I took his advice, and did what he said, then he would be proud of me. I tried so hard to do everything his way, to have his approval and love. Who knew that approval would come with so many strings.
The week before Matthew and I were to be married, I asked if he would like to go to lunch and visit. He came begrudgingly, and I knew he was more uncomfortable than ever before. That would be the day he would tell me that he probably would not be able to see me very much anymore. I hadn’t expected him to say that.
“I don’t do illness and I don’t do sickness.”
His last piece of advice that day, before I would marry a dying man was and I quote:
“make sure you don’t stop having sex, because that is really important.”
Trust me…I was just as shocked. That wasn’t exactly the sound advice I had been hoping for. There were no words of support. There was no hug, and assurance that I would get through this. I assumed maybe something along the lines of, “You will be stronger after all this, and you will be okay.” But you know what they say about people who assume…
I have only seen him a handful of times in the two years since my wedding day. Now each time I see him, it becomes more awkward than the last. He can’t understand how there are people who actually choose to volunteer their time, resources and money to help others. He thinks someone is going to take off with all the money, and it’s all a scam….
And seeing Matthew in a wheelchair makes him more and more uncomfortable.
But mostly, he can’t relate to me anymore…
And I can’t relate to him.
I hung up the phone.
I can’t help but wonder how he came to be the way he is. I don’t understand. These last couple of years have been absolutely inspirational and filled with some amazing stories and memories. It is an amazing feeling to know that we have helped others. We have taken a sad situation, and made some good from it.
I wish he could see that.
I wish he could be proud of me.
I wish he could see why I feel the need to try to help these families.
I wish he wasn’t so disappointed in me.
I wish I knew what to do or how to talk to a grumpy old recluse of a man who once was my whole world…
They filed off the bus, one by one. She stepped off the last step, several other children in tow behind her. Parents were lined up along the sidewalk, anxious to see their child after several days away. (I guess I can no longer use that word, “child.” She is clearly not a child anymore, yet she is not quite a teenager. She is in that “in-between” stage.)
I stood along with the other parents, glancing from kid to parents, most smiling and reaching out to hug each other. Some were tripping along the various sized bags thrown haphazardly along the way. Taking hundreds of sixth graders on a camping trip must be a huge undertaking, as it took multiple buses and adults to corral all of the luggage, back-packs, pillows and blankets, then several more buses to unload all of the tired kids.
I didn’t notice it at first. It wouldn’t be until the next night and into multiple days later that I would replay this scene in my head.
Do you do this?
Do you replay scenes over and over again? Dissecting each moment. Almost like a Sherlock Holmes episode, where I am Sherlock, (played by Benedict Cumberbatch, of course!) and I pause the frame…slowly walking around the scene, looking for clues.
There she is, walking towards me. She isn’t smiling her usual smile. I search her face, looking for signs as to whether she had a good time or had missed me like I had missed her.
I am that mother that gets up in the middle of the night, walking into each bedroom and placing my hand on my child’s chest, just to feel their heart beat. I will kiss their cheeks and breathe them in, just to have that second with them that will calm my fears on nights I can’t sleep. I am that mother that feels as if something is missing when one of my children are away overnight. So, I hadn’t slept well the two nights she was gone. I would lay in bed, feeling as if I was forgetting something.
To see her walking towards me would bring me relief that she was safe and home again. However…this time, as she is coming towards me, there is something different in her eyes and in the way she is carrying herself.
What is it?
She gives me a quick hug and walks over to grab her duffel bag and leave. She waves to a few friends, gives a half smile or a hug to a girl here or there and we jump in the car and leave. I replay this scene over and over for days, trying to place my finger on it.
Did I mention that I am now listening to Brene Brown? Actually, I have listened to two of her books on Audible now and I am convinced we should be best friends! Ok, she can’t have my best friend title. That title is already taken, but I am positive that if we ever met, we would be kindred spirits.
Stick with me, this will all come together by the end!
So, as I am walking on the treadmill a few days later, listening to one of my new best friends talk about the power of vulnerability, it hits me. Not like a “Eureka” kind of moment, but it was pretty close.
