I’m a recent survivor doing awesome, my dad is also a recent survivor doing horrible. I’ve yelled/lectured him twice this week. Anybody outside of my sister would think I was the most horrible person in the world to attack a near completely disabled man whom has been kept alive by the grace of God (surgeon even said so) from his gigantic eruption/vasospasm/paralysis. He is like talking to a brick wall, I can’t get him to WANT to do anything, and everything we insist on, he yells, grips, cusses, and etc through the entire process. My sister, myself, and his girlfriend are his caregivers (all the same age and all have our own medical “issues”). My sister is an RN and I work for a medical university and we STILL CANNOT get an advocate between his 4 doctors (pain specialist, neurosurgeon, vascular doc, and general), insurance, and rehab facilities. He needs extensive therapy and is continually denied. He won’t do anything for himself (bed exercises, etc). I am at a loss…I feel like I am failing as a daughter & as an advocate for him…the burden is more than I can handle. I am against a brick wall and don’t know what to do. Any advise out there? Sorry if I sound negative or pitiful…just trying to ‘lay it out there’…Thank you for your anticipated guidance 
Kerri
Hi Kerri,
I know you aren’t going to like this but if he doesn’t help fight, it wouldn’t matter if he got the best therapy in the world and its not going to help him. You are doing your best and that is about all you can do. I know you having the feeling of hopeless but you have to keep trying to find a way to make him have that inner want.
Sorry I don’t have a better answer
Take care
Ken
Hi Ken: I guess you are right, I just keep thinking that if we could JUST get him in an aggressive program that he could feel like a man again, and his wonderful personality would return. We have seen glimpses of it, we know it isn’t lost forever…
Ken Stratmann said:
Hi Kerri,
I know you aren’t going to like this but if he doesn’t help fight, it wouldn’t matter if he got the best therapy in the world and its not going to help him. You are doing your best and that is about all you can do. I know you having the feeling of hopeless but you have to keep trying to find a way to make him have that inner want.
Sorry I don’t have a better answer
Take care
Ken
Hi Kerri,
Just a thought…I think he feels like he isn’t a man any more. I know I don’t and I don’t have his problems. I won’t date any more and have a very hard time asking for any help at all. I have noticed that the people that have been able to have help healing and go back to work never seem to remember what it was like. Kind of like the people you get around and tell you you look fine so whats the problem. The ones that are still in pain still have some real understanding for folks. If your Dad was a manly man before…I would say it broke his spirit. He feel worse that he can’t take care of himself. I know I piss people off just so they will go away. I feel I am usless and hardly can take care of myself. I don’t leave the house anymore. If I don’t bring food home when I go to a doctors visit…I just don’t eat. I just went through 5 days of not eating a thing because I just couldn’t make myself go get food and when I do eat I feel like crap. I think he is saying…just let me die. I don’t know how old your dad is but I am 56 and we were taught to just be a man…suck it up and keep going. and that is what we did. we didn’t go to doctors when something happened we were taught to put a bandaid on it and keep going. The more pain you could deal with showed the strength of a man you were. I know I still find myself feeling I wish I never made it through. I don’t have any life anymore. I wouldn’t try and date because I wouldn’t want to bring anyone into my world right now. Even recently have thought about not going back to any doctor so if something is going wrong…it would be good for me. Don’t want to wake up the next time. I am finished with this life. Time to move on. It sounds like he feels the same way. Just tired of trying to get better and not getting any better. Just old and tired and don’t have the energy it takes to keep going. If I was in your place I would stop offering the help. If he gets hungry make him go get it…Just leave him alone for awhile. Let him decide when its his turn to help himself. Stop doing everything for him. When he needs something…make him ask or let him just sit and be grumpy. Most of all don’t let it destroy you…and it will by the sound of your desperation. Yelling at him or trying to make him do what you think he should do or know what he should do makes him fight you even more. Leave him to his own monsters untill he asks for help doing anything. MAKE HIM ASK FOR FOOD…ANY HELP AT ALL HE MUST ASK FOR. I think he will start to understand how much you have already done for him and it might just be enough to give him that start you are looking for. He may even not ask you and start to do for himself. That will prove to him he can do some things and may give him the courage to try and do more. I know If I found out my aneurysm started leaking again. THAT WOULD PUT A SMILE ON MY FACE. I have promised myself that if I find out it is leaking again, and that is a possible situation right now… I will just let it go this time. Sometimes you just can’t do what everyone wants you to do. I have NO medical backround. I don’t know if my suggestions are good or not and if you take my suggestion…just keep an eye on him and see if it get better or worse.
