For Caregivers w/children

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Hi Heidi

Sorry to hear what you are going through and I feel the frustration you are facing every day. You need to get help for your partner, your kids and for yourself. We can only do so much before we burn out and if that happens then we are no good to anybody. Right now my family is doing, we had so much company visit this last summer I thought I would loose my mind, great for my husband and girls but loads of work and stress for me on top of the normal load and stress, I couldn't wait to get away from them all to work or to soccer, ( I play on a Woman's Masters team once a week) and run around like a mad woman. I hope to be able to keep playing through all of this as I know it helps my mental and phsyical being and I am no good to my family if I can't funtion. Like I said right now we are doing and will see how long I can keep up what I am doing, hopefully I will see the warning signs or a friend will of burning out and catch it before the damage is done. I feel guilty as hell leaving for work or soccer but know I need the time away to not think sometimes of what is happening to him to all of us or what will be sooner than we want.
It may be hard but you have to look for or ask for help it's out there.
 
I tried but it didn't work out

Y'all I gave it my best shot. Tried working then coming home to care for husband and son. I literally was getting about 2 hours of sleep a night. My husband has started having problems with strangling at night. He will not take the medication to dry him out and help him sleep and he will not sleep with two pillows to elevate him. I am constantly awakened and then can't go back to sleep. I try to adjust him and he's getting to be like a bag of cement. He gets upset and then immediately goes to sleep and we start the whole cycle over again with him strangling, etc...

I wish I was 10 years younger and perhaps I could deal with this better. I just can't think straight sometimes...
 
children

My husband was diagnosed a year ago with bulbar onset Als. He is now on long term disability. I am also struggling with the day to day juggling act of balancing the kids needs with my husbands. I have really reached out to my friends..but do not always want to do so. I have really been trying to figure out the best way to talk to my boys..4 and 6 about what is going on with their Dad. He use to be such a hands on Father..and now he is totally isolating himself from them. I know they are feeling it. I really have had heart to hearts with my husband but he is feeling really angry lately. I totally understand..and trying to keep whatever "normalcy" is left in our lives. I know we are all feeling the loss of what was...or what should have been.....
I was wondering if there are anyother caregivers with children in the Albany, NY area? I can't believe there are so many people out there like me...with young kiddos. I guess we just have to keep moving foward ....
 
Hey Kelly,

As far as talking to your two boys about their daddy, just a bit at a time is best. I've tried to explain to my 7 year old now for a year off and on that his daddy is sick with a disease that makes him tired and weak and sometimes hard to understand. My son just doesn't get that his daddy cannot do some of the things they were used to doing and becomes agitated, thinking that his daddy just doesn't want to do these things with him. Feelings get hurt and later my husband will break down and feel terrible about not being able to do what he once could. Children certainly complicate the situation and make dealing with ALS more difficult. Adults (most:?:) can understand the progression of the disease and what a PALS should or should not do, while children are in their own little world and have a preconceived idea about what dads and moms are all about. We don't want to upset that world. That is why we are just taking it as it comes and explaining issues in simple terms. Hopefully this will not upset his little world too much and he can integrate these issues as just a regular event. We've tried renting more movies, playing table top games, stuff like that so they can still do lots of things together. My husband was always the outdoorsy sporty type, so this is very hard for him too.

As you can see I'm on the opposite end of the right coast.:-D Others may be in your area that have children.

Hang in there and keep us informed!
 
Thanks

Thanks so much for sharing your experience. My husband was also an outdoors person..always involved in rough and tumble play. My youngest said the other day..I wish daddy would get better so we could wrestle again. Today we worked on models as a family..and put of halloween decortations. Definitely trying to find activities that we can all still do together. At times I feel bad when we go and do things that my husband is not able to do anymore. We went to the cornmaze the other day....I really missed having my husband there. Sometimes (actually alot of times) I look around and just get so angry that this is happening. I know that everyone of us feels the same way. Just have to keep moving forward. Had our first cool day here today...my husband is really feeling the cold. I know he would probably love to move somewhere warm. But, I can't leave my support system. The picture of your son is absolutely adorable. Have a nice rest of your weekend.
 
My husband was diagnosed with ALS four months after having our second daughter, it all seemed like a dream, such extremes in emotions!

There have been many ups and downs, I have learnt that it's all about what you tell yourself... And who you surround yourself with! Keep the positive!

I have always said things can always be worse! In the beginning my husband looked at me as if I was nuts, now he gets it, our children are healthy, we have each other. We have had some great times, got through the awful times!

My husband did not want CCAC "help", now he sees that it is not just for him, but it gives me time to walk around the block, without worrying.... time to regroup, then continue... I get the kids up at 7am and by the time my husband goes to sleep at night it is after midnight. I'm sure many of you are like me, I have not had a good sleep since the diagnosis, always on alert! ...not complaining! Like I said it could always be worse!

