Old 06-17-2016, 02:05 PM #1 (permalink)
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Default Frustrations

I never get frustrated with my husband. Seriously, I don't. But I do get frustrated with life. There is just so much piling up on me. Before ALS, we have always had a very 50/50 relationship. We both work full time jobs, I cook, he does dishes, I clean, I grocery shop, he pays bills, he takes care of everything outside, he takes care of the chickens, we both change diapers, we both tuck our kids in, we alternate on bathtimes, we even alternated getting up on the mornings when the babies were babies. I drop the kids off in the mornings, he picks them up in the afternoons. This has always worked for us. I always had him to help me and he has always had me to help him. Now, I cant ever seem to get caught up.

He is still walking, showering himself, driving. But can not walk well, and can no longer lift our daughter or connect her car seat straps. There is not much around the house he can do anymore at all. He wants so bad to, but he just cant. I find myself changing water filters, cleaning the chicken coup, climbing in the attic, heavy lifting, plus all the things in the list above that we used to share. And I do it all with a smile on face, because I know...I know its hurting him so immensely not to be able to do it himself.

Sometimes when I am running around like a chicken with its head cut off and the kids are yelling mom, mommy, mom, mom, mommy, mommy, mommy, MOMMY....I swear I just want to stop and cry. How do you handle it all?!?

How do you let out your frustrations? Again, I am not frustrated with him at all. All that I am complaining to you about, I do at home with a smile on my face, because it would make him so sad to know how stressed out I am and I don't ever want him to think this is his fault. Because it is NOT, it is ALS's fault. I love this man of mine so damn much. I want him to know that as he progresses, I can handle it and he will never be a burden to me. I want to show him how competent I am...but I am doubting myself, can I handle all of this without forgetting to feed the animals or missing the mortgage payment or signing the report cards or forgetting to brush my teeth? And when do I find the time to have fun with my children who know but don't fully understand why life has changed so much in the past 6 months? They don't deserve to lose their dad to ALS and their mom to stress....and by that I mean, my laughing with them, playing games, running in the rain, 4 wheeler rides, baking together, careless days and sporadic moments. Will they ever have their old mom back?

I cant let them see my frustrations with life, I have to smile through it, because I don't want my wonderful husband who is already mourning the amazing father he used to be, to think for a second that he is the cause of this. How do you handle this?!!? How do you get your frustrations out? Besides lots of wine

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Old 06-17-2016, 03:30 PM #2 (permalink)
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Default Re: Frustrations

You've just written all my future fears. My husband also do EVERYTHING 50/50, we both work full time jobs too. Our kids are 1 and 4. At this moment he is still able to do all that he did (just diagnosed recently), but I know that this will come to an end. Honestly, I wonder how I'm going to do it all I have a lot of fear that I will disappoint my husband, my children, myself. I've been so thankful to have such a loving supportive husband who helps equally. Life is already hard with both of us capable. I have no idea how much HARDER it will be when he is unable. Am I enough? Am I capable? I'd like to think so, but it seems an overwhelming shift that will be our "new" normal to have to adjust too. I'm nervous for this day to come. All I can say is try to give yourself a breather if only for a few minutes each day. Your only 1 person and don't be too hard on yourself. It's completely normal and acceptable to mourn the losses of how it was previously. I find myself already mourning the loss of our future.

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Old 06-17-2016, 04:41 PM #3 (permalink)
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Default Re: Frustrations

I think you'll be able to do it all because you have to. There's just no other choice. You'll figure it out because there's no other way. That's what I'm hoping for.
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Old 06-17-2016, 08:49 PM #4 (permalink)
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Default Re: Frustrations

I feel there are always choices in everything in life.

It really empowered me as a CALS to know every single day that I chose to have my husband at home with me caring for him.