ohhhh Jim. youve hit the nail on the head in so many ways here man…Yes we were a tougher breed of man, and still; are in lots of ways, even when the stupidity of it causes us more pains. Bandaid.=medications now though when needed…feeding myself most times seems just not worth the effort…like you i didnt just lose blood from the bleeding…i lost a big part of my manhood. But im at the stage now where imtrying to get myself back in order, whatever that may be…lol…dating…yes im up for that but i tell the other person not to expect too much…ive pissed people off too just to move them on…ive never suffered fools gladly much and now, its that i have no time for them.im trying to enjoy the good simple things life has to offer…i take walk when i feel capable, i ride a bike on the days i feel strong enough…not long rides…just short rides for excersise… ive got myself a decent little camera to take pics with of anthing that strikes my fancy…its a good feeling whenyou see a nice result.in fact ive even won an award from an online photo comp via the international society of photographers. and ive got the time now to travel when i want to…often a change of scenery works miracles in healing.Ken was correct when h said that with no will at all even the best therapy in the word wont work.
Kerri,just let your dad know that he is loved…let him know he is still wanted…but also let him know that he has to accept the fact that lfe has changed and its up to him whether it be for the worst or not. life can go on…look at the paralympics…omg…im so lucky i can still get around and be taking part in something…even if it is making a choice of tv programmes to watch. love and prayers for you all…Be safe…John
Jim said:
Hi Kerri,
Just a thought…I think he feels like he isn’t a man any more. I know I don’t and I don’t have his problems. I won’t date any more and have a very hard time asking for any help at all. I have noticed that the people that have been able to have help healing and go back to work never seem to remember what it was like. Kind of like the people you get around and tell you you look fine so whats the problem. The ones that are still in pain still have some real understanding for folks. If your Dad was a manly man before…I would say it broke his spirit. He feel worse that he can’t take care of himself. I know I piss people off just so they will go away. I feel I am usless and hardly can take care of myself. I don’t leave the house anymore. If I don’t bring food home when I go to a doctors visit…I just don’t eat. I just went through 5 days of not eating a thing because I just couldn’t make myself go get food and when I do eat I feel like crap. I think he is saying…just let me die. I don’t know how old your dad is but I am 56 and we were taught to just be a man…suck it up and keep going. and that is what we did. we didn’t go to doctors when something happened we were taught to put a bandaid on it and keep going. The more pain you could deal with showed the strength of a man you were. I know I still find myself feeling I wish I never made it through. I don’t have any life anymore. I wouldn’t try and date because I wouldn’t want to bring anyone into my world right now. Even recently have thought about not going back to any doctor so if something is going wrong…it would be good for me. Don’t want to wake up the next time. I am finished with this life. Time to move on. It sounds like he feels the same way. Just tired of trying to get better and not getting any better. Just old and tired and don’t have the energy it takes to keep going. If I was in your place I would stop offering the help. If he gets hungry make him go get it…Just leave him alone for awhile. Let him decide when its his turn to help himself. Stop doing everything for him. When he needs something…make him ask or let him just sit and be grumpy. Most of all don’t let it destroy you…and it will by the sound of your desperation. Yelling at him or trying to make him do what you think he should do or know what he should do makes him fight you even more. Leave him to his own monsters untill he asks for help doing anything. MAKE HIM ASK FOR FOOD…ANY HELP AT ALL HE MUST ASK FOR. I think he will start to understand how much you have already done for him and it might just be enough to give him that start you are looking for. He may even not ask you and start to do for himself. That will prove to him he can do some things and may give him the courage to try and do more. I know If I found out my aneurysm started leaking again. THAT WOULD PUT A SMILE ON MY FACE. I have promised myself that if I find out it is leaking again, and that is a possible situation right now… I will just let it go this time. Sometimes you just can’t do what everyone wants you to do. I have NO medical backround. I don’t know if my suggestions are good or not and if you take my suggestion…just keep an eye on him and see if it get better or worse.
Hello Kerri,
Sorry to hear about your troubles, but the problems you state are typical ones and the solution is recognizing the problem and then trying out different techniques. The book titled “Stroke and The Family:A New Guide”, by Joel Stein, MD, covers the problems you are facing and much more. It’s a comprehensive and easy read, I recommend it to everyone whom is interested. In particular, Dr. Stein identifies the problems you are facing as possible cognitive deficits, personality and emotional disorders. Based on your writing you could start considering the possibility that your dad is dealing with abulia, disinhibitions, anger and other emotional/personality changes. See in particular Chapters 13, 14 & 15 of the book for an explanation and solutions. Best of Wishes…
Harold Fernández
Hello Kerri,
In addittion to my previous message, read also the excellent chapters 8 & 9, repectively titled, “Impact on Marriage and Relationships” and “Impact on Children and Family”.
