My “Responsibility”

So this past month has been EXHAUSTING. Not only am I trying to keep our kids alive and happy but I am growing another human, which takes a lot out of me, I take care of Tim (minus the 4 hours a day we have caregivers- split into two hours in the morning and two hours in the evening) and on top of all of that… our caregivers quit. Well, the terms they used were “We need to drop Tim’s case because it requires too much skill to do his case.”  The day we were informed they were dropping us was stressful and that fact alone brought on a migraine as I was trying to figure out how we were going to make this work without caregivers. Being pregnant, I cannot receive much pain meds for my migraine pain so I basically had to suck it up.  We believe the “too much skill” refers to the fact that people need to actually work PRETTY much the whole two hours. We feel most of the people who intend to do this job, for anyone, are hoping for some babysitting time. Just the need to feed the person and make sure they don’t hurt themselves, which is usually is sitting and watching tv with their client.
This past company we had no problems with and loved working with them. They were the first company we actually thought treated their employees better than we have seen with other companies and we were happy with the office people and how they worked the scheduling. With this company, there were something called “expert caregivers” which basically were two employees who had to take any dropped shift and if they didn’t they would be unable to keep their title and obtain as many hours. This job title did not factor in the driving distances to each client’s case. Sometimes those cases were in other cities or an hour or more away from their home. One of the experts had to take a month off for family medical leave so there ended up being only on expert caregiver who got worn out very quickly. It turned out the main employees we saw were the experts because not many people wanted a shift where they had to work constantly and be worn out after the shift. (That tells you a lot about the work I had to take on during their absence). This remaining “expert” quit because she could not handle the work load on her own. This was when we received the call that Tim’s case was dropped. We had a caregiver that morning, then received the call and had no coverage that night. It was that fast.

We are now in the fourth week with no caregivers. This morning in bed, Tim informed me that most of the caregivers share the view that his care is my responsibility. Which made me feel great. All I was asking for was 4 hours to give my boys complete attention or catch up on the sleep I missed during the night as I wake up for either boys having nightmares- needing a drink- whatever…, or  Tim needing to pee or needing to be rolled OR when I need to pee frequently due to being pregnant. I am not complaining but I feel a little disappointed in falling short of what I am expected to be doing as a wife/mother/caregiver. I am trying to not let their words bother me but I felt I was going above and beyond to keep our family functioning (I also couldn’t do this without help from Traci- I don’t pretend to do everything), but apparently I was not meeting everyone’s expectations. YAY ME!! I never try and state opinions I have of other people’s situations because I don’t know what they are going through. If I do, I usually put my foot in my mouth soon after because I spoke without thinking. One of the people who had this opinion is in a similar situation as me, a sick spouse but they have teenager kids not really young kids or pregnant and their spouse has the ability to eat and go to the bathroom mainly on their own, heck they can walk! So please watch what you say about other people because I doubt you know their entire story or why they are having problems.

So during this struggle to reinstate a caregiving company this past month, which the VA contracts out and pays for their services, we have experienced some really frustrating roadblocks. Because of the reason for the drop was “Tim’s case requires too much skill” we were given the opportunity for a skilled home nursing care to come in and take over the hours. We had a meeting with them in our home and the representative determined that she would NOT have ever sent a “caregiver” (they don’t require much more for the job other than a background check and drug test) but only a “skilled nurse”. She felt Tim would benefit from 24 hour nurse care. I wasn’t in complete agreement, but that sounded beautiful to me. She was going to tell them that 24 hour care was optimal but at the least she felt he needed 12-16 hours a day.  So she left and took that to the VA. We waited a few days and the VA called us. They said Tim receives the most care hours out of any veteran in their jurisdiction and they are unable to give him more (we predicted this response). They could provide 3 days of 8 hours of coverage- the skilled nurses won’t come for only 2 hours at a time and it costs more to pay for a nurse over a caregiver. This is when they brought up two options which was scary to even talk about and I was mad that we were even talking about it. “If Tim requires that much care we should consider putting him in a nursing home. Somewhere close by so your family could visit.” WHAT!!!?!!? “There is also the option of starting Tim on hospice care, in the home and they will come in every day for a couple hours.” The VA did not feel Tim was at this point. Shoot, I agree!!  If he was at this point, what would it be like when he was trached and using the feeding tube for nourishment?! We received a beautiful HFOT home August 2016 that is built for Tim’s needs. This means he would have better care in his home compared to a nursing facility. I never want to even consider putting Tim in a home. He is a young man as well as a young father. He doesn’t need a nursing home! So we sat on the options for a few days and decided we would do the 8 hours of nursing care 3 days a week then hospice care and I would cover what was not covered. It would be a bit more work on my part, but hey, that is my “responsibility”, right? We were about to call them when we received a call from the VA with another option.
They have been working “tirelessly” on Tim’s case and have found four other companies (3 are repeats that we have already worked with) that are willing to take on Tim’s old hours- 2 hours in the morning to get him out of bed and ready for the day and 2 at night to get him into bed, plus 3 hours during the week for out of home care. We were so happy to hear this. A representative from the VA needed to come out and reassess Tim’s needs to see if the nursing company was exaggerating and we could really accomplish Tim’s needs with simple caregivers or if Tim really does require more care. So we had the meeting with them last Tuesday. They felt caregivers would provide adequate care for Tim and were going to use TWO different companies to cover all the hours for Tim so their wouldn’t be a question of ability to cover Tim’s case. Awesome. We did say we preferred 3 of the companies over the 1 because we have had some issues with the office and their operations with one of the repeats, but please get them here ASAP! That was last Tuesday. We thought we would be receiving a call from the companies to do the initial assessment for Tim’s caseload and I was hoping we would have coverage by the weekend. We got a call yesterday, Monday, from the VA which they told us that they are still working to find coverage for Tim’s case. WHAT!?! We thought there were FOUR companies. We had an old caregiver friend come today to give me a break in the morning, which allowed me the time to write this and have a cup of coffee. I thank God for these friends.
Tim just finished his morning routine so hopefully he will call the VA soon and figure out what is going on.

