For Caregivers w/children

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getting help inside the home

hi. i'm new to this forum. but it is much needed. my husband was diagnosed in 04. we have 3 small children 9.7 and 6. it is extremely hard to juggle it all. i work full time for the money and of course benefits. my children are very active in sports and etc. my husband said he didnt want them to stop any of it, because he didnt want them to remember that they couldnt do things because he was sick. i enjoy taking them to their activities though.
our relationship has very much dwindled down to nothing. he has become a very mean, resentful person. i dont know how much more i can take of it. any suggestions would be great.
AS FAR AS GETTING SOME HELP:
I live in PA our als assoc here put us in contact with the united cerebal palsy to get help inside the home. we have a home health aide come in 5 days a week for a total of 36 hours. he also qualifies for additional weekend hours, but they cant find employees for those times. you may want to check into it. it was definately worth it. they do ask income info, but they want just the patients info. since tim is on disablity pay, we dont end up paying anything for the extra help. they dont turn anyone down they said, you just may have to pay a little out of pocket--like 5-20 dollars a week if that. but it sure definatley beats the $17-19 AN HOUR! they break down tims entire day and figure out how long it takes him to do everything and what he needs help doing and then they figure out how much time you need someone in the home. it really is a great program.
they also had us in contact with the mda to look for help inside the home. but the UCP lead worked for us.
 
Well that is really great that you re able to get help from UCP. Does your husband have an ALS diagnosis? I'm surprised that another organizayion would help. If so that's great information to share here.
AL.
 
5labudas,

Thank you very much for that information.

The problem with your husband is just one of the many things that come to mind when trying to make a choice to go back to work. Do you think he is resentful and mean because he is unable to see his children do their various activities and only sees you on a limited basis? And when he does see you it is in a caregivers roll?

I've read the study they've done about how a married relationship can change when one spouse has a terminal illness and the other becomes caregiver. I don't want that to happen to us. But I understand the necessity of working for benefits especially.

I'm very sorry your husband is displaying such feelings. Is he on antidepressants? Can the ALS Clinics social worker help you in any way?

I can't imagine how you can juggle having three kids (I'm just worried about one!) and a husband with ALS.

Please feel free to reach out to us on this forum, as it sounds as if you are very frustrated to say the least. Maybe others will have some input for your situation.
 
AL--- yes my husband was diagnosed with ALS in nov 2004. it was the MDA and ALSA that gave us the lead to the UCP for in home help. that info has been priceless.


jimercat-- yes he is on an antidepressent, however it is a very low dose and has been on it since before the diagnosis, so i'm sure it could be upped or even changed. he doesnt feel that he needs it though. his profession was in the mental health field and he's very familiar with all the drugs and therapy stuff so that doesnt help matters either.
 
givinin

TerryO said:
Hi jimercat,
My husband is 47 with ALS and is now home on disability. We have 2 kids at home age 13 and 6. Right now my husband can still get around to do most of his own care using a walker. Here in Alberta, Canada we have an amazing support network with homecare. i hope to not have to go towork to support our family but we will see what the future holds. Sorry it took so long to post but we took a long awaited holiday to the beach! I will try to be on forum more often. Nice to visit with everyone. Terry


I haven't been on for awhile been to busy with it all. We have 2 gilrs 14 and 10, my husband was told a year ago that he has Bulbar ALS and we told the girls last Fathers Day what the name of his illness is. I work part time, 4hour shifts 3-4 days a week to bring in a little extra. During the summer when I went to work the girls were around to help their father but now they are back to school so we have to rethink how things are to be done. He is much weaker and it is harder for him to use the walker, talk and eat. It is hard to expalin to the girls what is happening to him but I try to be matter of fact about all that is going on and take it as it comes, there is no drama when he starts to choke, I talk calmly to him and we wait liquid at hand ready to step in if needed. We try to keep things as rutine as possible for the girls, playdates, sports, having friends over and such. There is couceling if needed but pretty much take all a day at a time.
Hopee this helps some.
 
givinin,

I've also used the "don't panic" approach to things with my PALS. I try to take everything in stride like you. Although, some days I do get frustrated because my son just can't understand (and won't take no for an answer) why his daddy can't do something with him. I've got to learn some better diversionary tactics!

Hang in there!
 
Children

Hello,
I was breastfeeding every two hours while taking care of my husband. Not easy! but It was wonderful that I had the year off for maternity leave so we can be together. I felt it was great to have time to be with each other. We looked for help everywhere we could find it!
It must be difficult to go back to work after being at home with your children for 7 years, even more now that they need your love and your support. This must be a very difficult time for you, I hope you will find an answer that you feel good about and all the support you need.
Take care!
Sunny
 
Thanks Sunny! I will be going to my friends photography shop tomorrow to go over details of the job to help me make up my mind.

