Update and Questions

[Jason's Dream]

Sorry for being soo MIA. Life, as I am sure most of you know, has been insane for us these past few months.

I gave birth 6 weeks premature to a baby girl we named Katherine "Katie" Ruby Abigail. Katherine is after my mom, Ruby is after Jason's grandma (the one who raised him), and Abigail means "My father's joy". Katie spent a month in the NICU and then came home with oxygen and monitors and such. Here, just at 4 months she is finally rid of all of that stuff and all the oxygen tanks and monitors are out of our house.

Jason has been going down hill fast. I am the only one who understands him now and at times I dont even understand. He has a dynavox but because he drags his palm across, we are waiting for the eye gaze attatchment on that. He now can't bear wait on his legs, so unless we get him into the chair via the patient lift, he is bed ridden. His skin is breaking down and he is getting bed sores even with me propping him up every 2-4 hours. He pants now and is on a BiPap machine. He just had his feeding tube placed. I feed him now, and know its only a matter of time before he needs to be fed via the PEG tube. He drools now. He also coughs and aspirates more. This Thursday they deliver the suction device and the cough assist machine. Once those are delivered and we get the eye gaze attatchment, then he will be in hospice. Is there anything else we need to get him before he goes into hospice?

Each morning I wake, I am scared I will find him already gone. I don't sleep much these days, and when I do, I seem to be constantly having nightmares of him dying and me not being there, or of the funeral or burial, or making all the phonecalls to like the funeral home, etc. At this point, how much time do you think we have together? Is it unrealistic to think it is a mere months now? Is there anyway to make time stand still?

His family has been unreal! He has a last will that states that all of his stuff (an by law all of his stuff should go to his wife and kids) to go to his kids. They have taken things of his already and he isn't even dead! Was soo hard being in the hospital and not saying anything to his family about how unreal they are! This is only the latest straw with them. I am soo incredibly done with them, but hold my tongue for Jason's sake. Jason doesn't want to run off his biological mom, even though she doesn't even care. The other day when the realization hit that he could no longer stand on his own 2 feet, when he asked me to just put him back in bed, when all of us were in tears, not ONE tear was shed by his mom. NOT ONE! I just don't even try to understand them anymore!

Again, sorry for being MIA, but I don't get much time to myself to set down and surf the web these days.

~ Becca

 

[Jason's Dream]

Does anyone know where you can get a portable patient lift? Or to be able to rent one? TIA.

 

[Miss]

Becca, I am so sorry. I'm glad Katie is doing well, though. My husband struggles with a mother that is completely self absorbed, too. Fortunately, he knows it. However, the knowing hurts tremendously. I hope Jason doesn't ever really find out. Don't you have some legal remedy for keeping your mother-in-law at bay?

 

[LornaDoone]

Do you have a local ALS society? Perhaps one of your physicians would be able to direct you to where you can go locally. We have had all of our lefts lent to us from our local society.

I hear of so many stories of unsupportive families. We have a few greedy family members, just waiting till the next relative passes. It's crazy really.

 

[kelly]

Becca,
I am so sorry to hear all of this craziness. Congrats on your beautiful baby......hope that she is bringing you some much needed joy. I can only imagine the exhaustion that you are experiencing. Your local ALS center is sure to have a lift you could borrow. Also, insurance will cover this as well. I know this is going to sound strange and scary....but ALS is strange and scary. We got hospice in our home 7 months ago and has been a huge HELP to us! THey provide all medication, lifts, and an aide every day. My hubby had to have a lung capacity of 30% in order to qualify. His quality of life has actually improved being on hospice. Sending you warm hugs from Saratoga. Take a deep breath...we are here for you!
Kelly

 

[Lavender Lady]

Congratulations on your new bundle of joy. My heart goes out to your family. Definately contact the ALSA in your are and or insurance. I will say a prayer for your family.

 

[Jason's Dream]

Thank you. I've checked with our ALSA Loan closet, as well as the equipment people they use and who the equipment people have recommended contacting regarding trying to find a portable lift and no one seems to have one.

We were able to get Jason in his chair and went and got pictures taken last week. They turned out wonderful. I did okay until we started to walk out of the studio and then the tears started to flow. I just got some printed out and picked them up yesterday and again, looking at them, tears began to flow. Will there be a time when I can look at them without crying?

We now have the cough assist machine, the suction device, the BiPap, etc. We have the Dynavox, just waiting on the eye gaze attatchment then he will be placed in hospice at that time. I hate the thought of hospice, but at the same time, looking forward to some help with him.

If you have had churches or people try to help you (financially), what have you done? IE: Have you set up a trust in your PALS name or how does that all work? I need help in this area, as there are some churches that are wanting to help us. Thanks in advance.

~ Becca

 

[10steps]

Nothing in your PALS name. You need a good disability law/ elderly law attorney to properly set up what is called a revocable Trust with most likelyyour name on it.
Congrats on the baby
Churches that have helped us just gave us a check made out to us for whatever needs we had - mortgage, insurance, food, clothes, utilities..didn't matter.

 

[Jason's Dream]

Thank you for replying. Anything from the church, is it taxable? I wondered about "gift taxes". So would you tell other churches to coordinate through your church and your church to give you the funds or does that become taxable at some point or would it make a church's non-taxtable status come in to question. Sorry for soo many questions.

Also, with the laywer, is it like a bank account to where we can use the funds now to help Jason? Is it set up through my bank? How does a trust work? What about setting up something for the kids future (a different thing all together)? What to set up and how to set it up to where it goes to them or how is it dispersed? Sorry for all the questions. Thanks for replying.

Also, we have a cough assist machine, the suction device, his BiPap machine, motorized wheelchair, dynavox (still waiting on the eye gaze attatchment), hospital bed. He also just had his feeding tube placed. Is there anything else we need equipment or surgery wise before going into hospice? Thanks in advance.

~ Becca