And that is where we are. There is the option of taking whatever hours we can get then paying out of pocket for the rest of Tim’s care but we hoped we didn’t need to do this. I will try and keep you updated.

 

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Baby Number 3!!

Baby is due January 17th. We do not plan to find out the gender until the baby is born.

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Update on our lives

Recently life has been…. moving forward. We are noticing more decline in Tim. Grove has handled the news of the reality of ALS rather well. He is still his goofy and silly self.  I had the boys pictures taken for Easter, so you should be seeing those soon. My heart still skips a beat when I take a moment and step back and look at our family. They are downright AMAZING to me. Such beautiful little boys with innocence and such a strong heart and mind in my handsome love. We are preparing for the boys birthdays. Grove will be 5 on March 21st. Yes, 5!? I can hardly believe that. I still look at them and think, these are really my kids. I have kids!? Zeke turns 2 on April 24th and we are having combined lego birthday party in-between their actual birthdays- April 7th.
We have been having some issues with Tim’s breathing machine and some scares that left me shaking and Tim saying “well, I figured it was my time.” WHAT?!!! Nope. As Tim declines more we adjust accordingly. I am currently on a trip for caregivers and I had the biggest shock of reality I had a few days prior to the trip. I was on the Caregivers of ALS spouse support group on Facebook where many of us come for help with certain routines or just to vent. Someone was asking about what to expect with the tracheotomy. A dear friend of mine, answered her in a brutal but honest way. “It was really the turning point for me. It was a hard and fast slope into constant care.” I realized that this trip, had it come after Tim needed his tracheotomy would have been nearly impossible and probably a lot more stressful. This is pretty much my last chance to go away alone before the hardest trek of this disease comes. I am trying to soak in each moment and really squeeze every rejuvenating drop out of this weekend.
Tim and I are close to finishing “The Hardest Peace- by Kara Tippets” in our therapy. It has been an eye opening book and has helped us find some footing in raising a family while a parent has a terminal illness. When Tim and I are alone, I am usually in tears and bringing up how I miss the physically able Tim. I catch my self hopelessly lost in a cured Tim. One of my friends who has been a constant support for our family said, “I plead with God when I pray for you. There are so many people watching your journey through ALS and a miracle would be seen by so many people. Can’t that be Tim’s story? A healing miracle?” I am in the reality of this disease and I realize that that will most likely not be how God is glorified through all of this. I can still dream and cry over the unlikely. I tell Tim, we would be the happiest people in the world if we didn’t go through this crap. We have seen the result of what lies ahead and if that was lifted from us, I feel like we would be the most joyful fools for Jesus. However, I also know how life gets the best of us and I am pretty sure our grateful praise would fade and we would auto pilot back into the mundane living. What do I do with that? Stop praying for healing? I am listening to “unashamed love” right now and it is a chorus of “of like a childlike faith and of my honest praise and of my unashamed love… of a holy life and of my sacrifice… worthy. You are worthy.”  Asking myself- what does a childlike faith look like in this situation? Have I seen too much reality of this burden to truly have a childlike faith. Some people confuse a “child like” faith with an unrealistic viewpoint. My child like faith could be a cause of my “honest praise”.  “my sacrifice” looks like letting Tim be fully in God’s hands and holding onto him, our marriage and our family with open hands before the throne. praying they are superglued to my hands but telling God he can give and he can take and still I will sing his praise. For this reason, I want to hang out with Job in heaven first moment that I can. Can I praise God even though my world is caving in and our dreams seem too farfetched? Would that be my honest praise? Is our honest praise only visible in heartache and despair? It gets so hard and life is too distracting! I hope for so much more.
Kara Tippets- in “the hardest peace” talks about how she prays for her husband and her children. Begging for one more day, one more moment, one more memory to store away. In that moment that he will grant her another breath. She doesn’t want her husband to go through the loss of her. But she knows one day that final breath will come and she prays for the merciful and quiet peace in their hearts. Their understanding and not their anger. How beautiful is that? Can that peace be enough? It should be. God promises us many things and I believe he will provide. What will you cling to or turn to in a moment faced with utter bewilderment or shock of what just happened? Can God keep me from falling apart? Keep me functioning for my boys? Be their peace and their comfort that I plan to receive from my Father? Would I be able and willing to step aside and let God reach into their lives through this hard pain? Is this promised from God? Ever since creation, he has planned his peace in our lives. He has promised joy. This doesn’t mean their will be never be sadness, but that a joy for life is underneath it and will be the light at the end of a seemingly long tunnel.

Now I simply need to practice what I preach. CHYEAH…. Yike-a-roos!

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You can’t fill others from an empty cup

Well, I have been needed by no one for almost 4 hours.  My heart aches for my boys, all three, but this is a much needed break. I am en-route to Sea Island, GA (near Savannah) with a caregiver’s retreat sponsored by the Semper Fi Fund. Completely, all expense paid weekend away. They even provided the funds to have a caregiver with Tim for whatever hours we needed (pretty much all of them) and child care costs. Thankfully my parents are coming in to spend the weekend with the boys so that cost is minimal. I say “thankfully” because I knew the little ones would be upset with my leaving but if they can spend the weekend with Grammy and Pappy it makes it a lot less terrible.
The weekend itinerary includes relaxing time on the beach, swimming, massages, yoga, networking, nutritious cooking class, support group.  My weekend will include two nights with “ZZZQuil” taken rather early and spreading across the entire bed. Praise Jesus! This sounds beautiful. I have heard of 6 other women coming along and I believe most of them are ALS caregivers. At the very least they are caregivers for a veteran in some way. But we have all been emailing as we are anticipating this weekend and we have all stated how nice it will be to be with people who are dealing with the same things.