Blessings,
Harold Fernandez
Jim, thank you so much for opening up your heart and feelings in your reply. Dad has already denied his suggested follow-up surgery ~ I am sure he feels the same as you. I completely FELT what you were saying. And, it does really help to put things into perpective for me. It not only helps me to see through dad’s eyes more clearly, but also to appreciate that my situation is so minimal compared to others. I’m just so tired… and my comprehension, and higher cognitive levels are really off , not to mention headache’s with too much tv or load back-ground noise…but THAT IS IT. Peas and carrots. I read your words, and tears feel my eyes, because I feel your pain, I feel dad’s pain and I can’t do anything. But, I understand. Completely. God Bless and a great big hug around the neck.
Jim said:
Hi Kerri,
Just a thought…I think he feels like he isn’t a man any more. I know I don’t and I don’t have his problems. I won’t date any more and have a very hard time asking for any help at all. I have noticed that the people that have been able to have help healing and go back to work never seem to remember what it was like. Kind of like the people you get around and tell you you look fine so whats the problem. The ones that are still in pain still have some real understanding for folks. If your Dad was a manly man before…I would say it broke his spirit. He feel worse that he can’t take care of himself. I know I piss people off just so they will go away. I feel I am usless and hardly can take care of myself. I don’t leave the house anymore. If I don’t bring food home when I go to a doctors visit…I just don’t eat. I just went through 5 days of not eating a thing because I just couldn’t make myself go get food and when I do eat I feel like crap. I think he is saying…just let me die. I don’t know how old your dad is but I am 56 and we were taught to just be a man…suck it up and keep going. and that is what we did. we didn’t go to doctors when something happened we were taught to put a bandaid on it and keep going. The more pain you could deal with showed the strength of a man you were. I know I still find myself feeling I wish I never made it through. I don’t have any life anymore. I wouldn’t try and date because I wouldn’t want to bring anyone into my world right now. Even recently have thought about not going back to any doctor so if something is going wrong…it would be good for me. Don’t want to wake up the next time. I am finished with this life. Time to move on. It sounds like he feels the same way. Just tired of trying to get better and not getting any better. Just old and tired and don’t have the energy it takes to keep going. If I was in your place I would stop offering the help. If he gets hungry make him go get it…Just leave him alone for awhile. Let him decide when its his turn to help himself. Stop doing everything for him. When he needs something…make him ask or let him just sit and be grumpy. Most of all don’t let it destroy you…and it will by the sound of your desperation. Yelling at him or trying to make him do what you think he should do or know what he should do makes him fight you even more. Leave him to his own monsters untill he asks for help doing anything. MAKE HIM ASK FOR FOOD…ANY HELP AT ALL HE MUST ASK FOR. I think he will start to understand how much you have already done for him and it might just be enough to give him that start you are looking for. He may even not ask you and start to do for himself. That will prove to him he can do some things and may give him the courage to try and do more. I know If I found out my aneurysm started leaking again. THAT WOULD PUT A SMILE ON MY FACE. I have promised myself that if I find out it is leaking again, and that is a possible situation right now… I will just let it go this time. Sometimes you just can’t do what everyone wants you to do. I have NO medical backround. I don’t know if my suggestions are good or not and if you take my suggestion…just keep an eye on him and see if it get better or worse.
Thanks Harold, I’m going to check it out on Amazon ~ I love self-help books, so this should be RIGHT up my alley! Have a great week. Kerri
Harold Fernández said:
Hello Kerri,
Sorry to hear about your troubles, but the problems you state are typical ones and the solution is recognizing the problem and then trying out different techniques. The book titled “Stroke and The Family:A New Guide”, by Joel Stein, MD, covers the problems you are facing and much more. It’s a comprehensive and easy read, I recommend it to everyone whom is interested. In particular, Dr. Stein identifies the problems you are facing as possible cognitive deficits, personality and emotional disorders. Based on your writing you could start considering the possibility that your dad is dealing with abulia, disinhibitions, anger and other emotional/personality changes. See in particular Chapters 13, 14 & 15 of the book for an explanation and solutions. Best of Wishes…
Harold Fernández
Hi John: I like your additional insight, it really gets me thinking…I am anxious to get the book that Harold suggested…I bet it will help me with some of the positive reinforcement you touched on (my sister is really good at that) maybe this author will help put a twist to it somehow that we are missing 
~ Games ~ life it just one big game! Ha. I’m not really humored…that was sarcasm
I am super envious of your drive for life John, I hope that I can get there soon…I need it. Congratulations on your reward, that is awesome!!!