You see, my kindred spirit was talking about the armor we put around ourselves as we become adults. How we can’t be vulnerable or risk being hurt as adults, so we arm ourselves and protect ourselves, and in the process we lose our truth. (If you haven’t read the book, “The Power of Vulnerability,” I would highly recommend it. I had several “ah-ha” moments.)
My daughter went on that camping trip as a little eleven year old girl, excited and full of wonder. But when she stepped off that bus, I saw it. It was the first bit of armor she had placed around herself. I don’t know how I know, I just know. Call it “mother’s intuition” or just a hunch, but it is there. My daughter is slowly starting to wrap a shield around herself in order to not be hurt by others. She is learning to hide who she is to fit in, and to not be singled out among her peers. For obvious reasons, this is breaking my heart. I don’t want the world to force her to feel she must hide who she truly is in order to be accepted by others.
Can I remember when my oldest went through this?
No, not specifically. Then again, I wasn’t really as aware at the time. Or maybe I am more in tune with my children now than I was then? I don’t have the answer. I don’t know. But the more I think and dissect this moment, the more I am trying to remember back to other instances. When did my oldest start putting on her armor on? One scene comes to mind…
Mother’s Day – 2016
I was upset. The kind of upset where I am crying. No…not crying…I am sobbing. Gut-wrenching sobs that are shaking my body. I am sitting outside in the back yard, curled up in the chair, legs bent and head resting on my knees. I am crying because my feelings are hurt. I am crying because I feel tired and taken for-granted. I am crying because I am still coping with what it truly means to care for a dying man and balance motherhood at the same time. I am crying because I feel like a failure. And I am crying because of so many reasons, when my oldest comes out. She is crying because she sees me crying. She is reaching for me, trying to give me hug and to hold me. She cries out, “Mommy” in the saddest way.
Do you know what I do?
I do NOT let her comfort me or try to hold me. I push her away. Not violently, but still, I motion for her to go back. I am stuttering, and hiccuping and trying to get her to go inside and not see me this way.
I am ashamed…
I would eventually pull myself together.
For whatever reason, this scene and the scene when my middle daughter got off that bus the other day are linked together. I do even more Sherlock Holmes tactics and I am more ashamed of myself for pushing her away than ever before. How could I have done that? She was reaching out to me, and I didn’t allow it because I thought she would see me as weak. This is more heartbreaking to me now than I can explain. I have considered any sign of weakness in myself as shameful. Why do I allow vulnerability to be acceptable in others, yet I see it as my worst attribute?
I grew up with a mother who cried. She cried often and for various reasons. I hated it….So I stopped crying. In fact, I can count on one hand how many times I cried, beginning from the time my brother died when I was 9 years old to the time I met Matthew. (After his ALS diagnosis, I have lost count…a fact that has bothered me for quite some time.) How did I attribute crying to weakness and vulnerability?
My daughters are looking to me for answers and guidance. I don’t want them to push people away when they are hurt. I don’t want them to try to handle everything by themselves and degrade themselves when they can’t do it perfectly. How did I get to be like this? How do I stop my son from suiting up before he even starts? I don’t have an answer. All I can do is show them that vulnerability is not a bad thing. That feeling emotions is not shameful.
Pausing these scenes and evaluating them, and looking for ways I could have done something better is just one of the ways that I over-analyze and critique myself. I do this over and over again. I have done it for years. Please tell me I am not the only one who does this crazy sort of scene dissection? Where is the balance!? My almost best friend, kindred spirit failed to mention how to find that! How do I teach my children to stay vulnerable but not let the world hurt them? How do I learn how to take my own advice?
Will I ever get to the point in my life where I feel comfortable asking for help and not feel ashamed for it? I think that is one of the hardest parts in dealing with ALS for both the pALS and the caregiver. Learning how to ask for help, but feeling as if I have no right to burden others.
It is what holds me back from writing. I want to write about this experience and be honest about what it truly means to live and care for someone with ALS, yet I feel the need to protect those around us. I know Matthew feels the same way. We both feel like we are burdening those around us if we ask for help. We feel ashamed for asking. Then we feel bitterness and anger for wanting the help but not feeling as if we have the right to ask for it. And we both have the expectation that we should handle this perfectly…
It is a constant flushing toilet bowl of disappointment, and frustration and shame…
I guess playing Sherlock Holmes will be a good pastime in the coming days and weeks. I am going to have to continue analyzing when and where I was when I began layering my armor around myself. And I will have to learn how to take it off and be vulnerable once again. Because that is where to true beauty is.