I am always on fast forward, there is no pause! That is how I coped, kept very busy.... it has become a lifestyle, need to change that! When you see yourself in your kids, you notice where you need to improve!:)

Dinner for us... hmm, a circus! I feed my husband, my now 4 year old wants to be fed, my 11 year old wants to go somewhere else, and I forget to eat until later when my stomach talks to me!

At bed time, for some reason, only my bed gets used! I love it!

What is normal anyhow! For me, when I get to the end of the day, and my head hits the pillow, and I am still fully dressed, I am very grateful, even after a hard day.

So many of your stories have hit home for me! Thank you! And my heart goes out to all of you!
 
I'm lucky that I work out of the house, so i am around to help with my mother in law, but my father in law is also here as well. Once we found out what was going on with Joyce (my mother in law), we moved them both in with us. I have a 14 year old son.

As far as personal care, my father in law does all the personal care of my mother in law. She won't let anyone else help her with the bathroom, etc, unless we are out somewhere and he can't go in the bathroom with her, and then she will let me.

I make sure they get all their meals every day, because if i don't, i have found they either won't eat, or they snack on things that aren't nutritious enough for them.

I'm blessed that I work from home. I don't know what I would do if i had to leave the house to work. My husband has a long drive daily for work, and it kills him not to be here, but he does feel better that i am here. if i lost this job for some reason, I probably would only work part time.

I'm lucky that my son is 14, so he can help out. if he were younger, i don't know what i would do. I worry sometimes about him because he spends alot of time in his room lately, but I'm not sure if that is being 14 or because of what is going on here or what. I suspect its just being 14, preoccupied with girls and all the drama that goes on in school.

It really sucks that money has to play such a big part in whether you get to care for your family member. I've been trying to figure out how i can swing it and get my husband to take FMLA leave. there just isn't enough money if he's not bringing it in.

I hope things work out for you. I'm sorry you are having to go through this with your husband. Its hard enough with my mother in law. i can't imagine if it was my husband.
 
My kids are 16 and 14. If they were tiny, I don't know how I would manage--probably the same. I take care of my father who lives in his own apartment. I do the difficult caretaking, like taking him to the bathroom every morning, cleaning him up if he had diarrhea during the night in his chair, sponge bathing him, changing his bandage on his large bedsore, feeding him breakfast, brushing teeth, etc. I am the only one of the people who help him that can lift/transfer him. I get up at 3:45 AM every day and go to his apartment and do all this, get my shower there, and get to work by 7:00. I have a wonderful husband who gets the kids ready and on the bus every morning. I came up with the idea for this time, because I feel like I can do all of these things while my kids are still sleeping. It makes me very tired the rest of the day, but I'd still rather do this early in the morning and be done. The weekends, however, are much worse, because I have to go over there several times a day since we have no other help on the weekends. We have someone who gives my dad lunch M - F, and someone else who gives him dinner M - F. They do not have to do any lifting or cleaning up of my father, other than maybe wiping his face. He has had ALS for about 7 years. I've been keeping this schedule for about 2 years. I sometimes wonder how long I can do this. I have to admit that I do sort of resent the fact that I'm missing out on some important time with my kids, who will be gone in a few short years! It seems unfair to have to spend sooooo much energy on caring for my father instead of my own children. I would never let him know that, though.

We just got him in the hospice program, and they are all so nice. It does help to have people come a little more often. However, this is nice for him, but doesn't help me with my crazy schedule. It is nice knowing that he has a little more social interaction when they come.
 
Hope no one minds but I moved freddiesnetty's question and your answers to the People With ALS Forum-PALS.
AL.
 
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Whats next?

Here is one for all you CALS, 3 weeks ago my husband was in the hospital with pneumonia, for 10 long days, it was awful, but he made it through it with a new outlook on life that was and is great. Since then there have been 2 other visits to the ER, all turned out ok.

No it doesn't stop there, that is why I am posting this under this topic. This one is a story for all of you CALS (with children) out there that think they are having a terrible day, remember this story.

Night one, 6:00 pm, my husband (PALS) must have the FLU, he gets nauseated, then gets thrown into a panic attack, can't breath, feels extreme heat on all his joints, I call 911. We spend 6 hours in ER, then head home, happy of course that all is fine.

Night 2, our four year old daughter now has the FLU... lasts about 24 hours she still has a cough.

Night 3, of course our 11 year old now has the FLU; projectile vomit is only supposed to happen with infants.... HMMMM.... our four year old chokes

This is night 3, (1:30am) I have 3 loads of laundry, my 4 year old to put to bed, my 11 year old to watch, my husband to put to bed, and a trail to clean up, (my daughter panicked when she got sick, she ran around the house, because my husband could not move his wheelchair fast enough out of the direct pathway to the bathroom. Needless to say the huge bean bag that she was sitting on hit the curb.

I just could not believe it! Now, hopefully you all had a great day, and when you think its a bad day, hopefully my story will make you feel just a little better.

I know tomorrow will be "just dandy", nope, no time for me to get sick, get that out of all your heads! WILL NOT HAPPEN! CANNOT HAPPEN! THAT WOULD BE CHAOS!

Got to go, busy, busy, busy.
 
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