we have a family meeting on the 18. the social worker gave me a heads up. she doesn’t think kevin is ever going to leave an institution. she said …ginny you had a life before kevin…you’ll have a life after kevin. if he goes to an old folks home you might as well shoot him. i’m looking into other options. i’m not giving up. maybe in 6 months time he could come home. i can’t believe this is happening. does anyone have advice??..ginny
First, please accept my great sorrow and empathy for the situation.
Now, don’t accept a social worker’s opinion as the final answer. She really doesn’t have the expertise to say this. She can help you get ready, and maybe she’s right, but this really should be a statement you get from your neuro, or even a behavioral psychologist. From your other blogs it sounded like he was making progress, so I wouldn’t lose hope.
Ultimately, please don’t forget about you. I’ve made it clear to my partner that I don’t want him to spend the rest of his life taking care of me should the worst happen.
Big hugs- Brian
Ginny, Why don’t you get in touch with a Acquired Brain Injury support group in your area. Here is link to Ontario Brain Injury Association. Maybe they can give you some advice and guidance. I agree with Brian. You can’t take one person’s opinion and truly, they can NOT know what his future capabilities will be. He DEFINITELY needs a rehad facility FIRST. It seems so early to me to make that assumption. I feel terrible for you. Start making some phone calls and see what you can find out. Be ready to put your foot down and fight for what is best for HIM.
I’m so sorry that you were given such sad information. I agree with the others, in that it’s rather early to say Kevin will never be able to come home. In anay case, I would speak to his neurologist about it.
The one thing the social worker is right about…keep taking care of you!
hi ginny,
don’t listen to them…keep faith…after having my avm removed and starting rehab…i was told that i would never walk again…my husbband was told to seel up uor double story home…that we only built 5 years ago…because i would never get up the stairs again…9 weeks into rehab…i left walking…and i made it up the flight of stairs to the top of our dream home…the journey has not been easy and there is still along way to go but my motto is pesistance…patience…and positivity…keep faith…were there is a will there is a way…it does take time…hang in there it is still early days…stay positive and keep believing…both .you and kevin are in my prayers
thanks guys! i’m waiting on a lawyer to call me back as well. they had him on anti depressants for a month. i got them to stop that. it’s a frontal bleed. it’s his short term. he thinks he’s 43. he calls me karen his ex. he’s still incontinant. he thinks he is at firefighter school. he doesn’t comprehend stuff. mind you the pembroke hosp. talks out of both sides os their mouth. they almost killed him by not assessing him when he went in through emerg. i am looking into a second opinion, just don’t know how to go about it. maybe the lawyer can help. i’m going to try everything i can. this is a death sentence for me as well. i’ll try the website. thursday can’t come fast enough. but on the other hand i don’t want to go. i’m kevin’s little pit bull. kev is in rehab and his time there is running out. i know there is assisted living. i’ll look into that. i just don’t have time. work, hosp., bed. thanks…ginny
Hi Ginny,
You are still pretty early in the game. His rehab is so important now, they try to push people out early because of the terrible way the healthcare system operates. I know you are so tired, I was and am my husbands pit bull too. There stories sound very similar, but Richie has not had as hard a path as your husbands. Sometimes you just feel like if you could hit a reset button just to give you a second to catch your breath and start over. It is sort of like being a hamster in one of those wheels you are running at warp speed and dont feel like you are getting anywhere. I know everyone tells you to care for yourself but the problem is how to. I think you get so wrapped up in caring for our loved one that you dont even know how to begin to care for yourself. I think the not knowing and not seeing an end in sight is the hardest part of this whole AVM thing. It is not like you have a broken hip, they fix it, you rehab and presto all done. Here you are fighting for someone you love who is a little bit of a stranger because of his confusion, always looking for that glimmer of recognition. Hang in there and even though you think you can’t take one day off for yourself…just one day. Think of it as not selfish but rather a way to recharge so you can fight even harder for him.
It’s too soon to be making those kinds of decisions. You have been on a roller coaster and you need a chance to just stop and really rest. Don’t let them force you into making long term decisions at this point. Just take it one day at a time, and don’t forget to do something for yourself. Or for others, even. When Dani was in ICU for a month, I was with her almost constantly. When others came to visit I would sometimes go play with the kids there awaiting transplants. They were pros at the hospital thing and their strength was comforting. I’m sure I got more out of it than they did.
Don’t give up Dr’s, Social Workers aren’t god. He sounds like he is such a trooper fighting his way back to you. ONLY HE can determine were he will end up and he’s doing one hell of a job getting as far as he has. As spouses and parents we can only be their advocates, “Pit Bulls”, crutch, and take them for what they are miracles. Keep your head up and heart open.