Damn…I am beginning to hate that word.
What does a typical day look like for us?
Let me paint the picture…
I wish I could say we have a set routine, or some sort of structure on a daily basis, but with three children and multiple meetings and activities, children coming and going in different directions, it is basically a “crazy, chaotic hot mess!” I sometimes laugh at how different Matthew’s life became. ( No, I am not laughing about the ALS part!)
He went from a bachelor, living alone to having a wife and three children practically overnight! I am so incredibly thankful for his patience and his love for my children. And he’s a pretty good sport about all the childhood phases he has witnessed, (or been subjected too!) in the last couple of years!
So in case you were more than just a little curious, here is an example of what it is like to live our life with ALS…
Midnight to 6 am – Matthew wakes me on average 4 – 6 times to be adjusted. Often times I wake up to a muffled sound of “Hey hun…” Followed by a request to help him turn over, or lift the covers, use the restroom, or adjust his trilogy mask, use the remote to adjust the bed up or down, or to scratch in strategic places that could literally be anywhere. (Just let your imagination roam on that last one…) He doesn’t have the strength to lift the covers, let alone scratch even a little anymore, as his wrists are the weakest part of his body at this point.
Rolling him over consists of me sitting up, and shoving on his hip and shoulder to roll him over. He is a big guy and without the strength in his abs or hips, he can no longer roll over. Then his legs get left behind, so I need to re-position his feet.
At least 4 – 5 times a week he will need to use the restroom at sometime during the night. Gone are the days of him sitting up and walking into the bathroom by himself. Now, it is all me. I get up, roll him over so he is laying on his side facing me and then I use a hand held urinal and as he lays there, I hold the container as he goes….I am usually doing this with only one eye open. And yes, I have been peed on more than once. Who knew there was a trick to how a man urinates!
6 am – The kids are in school again, so I set my alarm. I need to be somewhat awake when they are. They are pretty self sufficient these days, but I still like to be up and spend at least a few minutes with each one. On a really good day, I might jump out of bed and hit the gym while everyone is still asleep, and knock one thing off my to-do list. If it was a bad night, I stay in bed scrolling through Facebook until I am forced to move!
I help make lunches, sign papers for the kids that they, of course, forgot about until the last minute, and I make breakfast for the kids who want it. Recently, with all this smoke in the air, I am chauffeuring my oldest more than usual.
However, I have three children in three different schools. So I end up taking two at one time, and find myself in my pajamas and hoping there is no one around to see me! Then I hurry back to get the third one out the door. Three car pool lanes, three chaotic arrivals and departures then hurry home, because I have more than likely left Matthew lying in bed.
9 am – I take Matthew’s trilogy mask off ( a machine that basically breathes for him, similar to a CPAP machine, only this one has air that moves in and out, simulating a breath.) I have to use our adjustable bed to sit him to a 45 degree angle, where I then move his legs over the edge of the bed, and pull him to a sitting position. Then I lower the bed back down, grab our Sit-to-Stand Hoyer lift, and maneuver the legs of the hoyer under the bed. I then wrap the bulky giant strap around his back and under his arms and buckle him in. On a good day, he can lift his legs onto the platform, but on a bad day, I have to lift his legs and position them onto the footrest. I then hit the remote button that lifts him into a standing position, and I wheel him over to his wheelchair, where I then slowly move him into a sitting position.
I am thankful that we are still able to move him around this way. The few times I have used a sling and a hoyer lift, it is a lot of work and much slower than even this process, so for now, I will be happy we are still using this method of transfers.
I then make his breakfast, cut up his food, get his drink with a straw and feed him if he needs it. Or clean up the kitchen and talk to him while he tries to get more food into his mouth than on the floor. We are generally sarcastic and we find things to laugh about throughout the day…
On a shower day, (every other day) we then repeat the process with the sit-to-stand, only this time, I get him from the wheelchair and lower him onto the shower chair, and wheel him into the shower. I scrub his body from head to toe, which isn’t easy when parts can’t move. I usually end up almost as wet as he is. I wheel him back out, and dry him off and attempt to get his shorts on him, use the sit-to-stand to pull him up, pull his shorts all the up and then set him back in the wheelchair. Shower time now takes me at least 75 minutes.