I know many feel like I am deserving of this trip, but it is hard to accept and leave my husband in the hands of other people. He suffers with this crap more than I do. It is a guilt ridden trip but I know I need to take time to take care of myself. This isn’t necessarily a Christian thing but I plan to make this weekend a raw revival in my relationship with God. Renewal in body, mind, emotions and with the main goal of my weekend is refreshing my spiritual life. I desire to spend more time focusing on God but it shamefully ends up on the back burner and God tends to get my leftovers. I am stating this because I expect you all to keep my accountable and see how God and I enjoyed our weekend reconnecting. Kthanks.

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The Talk (part 2) that we have dreaded…

So I have started the previous post talking about a decline I have seen in Tim. Lately, starting around beginning of November I have noticed it takes him much more time to get his arms to the position in the chair to steer and adjust the chair. His breathing/ lungs has become weaker. We have had a few scares lately with his machine alarming to say the circuit was leaking or the hose pops off the front of his mask while he is sleeping and sometimes, trying to find sleep, I don’t realize it. Because of his weak lungs Tim cannot be horizontal without his trilogy (breathing) machine. If it is not forcing air into his lungs or accepting his exhale, he would be basically holding his breath until he gets another breath. Could you imagine having that much trust and faith in a machine and it’s alarms when it isn’t working? If he is not laying down and it is not giving him the air he needs he cannot talk enough to even yell for help.
Shoot, my man is a warrior to deal with all of this and rarely complain. Some times I don’t even realize some of these things until I am blogging and writing out my thoughts during my “me time” while my entire house is sleeping. He is such a great guy. *sigh*
We have been wrestling with the idea of talking to Grove about everything that is going on with Daddy. He knows daddy has ALS, but isn’t fully aware of what that means. I wish we weren’t to this point but it looks like we are. We are being forced into this conversation with the realities of Tim’s decline and the curiosity of Grove and his many questions. If you know Grove, he has some fierce feelings and is a sweet boy. His empathy and sensitivity is high, so this is going to be a tearful crawl explaining through this rough future on our plate.
I have been struggling through planning this and dreading it every step of the way. By being honest and real with our almost five year old I feel as if I am robbing him of his innocence and his carefree childhood. However, he is smart and is catching on.
Christmas Eve, after our church service we were driving home. Wendy was in the front seat the boys in the middle and Tim in the far back. Curiousity won over Grove’s thoughts and he says, “When will Daddy walk again.” “oh Grovie….. [long pause- fighting tears] we don’t know. I know for sure he will be walking when he is in heaven.”  Wendy was sympathizing with me as she could be the only one who could see my tears. “But when will he walk ON EARTH??” *in my head– GAHHH!!! Someone help me! I was ugly crying this point and still driving. “I can’t talk about this and drive safely… Tim? Care to chime in?” …. then I started humming to myself to try and focus on driving so I am not sure how it was officially answered.
This conversation was the one that told me we were needing to really explain some things to Grove and answer his questions, as hard as that may be. He is in play therapy with the main reason being that we knew this reality was coming soon for our little Grove as well as hoping to find a more tolerable and successful approach to his stubborn defiant ways against his parents- silly us, looking for an easy way to figure out how to parent. It was revealed to me that he was ready by the fact that we did not provide a concrete answer for his first question so he went on to clarify his question to maybe get an answer.
In the advice of my dear friends and the many conversations I take part in on support groups , I have decided to plan for this talk. We plan to get a babysitter for Zeke for a few hours and have mommy and daddy time with Grove. Give him our full attention. He will get some quality time and feel how important he is to us and then we will (hopefully) ease this into a discussion on the uncertainty of our future. I have been advised by many other ALS couples who have gone through this conversation on what not to say, how to say things in a way he may understand better and forewarned of the tact and patience it takes to walk your child through this reality. The main thing is to be honest and not over share and freak your kid out t an inconsolable state. We plan to talk about what he knows about ALS, share with him the realities of the disease and what happens to the body- but not too deep, then answer more questions. I feel like when and if he understands what this means, we will talk about why his daddy is so special to all of us and what that means for our time with him. I plan on having many emotions and wearing them on my sleeve for him to know feelings are okay to show and it is natural to have them.  Some advice from other ALS parents were so “ah-ha” moments that I wanted to share some.
“I think it is important yo be open & honest. My dad died unexpectedly when I was 9years old & I felt very left out of everything and very alone.”
“My boys were 11 & 9 when we had that discussion. Our younger one who is emotional and inquisitive asked, ‘will dad die?” My response, ‘I hope not….now when they ask questions they have a better understanding since they see the physical changes with their dad, so the Q&A’s become a lot easier.'”
“The psychologist at our clinic said, never give them more than what they’ve asked about, and always keep it simple. “
“we have been at this for almost 8 years…kids have gone from 4 years old and 9 months old to almost 12 and 8 years old. Daddy has ALS. It’s a disease that makes his muscles weak. There is no cure for it. The doctors don’t know how to fix it yet. Maybe they will some day, but they don’t know how now. When ALS makes peoples breathing muscles very weak then they die. ALS is different in everyone. Some people only live a yeaR. Some people live 10 or 15 years. Daddy will probably not live to be as old as grandma and grandpa. Today his breathing is okay…we will let you know when his breathing gets really weak….BILL (changed name) says he is not dying from ALS, rather living with it….and there’s some truth in that right now…when you go on hospice then you are dying. Now we are living with progressive terminal illness but he’s not dying today, this month, probably not this year.”
“this will be just the first in a series of discussions you will have, so don’t worry if you don’t “cover everything” this time. Go with your gut, but do be honest. My kids’ first question (which we anticipated) was, “Will we catch it?” “
“Most kids will be OK. Sad, but accepting. And they like to be involved, if it’s not scary. Not to compare to your son, but I have a riding student who is 5. She’s been riding with me for 2 years. She’s watched PALS progression. Her mother is a teacher and told her what was going on with PALS. Every week she comes in the house to say hello to him. Over the summer, she watched me feed him through a tube, and now she asks every time to help! & so we help her hold the plunger and push water in! ! It’s not scary because we explained enough to her to allay any fears. Children’s fears usually stem from what they don’t know. So shine the light on the bogeyman just enough to prevent fear!”
“My pALS told our oldest son when he was 5 and just started by saying something like “I have a disease so my muscles don’t work very well anymore” and our son said “yeah I know…”! They pick up on it! Now we let him ask questions and are honest with him. What’s challenging is when he asks questions like why doesn’t God just fix him. We haven’t come out and said it is terminal but mostly because he isn’t near that yet (we hope)… I feel like time for kids is challenging… explaining death is still years away is almost meaningless when a birthday that’s a month away is in his mind still FOREVER away!”
” Our 3 yr old niece asked why uncle John wasn’t using his hands and we told her his muscles don’t work anymore. She asked if they would get better and we said we didn’t think so. That was it. Now she just accepts it.”

