Trying to balance kids school, husbands care and work and failing

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hollyt

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Mar 28, 2011
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Loved one DX
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CA
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El Dorado Hills
My husband was diagnosed over 3 1/2 years ago. Prior to diagnosis he was a very fit, active man who could multi-task with the best of them. Now he sits in his office most days with one finger that still works to type with...he's kept himself busy creating on-line companies his latest (Disabilityreports) a .org company. I love that he's creative and keeps busy and channels himself into projects that are meaningul and helpful to others but now that the one finger is starting to go I think we're headed for trouble.

I work from home and we've hired a caregiver to come from 10-4 to help make sure he gets a healthy lunch and shower and can get some stretching in and a bit of a workout on his bike. Although I work from home I am still working during working hours, I do come down to enjoy lunch together and make sure we start the day with our coffee and some breakfast together.

We have a 10 year old and a 15 year old and it seems so darn difficult balancing everyone's needs. He feels like he's wasting away in his office because he doesn't get out much......but again, neither do I. He's angry and feeling neglected, much like the kids, and I'm struggling to feel like I can make a difference anymore...how are the rest of you balancing your time?

Holly
 
If you don't have a wheelchair accessible vehicle, rent one for a day every once in a while so you and your family can go on an outing - nice to get out for all of you. It might do you all some good! Yasmin.
 
I am caring for my husband at home,he is no longer able to work.I also work from home. I run a home daycare...My own 3 sons are at college..and its getting incresing more difficult as time goes on.I am extremly organized but things pop up.my husband has a bad day..I am running back and firth but feel quilty when i take the kids out to play(i use a baby monitor for my husband) He will not allow any outside help so its me to do it all..I dont know about you but sleep is pretty wellno exixtant..he is in pain and uncomfortable be are in the basement so he can use his recliner as he is more prone to choking on mucus whele laying down..im on the couch..Honestly i dont know how im doing it..Ill chock it up to determination and lots of coffee!
 
Hi Holly,
If your husband is still speaking, check into some speech to text softwares. If not there are some eyegaze machines as well. Yasmin is right about getting out more. I don't know your support system, but lots of helping hands is a great site for organizing people to pick up some of your jobs so you can spend more time with the kids and hubby. I just retired from teaching as Rog's care is requiring me full time and my daughter wants help caring for our granddaughter. We will make it work somehow. I understand the feeling of being overwhelmed. I do get irritated with those that tell me to make time for myself but do nothing to help make that happen. Others will have some great suggestions that I hope you can use!

Jen
 
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Hi Holly, it sounds like you are doing lots of things right to make your situation work. coffee and breakfast together, lunch together, a daytime caregiver and evenings together. I dont work at home but I have my own business. my husband and I added msn messanger to our day--we IM all the time and can video chat too. My husband is a computer geek--he uses smart nav and can type faster now than pre ALS. my husband has no use of his arms or hands and is in a PWC but he as set up an amazing computer system and has learned all sorts of cool things like photoshop and video editing.

I understand how pulled you must feel--the kids have needs that you probably don't feel you are meeting and your husband feels isolated and if you are like most of us here you feel like all you do is work work work.

My advise is for you to try not to feel guilty--you are not going to be able to be all to everyone. I always feel worst about my kids and think they get short changed the most. I think having teens is tough under normal circumstances but add a dad with ALS in the mix and it is horrible. All you can do is do your best and it probably won't be enough :). One thing we try to do alot is go to the movies as a family. it is easy for my husband and there are so many good movies out in the summer that the kids want to see that they don't mind going with the old parents. a saturday or sunday matinee is a fun!
 
I know it may not feel like it but sounds like you have a pretty good routine. I know it's painful to hear someone say they feel neglected when you already feel like you've worn yourself thin trying to make everyone happy.
My husband is very techie (?!) too and also spends a good deal of his time fixing computers for others. He can't do anything physically but is great with software so he enjoys helping people with that. But using a mouse is getting increasingly harder so I too worry about what happens when he can't do that anymore.
I understand the feeling though - I feel like I half-a** everything - being a caregiver, a mom, working ( I work from home as well) just enough to get by but always feeling guilty that I'm not doing everything how I would want to - but honestly, I don't think that's possible for any one person to be able to do what we are all trying to do. There just aren't enough hours in the day.

Definitely agree with the others about trying to get out. I know it's exhausting to even thinking about getting them out the door sometimes (not sure how limited your husband is, but mine is in a pwc and no real use of arms or legs) so just the thought sometimes get me tired but I force myself to do it and it helps so much. It doesn't happen often - maybe once or twice a month , usually to the beach, but I'm noticing how much it helps.
 
Sounds like you routine allows you to do much more together than most Pals and Cals. As the disease progresses there will be new challenges so hope you get to do things outside of house while you can. Once you get into the territory of trunk/neck weakness, respiratory issues and vent dependency, simple things start taking most of your time. Embrace the moment. D
 
Is there a chance of you both working form the same home office? I know that seems simplistic, but I found that when my daughter and I were writing together in the same room, I wasn't nearly as lonely as I am when I sit all by myself in my room to write.