Then I clean and flush his feeding tube, and various other parts of his body, (have you ever cleaned someone else’s ears? EEEWWW!) I then have to pull those horrible compression socks on, (this usually takes me about 5 minutes a leg, however, lately, its been getting a little easier…) and if anyone has had the pleasure of stopping by, he refuses to wear a shirt unless we are going somewhere.
12 pm – If I have errands to run, I usually take this time to do that. Matthew will be either returning emails, or will put his headphones on while he watches his television shows. If our caregiver is here, he or she, (we have gone through over 40 of them now in less than 18 months!) will sit at the kitchen table waiting for us to ask them to do something…not unlike having a sullen teenager in the house. (This is because I refuse to ask someone to do something that I am capable of doing myself, and Matthew refuses to let the caregiver help with showering and bathroom needs, so they sit there waiting for instruction. So it isn’t all the caregiver’s fault! I just wish they could read my mind and do things to stay busy, instead of me flitting around them, while they watch!)
I will usually make Matthew’s lunch. If I don’t, he will either skip lunch completely or order Jimmy Johns or some other horrid fast food to be delivered (and he’s always thoughtful and makes sure to buy lunch for the caregiver as well…) You know, because we can’t ask anyone else to do anything and he is known for his love of fast food, lunch doesn’t get made unless I make it! ( I have, however, learned not to complain or point out his unhealthy eating habits. After all, if you knew you weren’t going to be able to eat solid foods in the near future, wouldn’t you eat whatever you wanted?)
Matthew needs to be stretched and he also gets a massage once a week to help with his muscle cramps as they atrophy. He also goes to physical therapy at the pool. (Mostly because he has a huge crush on his PT!) On those days, he needs to be loaded up and taken to the pool, or to various other doctor’s appts. or meetings that we may have for foundation work.
2:00 pm – I run out to pick up oldest daughter from the new program she is enrolled in.
2:45 pm – I run to the middle school to grab my middle daughter.
3:00 pm – I drive my oldest to her job twenty minutes away
3:45 pm – I pick up my youngest son from elementary school…if I am running late, I then scramble to text mother’s who can pick him up for me, and I pray they can!
5:00 pm Cross country, football practice, volleyball, wrestling, car pools, dinner, homework etc. These are just some of the variables. Somewhere between kid pick up and dinner time, Matthew will require a bathroom visit. This is where the sit-to-stand comes in again. We do that entire process again to get him on the toilet, and of course, we talk about poop every. single. day….
(He also loves to wait for me to put him on the toilet instead of the caregiver!)
7:30 pm – start getting kids calmed down for bed. Teeth brushed, tucking in each one individually can take at least two hours!
9:30 pm- Matthew isn’t tired yet and wants to keep watching one of his shows. I putter around on Facebook, or write. My Kindle hasn’t been holding a charge, so I haven’t been reading nearly as much.
At least one child needs something or wants me to tuck them back in. Afterwards, I make sure the house is locked up.
10:30 pm Matthew asks if I am ready for bed. He usually says it in a way that implies he has been waiting on me! So we brush teeth, use cough assist, and out comes the sit-to-stand one last time. By the end of the day, his legs are so weak, I only have a few seconds to move him from chair to bed. I put his trilogy mask on, and I lift his legs up onto the bed. ( This part is not easy, as he still has tree trunks for legs and they are heavy!)
I usually will scratch him all over because sitting in a chair all day is hard and he is itchy. Some nights, I rub his feet and rotate them to help with the swelling. Then I turn on his side of the electric blanket, plug his wheelchair in to charge and lay down…
11 pm -And this is where I remember I forgot to grab his remote to control the bed….so I get back up…
Lay back down but… he needs his pillows adjusted…So I get back up to do that…
Then he needs his head moved up or down, or legs put up…so I grab the remote to do that,,,
I play on my phone or read on my kindle till I can’t see out of both eyes anymore..and right when I turn the lights out…
He wants to roll over…
Disclaimer- The above description is simply that. A description of how our day goes on most days. It is not a complaint or a “please feel pity for me” type of description. This is simply an example of what our days look like. Some days are busier than others. Some days are better than others.