We have tried to prepare as best as we can. I figured, it may be a good idea to not be the only ones answering questions. Especially the hard ones that deal with “healing and God”. As I have said in previous posts, I feel like most of my beliefs to my answer of “Why” feel like an excuse or cop-out at the time, even though I know, deep down they are not… it is just beyond my understanding. And I have accepted that… I think. We invited our pastor to come over to join the conversation after we have answered some of the initial questions and probably been thrown some of the harder ones. We know why we believe what we believe and we like to believe we are strong in our faith, but explaining that side of everything to a child may be a bit more than we feel equipped for. We feel having someone who we trust and knows our family fairly well would lighten the load of  the heaviness of it all. I look forward to having someone outside of our situation but knows it well to shed some light on the hope we have and why we have it. I am prayerfully anxious to talk to Grove. I feel this may really open some doors to explaining why we believe what we believe to him… how we couldn’t handle this future without knowing God so intimately. I understand he is only 5 but laying the foundation for everything he will face will make this easier, if at all possible, in the long run.

However, I am aware that with all of this preparation we may answer a question and then he takes it an is done with the conversation because he is only 5. In that case, we will have the pastor stand down and maybe have a talk with him another day after the words have sunk in and he has those hard questions. I feel the sense of flow would be more interrupted and the conversation more awkward if it happens that way… but I want to follow his lead and not force any truths too fast.

We know some of the next steps down in Tim’s health are a bit more drastic and shocking- tube feeding and tracheotomy. With the jokingly idea of telling Grove daddy is part transformer and part robot aside… the truth is a little less humorous and a bit more scary.  We need to prepare him.

So I will write again after the conversation and let you know how it goes. The hardest part is knowing we will need to sit down again in a few years with Zeke.

I may make a Facebook status when we are about to sit down with him so your prayers can be with us and help to prepare our words and his receptive heart.

CUE my BRAVE FACE….

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The Talk… The Struggle… The Loss For Words

This is a going to be a bit of a deeper post. Around Thanksgiving I have begun noticing some more decline in Tim. We have always looked at our struggle (mainly Tim, but I agreed with the mindset) as “he will do what he can until he can’t”. Honestly, this is how we get through each day. We don’t dwell on what we won’t have in our future but mainly just struggle with what is right in front of us. The problem we are experiencing at this moment. Striving to find a way to make a happy memory with the storm cloud looming above us.
However, our therapist– we don’t see her together but we see the same therapist. I’m not sure of the idea of doing this because only she is seeing both sides and we don’t have any joint sessions. I am in therapy and it is nothing new to me. I have had depression since I was 13 and have been seeing a therapist regularly since then. However, Tim has only started since his diagnosis and he didn’t feel it was needed. The VA wanted him to go because what he was facing was indeed terminal and would eventually really affect him mentally. Tim has seen three different therapists since his diagnosis. They only changed because the ones he was seeing moved. But the last one we both had was seeing both of us too and she was very laid back. It was mainly a venting and crying session where we went separately but some times together to talk about what we were facing. She moved to a practice closer to home for herself and we switched to a different therapist in the same location. Tim always gives them the lowdown when he meets them. “I don’t want to be the one doing all the talking. I need to know who you are and what you are thinking. It is a conversation with me not a nod and “uh-huh” kind of session.”  This new therapist took our situation and our beliefs as a challenge and in turn wanted to give us a challenge. She had us both begin reading “the hardest peace” by Kara Tippets. It was a good springboard into the hard topics of dealing with a terminally ill spouse and parent and how to talk about them or maybe even consider some things you will face that you haven’t given much thought to. She challenges us and we actively talk about how our faith fits in.  She is wise in the Christian faith and I enjoy studying deeply, the verses that are brought up and picking them apart with her.  I probably shouldn’t say her name so I will make up one- Tina. Sure.

