PALS is parent...how to manage relationship

[missfrozenwater]

First time posting. Signing up as a CALS. Dad has had ALS for 3 years, he is not doing well. Having trouble breathing, unable to talk, move . Taking food through feeding tube. Always uncomfortable in pain. He's 53, I'm 23. Mom and I are both caregivers, mom more than me. But I'm still doing a ton, it's taking over my life.

I wish I would have found this support group years ago! It's hard with no one my age is dealing with hard/impossible things. I feel like no one understands.

I get frustrated with myself because my mind gets stuck on all of the sucky things, and end up feeling selfish when I prioritize my things over dad.

Just wanted to post and make myself known. Thank you all for the amazing support you give. This forum is amazing.

 

[Atsugi]

Welcome, Frozen. There have been adult children CALS here before.

In my mind, the relationship is the most important thing. Do whatever is needed to keep the relationships good, especially with your mom. In my limited mind, I think the married relationship is even stronger than the child-parent relationship.

Of course, every family is different. Good luck.

 

[lgelb]

Frozen, if you or your mom would like to post more details about your dad, perhaps we can help you guys manage his pain/breathing better. There is usually something more to try.

Sorry that you find yourself here. Our son was 29 when he moved in with us for that same reason.

Best,
Laurie

 

[affected]

Frozen welcome to the family, though I'm sorry to welcome you in here.

It is fantastic that you are very involved in helping with dad, you will never regret this and I'm sure both he and your mum appreciate it more than they may tell you.

Do keep posting, let's see if we can help out a bit.

 

[missfrozenwater]

Okay first major issue that seems solvable: my dad has been using Ensure as his only form of food for quite a while, probably 6-7 months. It is not a good solution. He often feels nauseous, probably throws up once every couple of weeks, and is now having some diarrhea problems. What other options are available? My family hasn't put much energy in trying to find a solution...

You could also point me to other threads if you know this conversation has happened before!

 

[Nuts]

Welcome, Frozen. One option is to purchase a high powered blender (I have the Vitamix and love it) and blend food for your dad. With something that strong, you can blend whatever the rest of the family is eating and put it through the tube. Right now I'm just using it for smoothies for myself, but it's what I plan to do if/when we reach that stage.

Becky

 

[affected]

There is another formula called liquid hope which is supposed to be made from real foods.

Lots of people swear by stuff like ensure, but lots and lots have all kinds of issues using it.

As Nuts says, you can also just blend up real foods.

 

[Maryl08]

Hi Frozen, I am so sorry to hear about your dad. I understand how you feel as my mom has ALS and I am 25. My dad passed away when I was 21 so it's just me and my little sister doing the care taking. It's not easy but whenever I have a selfish moment or think I was completely exhausted, I remind myself that I don't know how much time I have left with my mom and everything else can be put on hold.

It is okay to still take time for yourself too, just plan it well. My sister and I take turns and give each other a night off once a week to go hang out with friends or spend some time outside.

It is true, not a lot of your friends will understand because many of them probably have not had to go through losing a parent at your age. You can find people to talk to through support groups such as this.

Hang in there. <3

 

[KatBee]

Hi Frozen,

I am so sorry that this disease has attacked you and your family, too. I'm 26 and I'm the only person caring for my mom. Even so, I haven't needed to be with her 24 hours a day yet, and I also struggled with how to spend my time. You want to provide the care that's needed, avoid feeling guilty, and also hang on to enough of your life to make caregiving sustainable -- it's a really hard balance.

Do you live with your parents?

Gut issues are tough. My mom has sort of the opposite problem -- constipation. Still, it makes her really uncomfortable and resistant to eating anything. No specific advice for you, but I definitely sympathize. I am sure you'll find far more ideas in other threads on the subject.

Sorry to have to meet under such tough circumstances. <3

 

[missfrozenwater]

Thank you everybody <3 so nice to hear from people in similar situations, even if the situations are god awful. I live at home with my parents and besides when I'm in classes, for the most part in the mornings, I'm home most of the time. It is all incredibly emotionally exhausting, I'm constantly wondering how we're going to keep it up--but we've done it this long!

Thanks also to Maryl and Kat for posting. I have one other friend who was a caregiver for her mom for a short while, but otherwise everyone around me who's my age is pretty much doing whatever they want, going wherever they want, living the life. For me, it's very powerful to at least know there's others out there who are caregivers and others who are taking the burden so beautifully. Thank you <3

 

[Staying strong]

My Wife has been using Liquid Hope for 2 years Now and Swears by it.. After trying 3 other Formulas this was the one for Her. After some work we were able to get our Insurance to pay for it..with that said I'm sure everyone's tummy is going to respond a little different to certain Foods. Good luck to You and Your Family.