I am truly thankful for the help that I do get. I am thankful that we have a caregiver, no matter their qualifications. I am thankful that I am still able to chauffeur my children to their activities most of the time, no matter how challenging it is getting three children to all the places they want to be. I couldn’t imagine how difficult it would be to have to work full time and manage all of this everyday. I often look back and wonder how I worked part time and went to school full time on top of all of this!
I also remind myself quite often that we are not at the difficult stages yet. Yes, I know many people have it much more difficult than I do, and I am thankful for the place we are at today. Like a train going full speed ahead, I am fully aware what lies ahead for us. For now, when I am overwhelmed, I try very hard to remember that it is just a day. The next one will look better…or, like my previous post, my perspective will have shifted and the day won’t seem that bad after all!
After all, what’s in a day?!
P.S. I think I have used this picture before..but it is sooo relevant to my life!
Their lives are full of firsts!
First day in middle school..
First time trying something completely new… ( Like opening a locker in the hallway, with kids rushing and screaming all around you! Or being bused to a building full of strangers and hoping you will find a place to fit in!)
With each of these new experiences, they will gain wisdom and insight, and hopefully learn about themselves a little. However, the only way to gain perspective, is to live. Each experience gives us hindsight. And only time and life experiences can help us gain perspective. It cannot be taught, it has to be lived.
I am learning that my perspective with Matthew and our lives with ALS, and who I am and what I am willing to fight for, and my children, and my life, have completely changed, and I think will continue to do so as time goes by. Two weeks ago,for just a small moment, my perspective was,
“Poor me, I am all alone in this.”
I bitched and moaned and wailed about my hardships… (loudly, I might add!)
But then, a little time went by and I gained some perspective.
I learned, (which I have always known, but it is still nice to be reminded from time to time) that no matter what, it could always be worse.
I learned that as new challenges come my way, it makes me stronger. I learned that although this life of mine has not always been easy, each challenge has given me insight and perspective to fight the next battles that have come my way.
Matthew and I have a lot to be thankful for. Sometimes, I forget that. Sometimes, I get so wrapped up in all the expectations and priorities and demands on me, that I forget to simply be in the moment. I need to somehow remember that when I have days like I did a couple of weeks ago, that those days will pass. I will get through it. It is temporary.
I need to be grateful for where we are today. Because whenever I think this particular stage we are at is difficult, I only need to remember what it used to be like, how I felt then and how easily I was overwhelmed at the small changes that were the beginning stages of ALS. Now I know that I will find my new normal and we will make it work somehow. I know in the not too distant future, I will be wishing for things in our life to be as easy as they are right now. Do you know how I know that? Because there was a time I was overwhelmed just having to help Matthew dress and tie his shoes every day. Now, looking back, that part looks so easy now. That is because my perspective has changed on what I find to be difficult and what I find to be easy.
I think my perspective of friendship has also changed. I do have friends. My journey has led me to meet people from all over the country. I have lost touch with some, but others have popped in and out of my life at times when I need them the most. Each friend is unique in the gifts that they can offer me. They have been there to hear me vent, often times on more than one occasion. They have helped, or stepped up when I least expected it, and I need to remember that true friendships are not like those memes on Facebook. They are exactly like the friendships I have today. They are women who are busy with their own lives, and maybe their perspective is to be a good friend by sending a text, or by carpooling my children at the last minute when they can. Maybe its something as simple as standing next to me and laughing while we watch our children at practice. The point is, they are there and my perspective changed recently when I was suddenly more aware of them than ever before.
I can’t help but wonder how my children’s perspectives have changed over the last few days. Did they walk into school, scared, only to walk out and feel empowered for having made it through the day?
My oldest daughter who is 16 years old, has a lot on her shoulders these days. Today, she started her junior year of high school. On this day, she also started a new program that is similar to dual enrollment. She will attend high school for three hours a day, then be bused out to the new technical college for classes. She will be learning about resort and restaurant management, along with various other expectations of what it means to be an adult. She is doing this, at the same time she just started working her very first real paying job. She was more than just nervous today, she was scared. I have been trying especially hard to remind her over these last weeks of summer, that fear is often that which is unknown. Once we walk towards it, it is often less frightening.
