Navigating Through Life with Kids and ALS

[Labinma]

Hi all.....
So, I see this approaching. This time that will be sad and changing. When my husband will not be able to participate fully. He is now still driving and going to work but cant pick up anything heavy, speech is slurred, and has trouble with stairs. It truly is so hard to live in this day to day mind set that things wont improve. I have two eight year old twin daughters. I know I should get counseling. We have someone visting this Friday from ALS MA chapter and I will inquire with her about this.

I guess what I am trying to understand and prepare for is how the community will react. Per most people's experiences, the general senses is people tend to stay away. This is felt now. My husband does not desire to draw attention to himself with any of this. Quietly allowing himself to fade, and continue to function as long as possible (again, refusing feeding tube, assistance for living of any kind). He is frail and thin but as said, holding on to going to work and driving a car. This could go on for 6 months, or end tomorrow.

Can anyone share insight on how this might end up effecting my twin daughters out in the town social scene? I see looks of empathy already and people not sure what to say. But I am still that mom that wants her daughter to make the A team for soccer. Last night I come to practice and she is on the C team, So hard to play the game of involved parent and pushing your child all the while contending with looming ALS of their father that is relied upon to help in raising. Knowing the future holds change but all that uncertain and without him.

I guess I am looking for anyone willing to share their experiences with children in this age bracket, with the school, the community and sports etc. The good, the bad and the ugly.

 

[Atsugi]

My kids were 13 and 15. My wife fell one day, and was diagnosed in a month, just in time for Christmas.
When she was diagnosed and using a cane, we told our kids that mom's foot was hurt and we don't know why, but sometimes this happens, so let's all help mom carry stuff. Good job, kids.
When mom was in a wheelchair, we told them mom's not going to get better, so we're all going to pull together and do more chores, cause that's what you do when you're a family.

When mom had all limbs affected, I told them--one by one, separately--that this disease is not curable, mom won't get better, and in fact, mom is going to die. Everybody dies, some sooner than others. I held each kid and we cried together.

I told the soccer coach--he nearly fell over. The soccer team pitched in, drove my kids back and forth from the house. Soccer moms delivered a few really big meals to us.

I told the principal--I think that helped so the teachers wouldn't rag on my kids too much they were late or missing homework.

I told the church. The pastor told my youngest that mom didn't have enough faith in God to cure her disease, so she didn't have enough faith to go to Heaven. Everybody said they would pray, but they pretty much shunned us.

When Krissy was fully affected throughout her body, the soccer parents suddenly wouldn't talk to us or sit with us. No one would say it, but they didn't want Krissy around, now that she was fully and obviously disabled.

Every day I trained the kids in something new. Crushing pills, making dosages, feeding mom, turning on the cough assist machine, using the breathing apparatus. On several occasions, our 13-yr-old used the Hoyer lift to pick mom up from the hospital bed in the TV room and move her to the bathroom or the Laz-z-Boy recliner, completely without any supervision.

Krissy died the night before school started. I let the kids slack off without hassling them, and they realized it was better to go to school than to mope around at home. It did, however, affect my 16-yr-old's grades. No big college accepted him. But he went through a community school to a 4-year university and now is about to graduate in electrical engineering.

Krissy was a vet. The military provided a flag-folding team. They no longer provide buglers, but I found a retired soldier who travels throughout Florida on his motorcycle, playing taps at veteran's funerals.

We moved a couple miles away, and the school district insisted we change schools. Suddenly, my youngest, a star athlete, was no longer on any teams. Only ROTC gave us any extracurricular activities, and they definitely gave the boys more opportunities than the girls.

There was NO WAY I could imagine going through the holidays with mom missing. So I dug deep and we went to Italy. I paid for the kids to bring their girlfriends, even, because it would be a thousand times more fun.

I quit my job so my children would never be "latch-key" kids, home without a parent.

In the end, my kids grew up to be FANTASTIC. Independent, compassionate, hardworking, respectful, and full of fun. They have all the friends they need, and they each have real careers in mind. They are 19 and 21 now, living in their own apartments. We get together for dinner, movies, etc. Every other year, we go to Europe (with their girlfriends). Expensive, but well worth it.