I rarely leave the house, but I do try to spend as much time with my daughter (I'm not married and she moved in to help me) as I can. It helps us both not feel so isolated.

It sounds like you've got a pretty good system going. I'm glad you've got a caregiver that can help a bit during the day. There are so many PALS that don't.

The voice and/or eye activated system will help down the road--and it'll be easier on him to learn it before he 'needs' it than after, I think. I believe Medicare will even pay for it if I'm not mistaken.

Perhaps even the ALS closet has one to loan?

The idea about renting a car of the day was a good one, too (if yours isn't handicapped accessible) That's the main reason I don't go out. I fall too often, and i can't lift my scooter on my own any longer since my arm is nearly useless.

Even getting out and perhaps going for a walk in the evenings with him in his chair and you with him would get him out of the house a bit. I'm considering doing that with my scooter now that I live somewhere with good sidewalks.

Nice thing is that there are so many great CALS here, you'll get all kinds of ideas!
 
I work full time,take care of everything else including my husband. Hospice comes in the mornings, at least he will let them shave him most of the time. I still bathe him and do all else. I don't have small kids here, but try to work in seeing my grandkids, and spending time with them. My older dog has congestive heart failure, and has gotten very bad..Most days i don't feel like I do enough, I am trired, stressed. Hired a caregiver to come 4 hours per day started today. Bruce has been down since he found out, and well I guess he don't like it , but need the help
 
I don't have answers, but I know how you feel. My wife was diagnosed a little over a year ago, and hs since had to leave her teaching job. We have a 7 yr old, and a 22 mo old. Luckily I run my own buissness as well, (carpenter) but I've been losing lots of hours, and limiting my work to jobs close to home, so I can run back and help if needed. (thank God for cell phones) The seven yr old can stay home with mom, but the younger one has to be with me, when not in daycare. Patty can't stand anymore, and sure couldn't chase after the wild boy if he got ahold of danger. We have somone who comes in three days a week as well, but just as a housekeeper/companion, she gets Patty lunch, keeps the remote close by her, gets her the computer etc. But toileting, showers and such are all mine.

We get by surprisingly well, but I know just what you mean about half @ssing with the kids. Our youngest gets strapped into the highchair in front of the TV for about 30 min. every morning while we work on Pattys morning routine. Other than too much time with the TV as a babysiter, the kids seem reasonably happy.
Best of luck Holly.
 
Please know you're not alone in this journey. I get so exhausted trying to maintain some semblance of sanity in this situation. I'm still working full time as is my PALS, but in all honesty he can't do a quarter of what he used to do around the house and I'm left to pick up the slack. Even though he's retiring at the end of this year, I'll keep working as long as I can. Not to be a negative nilly, but I"m starting to kinda see the direction we're heading and I'm scared senseless. Don't feel like the lone ranger....I see this as an incredibly difficult journey (both emotionally and physically)---however, I feel blessed for every day that I have with my Hubs. Despite the "woe-is-me" tears that I sometimes shed, I've figured out that I gotta put on my "big girl pants" and deal with each day as it comes. Hang in there!

Ruth
 
I am caring for my husband at home,he is no longer able to work.I also work from home. I run a home daycare...My own 3 sons are at college..and its getting incresing more difficult as time goes on.I am extremly organized but things pop up.my husband has a bad day..I am running back and firth but feel quilty when i take the kids out to play(i use a baby monitor for my husband) He will not allow any outside help so its me to do it all..I dont know about you but sleep is pretty wellno exixtant..he is in pain and uncomfortable be are in the basement so he can use his recliner as he is more prone to choking on mucus whele laying down..im on the couch..Honestly i dont know how im doing it..Ill chock it up to determination and lots of coffee!

Get a baby monitor and sleep in bed if you don't have a bed get a twin bed you can latch the monitor onto your waist band. My husband wears his outside to his garden. Do you think your husband would sleep on the couch.
 
Hi Holly, my heart goes out to you, and let me just say that you are doing a great job; and you are not alone in this exhausting battle. My mom has been going through alot lately with my dad, and it is really taking a toll on her ...watching the person she loves slowly lose the ability to do the most simple tasks. She is tired ...physically and emotionally. For that reason my husband and I have sold our home, and we are getting a house with my parents ...this way I can help care for my dad, and also take care of all the duties around the house. I need to my mom to relax more and just try to enjoy any time she has with my dad. I also want to spend as much time as I can with him.
It's not going to be easy, and there are many tears coming our way...Please hang in there. Be strong.
 
sorry for my delayed response. I haven't used the board much and it seemed like it took for ever to post so I thought maybe it wasn't going to. I fee for you....sleep, really good, restful sleep just doesn't exist anymore...coffee does help. Sometimes work is my escape, but sometimes it feels so unimportant resepctive of what is going on with my husband. Although, very necessary :) I'll be thinking of you and your family.
 
Others are well meaning, but if they haven't been in our shoes it really is to difficult for them to even comprehend. I am grateful for the help we do get, great idea on the speech software. I can understand him fairly well for now, but it has crossed my mind that it could be worsening.
 
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