For Caregivers w/children

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brooksea

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Can those of you with children tell me how you handle taking care of the household, making sure your PAL is well cared for, and taking care of your children?

If you didn't work before your PAL was diagnosed what swayed you one way or the other to stay home or to get a job?

I've been a stay-at-home mom for 7 years. I need to make the right decision.

Could y'all give me your experiences? Thanks!
 

CindyM

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Thanks for raising this topic. I think about you PALS and CALS with little ones all the time! Not having been there, my first quess would be to try to get the MND chapter to give in-home help for the PAL so the CAL would have an extra set of hands around the house. But I am sure you thought of this one...hopefully some good answers will come in soon! Cindy
 

brooksea

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Well, I guess not that many CALS or PALS have children on this forum.

Thanks anyway.

I know a couple of PALS/CALS could use some adivce.
 

duplinwino

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Maybe it has something to do with the age demographics? Most children are grown and/or are the caregiver? My husband and I are only 31 which isn't the typical age group for this disease. ? I don't know, I'm just guessing. :)

I work full time, so my thoughts and plans revolve around making sure I have FMLA in place, enough time built up (or donated to me - I work for the state) to still get pay coming in, etc. when my husband needs full time care and I need to be home with him. He is still able to work at this point.

Do you have family near by CJ? I am blessed to have my parents 10 minutes away, my sister not too much farther and wonderful neighbors that we are very close to and know our situation. We wouldn't get thru any of this without them as far as helping with our daughter or basically anything.
 

brooksea

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Our family is spread out from here to Florida and none closer than an hour, except for SIL and she's a single Mom with problems of her own. We have good neighbors and they have already been of help. I just don't want to be too dependent upon them at this point and have them grow weary when I really really need them down the road.

Weighing the pros and cons of "money in" vs "money out" for care for both husband and son.

Trying to stay positive.
 

raggedymary

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I am thinking that caregivers with small children are too busy to reply - or even read emails. We have another ALS family in our town and she has toddler twins and a kindergarten boy to manage along with a husband on breathing assisantance, feeding tube and total limb onset. Community/church/family has remodeled home with hoyer lifts to help move him. She has nursing assistance for several hours a day, family is there to help with kids and meals and everyone one of them is putting in 24/7. Everyone is pretty exhausted. I cannot imagine her working outside the home. We met them last Nov and it makes me tired to even go over there and observe.

Just suggesting, but I would try to line up all the support I could. Ask your ALS chapter or doctor to refer you to another family with similar issues. It might be hard to find a job whose insurance would accept someone with diagnosed ALS. You might be better off with medicad? Someone dealing with the same issues is who you need to talk to.
 

brooksea

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Thanks Mary,

Good suggestion. Will speak to the gals at ALSA here and maybe the social worker at Emory. didn't think of them as resources for this dilemma.
 

Tom

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Jimercat,
We also had no nearby family, and used Church, friends, etc. What really helped out was the ALS clinic lining up hospice for us. They started with an hour a day, which basically was giving Mom in law a bath, but was a tremendous help to my wife. They also have a social worker who'll come and talk, and a chaplain if you want one. The social worker told us of a Medicaid bed available that we would have never found on our own, which was a Godsend, because it had gotten to where physically we couldn't care for Mom like she needed. Your clinic should be able to get you some help, or direct you on where to go. Hope this helps. Hang in there. Tom
 

TerryO

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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
 

shannonme

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Hi Jimercat-

I gotta tell you...it's darn hard to juggle the family and caregiving. I took care of mom here for 7 months. My boys were 9 and 6. I'm so glad I was able to do it, but it was very hard on everyone. Eventually she had to move to a care facility. Luckily it's nearby and I help everyday. (it was hard for me to give up my "job")

I can't imagine how difficult it must be for those of you with spouses with ALS. I've met some incredibly strong and courageous families. I'm amazed what the human spirit can endure.

Blessings-
Shannon
 

kay

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My husband has has been diagnosed with ALS for 17 months and we have a 7 year old and 4 year old. I still work full time - have to not only the money but for the benefits. We have a wonderful support group from family and our church. My children have had to grow up fast - very fast. They are responsible for a lot a things at home to help out through the day.

My husband can transfer from one chair to another but I have to get him out of bed and shower and dress him before I leave. He then will either go to his wheel chair or his recliner (lift chair). My daughter has helped him with lunch but started school this week and we now have someone from our church family or a friend coming over during lunch to assist him and keep him company.

Of course after I get him the chaos starts - supper-baths-homework-housework-bills-running in general.

We try to be positive and laugh and joke about most things and I always try to remind myself with this disease today is better than tomorrow and not to complain. My kids get aggrevated sometimes and I remind them that their father does not have a choice - he has to have help.

We have clinic Monday and will try to explore other options as far as home health - I have no idea how all of that works but we will see.

Good luck and stay positive!
 

brooksea

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kay,

Thanks for the reply and please keep us posted on how you are dealing with this.
 

Elizabeth

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Hi,
My husband has ALS and our son is three years old. I was not working before the diagnosis. My husband wanted me to go back to work as a nurse but I just couldn't leave my son who was very attached to me and still breastfeeding. I decided to open a home daycare. I recently had to close it due to my stress.....my husband was requiring more and more care and I couldn't handle everything. I find it very very difficult to care for the needs of my husband.....bathing/dressing/feeding and to balance it with my son's needs. I often have anxiety. I often don't sleep. We have had care offered by CCAC but my husband doesn't want it....I feel guilty pushing it on him. I have a hard time being a wife (kissing,cuddling,s-x) because I feel like his nurse.....there is a very frank book out there called.....Surviving your Spouses Chronic Illness.....disgusses many topics. All our family are 1 hour away and lead very busy lives of their own. Friends want to help but I feel like I want to 'save' them for when I really need them....don't want to wear them out too soon....plus I feel wierd calling them up and asking them to come and do my laundry or clean out my fridge. I am glad I am home and not working...when our savings runs out I may have to go to work....but who will take care of my husband? Anyway.....there are positives....we laugh alot at our funny three year old who could care less that his dad is in a wheelchair.....taking some time for yourself is a must.....exercise is a good one. I don't get much free time to come on this forum but I will try. Try not to let the piles of clothes or dishes bother you.....it will get done eventually.
 

brooksea

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Elizabeth,

Very sorry your husband has ALS. It seems there is no real good solution to this problem.

Hang in there and feel free to come to this forum for support anytime.

We may not always have the right answers, as it seems there are so many things this disease throws at us, but we've got plenty of suggestions to offer.
 

CindyM

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Hi Elizabeth. Thanks for sharing what is happening right now.

I probably don't have a lot to add to this conversation, except for my experience taking care of my Mom, who also has a debilitating illness and is terminal. We have family nearby but nobody pitches in, and I kept thinking, like you, that I would ask when I really needed them. well, I need them now but the woman they knew is gone and in her place is a stranger who they do not know and this stranger has an illness they have not learned. So they try to help but complain that she cannot talk to them. And they go in with preconceived ideas about what they can do for her, which is disappointing to us all.

Looking back, it would have been better all around if I'd let them learn along with me. At least this is how it worked out for us. Take care, Cindy
 
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