My middle daughter began her first day of 6th grade today. She too,was more than just nervous today. She was scared. She remarked about the way her stomach was flipping and flopping. She worried about her clothes and her hair (a newly developing habit that I have never seen before) and she was scared about how she would get to each class on time.
My son started a new grade, with new faces and new expectations. He jumped right in, not really slowing down to take it all in but rushing past with excitement and fearlessness. He has the benefit of not having an all new school still. He is with old friends and comfortable surroundings.
Their perspectives are changing as they experience new things. I can’t help but be a little jealous of their carefree lives. I am still the person they lean on when things don’t go their way. I am still the person they come to when life is not so kind, when plans don’t go accordingly and when they are hurt. And I know that this will not always be the case.
I remember when they were younger. The frantic rush to get them all out the door, the hustle and bustle of small children and work and chaos. My perspective back then was,” I can’t wait for them to be older!”
Now…my perspective is different. They are older. And they need me less and less…and I wish they wouldn’t keep growing older. I wish I had enjoyed them more when they were younger.
These last couple of weeks, the word perspective has floated in and out of my thoughts almost daily. It has also helped me to reflect and gain wisdom. Life needs to be lived, hindsight needs to be learned and perspective needs to be gained if we are ever going to grow and develop.
I can’t even imagine how wise I will be soon…with all this newfound perspective!
I like to think of this moment as if I were stacking cards. Each card is a representation of a person, place or thing or thought, or situation.
When I imagine the setting, I am sitting at a table. A look of determination and focus on my face. I am biting my lip as I stare intently at what I have created. I’ve built the foundation, the bottom of the pile securely, and with each card I set on top, each layer that gets built, the more precarious it becomes. I make sure every little thing around me stays far away from what I am building. This is mine alone to build.
I’m still intent on keeping each card balanced. I am still gingerly taking another card and piling them one on top of another. I am so proud of what I have done. With a bit of a smile, I turn my head ever so slightly, and exhale. I grab one more card, and slowly, with steady hands, I reach to the top to place it to the next layer…they all begin to sway slowly. My hand stills in the air, I feel the air catch in my lungs. I will the cards to stop moving. Maybe if I am completely motionless, the cards will become that way as well.
And just like that, all the pieces crumble…
That is exactly what happened to me yesterday. It wasn’t just one thing that brought it all down. It was a culmination of each card, placed just so…and then the last one was all it took.
I completely lost it.
One tear fell, and then another, and before I knew it, I was sobbing. Gut wrenching sobs. The kind that is ugly, red faced, snot running down my chin kind of sobbing. And I couldn’t control it. I walked as quickly as I could away from everyone, trying to find a place to hide.
I’m embarrassed and ashamed. Now is not the time to have an emotional breakdown. My pile of cards are haphazardly all over, and all I can do is scoop them all up and try again. You see, I began building this wall and trying so hard to build it perfectly. I can’t even describe it in words. It is literally a culmination of everything, and suddenly, every emotion that I try to stomp down, deep inside, came all to the surface at once.
There have been a few times that as I have built this house of cards, a few have fallen. Yet, I have managed to quickly repair and rebuilt. I don’t think about it, I don’t get discouraged. I simply grab a card and keep going. Yet this time, the entire thing has fallen apart and I cannot stop the overwhelming amount of emotions that are flooding through me.
I am angry. I am angry at Matthew’s friends. I don’t want to load my husband up into a van and drag him around to everyone so he can spend five to ten minutes talking with him. I want them to want to come visit him. I want them to realize that it means so much more when they make the effort to come to him, because that effort is getting harder for him to make. I want them to offer to come take him somewhere instead of me being the chauffeur and the one who has to plan around their schedules to accommodate them.
I am unbelievably irritated when I see Facebook posts of his family and how their lives haven’t changed. They still go out on the lake, downtown, or anywhere they want to go. No one asks me if there might be something I might have liked to have done. No one offers to come over so that I might make plans. Or when I find out that family are in town, but have never once made the effort to swing in for even a minute.