In short, we got our kids slowly but fully involved in mom's life--and death. They turned out really well as a result.

Hope that helps.

 

[KarenNWendyn]

Not having kids, I can't address your main concern, but Mike has eloquently done so. However, I have some concerns about your husband.
He is obviously strongly identified in the role of family provider. However, he is neglecting certain aspects of his health that are still within control, and won't able to continue in that role of provider much longer. These aspects include nutrition which is obviously failing, and depression with a lot of denial. Ideally, he would do better with a feeding tube and antidepressants.
He'll probably refuse these, but consider discussing with him that if he could amp up his nutrition, he could work longer and more productively, and a g-tube would be the best way to achieve this. Same with antidepressants. They won't change who he is but may help give him a bit more energy to cope with all this. Your doctor and social worker from the ALSA may be able to help. Just a thought.

 

[lgelb]

Mike, I'm sure you didn't mean to slight parents like me that have always had to work and couldn't afford European trips.

Boston, our son was full-grown by the time my husband developed ALS, but throughout his childhood he dealt with my husband's Marfan syndrome, which entailed various heart/eye surgeries and a lot of things that his dad simply couldn't do (including driving, heavy lifting, sports).

So let me just say that when she is older, your daughter will remember that you went to her soccer games, not what team she was on. She will remember hanging out with her dad, not how much he slurred his speech. You have awareness that she doesn't -- and she doesn't need it to be happy.

Best,
Laurie

 

[Kristina1]

My kids are ages 4 (almost 5), 7, and 8 (almost 9). We have had good experiences with our community so far. The school has been great. My youngest is Autistic with intellectual disability. Because I can no longer pick him up or have the strength to pull him into a standing position to urge him to walk, it was very hard for me to get him outside to his sped van for school in the mornings. The van comes to the curb but the aide is not supposed to enter the home due to liabilities. When I told the school of the issue they got special permission to enter my home and help me. The aide comes in and carries my son down the stairs for me. At the end of the day they bring him all the way inside and remove his shoes for me. At the end of last year when the kids had their spring concert the school provided special seating for me even though I did not request it. The school psychologists have made themselves available to my older two kids to talk about the changes at home.

We sent the kids to Camp Hope Loves Company here in MA, the camp for children who have a parent with ALS. I know you were considering this and had decided against it. I want to mention that it was a really great experience for my children, and did not cause fear or distress due to being exposed to kids whose parent is further progressed or who have lost a parent. On the contrary, the kids came home more confident and at peace. I think meeting so many other kids who are going through the same thing, or have been-there-done-that really helped them. They also got to learn more about ALS in general, and meet someone who has been living with ALS for 17 years (they were really impressed by this encounter).

Through the camp we also met a local family whose Dad has fast progressing bulbar onset ALS. He was diagnosed in December and is currently in a wheelchair, without speech (but using AAC), and has a feeding tube. They have 3 kids. His wife was really glad to meet us and connect. I know you are in the Boston area. I can ask her if she'd be open to exchanging contact info with you. Maybe it'd help to talk to another wife who knows what you are going through? Also her husband is really happy with the feeding tube, maybe if your husband met and chatted with this man it might give him more perspective on the feeding tube. PM me if you want to try and connect.

 

[WendyWooG]

I was ill before I had als, I have had CTD sjogrens and fibromyalgia for years not life threatening but life limiting in what I could do with my kids. My daughter recently told me that she couldn't remember a time when I haven't been poorly in some way. She was 6 when I started being ill, 20 when I was diagnosed with als. She feels in some ways that it prepared for dealing with the ALS.