Tina has said that she feels that we never really were able to learn to be a couple before more was thrown on our plate.  So many people just go through the motions of dating and marriage without really trying to grow together. In her opinion we didn’t know how to hold each other up and keep feeding our relationship to not only encourage each other rather effortlessly, but also to work as a team when different circumstances arise.  It was a bit disheartening to think but I could see where she came to that conclusion. Marriage and any relationship really does take a lot of work. I always saw our marriage as a blind leap of faith and we have just promised to fully commit and not give up and learn as we go. Marriage really is a hope in the promise that they will not give up. Since the diagnosis, we are mainly focused on getting through the day and unfortunately, quality time together as “best friends” rarely happens. We just kind of live through our day simultaneously.  We have our moments of laughter and happiness thrown in randomly but reaching that deeper level of quality time seems too far out of reach when maintaining a home, caregiving and parenting also needing to be handled.  For example, being both the wife and the main caregiver when we go out on a date, I can’t just sit and spend time with Tim as his wife. I also need to feed him, help him use the bathroom, give him his drinks… there is no way I can not be his caregiver especially if we want time alone. My daily struggle to fight for an actual marriage is finding the ability to look pass the caregiving and just see it as I am being a wife that simply LOVES to do EVERYTHING for her husband and not view it in a bitter way or with masked anger. Honestly, I even see it in the most selfish way thinking, “when will this kind act be returned to me?”  I want breaks and I feel selfish and lazy when I take them. I accept help from caregivers and friends but I am embarrassed that I cannot do it on my own. Tim always says “we need help. We have friends for a reason.” But my thoughts always go to “I don’t want to take advantage of our friends help and be ungrateful and be that couple that is overusing the village for themselves and not giving enough back to others.”

I’m getting off track from my main idea for this post. I apologize. I do see this as my venting place so if I ever say something that you find inappropriate or offensive I am sorry… sorta. This is my honest mind and what I think of just typed out. *sidenote*  OOO funny story! To quickly background this bunny trail I studied missions and anthropology in college and had an internship in Uganda for a summer. When I returned the next fall I was taking a seminar course on my internship and I didn’t think much of that class while I was actually doing the internship. Luckily I kept a journal during the whole time. I was supposed to do that for the class and turn it in at the beginning of the year and then talk about my experience throughout the semester and decipher what I learned and how to apply that to my future career. As I said, I did keep a journal- a personal journal. I wasn’t about to rewrite it and sensor our my actual experiences that were ahem… personal. So I turned into my advisor for my college career a journal full of pooping problem stories, girl issues and feelings. HA! He made notes of how “vulnerable I was in my journaling” “really gave me a good view into your thought process”. **BLUSHING** haha!!

So “Tina” says that if she was in my shoes she would be very frustrated since we don’t talk about the elephant in the room.  When we attempt to talk about future plans, we rarely scrape surface then need to do something else to keep the kids entertained or to caregive for a need of Tim’s. I understand that we should talk about what our future, not only finacially and physically will be but also emotionally, mentally and what it means for our relationship are vital to have on the same page. Tim and I are light hearted about it. We can both make dark comments and kind of laugh it off… Maybe this is a defense mechanism but I feel like we are just down to earth. This is half joking yet half serious. Tim says “I could do anything if I put the time in. If I stretch enough and exercise my muscles again I could walk and beat this.” “it is a choice in what I put in my body every day…” So we are aware of the realities of this disease but we also have the belief if who our God is.  But what we struggle with is where is the line? When do you accept the fact that this is how Tim will die? Tina says that we do not discuss this enough and need to spend more time talking about the future we will face. If we don’t end up facing it as anticipated, no loss… but we will face our deaths one day so the conversation needs to be had. The book we are reading is written by Kara, the wife and mother who is dying… so this is from “Tim’s” point of view. She says that she does not worry about her husbands future without her. She knows that she has spent enough time with him that her voice will still be in his head years down the road with whatever decisions he faces about their family. So how much do we rely on that voice to ring through my head after Tim is gone and how much do we discuss the wishes for how our family will carry on after he is no longer with us.
I, half jokingly, share with people that Tim seems to always need to be right. For example, I asked him if he thought our family was complete, like does he feel like we should have another kid. “I can’t make a statement like that. How am I to know?! We could have another… we couldn’t.” That answer covered his butt. If we do have another kid or we don’t he will not be wrong. I was asking from a female point-of-view… meaning “tell me how you FEEL. Get deep in your emotions and be irrational in your thoughts.” So I feel that most of our conversations are around this type of answer. If you know Tim you know he is a slow talker. His defense has always been, “I like to fully think out what I want to say so what I say is useful or meaningful”.
So our challenge is to continue to feed our marriage and to figure out how to talk about stuff we really don’t want to or even feel like we have the time to. “hey, lets choose to be depressed for a while and talk about this crap.” I mean, we don’t avoid it but we don’t dwell on it. Shoot, we don’t have time to. We have two small children who keep us “distracted” and worrying about how to get the food they just smashed into their hair out without the ear piercing screams. Your choice, depression or laughing at the situations are kids find themselves in? I will always choose laughter.

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Caregiver Appreciation Day

Small post on my reflections on this event that I decided to attend. I know it is important for me to be taken care of, but it is more of a nice thought and rarely acted upon.

When Tim was first diagnosed we made sure we were registered with ALSA (ALS association). When we searched for our “second opinion” with a civilian doctor, opposed to the VA treatments and testing, this organization came into the light of where we could find help through it all. After our worst fears (we had some ignorant fears but those fears have taught us how to be a little more fearful) were confirmed, paying out of our pocket for another doctor to tell us the same things didn’t sound like a wise choice, we stopped other appointments that weren’t VA recommended or affiliated. However, ALSA continued to reach out to us. Most of the interactions they have with their families are through their ALS clinics, which we go to an ALS clinic in the VA at Pittsburgh every three months. We are not VERY immersed in the organization but we recognize a good group when we see it. So we continue to accept anyway that they reach out to us and if you are looking for some where to put all that money you have no place for, they are legit and really help families going through this rotten reality.