Hi! Ginny, hang in their you are a very loving soul. Good for you, you bull dog, I least now you can try to figure out what results; are from the AVM, treatment of the AVM, or the drugs. I wish I had a bull dog on my side, but I am thank full that I fought for me, and was able to, better later than never. We are close I live across the river down some from your area. Best wish for Wed’s day, and my prays are with you both. May be some favorite music or pictures of your shared home, life, might help Kevin remember. Maybe he will find modivation or stength to fight with some thing he loved, like a hobby etc.
he has his music his pictures he knows all of it. it’s the short term, guess that’s why he can’t remember what he had for breakfast. i wrote on a board call ginny at 6 p.m, he never does. i feel terrible, but i’ve told him he might never get out of an institution. hoping to trigger something in there. he doesn’t want to be there that’s why he’s a bit of an escape artist. i’ll fight that hosp. he moved his right arm the other day, not just his hand. that has to be a sign, as far as rehab goes. they want bed space, there were a bunch of new faces yesterday. waiting for this meeting is pure torture. thurs at 3. both kev’s and my life could be changed forever…guess i’m grieving…ginny
Dear Ginny,
You sound like you are starting to hit the wall…you have to take a day for yourself, you have to. The docs banned me from the hospital for one day because they said I looked worse than Richie did. I know you are really angry about the hospital dropping the ball when he was in the ER. Let that go for now, you have to. There will be plenty of time to take care of that later. I am not sure how things work in Canada, but here you can change hospitals if you want. Is it possible to do that? There are usually free standing facilities that specialize in just rehab, some specialize mostly in neuro. I know it is really hard wanting to know what the future is but you can not predict with these kind of insults to the brain. It will be a full year until he reaches most of his potential. The first six months will give you a better idea. The not knowing is the worst part. Your whole life has changed along with where you thought your plans for the future where. It is so hard to have some one you love right in front of you but them not being the person you know and love. It is even harder to try to think of what your life with him will be in the future. As angry as you are you have to try hard not to make these people the enemy, they are caring for your husband and they will be put on the defensive. I agree you need to be assertive, but not aggressive. I know you hate the hospital, I too hated the first hospital my husband was in and had him flown to a different hospital a few hours after he was there. I hate them because those first few hours are so critical and they wasted many of them. Additionally, his family doctor prior to the event was treating classic symptoms as an ear infection and the whole bleed could likely been avoided. I probably could fight this with a lawyer, but I am just too exhausted to. The institution your husband is in is unfortunately a business and healthcare is stretched to its limits. Sad, but true. The people caring for your husband are the ones that often times are the ones that can help you most. Do you feel they are treating him okay, is he getting the physical therapy he needs? I think those are the important things right now, along with them trying to move him out so soon in the game. Even if they do move him as long as he is going to get the intensive therapy he needs it will be okay. Find out where they want to move him and exactly what the physical therapy will be like. I think long term facilities focus is not as aggressive as most rehabs. I know you want answers as to what his recovery will be like, but looking at a CT scan is not going to tell you that. Richie had a very extensive bleed, one that they thought he would not likely survive and he would have severe defecits. He now does not. It took a while for his short term to come back, that was one of his major issues. Ginny, I am really worried about you and I really do understand where you are right now…I guess that is why I am so concerned, because I too was in that same black hole. It feels like someone is holding your head under water and everytime you try to come back up for air some one pushes you right back down. Take a deep breath, try to be calm when you go to this meeting. You have to try not to be emotion driven or they will dismiss you as being unable to think clearly. Write down questions and bring them with you, try not to be accusatory that will not help you. Ask what their goals for him are, what is the plan to achieve those goals, and what is the plan to accomplish them. What do they consider the goal for discharge. The hospital has to meet certain criteria before they discharge him…they do not dictate this insurance companies do. They are required to follow certain guidelines and must follow them. Ask for a different social worker if you do not feel comfortable with the one you are dealing with. Insist on a patient advocate to help you navigate all of this. It is really hard to get a doctor to show at these meetings, I know this because when we tried to set up these meetings where I worked it was always difficult. Surgeons do surgery and then when the patient is stable their job is pretty much done. Does he have a plain neurologist that sees him? Also the physical therapists are the ones who will have the most important information at this point. They are the ones who will be best to answer your questions at this time not the docs. If your husband is stable from a medical/clinical standpoint the docs are not the ones doing a whole lot right now, and do not need to be. I am so sorry you are going through this I really am, I guess I see alot of myself and how hard it was for me. I wish I could help you, but I know that there is not a whole lot that will make you feel better right now. Good luck today, be a warrior and fight the fight, but be calm. Do not let them pin you as the crazy wife, because they will say you are unrealistic etc…Think about every question you will ask and try to take the emotion out of it and just stick to the facts. Let us know how you made out. I am sending you love and prayers for today, and try to feel all the strength from the AVM survivors are sending you. Love Laurie
they’ll give kev 2 months in rehab. they’re setting up a teleconference with a neuro doc in ottawa and he will decide whether kev is viable enough to benefit from that facility. dr. timson in pembroke thinks kev will need 24 hour care cause of the short term. the soc.worker got me the cat scans. she was angry that suzzane blakny an admin. chick got involved. she said i have every right to see them. dr. timson wrote in her notes that i am to be notified of any meds that they put kev on. i hope kev is like your husband. i talked to him last night and said to him he has to fight for himself. told him i would quit my job to look after him. he said we couldn’t afford it. i said what would i do without him he said you move on. so he is understanding and has insight. he would have been better off in ottawa. but he still might go. we’ll see. they are seeing improvements in some stuff. he walked with a special walker all the way down the hall! i was thinking if we could get the toilet and walking thing down he could come home but it’s the short term mem. your story is our story. it gives me hope. made me cry. they are going to work with kev and i. they realize things at the hosp. have not gone well. im glad i’m seeing a lawyer he will be a big help, i hope. he will help me make those financial decisions ect. the team is more concerned about my well being right now. i know they are not the enemy. kev knows i’m not giving up. but if he does go to a home things will change over time. this is such a long greiving process. i love that man so much. then there’s christmas. i’ll spend time with kev. then my daughter. i’m so lost. i know things will fall into place as they come. thanks for talking to me. i think you are the most helpful cause of the similarities. ginny