John Davis said:
ohhhh Jim. youve hit the nail on the head in so many ways here man…Yes we were a tougher breed of man, and still; are in lots of ways, even when the stupidity of it causes us more pains. Bandaid.=medications now though when needed…feeding myself most times seems just not worth the effort…like you i didnt just lose blood from the bleeding…i lost a big part of my manhood. But im at the stage now where imtrying to get myself back in order, whatever that may be…lol…dating…yes im up for that but i tell the other person not to expect too much…ive pissed people off too just to move them on…ive never suffered fools gladly much and now, its that i have no time for them.im trying to enjoy the good simple things life has to offer…i take walk when i feel capable, i ride a bike on the days i feel strong enough…not long rides…just short rides for excersise… ive got myself a decent little camera to take pics with of anthing that strikes my fancy…its a good feeling whenyou see a nice result.in fact ive even won an award from an online photo comp via the international society of photographers. and ive got the time now to travel when i want to…often a change of scenery works miracles in healing.Ken was correct when h said that with no will at all even the best therapy in the word wont work.
Kerri,just let your dad know that he is loved…let him know he is still wanted…but also let him know that he has to accept the fact that lfe has changed and its up to him whether it be for the worst or not. life can go on…look at the paralympics…omg…im so lucky i can still get around and be taking part in something…even if it is making a choice of tv programmes to watch. love and prayers for you all…Be safe…John
Jim said:Hi Kerri,
Just a thought…I think he feels like he isn’t a man any more. I know I don’t and I don’t have his problems. I won’t date any more and have a very hard time asking for any help at all. I have noticed that the people that have been able to have help healing and go back to work never seem to remember what it was like. Kind of like the people you get around and tell you you look fine so whats the problem. The ones that are still in pain still have some real understanding for folks. If your Dad was a manly man before…I would say it broke his spirit. He feel worse that he can’t take care of himself. I know I piss people off just so they will go away. I feel I am usless and hardly can take care of myself. I don’t leave the house anymore. If I don’t bring food home when I go to a doctors visit…I just don’t eat. I just went through 5 days of not eating a thing because I just couldn’t make myself go get food and when I do eat I feel like crap. I think he is saying…just let me die. I don’t know how old your dad is but I am 56 and we were taught to just be a man…suck it up and keep going. and that is what we did. we didn’t go to doctors when something happened we were taught to put a bandaid on it and keep going. The more pain you could deal with showed the strength of a man you were. I know I still find myself feeling I wish I never made it through. I don’t have any life anymore. I wouldn’t try and date because I wouldn’t want to bring anyone into my world right now. Even recently have thought about not going back to any doctor so if something is going wrong…it would be good for me. Don’t want to wake up the next time. I am finished with this life. Time to move on. It sounds like he feels the same way. Just tired of trying to get better and not getting any better. Just old and tired and don’t have the energy it takes to keep going. If I was in your place I would stop offering the help. If he gets hungry make him go get it…Just leave him alone for awhile. Let him decide when its his turn to help himself. Stop doing everything for him. When he needs something…make him ask or let him just sit and be grumpy. Most of all don’t let it destroy you…and it will by the sound of your desperation. Yelling at him or trying to make him do what you think he should do or know what he should do makes him fight you even more. Leave him to his own monsters untill he asks for help doing anything. MAKE HIM ASK FOR FOOD…ANY HELP AT ALL HE MUST ASK FOR. I think he will start to understand how much you have already done for him and it might just be enough to give him that start you are looking for. He may even not ask you and start to do for himself. That will prove to him he can do some things and may give him the courage to try and do more. I know If I found out my aneurysm started leaking again. THAT WOULD PUT A SMILE ON MY FACE. I have promised myself that if I find out it is leaking again, and that is a possible situation right now… I will just let it go this time. Sometimes you just can’t do what everyone wants you to do. I have NO medical backround. I don’t know if my suggestions are good or not and if you take my suggestion…just keep an eye on him and see if it get better or worse.
Hey this is old! I’m closing it.