They sent me a pamphlet on a caregivers day in either Philadelphia or Hershey. As much as I love me some Philly (went to college in the outskirts) I chose the day that was scheduled near Hershey. My sister and her husband live in the area so why not mooch some free childcare …. AHEM- I mean NEPHEW and Aunt Uncle time!! 😛 I really didn’t just drop my kids off, they were excited for us to come and a chance to spoil their nephews. Tim was able to use some of the respite care he is given. The VA pays for the usual caregiving company to give me some “respite” time, 6 hours a day. He has 30 days to use for the year.  This really only allows me to spend one night away from home and that is still including some friends or family we have recruited to be with Tim for a few hours around this time. So I left Tim at home with a new caregiving company  (maybe more on that later- I am sure you are interested especially if you have seen what we have been facing caregiver-wise towards  the end of summer/ fall time) and drove the boys and I the 2 hours down to Harrisburg area.

I had intentions of going with Traci but she had some health issues cancel her plans to join me (check previous update). Since we already reserved her spot but I didn’t have a travel companion, Tim talked one of the former caregivers into going. I believe all he really said the get him to bite the hook was “free pampering for caregivers”. He was one the very diligent caregivers from the previous company but towards the end of our time with that company became more than flakey in his accountability. Surprise Surprise, when it was time to pick him up he didn’t answer. I left him and went with my boys as I guessed it would have played out when Tim told me this caregiver decided to go. “yeah… okay.”

So after the attempt to not go alone failed twice I spent the night with my boys at my sisters and then left in the morning to go to this caregiver day. When I arrived I was looking forward to having alone time, whether I really connected with anyone or not. I checked in and they were serving breakfast. At the check in table they directed me two places- “stop at the next table and let them help you figure out your schedule for the day” and “buffet style breakfast and take it into the next room to eat”. The next table was busy so I decided to get my food first. MISTAKE. Anyway, I took my plate into another room and found a place to sit with three other ladies. The one acted like she knew of me, but I doubted it. It later came to light that she was one of the ALS clinic organizers and thought I was someone else. She recognized my name but realized that we never really met. I shared some of our life with these ladies (two were wife and daughter of their PALS- person/patient with ALS) and were new to the whole thing… like months since diagnosis. They have said that I seemed to handle everything well and probably take on more than I should as my husbands primary caregiver…. with two small children, exchange student and active in the community and church. PSHHH whatevs.
After we ate they asked what I signed up for on my schedule. I said I didn’t yet and they told me to hurry up and do it before the slots were full. So I headed out to the table and the slots for manicures, massages and facials were all full… (they didn’t make this clear that there was a limit when I checked in… grrrr darn me and wanting good food!!) I was a little disappointed but shoot, my “day for me” was being alone and not needed by anyone. I was happy enough to just have some time of any kind.  They started the day with some demonstrations of some equipment. They needed a volunteer to be a “PALS” to do a transfer from a bed to a chair. I kind of laughed to myself as my hand went up thinking, ” my pampering can be me not moving and someone doing everything for me for once…”. I was the only volunteer so yay me! I didn’t know anyone there… but they all were somewhat familiar with each other through going to the same clinic. I was my goofy self and they accepted me right away as I laid there and made silly comments. This transfer really made me feel blessed. I was sad that some people need to transfer their PALS this way. We are so truly blessed to have the ceiling mounted lift for Tim. I take too much for granted.  REALITY CHECK.
Next we separated into male and female and had a “support group”.  I laughed and cried along with others as they introduced themselves and shared their go-to way to find a bit of respite care or time to themselves. Mowing the lawn never seemed so peaceful before this disease. I got some gasps from my fellow ladies as I shared my husband’s age and the fact that we have two young kids. The youngest kid that was represented by caregivers in that room just graduated from high school.  I guess they aren’t around a lot of veterans that were given this diagnosis because that is where the younger patients with ALS are found. Not exclusively but commonly.
As we broke for our different activities someone asked when my massage was. I laughed and kind of said… “ehhh… I was just going to do some other things- like the paint group or jewelry making”. She could read me like a book and said.. “why aren’t you getting one?”  She automatically tried to give me hers. Her husband goes to an ALS specialist for most things like dental cleaning and while he is at his appointment they give caregivers massages. I denied her generous gift. I know how bad all of us caregivers need to be pampered. Well this kind soul moved on and then spent her time allotted massage (while getting it) talking about this poor woman (me) downstairs who was not able to be fit in to take a slot for a massage. She either talked their ear off or they were kind enough to squeeze me in without bumping anyone. It was only 5 minutes and I had two different masseuses giving me a quick pamper at the same time but it was glorious.
After lunch we had some demonstrations for the dire need to help our PALS with range of motion. Tim calls this his “exercise” which is mainly moving everything he can’t to keep the ability of movement there. I felt shame as I realized we do not do this as much as we are told we should. We do it, but just not enough. The demonstrator was describing how not doing it could result in pain in dressing our loved ones. Their arm won’t be able to be lifted as high and it will be more work for us and more pain for our PALS in the long run.
Then, the same demonstrator, she talked about how we, the caregivers suffer just as much but in different ways as those we care for. My jaw dropped. She just spent 20 minutes telling us we needed to move our PALS’s limbs and body to keep them in a type of functioning way…. how we need to be understanding that we don’t sit completely still for a long period of time. If we are sitting, we fidget and shift our weight or move our arms and legs and our loved ones cannot do that.  I looked around at other people nodding to our suffrage. I am honestly not trying to be “holier than thou” but really!?! I am in NO WAY suffering just as much as Tim. I just had tears rolling down my face silently. Yes, I get her point and I am sure she didn’t mean it the way I took it. To her they were probably just words but how they were strung together struck me the wrong way AND how people were in AGREEMENT!?? We really think we can be on the same wavelength as our husbands/wives and parents, what have you…  that suffer with this? I could keep harping on this but I was just so shocked and upset by that small moment. I don’t need this pampering! Tim is dealing with so much more and I know that he wants me to be comforted and relaxed at times but I … I just will stop rambling. GAH! WOW.