The grieving of all the losses, including our lifestyle and relationship of sharing things is so hard.
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Old 06-17-2016, 10:49 PM #5 (permalink)
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Default Re: Frustrations

I'm sorry to say it will get harder, and you will take on being a mommy to your children as well as mommy to an adult infant. My husband is about 185lbs, and completely dependent on me. I unfortunately had to leave my job last spring b/c he needed so much help. It has been 2 yrs as of last Friday since diagnosis. I cannot believe how fast it has gone, and what this ALS has taken from him, from us. It will be hard but you have to live each day as a new day. Don't worry about the future or you will drive yourself crazy. Yes sometimes we skip teeth brushing, or have ice cream from lunch with the kids cause it's easy. Or we can't stay at the park too long for daddy can't be alone for very long. But you will find some time to make with the kids. If u can find help so you can get breaks, take it. Good luck to you, and I'm sorry you had to join us on here.
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Old 06-18-2016, 12:01 AM #6 (permalink)
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Default Re: Frustrations

Just to clarify, when I say there is no other choice, I'm not even talking about caring for your partner, I'm talking about the parent stuff and the daily stuff that you can and will do. I like Tillies idea that caring for your partner is a conscious choice- I'm sure that makes a difference when things seem impossible.
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Old 06-18-2016, 02:11 AM #7 (permalink)
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Default Re: Frustrations

Ah but people dump children as well as partners all the time, every day! So there is always a choice. You can even choose to be a lousy parent or partner. Or you can choose to do all these things, and to do them to the best of your ability.

Choosing to take all the kinds of help offered is a great choice to make as we too often neglect ourselves and then feel so overwhelmed.

I like to find what choices I do have, what things can I change, even if they are little. This opens up ways to be more empowered than feeling that we simply have to go on no matter how heavy the load.

I remember when I let a friend start shopping for me. It was amazing how something that was fairly small to her, empowered me quite a lot as I could just type a list into an email, and then next day she brought it to the door, then I transferred the money to her account online. Each little thing allowed me to be freer to care for Chris, or even have a tiny bit of extra time to go a little more slowly, or to stop for 10 minutes for a break for myself.

Kona, is there some way you can organise ways for your kids to get a bit of a break - play dates, sleep overs, relatives that can take them to some events? Any little things can give you that little break to do what you need as a CALS, and give them something they can come home and tell you about?

Again, sometimes any little thing can bring a bit of relief, and even help spark other ways of relieving some of this.

Sadly we can't give your husband back functionality to let you both share doing everything, but it may be good if some help with the kids gave you both a little time to just be together.
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Old 06-19-2016, 09:27 AM #8 (permalink)
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Default Re: Frustrations

some things you will need to let go. it is hard--some things you let go will be things you would like to do. if you are running around like a chicken with your head cut off that will put more guilt on him and you don't want that. save your energy for the fun stuff with the kids, get rid of the chickens. ask friends to bring the kids home from school or pick them up in the morning--not that big of a deal and makes your friends feel helpful and lets you relax a bit.

none of this is easy--and it doesn't get easier. hang in there and put on a brave front for the husband!
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Old 06-19-2016, 07:17 PM #9 (permalink)
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Default Re: Frustrations

Tillie and Barbie hit one of the nails square on the head: you need to simplify. This is not easy, I soooo understand. My husband is a kingdom builder, and getting rid of anything is, to him, taking a backward step. So, I do what I can. Simply housekeeping by getting rid of or putting away anything you don't use regularly or particularly love to see. Get rid of the chickens, find someone to shop for you (great idea, Tillie!), let someone take your car in for servicing (gotta love my brother-in-law and his wife). All my towels are now white, so they can be washed together (we go through a lot showering him). All my sheets are white for the same reason (he gets new ones every day).

I've had my hair cut short--and that saves me a ton of time.

Enlist the kids with helping dad as early as possible. They a re remarkable adaptable and will benefit from being part of his caregiving team, even if it's just picking things up for him that he can't reach.

I haen't had to take over the bills, etc, yet. I dread that. I have learned, however, that I can drive a dirty car and that the house does not have to look perfect when people come over. In fact, visitors now cook for us. They are happy to and I greatly appreciate it.

You must find ways to adjust.

Personally, I'm getting tired of rearranging things (adjustment is constant ), but perhaps this is my curse for all the years of moving furniture when hubby didn't want me to...

