For better or worse, in sickness and in health...I think they should add and you will never be a burden. I guess a lot of people living with ALS feel like they are a burden or they don't want to become a burden...that is what Bert is always worried about, he doesn't want to be a burden, does't want me or the kids to have to worry about taking care of him...he always says "it would be easier..." NOT, at least I don't feel that way. I am not sure exactly how to prove that to him but it's true, I really don't view ALS or any of this as a burden, I view it as a challenge...one that I plan to win as a caregiver anyway.
This blog is for caregivers...ALS warriors can feel free to read as well, maybe you will all start to realize that to the people who love you, you are not a burden at all.
Yea I have bags under my eyes, I am tired and I am a few pounds over weight because ALS makes me stressed, I have more to do in less time, I worry A LOT and my mission is to make sure Bert and my kids are happy and comfortable...whatever, beauty is over rated anyway. I am worried, but I am happy and I am grateful. ALS makes wives, sisters, brothers, parents, kids, friends, co-workers and so on turn into nurses, counselors, therapists occupational and physical, dieticians, scientists, PR people, fundraisers, and just about anything else you can think of to care for whomever it is we love that is living with ALS. I for one and I am sure most caregivers do not look at all these hats we wear as a burden, rather we accept these roles willingly to do the best we can for those we love. We would hope that someone would do the same for us if the roles were reversed.
We are off to OBX for vacation, I had to listen to a grumpy Bert leading up to vacation because it was slightly hectic and my organization skills lacked a little...he felt like a burden because in the past he packed the car, loaded all the beach stuff, bikes and so forth. Well, everything is a learning experience and sometimes in my case you don't learn the first two, three, or four times...or you thrive on procratination and do better under pressure, whichever I did end up gettting everything packed and loaded the roof rack, not without some cursing but we got going. I drove and we got here all in one piece and with everything we needed. Lightning McQueen (the power chair) and Mr. Fredricksen (the walker) arrived in one piece, the bike and trainer arrived without incident and the wheelchair accomodating house is perfect. Sunny skies welcomed us, Arther left just in time for our arrival. I unpacked and we are settled...relaxation for two weeks. Bert was still a little bummed because he said he feels like such a pain...everything takes longer and it's harder. I finally had to put my foot down.
Yes, I still get bitchy when I am stressed and have my period, and when I come home from work to a frat house. I will still nag and yell about how much laundry I have to do...I will be annoyed when the bungie doesn't reach and I have to use the ladder to reach the roof of the van because I am too short. I will fuss and gripe when I drop the computer bag and my purse dumps in the hotel parking lot...thats me, ALS has not changed me and I won't let it...but in no way do I see my husband as a burden, never even thought it, not even once. And Sophia and Alex certainly do not think that, they don't care what they have to do to help, or how much longer things take...they are happy to be with their dad. I made Bert promise me yesterday that he would work hard to not feel like he is a burden in any way...everything that I do for him I am grateful, because that means we are still fighting this together as a team. He reluctantly agreed to try...he better, cause he promised!
Day 1 vacation in the Outer Banks, beautiful and sunny. I woke up jumped out of bed to help Bert to the bathroom. Brewed my can't live without coffee...and layed back down for a minute...I thanked God that we were able to make it here...I felt happy. I had already found the perfect wheelchair ready house with the perfect little deck on the side that fit Bert's bike and trainer. I took that bike apart to fit it in the van and put it back together on that deck, I was proud of myself, I can be pretty handy with those bike tools:) First thing this moring I helped Bert put his contacts in and get his bike gear on, with the help of Mr. Fredricksen he got over to the deck, I put on the bike cleats and with Sophia's help carefully grabbed a leg and flung it over that bike. I clipped his feet in the pedals and put his gloves on and he rode. He rode outside on that deck in the warmth of the sunlight and the breeze from the ocean. I was happy, so happy to have the extra work of getting Bert on that bike...I was sweaty and I felt a thrill of sport as he peddaled outside today! Last summer we were riding together on the road, ALS got in the way, oh well he still has this ride today at the beach outside, and I had a nice run with two little girls (Sophia and her friend Jillian) who make me smile and did great! I haven't had a shower and I still have the bags under my eyes...I am pale and don't have a beach ready body, but I don't care. I am at the beach with my family and my friends and we are going to have a great time.
