Family dealing with changes

[Cristin P]

Apria came by to deliver the lift yesterday, but after the nice gentleman carried that thing up all those flights of stairs to our bedroom, as he was showing me how to push/pull it around, he noticed the wheel was wobbly and not attached. He said he couldn't deliver the lift to me in this condition, so he took it back down all those stairs and left with it. He wasn't sure when another one would get delivered, but I'm hoping today! I was so excited when it arrived, it's a manual lift and small enough that it already fit underneath my existing bed, and that I can move it around the bedroom well enough to get him situated. A physical therapist is supposed to call me to make an appointment to show me how to use it.

ARCG, our shower buddy also doesn't fit over either of our toilets. Same problem, the toilet bowls are too wide along the bottom. I did look into a bidet attachment to the toilet, but it was when COVID hit and they were all sold out on Amazon!

 

[Kristina1]

I'm so sorry for what you're going through. I agree with what everyone has said already regarding equipment. I think your husband will feel worlds better mentally/emotionally wwith a power chair and a solid computer AT setup that allows him to work and move about the home. The power chair process can be lengthy but your ALSA may have a loaner he could use in the interim.

I want to talk about your daughter. I will be candid at the risk of sounding unkind. Please know it comes ffrom a place of love and compassion, not judgement. I have wrestled with what to say since you first posted. I think the way your husband is approaching this her is really unhealthy/damaging. When I was diagnosed, my children were ages 4, 6, and 8. They are now 7, 9, and 11. Children need to feel informed, involved, and supported. They need the honest facts delivered in an age-appropriate format. They absolutely should not be lied to and it shouldn't be a secret because they will need lots of support from family and community.

When I was diagnosed we told the kids right away. We told them Mommy has a disease called ALS that makes my muscles get weaker and weaker. presed send by accident, wwill finish below

 

[Kristina1]

we told them I would need a wheelchair and help with lots of things. we immediately informed their teachers principal and school counselor. We got them involved with Hope Loves Company which has been an invaluable resource. They do sleep-away camps for children who have a parent with ALS every summer in multiple areas throughout the US. This year due to COVID-19 they are not doing in person camp but have ongoing Zoom get togethers and activities, currently and going all summer long. For the kids having the opportunity to spend time with other kids whose families are going through the same thing is extremely therapeutic. It normalizes and validates their experience in a way that is also comforting. My children also take comfort in being involved in all aspects of care giving. They help feed me, bring me things, they brush my hair or put on my socks. Sidelining kids from these activities would be a mistake as they find it comforting rather than upsetting. They want to be involved and want to feel like they know what is going on. It's also important not to make false promises and I think your husband's comments about Neurown have the potential to be extremely damaging because the sad reality is that there is no cure as of today. We do share with out kids how much great research is going on and how if ever there was a time to have ALS it might be now when we are so close to finding viable treatment options, but there are no guarantees and to make one can only come back to hurt your child. When dad continues to get sick and when he passes away.

I hope my words were helpful and not hurtful. I know you are going through the hardest thing you ever will. My love and best wishes for your family.

 

[affected]

I also didn't address the bit about your daughter, but would like to second what Kristina said so beautifully.

My husband had told his children who were young adults that he would be on a breathing machine and live for 20 years (he lived 11 months). We don't actually vent PALS in Australia. I didn't realise he had told them this privately and that they didn't know better. It wasn't until his last week of life that his youngest daughter who was 18 at the time asked me why he wasn't on the breathing machine yet. It was horrible, in his last days, to have to explain to her that this wouldn't be happening.

Children do cope better with honesty I believe. Your daughter may find it more traumatic if your husband were to die suddenly, if she believes he is going to be cured. Remember with this disease there are so many things that change suddenly, let alone if a fall or aspiration happens.

We are right behind you though, however you choose to approach things. We don't sugar coat here, but we do support and respect the decisions made after we throw our 2 cents in

 

[Cristin P]

Kristina, thank you so much for taking time to share your thoughts with me. I did explain that papa has a disease that makes his muscles weak, and we've watched together video of other pALS and their function at full paralysis. She just still says things like today when we were going thru her coin purse with coins from America and Germany (where her papa is from) and she said we would save the German coins for when Papa could walk again and go back to Germany. I did tell her there's a chance that medicine might not work on Papa but never said the words, "If it doesn't work, he will die."

I've heard of HLC. My biggest concern on that is, she's an only child and an introvert. I think that sleepaway camp would be her going on her own, and I wouldn't be there. I personally wouldn't mind sending her alone, but she would refuse because she's scared to be away from me for longer than during the day at her daycare. I wish we had another child, but sadly I had 2 miscarriages, the latest was shortly after we found out about the ALS. She's typically very shy around other kids and it takes her a long time to open up.

I will start involving her in helping out with tasks here and there. The hardest part is that he stays only upstairs for now (we have the stair difficulty that I mentioned) but a contractor has been working with Stiltz on an elevator and I feel like once he's able to go downstairs where she spends the majority of her time (tv, toys, everything else is downstairs), things will get better.

Thank you for your suggestions and sharing your experience!

 

[Kristina1]

You're very welcome. Regarding HLC, they recommend children come with a parent/relative/family friend. My kids go with their grandparents every year. They will sleep in the cabin with them and everything. Many moms attend, and while the kids are busy the moms connect.

We did not tell the kids it was terminal at first, but we said that I won't get better. They were so young. As they matured over the next year they inferred it on their own.

 

[lgelb]

Please see In Memoriam thread here.

 

[cfloriani]

So glad you have already received some helpful input. My husband has not been able to bear weight in years. We found a transfer board very helpful - and a few of our caregivers still currently use it to transfer him from bed to the commode chair, etc. This might come in helpful until your hoyer arrives or in addition to it.