There were some other events throughout the day but that was the gist of it. There was a door prize raffle thing at the end and I won a $50 gift certificate to the spa that provided the massages. So, I got my massage after all. It is in Hershey so I will need to plan another trip. I also won a necklace and matching earrings.  I guess that was pretty much all of the main take aways I had from it. They wanted to make it an annual thing so we will see if I go again next year.

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Happy New Year!

I don’t really find much time to sit down and write updates often. Lately, I have been feeling like there is a lot to update so I am trying to find the time to fully catch everyone up.
I attended an ALS caregiver day in Hershey on Veteran’s day. That is right, I left my veteran on veteran’s day to get a break. I felt pretty guilty. However, I have received many invitations to things for ALS association and rarely go. This one has been in the works for a while and I was going to go with our caregiver/friend Traci and then she was diagnosed with breast cancer mid October (I believe) and decided she would not be well enough to go. Sidenote: if you are interested in checking out her blog as she walks through cancer treatment the link is: https://theanchorofhope.weebly.com  We count down the days until she can return to work. We very much miss her.
Because of the diagnosis and the unpredictability of side effects she was unable to go with me. We were both looking forward to spending time together. Since we heard of Traci’s own battle we have been struggling at home without her help. We of course pray for her recovery and fast healing. Many of our friends that have been helping us keep our lives livable have described Traci’s role in our family perfectly: She wears many hats for your family. One person alone could not do everything she does for you guys. We have since hired a temporary replacement who is well aware of her plan to return.

This Christmas was the second one we have spent in our handicap accessible home given to us from Homes For Our Troops (HFOT). We continually talk about how blessed we are to have the adaptations we do have in this home. It really does make traveling a bit more of a burden because we cannot take most of our luxuries for caregiving with us. This is probably the last Christmas that we will do much traveling. Both of our families have recognized the struggle we face to get Tim anywhere that is more than an hour from home. We LOVE spending time with both of our families but when we are away from home we can only really manage to do one night away and two days. I am very grateful for their willingness to make the trip to us next year, even if it is only for a day.

The New Year finds us facing some decline that is a little more visible in the future. As we manage through each day, we have noticed Tim moving a bit slower and unable to control his powerchair with much confidence. There is an adaptation where we can add on a “caregivers control” to his chair which will allow someone else to move his chair from a better angle than his personal joystick. I haven’t looked into what this entails but we do have the means to put it on ourselves and have the equipment among our things.

The outpouring of love that everyone continues to show us is very humbling.  Conversations I have had with many close friends recently go like so (we have six pregnancies in our church and I am rather close with all of these ladies. MY second pregnancy was grueling and I strike up conversation really curious of how theirs is going):
Me- “how have you been?”
Them- “I feel like I can never complain when I see what you have to do.”

First of all, no matter who you are friends with don’t compare. Everyone is a warrior in my book. We all struggle with life. It is never all fun and if you make it seem like you are always having your shit together, I feel like I can never really know you. I will tell you my struggles so much that you may fear to ask again. (Isn’t that right, Sarah?)
Random side rant over! I love you all even if you think I am a saint. If this is you, apparently we need some time to catch up and I will proudly show you my ugly.

Speaking of, tonight I have had a little bit too much of caring for everyone else and not enough of myself that I had a bit of a breakdown. Poor Tim was just about asleep and I burst in our room, “Are you sleeping? Almost? Good… let me complain about all of this crap that I can hand myself, yet refuse to in order to stay ‘considerate of others’  leave you with the feeling that you can do nothing to help and then go about what I was doing in tears.” Poor Tim, right? Well I am of the crazy female gender. He chose to marry one of us, right? He should’ve seen it coming.  Shoot son, he has it coming at him every day- this is a normal encounter with his wife. BAHhaha suckaaaa!

I decided to try to not be as fat anymore (this was an attempt to practice what I preach and “keep my pitcher full because you cannot pour into someone else’s cup without having something in yours” well known motto of caregiving) and started Couch to 5k. HA! No one told me that  you are not really supposed to run EVERY day.  Honestly, the workouts are “week one: day one through day seven” Does anyone see that and think, I’ll take some days of rest between each one. Well, trying to run 3 days in a row caused me a strain in my knee muscle and I couldn’t run let alone walk without a painful limp for about 3 weeks now. I am finally finding some relief from the pain and Tim has let his “c’mon gimp! You’re going to slow” insults die down… a bit.

I am all over on my updates for you all. Sorry, lets rewind. Back in November we welcomed Wendy Diaz (turned 18 the one week anniversary of being with us) into our family as an exchange student to the local high school. She is from Peru and fits in with the family very well. Her and Grove have the typical little brother big sister relationship down like they have been doing it for years. More on that later, just a little heads up incase we start on that part of our lives again.

Yes, we take this all on because we are dumb to try and handle everything we are dealt with and yet we decide… lets see if we can still stay above water by adding some more responsibility to our shoulders. That may be counterintuitive to open our time with Wendy into our blog. Because, it is no way another burden, just more to figure out. Our main thought in taking in an exchange student was that our traveling as a family is probably coming to a close for a while. Might as well bring the cultural experiences to us.

GAH!!! my kids are screaming because they woke each other up. Duty calls. BRB

Well, that was a lot painless than I expected.

Is anyone even reading this far into this post, because I definitely lost some interest and feel like this is ramble time with Robyn.

I have a bit more deep insight to our lives and how we are mentally and emotionally handling it all but I should just update with the light hearted stuff for now.

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Summer Blog

It has been a long time since I have updated our blog. Maybe a year? I don’t remember writing much after Zeke was born. As you can imagine, life with two little ones and the beast of ALS has been keeping my times spent elsewhere. We have been in our handicap accessible home for about 9 months. It has been a life send and we live each day with a bit more peace because of the amenities we have here. It has made traveling or vacationing a bit farther from reach because there is no place we will have all the adaptations we have at home. When we go away form our home, even a night, my irritability and my stress levels seem like a volcano.  The reason for my return to writing on our blog is my recent and current struggle that just cannot be handled easily.