My husband is not a burden, I love him, in sickness and in health always and forever, ALS will not take that. I am grateful for the extra work because that means he is still with me and we are still living. So for all the caregivers out there who are tired with bags under their eyes and piles of laundry and running on 4 hours sleep...take what comes your way as an opportunity and not a burden. There is always a plan, sometimes it takes a little longer to understand the journey of life, but in the end everything is meant to be ~Kellin Quinn
#alwaysapositive
xoxo ~Jennifer
This blog is for caregivers...ALS warriors can feel free to read as well, maybe you will all start to realize that to the people who love you, you are not a burden at all.
Yea I have bags under my eyes, I am tired and I am a few pounds over weight because ALS makes me stressed, I have more to do in less time, I worry A LOT and my mission is to make sure Bert and my kids are happy and comfortable...whatever, beauty is over rated anyway. I am worried, but I am happy and I am grateful. ALS makes wives, sisters, brothers, parents, kids, friends, co-workers and so on turn into nurses, counselors, therapists occupational and physical, dieticians, scientists, PR people, fundraisers, and just about anything else you can think of to care for whomever it is we love that is living with ALS. I for one and I am sure most caregivers do not look at all these hats we wear as a burden, rather we accept these roles willingly to do the best we can for those we love. We would hope that someone would do the same for us if the roles were reversed.
We are off to OBX for vacation, I had to listen to a grumpy Bert leading up to vacation because it was slightly hectic and my organization skills lacked a little...he felt like a burden because in the past he packed the car, loaded all the beach stuff, bikes and so forth. Well, everything is a learning experience and sometimes in my case you don't learn the first two, three, or four times...or you thrive on procratination and do better under pressure, whichever I did end up gettting everything packed and loaded the roof rack, not without some cursing but we got going. I drove and we got here all in one piece and with everything we needed. Lightning McQueen (the power chair) and Mr. Fredricksen (the walker) arrived in one piece, the bike and trainer arrived without incident and the wheelchair accomodating house is perfect. Sunny skies welcomed us, Arther left just in time for our arrival. I unpacked and we are settled...relaxation for two weeks. Bert was still a little bummed because he said he feels like such a pain...everything takes longer and it's harder. I finally had to put my foot down.
Yes, I still get bitchy when I am stressed and have my period, and when I come home from work to a frat house. I will still nag and yell about how much laundry I have to do...I will be annoyed when the bungie doesn't reach and I have to use the ladder to reach the roof of the van because I am too short. I will fuss and gripe when I drop the computer bag and my purse dumps in the hotel parking lot...thats me, ALS has not changed me and I won't let it...but in no way do I see my husband as a burden, never even thought it, not even once. And Sophia and Alex certainly do not think that, they don't care what they have to do to help, or how much longer things take...they are happy to be with their dad. I made Bert promise me yesterday that he would work hard to not feel like he is a burden in any way...everything that I do for him I am grateful, because that means we are still fighting this together as a team. He reluctantly agreed to try...he better, cause he promised!
Day 1 vacation in the Outer Banks, beautiful and sunny. I woke up jumped out of bed to help Bert to the bathroom. Brewed my can't live without coffee...and layed back down for a minute...I thanked God that we were able to make it here...I felt happy. I had already found the perfect wheelchair ready house with the perfect little deck on the side that fit Bert's bike and trainer. I took that bike apart to fit it in the van and put it back together on that deck, I was proud of myself, I can be pretty handy with those bike tools:) First thing this moring I helped Bert put his contacts in and get his bike gear on, with the help of Mr. Fredricksen he got over to the deck, I put on the bike cleats and with Sophia's help carefully grabbed a leg and flung it over that bike. I clipped his feet in the pedals and put his gloves on and he rode. He rode outside on that deck in the warmth of the sunlight and the breeze from the ocean. I was happy, so happy to have the extra work of getting Bert on that bike...I was sweaty and I felt a thrill of sport as he peddaled outside today! Last summer we were riding together on the road, ALS got in the way, oh well he still has this ride today at the beach outside, and I had a nice run with two little girls (Sophia and her friend Jillian) who make me smile and did great! I haven't had a shower and I still have the bags under my eyes...I am pale and don't have a beach ready body, but I don't care. I am at the beach with my family and my friends and we are going to have a great time.
My husband is not a burden, I love him, in sickness and in health always and forever, ALS will not take that. I am grateful for the extra work because that means he is still with me and we are still living. So for all the caregivers out there who are tired with bags under their eyes and piles of laundry and running on 4 hours sleep...take what comes your way as an opportunity and not a burden. There is always a plan, sometimes it takes a little longer to understand the journey of life, but in the end everything is meant to be ~Kellin Quinn
#alwaysapositive
xoxo ~Jennifer
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