wow broken. I can feel the frustration and tension in your situation.  I have no advice I can offer only my empathy to you which I do unrestrictedly.

do try to get some help from someone.  if you can't do it you can't do it, and you start from there.

very kind regards,

david

I'm sorry you are still raising children, that just doubles the load of a caregiver... or perhaps more than doubles.   Strokes are terrible things, but when it hits, or anything... like cancer, car wreck, I mean... wow, things are happening to everyone, and the worse - at all ages.   It's not the way we ever dreamed our lives would be.   Have they said anything to you about wanting to send him home, and when?   

Like David says my empathy is with you. You have no family to help?

Before your husband is send home, do you have insurance? Is there a

social worker at the home? When I was in the hospial, I asked for help

and got it. Don't try to take it all on. You get ill then what about

son's?

Wishing you all the best.

Love and hugs

Yvonne

WELL SAID … NANCYL

Broken, Caregiving is not right for everyone. It is something that should be given much consideration. I see from your first posts that your husband has been home once already and is now back in the hospital so you know the struggles of caregiving. I know you are his wife but that does not mean you should take on the job as caregiver if you can not handle it. It would not be fair to Kevin as well as yourself. You need to talk to the doctors and if you can't give him the care he needs put him in a skilled facility. My husband and I have talked at length about this exact scenario as he was caregiver to his dying wife before we met and he knows how hard it is to care for someone that is bedridden and cannot take care of themselves. We have agreed that if it comes to that for either of us we should be placed in a facility and the other one would visit daily and spend as much time together as we possibly can. It is not selfish to admit that you cannot do this actually I commend anyone that can overcome the thoughts that just because they are married or it's a parent you have to keep them at home and take care of them! DO WHAT IS BEST FOR HIM AND YOU!!!! I grieve for the loss of what was and what will never be as my husband and I had only been together for 1yr before his stroke so we lost all the time we thought we had to enjoy our golden years. But it is what it is and so we live one day at a time trying to enjoy what we have. God Bless you and your family, I will have you in my thoughts and prayers.

Cindy

very good words and thoughts cindy.  this is something all must consider.

david

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

hi Shannon,  although I  don't express my thoughts too well, I definitely did not mean help in you taking care of kevin at home, but in the sense of helping you to find a plan for kevins care not in your home.

you seem to be really on top of it and are turning over even the little stones with such frustrating results.  I do find it very disturbing as you must also that your situation is not considered in our health care system.

you need someone on you side Shannon who understands the health care system and can give you helpful guidance.  what comes to my mind is something like a licensed social worker. my experience from about 15 years ago (I was a little disturbed at that time) was that they are very good at listening and understanding your difficulty and would definitely be on your side in examining possibilities (they should be very aware of the health care systemics).

and please do take care of yourself.  its clear that without you the whole thing falls completely apart!

best wishes to you

david

Hi Shannon, agree what David said. When I was in hospital, (this was about the fourth time) my blood pressure going up and down. A social worker came

and asked what help I needed. Well it came out like the river Nile, and

that is how I got into a center, and got on to a bus service that takes

me to not only the center, but also to my medical appointments. There is

help out there and they know where to go.

Wish you all the best

Hugs Yvonne

So he is getting the soc sec disability right now(?) and does he have any disabilty from his previous employer - and/or company insurance?

Yes you are a Survivor!  And it sounds like not only have you endured the stroke storm but you have weathered many other things like divorce and raising a double decker load of kids including one that is on the spectrum (now in DSM 5 Aspergers is included) so there is a fountain of strength inside of you that has never failed you at the time it is needed. We always seem to find it or borrow it. You have been seeking support and so you are indeed resourceful.  You sound like a very caring person and intelligent and refreshingly honest so I think I would like to know you.  You matter and count as a woman and a mother and a wife and as a career woman and as a lovely soul with so much love to give others.  Of course you need to howl at the moon and say enough is enough from time to time.  And those breathing spells are the song of someone in pain both physical and emotional right down to the core and I have learned that if we don't stop then our bodies stop us.  I am glad to hear that you are seeking and getting medical care for your body and I surely hope that you may seek care for your mind and spirit as well in some sort of therapeutic and nourishing manner. 

I always tend to think that children matter first and so I wonder if tackling the mom issues first may help the stressloader stop heaping on more and more as it does.  I wonder if there are resources for son such as programs and respite that he may qualify for that may help you.  As you pointed out, the boys are also being in the midst of these changes and circumstances.  It sounds like they are watching both of their parents have health problems so it must be scary for them and perhaps they would benefit from some support and recreation so they can go act it all out in some manner and it may give you a break. I don't know how old they are but sometimes they need a break as much as moms do.  So don't sell them to gypsies just yet. There must be some assistance available through the school perhaps even?  Anyway you sound like a savvy mom so I am probably suggesting things you already know and do.

I know this isn't how you imagined life to be and that some days you surely do want to run and hide but you don't you keep on loving your family even though you are drowning yes downright drowning in it.  It seems to me that you may not even be physically able to keep on enduring this and so perhaps someone trying to evict Kevin from his nice warm bed may realize that there isn't an alternative caretaking option in his home because there are two special circumstances which are a wife who is ill and a special needs child (if that is an ok politically correct and not too insensitive way to say it) so why in the world would anyone suggest he be sent home when there isn't anyone to care for him there, he can't be independent, and there are not resources to send in a private nurse so I wonder what they can figure out for him instead?  Well those are my rambling thoughts anyway because I am clueless here just trying to sort my own out.

I just wonder if you focus on a different area of your life that is causing stress and perhaps dwindle that down then there may be some shred of strength left for the bigger battles ahead with Kevin. I am all about divide and conquer. 

I just hope you continue to monitor your own health and blood pressure or well you already know why.

And in the midst of all of this I hope you may take advantage of this second chance to be with Kevin and even if it isn't the plan you dreamed just don't lose the treasures in this here and now reality.  He is still a father and a husband perhaps not the one in your reality but he is still here and inside he is still Kevin and a person who I think would say you matter and count too.  It is truly hard to fight for the moment. The moment is that little bit of time when we connect as people and blur out the rest of the nonsense going on all around.  I hope you may find your true tranquility and honesty.  I think I hear a woman who is already grieving so I hope you get some support for yourself so you are not bullied into any thing while you are recovering yourself.

Anyway those are my hairbrained ideas.

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