Broken247

David, thank you, you are so kind for taking the time to respond and advise... We have actually met with 2 different social workers and have found that we fall within the gap. No one really covers the 19-64 age range in this area unless they are mentally challenged. There are frustrations one after another and I am hopeful that things will turn around and he will gain some independence.

Yvonne, he is in a new facility with a different social worker and during the discharge planning we will discuss options. I am hopeful that this social worker will be well versed in what we can do and what is available.

Sandy, he is on social security disability and has COBRA insurance from his old employer. The insurance company is very strict on what they are willing to pay for and what they wont.

Betsy, just WOW!!!  Thank you so much. Your words spoke to me on so many levels. Lots of really good advice. You have such a way with your words and thoughts! It's truly the little things that have grabbed my focus now. It's the here and now rather than the "what if's"

I agree about the kids come first. Those two little men are just 5 and 3 and they have a full life and a whole lot of adventures to be had. My primary job is them even though I will need to juggle multiple rolls, I need to make them a priority.

This past Saturday Kevin was moved to TIRR in Houston. I was so excited because this neuro rehab is ranked third in the US. It's a huge accomplishment to get him in there and I am praying that there can be marked improvement. He will be in for a minimum of two weeks and though this makes it really hard on me and the kids since he is 2.5 hours away, we are making it work.  They are looking at a new wheelchair, multiple other devices to help him become independent as well as they just placed a cast on him yesterday to work on straightening his left arm.

There is still that underlying fear though. On Sunday when I left he was fine but on Tuesday there was an issue early in the morning. His core temperature dropped all the way down to 92 degrees. They do not know why this occurred other than it is some sort of infection. I'm so scared that I am not going to see the signs or not push him enough to help prevent a sickness. He is internally fragile and often times I forget that. I have blinders on where I know he's working on trying to walk, he talks, .etc but internally there is still this weakness where he can deteriorate rather quickly.

It still scares me that he will be coming home and we may get a nurse or a CNA 1x a week to check on him since insurance will not provide more than that. It's very sad that the way our system is set up, it does not matter that there are other circumstances in our home that are not factored in on his well being.

I am still optimistic though that the social worker there at TIRR will be able to provide some suggestions. It is such a marvelous facility and they are doing so much with him. I'm so happy that he is there.

Again, thank you everyone for taking the time to read my rantings and providing insight and suggestions.

Hugs,

Shannon

David - Help is a lovely 4 letter word that seems to escape everyone's mind around me. I have to pay to have someone come in to help which is hard when there isn't a whole lot of money left to do so. I'm just changing my mindset and going to do it myself. I don't need to be disappointed by anyone else anymore. I ask for help and I am forgotten or their lives are too busy to accommodate me and I have to wait for when they are good and ready. I get they are busy and I try to understand that but when someone lets you down repeatedly you learn your lesson sooner rather than later.

Sandy - You are so right. You just never know when a tragedy will strike, you have to just roll with it. The insurance company is pushing for him to get out next week, They are really fighting me with providing any further services for him. I keep hearing, "If he meets criteria." rather than, "lets get him help so he can be a functional human being again."

Yvonne - My husband's adult daughters live near us. One of which is only a .25 mile away. The other is farther but she doesn't drive so we do not see her much. For the one that lives close to us, I haven't seen her since 1/19. Originally we moved in with her and her family so they could help us out but it was too much for her to handle so I had to move us out on our own. I asked that she come sit with her dad every other weekend so I could go to the grocery store and that happened once and then she never came back around. I think this must have been my mistake for not setting up a schedule for her but I also didn't want to become overly intrusive on her life and her family. I do travel for work so when I am out of town the closest daughter keeps our boys and the other daughter comes and stays with her dad. That is truly a blessing and I do appreciate that so much but that is only so often so other than that there's really no relief. I have no family or friends here which makes this very difficult for me.

Cindy - Oh thank you!!!  You are such a doll but there is a BUT to all of this. I have been trying to get him placed into a skilled facility but our insurance will not pay for it. Actually he's in one now and they are trying feverishly to kick him out of it. We qualify for no assistance what's so ever. He does receive his social security disability but he is only 45 so we have to wait the 25 months to apply for Medicare and that totally looks like a nightmare. Parts A.B.C.D sheesh!!! Even looking at Medicare for a skilled facility it shows only 100 days and you have to pay $100+ from days 21-100 - we don't have that kind of money along with all the premiums associated with Medicare (mind you I'm still learning about Medicare) and all the working parts.  We tried Medicaid traditional as well as long term Medicaid to place him in a facility and both denied us due to we make too much money. I can't quit my job because bills have to be paid, medicine has to be bought, insurance needs to be paid for, housing, transportation, medical supplies, you know how this list goes on and on. I am literally forced to be a caregiver because there are no other options left to us. I'm not resentful and I know it must sound like I am but I'm discouraged. I want to do right by Kevin and my boys as well as try to keep myself healthy. The system is so broken and I am just not sure what's left, what rock have I not turned over?  I'm so sorry your husband had a stroke Cindy, not the best timing at all. I'll borrow some of your strength if you don't mind?

Thank you everyone for your comments. I'm sorry it has taken me so long to respond. Over the weekend I had a bit of a health scare and I needed to get things under control. I went to the doctors on Monday and they are working with me to resolve pre-hypertension as well as a bunch of lab work tomorrow. They have also placed me on prednisone and an albuterol inhaler due to I was having difficulty breathing. Lucky me, I now get to carry around two very pretty epipens as well.  I need to go in for a lung function test to see for sure if this is asthma, or potentially stressed induced asthma. Doctor said that my body was telling me it had enough. It's time to focus on keeping myself health and taking care of me.  I'm working on it, truly I am...

Shannon

Sandy, you are awesome!  What a great caregiver and source of knowledge and information for me.  Thank you so very much and when he comes home I will make sure I do these things. I do stop Kevin while eating to drink but was always curious about the vomiting. The rehab that he was just at was under the impression that he my have polyps. He went into the hospital so we missed that appointment and will need to reschedule once he is back home again.

Thank you again for sharing, you are very insightful.

Shannon

Donna,

Thank you so much, I will certainly look into the elder law attorney. I never had an idea that such a thing existed so this will help tremendously.

Becky,

I have made the decision to not tell the boys anything. I can't even begin to prepare them and I have been advised by my son's doctor that when the time does come that I need to be honest with them, speak plainly so they do not misconstrue what I am saying to them.

As for the PEG. He already has one in place and is currently on thin liquids and a mechanical soft diet. He adamantly refuses to have nutrients provided via his PEG. Even after speaking to speech that I wanted them to thicken his liquids they wont and still cleared him for thin. I would like to have him 1:1 during meals but again, not enough staff so this can not be accomplished. The other key issue is if he becomes ill and vomits. There is nothing we can do to prevent aspiration during this process which does not make me feel comfortable at all.

Debbie,

While eating he is aspirating for numerous reasons: he wont tuck, he wont slow down, he gulps, he drinks from a straw knowing that he has issues with the splash and the topper is that he refuses to sit up properly while eating or remain sitting up afterwards. He is still so creative but the logical side to do what needs to be done to take care of himself or at least the thought process to follow the rules to do so is gone.

Sandy,

Thank you, those are all great options and I will be sure to use those when he comes back home again.

Thank you all for your comments, your insight is very helpful to me on this journey.

Thank you for posting this. Your story is beautiful and has made my heart feel a happiness that has been missing for awhile now. Your joy and love for one another reminds me that even though we struggle in life there are all the memories of the past and yet the memories to continue to make in the future.