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Old 06-19-2016, 07:21 PM #10 (permalink)
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Default Re: Frustrations

It just occurred to me that I was a single parent with two wild little boys when Matt swept me off my feet and made life so much easier. Now I have one large man to care for who can no longer run away from me (and if he tries I'll disconnect the motor in his PWC) and those boys as well as his girls are helping me care for him (when they can get here).
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Old 06-19-2016, 08:26 PM #11 (permalink)
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Default Re: Frustrations

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I have one large man to care for who can no longer run away from me (and if he tries I'll disconnect the motor in his PWC)
I used to be able to outrun my wife.
I told her that my PWC can now outrun her.

Her response? "How about on the stairs?"

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Old 06-21-2016, 10:10 AM #12 (permalink)
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Default Re: Frustrations

Thank you for all of your response, this shit sucks. You guys help though. I do need to let go. We have a huge support system, as we have both grown up in the same city our entire lives and all of our families are here with us. I am starting to recognize in myself that I am a control freak, I am sure my son could have told me that a long time ago though ;0 So yes, I need to learn to let go of some things, let people help me (I think people are stopping to offer since I decline so much) thank you for saying it in a way to help me see this. At the end of the day all I want is to spend every second I can with Chad.

We have to much stuff. That's another problem. So maybe I need to get rid of the materialist things as well. I don't know how to take care of the hot rod or the jet skis or camper, or any of his RC toys....but at the same time I want our children to have every bit of it when they get older, so its a catch 22. They all require maintenance though. Ugh. One day at a time is what I keep repeating over and over, we will figure it all out one day at a time.
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Old 07-10-2016, 11:07 PM #13 (permalink)
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Default Re: Frustrations

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I'm sorry to say it will get harder, and you will take on being a mommy to your children as well as mommy to an adult infant. My husband is about 185lbs, and completely dependent on me. I unfortunately had to leave my job last spring b/c he needed so much help. It has been 2 yrs as of last Friday since diagnosis. I cannot believe how fast it has gone, and what this ALS has taken from him, from us. It will be hard but you have to live each day as a new day. Don't worry about the future or you will drive yourself crazy. Yes sometimes we skip teeth brushing, or have ice cream from lunch with the kids cause it's easy. Or we can't stay at the park too long for daddy can't be alone for very long. But you will find some time to make with the kids. If u can find help so you can get breaks, take it. Good luck to you, and I'm sorry you had to join us on here.
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Old 07-11-2016, 05:17 AM #14 (permalink)
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All of you are amazing, I admire your love and help. My wife and I our best friends, we are coming up on our second anniversary but have been together 6 years. We have always shared everything. We where in the same line of work (before I was forced on disability) we had similar hobbies and truly enjoy being together. We share household responsibilities and have continued to adjust them as my physical condition deteriorates.

Like your husband it hurts to sit and watch my wife have to do things for me and the house that I once did. What hurts more is what I know she is going through but that does not get talked about. I never wanted this life for her. Emotionally it is eating her up. For her, it is not all the physical duties, but the thoughts of being alone in the future and feeling alone now as she truly runs things with very little help. I don't know how to make it better. I am a person who can get very frustrated when I cant fix things and with ALS there is no fixing anything.

There are many practical things that can help. I now shop for groceries online and then she just goes to the parking lot of the store calls a phone number and they bring out the groceries, most US store chains offer this. I pay all the bills through online checking. I have my son due some small things that I see help my wife. Chickens are so easy to take care of that maybe the kids can take over that chore while learning a new responsibility.

I am not in your shoes, but do watch as my wife is. This life is not easy by any stretch of the imagination on anyone, least of all you amazing people who have put your life on hold to take care of us. I often refer to myself as a breathing burden, but a burden that is loved and cared for. I hope you can find ease and comfort in each day as you work through the frustrations of this nightmare.
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Old 07-11-2016, 05:47 AM #15 (permalink)
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Man do I sound like a chick! Someone give me a testosterone shot before my man badge gets removed..
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