I have been venting to the many ALS support pages that I am a part of on Facebook, but I feel weird not keeping my close friends and family updated with some struggles with this disease. Once Tim was diagnosed, well even before,  I have made some facebook status updates on our journey for pinpointing what was going on with Tim that were rather vague and cryptic. I will always remember Tim telling me, “don’t be cryptic. This is something big we are dealing with and our friends and family should be aware of what we are shouldering.” Ever since then, that is always in the back of my mind when I feel like letting my frustrations out in the inter web to find some encouragement or just to get it off of my chest.

Our journey with ALS as a young family has been… many adjectives… painful, inconvenient, grief-filled, sorrowful, joyous, eye-opening…. It has opened many doors for difficult conversations to be had or experienced. We have walked through some of the painful planning for what we have in our near future, but there is always more to prepare. How do you plan for the pain to come while trying to enjoy the moments you have? When do you take the time to make memories to look back on (journaling, video recording, writing a blog post, voice recording, writing letters) instead of spending time with your family just enjoying the moment without trying to preserve every detail for when you can’t remember the feel of someones touch or the sound of their laughter or even the look in their eyes that says more than our words could ever describe?

My heart has been heavy this past week. The caregivers and I have noticed Tim tending to be a bit more tired and exhausted. He has even said to me, rather downhearted, “I’m just tired.” You tend to hear people who are fighting for life say this towards the end. While I don’t think we are “near the end”, it caught me off guard and sent a flood of emotions through every corner of my soul. We have talked about the measures that Tim wants taken and when they need to be taken. To save a lot of description, he wants every measure taken to stay alive. As hard as this was to swallow, we talked about it and he sees it as a way to take care of us until he can no longer do anything else. However, I never thought through the “exhausted of fighting” stage. He has to work ten times as hard as we do to do such small things. He can’t even move much of his body but every time he can muster the strength to do anything it takes a lot of effort- leaving him rather exhausted.  Will this exhaustion be something that changes our minds on what the end will look like? How could I have not even consider this? Tim has been SO strong through all of this. He has an amazing attitude and lives with more patience than I could ever give, especially in his circumstance. He continually teaches me how vital patience in every aspect of life is.

ALS has honestly not broken my spirit yet, but I feel on the verge of my breaking point. I rarely get time to just sit and think or pray. When I mow the lawn, there are not many distractions and I tend to do a lot of praying or just thinking. Today I mowed the lawn. I was bawling most of the time and for the first time in our journey, actually asked God, “why?”.
(Written June 17ish)
Below is continued as of September 9th.
I think I was able to stand my ground of not being mad at God for this situation for several reasons and I feel that I am still at that point. However, I am worried that I am going to take my anger out on God when I see my husband actually suffering and our family actually suffering. That is when the question of “why God?” doesn’t sound so wrong. Don’t get me wrong we do struggle with this daily. Grove has even started making statements like, “Why can’t daddy run and play with me?” “Why does he have to be in a chair?” Heart-wrenching much? I have my moments when I see dad’s playing with their kids that my heart goes into my stomach or I see an older father and son sharing a moment.  But it isn’t to the point of physical pain and unbearable heartbreak, Being a part of the ALS support groups shows me that this is part of ALS. Your heart will be broken.  That rain cloud over your head WILL burst and drench you…

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I feel “shitty”! Oh so “shitty”!

…. I feel shitty and bitty and contrite!!

Yes. That was to the tune of “I feel pretty”

I need to rant. You are welcome to skip over this.

 
Nothing makes me feel more “shitty” (yes I am using THEE word because that is the degree of poop that I feel) then when someone, especially any of our helpers/caregivers, say that they are feeling unappreciated or unnoticed for all they do for us.
FYI: this wasn’t from any recent happenings, just something I want to say before it comes up and I have to rant and make that person feel worse.
I REALLY do want to know if someone feels unappreciated by us or unnoticed, because I want to right our wrong. We are staying a happy and mainly healthy family because of the support we receive and the friends that lend a hand. But that being said, I hope I say “thank you” enough and seem grateful because I could NOT do this without those that we see on a daily/weekly basis. I often think to myself, “Single parents are superhuman.” I am sure they feel like they can’t screw up anymore but my admiration for you has been increasing daily.
Some of the “bad days” a part of me deep down just wishes I could do it all and not need to involve other people in our mess and worry about their feelings of self-worth in the process.
No matter how I word this it sounds like I am either mad that I have to uphold the feelings of our caregivers or looking for sympathy and encouragement that “I am in the right”. Neither is the case. Nor am I looking for someone to solve the “problem”. I just want to get this out. I hate that others can take whatever mood we are in when they are around as a reflection of how we feel about them. I am never ungrateful for anyone who goes out of their way to help us stay sane. 
Usually, only our family sees every side of our personalities, but since these wonderful people are in our every day and our house is a stomping ground for so many throughout the day, they get both our Jekyll and our Hyde.

All of that being said, I also ask for you to cut me a break (that I don’t really believe I deserve) because I have a lot on my plate and I am just assuming and hoping that you know that I am grateful. If I could sit down and have a moment to myself to send a “thank you” card or get my colicky 3 month old to hush up so I can make a phone call to express my thanks I would… but my “me/mom time”is me staying up until 2am every night in order to have some time to get SOMETHING done or some time alone. 

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*drops.the.mic*
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Expedition girl

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Unshakable Hope

“May the God of hope fill you with all joy and peace in believing, so that you will abound in hope by the power of the Holy Spirit.” (Romans 15:13)