I now feel this will be good for my family and if things get to the point we can't manage we'll just have to cross that bridge when we come to it. At least my friend will understand from the beginning what I'm dealing with.

Thanks all for your replies.
 
By the way - if the boy in the picture is your son - he is adorable. I always smile when I see his picture!
Sunny:)
 
Hi Jimercat,
I am new to this forum, but I am a single mom of 2, and my Dad is only 60 and has ALS. I used to have him living at home with me and my kids, which was hard for them too, not be able to understand how serious their "Pappy's" illness was. My sister would come over at 5:30am every morning to take care of my Dad, getting dressed etc... and I was there most of the time during the day to help with other needs, but did have to work, I just worked evenings and 4 days/week max. I would try to help do the morning routine as often as I could to give her time for her life(kids, work etc) but it's hard no matter how you look at it and I'm not sure what your exact circumstances are and your husbands progression is, but my Dad's has been very fast, he was diagnosed last November and we don't think he will be here at Christmas. If I had the means, physically and financially (not to mention the emotional side), to keep him at home and have someone come in to help, and I knew at the time that our time would be so limited, I would have tried to be home with him more. However, I couldn't do it any longer or offer the help he needed because it progressed so fast, so we had to put him in a nursing home in June, which I never thought I would have to do and have guilt for that, but at the same time, I have 2 small kids that need me and my life, after my separation, I had to go back to work full-time. I wish we all knew how much time we had with them, but this is an ugly disease for all involved, but I do wish I was able to be there more, especially now, and with or without local support, it's hard making decisions around our loved ones with ALS, my sister and I were lucky we have eachother and her husband is wonderful too, but we both have young children and a father that need us and it's hard to divide it all and keep it together. I truely hope you are able to make this tough decision and find some kind of peace in it, and know you are doing the best you can, and I am certain, your husband feels the same. Take Care, Renee
 
Sunny-

Thanks! He is a charmer (when he wants to be).

Renee,

I'm so sorry you had to put your Dad in the nursing home. It's terrible that it comes down to making such decisions. You did all you could for him and I know it had to be so tough to juggle everything with your sister. Life happens, and it ain't always what we hope for. But you have to think of your children. I sincerely hope your Dad will be able to make it through Christmas so he can see his grandchildren on that day.

Thank you for sharing your story and please come to this forum often. We need each other.
 
how they cant

im my boyfrinds full time care giver wwho has als oer the year when he was told till right now he has lost his speech has feeding tube suction machine bipap and now in two weeks he cant walk two steps without falling down and lost 60 lbs now i forgot to say hes 35 years old and our children are ages 3 and 9months i felt i could do this by myself no problem but in two weeks he has taken a dramatic decline i spend so much time trying to help him i cant do for the kids like i used to by the end of the night im so worn down i dont even have the strengh to put my pjs on i feel whenyou have such little one who have no idea whats happing to there daddy but i feel like i dont want them feeling put off :-( :cry:
 
Jimercat

Thanks for the kind words, the support and understanding in these forums is unreal, so many caring people who pull together to offer advice, their knowledge, any words of encouragement, it means more than words can say. I am trying to find a way to be at peace with my Dad's passing, for me and for him, but this is the hardest part, it's gone so fast. My best to you and your family and thank you again.
Renee
 
heidi,

I am very, very sorry you are having to go thru this! Is your husband's family helping you with the care giving? You HAVE to be able to care for yourself and children. Please contact the ALS Association and explain your situation. Here is the linkto find the ALS Assoc in the Seattle area:

http://www.alsa.org/community/default.cfm?CFID=2&CFTOKEN=68144428

You cannot take on such a daunting task alone. As much as you advocate for your husband you will also have to advocate for yourself in order to find relief from an exhausting situation. The ALS Assoc can help you find caregivers and arm you with information to plan ahead.

Is your husband going to an ALS Clinic? The social worker there can also be of great help in pointing you in the right direction and even making phone calls for you to get help. Please let us know what steps you are taking to help yourself. Maybe some one on the forum is also in the Seattle are and can provide info that would be helpful to you.

Please hang in there! You have to pick up the phone and ASK for help! It can be hard to do sometimes, but you have to think about your kids!
 
Hi Heidi - I agree with CJ. this is way too much for one person to manage alone. You don't say what state or country you live in but if you are in the US or canada there are likely some resources for your family. I'd be willing to see what's available, if you want to PM me. Cindy
 
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