Yes there was some physical activities I couldn't do with my girls there were things that I missed out on seeing them do but we made it part and parcel of the experience they took photos they took videos and if I haven't been able to be there, they could come home and we would have A show and tell where we would sit down and go through everything they have been doing. it was enjoyable for me and for them and they never felt neglected because I always gave them my time. We were always very open with the kids in explaining that I was ill we never went into distressing detail but we were honest in saying mum is poorly she can't do that or my leg doesn't work any more so I can't walk that far but the time we got to the stage where I got the ALS and it was serious they were heading into adulthood

In Some ways it made me more creative in how I spend my time with them. We made an effort to find alternative things to do that I could join in with them but the main thing is being honest showing that you care and giving them your time if you are closed off and unhappy it makes your children closed off and unhappy so being positive in the time that you spend with them is so very important.

I have a 4 year old granddaughter Who loves coming to stay with us because she gets to climb into the hospital bed with me and we read together and watch films together and play games together on my iPad she loves being with whizzed down in the hospital bed, Just as she loved riding up and down stairs on the stairlift when I could still use it. She quite often gives me a kiss and a hug and says I will make you better Nana and I just smile and say yes that makes me feel so much better. I think sometimes as adults we overthink things and totally underestimate how strong and accepting children can be.

Wendy

 

[Labinma]

Thank you, thank you, thank you all for your insights. God bless this forum!
Take away, nicely said from Laurie (you have incredible insight and perspective on things), is that I have awareness she doesn't. That she wont remember his slurred speech and incapacity, but rather his capacity and love. I must remember my heightened sensitivity to things and/or perspective is not the same as theirs. Almost impossible to put myself there, but must be managed. Living for today is putting it lightly. Thanks again. ALS coordinator coming Friday. I will check back in.

 

[Labinma]

Also, thank you Mike, for the good, the bad and the ugly.

 

[Labinma]

Thank you Kristina1 also for the feedback from the camp. I will consider it next year for sure. My husband felt it too soon since we haven't even sat them down with any talks about ALS to begin with. Love that it worked for them and they seemed to gain some peace from the experience.

 

[Jrzygrl]

My kids were a older than your girls when my husband was diagnosed. 2 in high school, one in college. We were very open with them about what was happening. We went thru a few iterations of mis-diagnosis, thinking maybe we would be lucky to be wrong. It was easier, but harder at the same time. Easier that they could understand the medical terminology, but harder that they could understand what he would be going through. Things weren't "too bad" until the second had left for college and our son was a HS junior. Then, we had a steep decline.

The summer before his senior year, I sat down with the head of guidance at the high school and let her know everything. I asked her to talk with his teachers and let them know (I didn't think I was up to re-telling the story that often) and ask them to be on the look-out if he was acting out of character. His guidance counselor reached out to me and let me know that her father too had had ALS. My son played football, so I emailed his coach and let him know too. I asked him to let the coaching staff know, and also look for any changes. I got a very heartfelt email in return letting us know that he and the entire team were there to support us in whatever way we needed. Everyone, to a person, was great!

Time marched on, and things continued to progress, but our friends and community members have stepped up and been by are sides every day! My husband and I attended every home football game and most of the away ones. There was always someone to help me get him into the car when he was still in the manual wheelchair. My son pushed his wheelchair out onto the field when we walked out with all the other players and parents on Senior night. When baseball season rolled around, again, we got great support from the school and the community. All the baseball moms and especially the dads went out of their way to make sure my husband and I were included in everything. This time in his power chair, he again "walked" with our son on the field for Senior Day. Our school has promenade, before the prom, when all the kids come to gym all dressed up and the community comes to see them. The organizers were great in making sure that we had accessible seating. The same for graduation. If you have not already done so, please reach out to their school and let them know what is going on. We have had such a positive response from ours.

We also go to church regularly and have received great support there too.

At first, my husband was reluctant to go out in public as his condition deteriorated. I encouraged him to continue to get out and about as much as possible. If people asked, we would explain only to the point where we felt comfortable. I think for the most part, people don't know what to say or do at first. But we have found, that the more we try to go on as normally as possible, the more people become at ease around us. It's not always easy, but it is definitely worth it.

We have found love and support in the most unexpected places. We are very blessed. I wish it was the same for everyone going through this.