I am beyond hurt that I can’t think of one time this summer where anyone asked me if there might be something I might like to do with them. Where are these friends that I supposedly have? Because I see them all out doing their thing, but I certainly never got an invite. Or I get an invite in a future reference, a ” We should do this…” but time goes by and I see them all out doing it, yet I can’t help but wonder what is wrong with me that they never even bothered to see if I was available.
I am bitter when I see other kids getting to have time out on the lake or adventures with family, but my children were not even a thought. I have to plan to do anything with my children. There is no more spontaneity in my life. Everything has to be planned in advance. Heaven forbid we inconvenience anyone else without giving them proper notice. And heaven forbid their other parent actually step up and be a part of their life.
I am irate at the fact that everyone wants to act like they are there for us, but no one has ever asked me what I need. Why should I have to ask? Really? Can’t someone just step up or show up, look around and think, wow, maybe she needs help getting the kids to an activity, or maybe she just needs a break from her reality for a while.
Then, I feel guilty. Guilty for feeling the bitterness and anger. Guilty for hating their ALS-Free lives. This is no one else’s problem, so there is no reason to involve anyone else. I am glad everyone else’s lives have gone on. I don’t want to burden anyone else. I know Matthew doesn’t want to be a burden more than he has to be. But somedays, I don’t want to tell everyone how great we are doing. Somedays, I want to scream that I don’t want to pick his nose one more time that day. I don’t want to be the one rolling him over in bed, or getting him dressed and showered, or doing all the little things I do, day in and day out. I don’t want to talk about poop, or how Matthew won’t eat all day in most cases if we leave the house, in case he needs the restroom. I don’t want to worry about whether today is the day we finally go to the hoyer lift full time or if his cough means he won’t be able to eat or breathe soon.
I spent most of the summer finding my happy in my every day. No matter how mundane. When I would feel upset, I pushed it aside. Don’t get upset, find things I can still be grateful for. And I did a pretty good job of it. Until I look around and wonder how my life got to this. How did I become the sole provider and caregiver for three children and a terminally ill husband? How am I suddenly responsibly for everyone’s happiness and health and well-being? How did I get to be the adult in charge?
I worry. I worry every day. I can’t turn it off either. I worry about how this is effecting my kids. I worry about the events that are out of my control and how they are impacting my children’s lives. I worry I am not doing enough, trying hard enough and that there is only me, and that that will never be enough.
I stress about whether my house is clean enough, or if my garage is organized enough now. I have panic attacks that my car isn’t clean enough, or that if someone stops by, they will find fault in what I am not doing, and they will tell everyone what a failure I am. Then I immediately get angry that I would dare let someone have that kind of control over me.
I wonder when things are going to get really bad. I don’t say “if” I say “when” because that is the reality of our situation. “When” things get bad…”When” Matthew gets sick, who will stay with my children? Who will try to keep their life as normal as possible? There is no one that has built a connection with them or a bond, and I am expected to ask for help from the very people who don’t even make me a consideration.
This is the rabbit hole. This is where the guilt and the shame compile on top of the anger and the bitterness and the jealousy. This is where I want to stop feeling this way, but I can’t. I don’t want to feel alone, but I am. I don’t want want to be angry at others, when I am probably just as responsible for not asking for help. How can I make people understand that asking for help is one of the hardest things I will ever have to do in all of this?
I know tomorrow will be better. That this constant feeling of needing to cry, that I can’t possibly handle one more thing, will be go away. I need to fall down to get back up. It’s just taking me a bit longer than usual to find my spunk again. If it sounds like an angry backlash at those around me, then I suppose it is. However, I also know that these feelings ebb and flow. For that, I am thankful. But I can’t help but wonder…
I wonder what next year looks like…
I wonder, I worry, I think…
I put those cards down, one by one, for each person, each thought, each situation that runs through my mind. I built my house of cards. And with each card, I kept telling myself that I was okay, that I was happy, that I am strong enough to get through this, and that I am enough. I am enough for my children and Matthew. I don’t need anyone else, I can do this…
Until yesterday when my house of cards came crumbling down.
