When is the time to ask for help?

[ryan's wife]

I am feeling completely overwhelmed and really don't know how much of this I am supposed to just suck up and deal with and when it is okay to ask for help. We have home health coming today and they will be here 3 hours 3 times a week to help with Ryan's personal care. Maybe that will be enough, but I don't know....Ryan has been falling a lot and it is getting increasingly difficult for me to get him up. I am trying to give him halfway decent care while raising and homeschooling 6 children and trying to keep up with the housework. Needless to say, things are pretty chaotic around here. We live in the middle of nowhere (we just purchased a home closer to Ryan's family, but it will be a couple of months before it is ready), so there aren't a lot of people who can help. He has been given an order from the docs at the VA for hospice and I'm wondering if that is a better choice or if I should just see how home health works out. I basically feel like everything is falling apart Any advice would be very much appreciated. Thanks for listening.

 

[Phil's wife]

As someone who has homeschooled 3 kids before my husband was sick I know you must be extremely overwelmed! I hope the 3 hours 3 times a week will help you feel some support until you can get closer to family. One thing I have had to do is let things around the house slide a bit. Family comes in and helps get the house clean and back in order every couple of weeks or so. Only do what you have to right now and let everything else wait.

As for hospice, I am not sure what your arrangements for the 3 hours day/3 times week are and if that will continue through hospice - but we have been on hospice for about a month now (home health for a couple of months prior to that) and that has made life a little easier. Fewer ER visits that's for sure. Course my husband is also dealing with stage 4 kidney cancer with chemotherapy and that brings on at least an infection of some sort every month.

Hope you feel some relief soon.

 

[CoachMeg]

I can sympathize with your feeling of being overwhelmed. I do not homeschool my kids, but I do work outside of the house. Things are crazy and chaotic, that's for sure.

Take what you can get in regard to help. The three hours, three days a week is a start. i hope that the move closer to family helps, too,
All my best to you
love and light
Meg

 

[sadiemae]

Can you explain how hospice through the VA works? Is it through them, or through Medicare?

 

[brooksea]

Are you kidding me? How much are you supposed to suck up?

I am trying to give him halfway decent care while raising and homeschooling 6 children and trying to keep up with the housework.

How can you manage all of the caregiving and homeschooling and raising of the children? You will go insane without help!

I had to give up homeschooling after 8 months of schooling, as it was just too much with ONE kid!

You can't suck it up! You have to have help! Take it wherever or whenever you can. I hope, when you move, you will have lots of help!

Good lord!

 

[Katie C]

Yup... what CJ said. Luckily, homeschooling and ALS did not overlap here.. Kev was away at college when his dad got sick. Still... the answer to your question is "If you're asking, it's TIME!" Take as much help as is offered then ask for more! See if you can sit down with someone from the VA to compare your options.. then go with what gives you the most help! Good luck.

 

[Jason's Dream]

I'd say the sooner the better. The more help you have, the lesser chance for you to get burn out and if you get help, then you can be a better caregiver to your husband and be able to enjoy more quality time with your husband. Your time with him is precious. Its more important to do long lasting things. Make videos of him, ..of him talking to the kids, of him playing with the kids, of you and him enjoying time together. Take trips or day excursions with him and the kids, and go on dates with him. Have him write or type letters to you, to the kids while he can. Time is precious and it won't get better then where it is now, so now is the time hon. If you can, get people in there so you can get a break. Take time to be able to go for a drive, go to the spa, have coffee with a girlfriend, and process it all. As far as hospice, my only advice with that, is make sure you get all the equipment you will need with him before putting him into hospice. If he is on medicare/medicaid, they just give hospice a lump some of money to hospice and it usually is never enough to take care of the PALS, and so they will not cover surgeries or equipment. So you might even think of putting in the feeding tube (if thats his desire) before hospice, as it is not covered once he is in hospice. Hope this helps.

 

[Chase_Corin]

it is never too early or too late to ask for help.

My dad was against the idea of having help come in to get him showered and dressed in the morning but my mom finally won out. My mom has Fybromyalsia and has a hard time functioning some days. We also have an occupational therapest that comes is and a support worker that my mom can talk to.

I wish that my mom would take the oppertunity when I am home to get out of the house but it seems hard for her to trust Dad's care to anyone other than herself. She was a nurse for 25 years and still has those instincts. I am affraid she will suffer from caretaker burn out if we arn't careful so I make her leave the house from time to time even if it's just so she can go into town and have a coffee and read a book.

Look for services that might be able to help you now while you can still cope. My parents belong to the Legion (Royal Canadian legion) which is a service club and my grandfather was a masson so we have recently been contacting those places for help. Even having somone come in who can watch tv with him would allow you to spend that time doing things around the house that need to be done.