Tomorrow…..tomorrow I will pick up my cards and start building again. I need to be okay with that. I need to let all these emotions go, but some days, its like an additional bag I carry around with me. The only solace I have is when reading the support group posts. Then I realize I am not the only one who feels this way. I am not the only one. I get a glimpse into other peoples’ lives who have it much worse than I do. So, I hang my head in shame, feel guilty yet again for feeling this way and I will make tomorrow a new day.
I will pick up those damn cards and begin rebuilding. The only thing is that I know they will come crashing down again. I just won’t know when…
“Hey bud, let me give you some advice.”
“Matt! I know…you already told me!”
Matthew looks a little disappointed that Kaden won’t listen to him. I lean over, trying to gently remind him that Kaden is just nervous. This is his first time playing tackle football. I look in the rear view mirror. His shoulder pads look entirely too large for his little body. He stares out the window as we drive towards the football field. I look at Matthew. He seems just as nervous as Kaden.
Matthew is beyond patient with my children. Having no children of his own, I know that he is enamored and intrigued by them. He has known them for four years now. He has seen them grow and change. He has seem them at their worst and seen them at their best. He is more supportive and encouraging of them then most fathers I know. And he is beyond excited that Kaden is playing one of his favorite sports. A sport he grew up playing, a sport he helped coach and one he is still passionate about to this day.
We pull up, trying to find parking. There are few options nearby, as its a football field surrounded by homes. Parking consists of anywhere a car can maneuver a spot along the curb.
Matthew unloads from the van and we are trying to find a place for his wheelchair to get over the curb. It’s an older field, so handicapped accessibility wasn’t a well thought-out plan in those days. He takes to the street till he finds a break in the curb. I have to follow Kaden into the shop area to get his helmet adjusted and to find his coach. There are parents everywhere, kids taking to the field. I have no idea where I am going or what I am doing.
It’s chaos. Parents, mostly mothers, who are gabbing, excited to see other moms they haven’t seen since school ended, are standing in their circles. Dads are grabbing their son by the face masks and shaking their heads up and down, side to side. Thankfully, I know one of the men who organizes the league. He pulls my son over, and does the same ritual. Making sure my son has his gear, we head out to find our team in the sea of helmets and pads.
Matthew is stuck.
Not literally, however, he can’t get anywhere on the field. The handicapped area has a three inch drop onto the ground. The sun is hot and this is where I get grumpy. I completely understand that most people take for granted curbs and edges. They have no concept of the difficulties of what it takes to get a wheelchair from point A to point B. I do understand, and sometimes, it gets beyond frustrating. Something so minor, can end up being such a hassle. Thankfully, a friend lives across the street and came over with a plywood board for Matthew to use as a little ramp.
I had every intention of getting my son situated with his coach and then leaving. Two and a half hours seems like a long time to sit and watch nine year olds run drills. However, this is where my bad parenting gets overruled. Matthew is adamant that we sit and watch him practice. I would prefer to leave and come back.
Matthew loves going to see my kids play in their sports, or perform in their activities. Sometimes I think he enjoys it more than I do. Don’t get me wrong. It’s not as if I don’t like going. I adore my children and love doing things with them. I just have three kids. Add all of those things up over time. That’s a lot of activities! Then when you add a husband with a wheelchair, and certain needs, and its a lot to take on some days.
Like taking your son to his first football practice. No big deal. Now add to it that nobody thought about wheelchairs, and it becomes…complicated.
But, as I have learned throughout this journey, it’s easier to go with the flow than it is to get pissed off about the things I can’t control. And things have a way of working themselves out. Sometimes, you just have to have a little faith…
Whether its the friend who happens to have the right size of plywood to make a quick little ramp, or the league coach who helps tuck my son under his wing and helps me out with gear and equipment I know nothing about, knowing I am one of those moms and am completely lost.
Or when a little boy is all sweaty and tired after his first practice and Matthew offers one last tidbit of advice and this time, he listens…
“Ok buddy, the best time to let one rip is while you’re in the huddle! But you can’t laugh, you gotta keep a straight face!”
(I’ll bet you can imagine the glimmer of mischief in that little boy’s eyes and the giggle when he realized he has practice again tomorrow!)