Please help

[caringfor5]

Hi Everyone,

 

I'll just jump right in here and ask.......what do you say to someone who says they want to die? Not that I've been completely clueless and not said anything at all, but I guess what I have said is not making the impression I want it too. My fiance has said more than a few times since he's been able to talk that he wishes someone would kill him or that he wishes he would have died. I try to tell him that I wouldn't want that and that I love him very much and I try to encourage him to keep trying but in reality I would maybe want to die myself if put in his situation. At the same time though I want him to realize that he's not dead and that he's not going to die any time soon so he needs to be more positive and have the will to live and fight for as much recovery as possible. I just got off the phone with him and his father, Mike was yelling about not being able to make any decisions for himself and that he has no options and wants to die. His dad said that he's fighting the nurses and doesn't want to take his pills is screaming and yelling at everybody. One day he's fine and the next he's calling everybody names and yelling at everyone. I know he has mentioned to his dad and also to me that he does not want to live through another stroke In other words he wants a DNR put in place he does not want to be saved, but how do I get the point across that whats done is done and he's alive now so he can either make the best of it or decide to not and be stuck in a bed for the rest of his life because he won't try and fights everyone including the therapist. I think by him being so uncooperative he is sentencing himself to a life of being bed ridden and I don't know what to do.

 

Also, I am not able to be there all the time because of work, his Dad has stepped in and has been by his side for the last two weeks. Mike has been grumpier than ever. I should mention again that Mikes family are not really close I would say that they probably only seen eachother maybe at the most once every two months, they never did anything together as a family, no holidays together, no family dinners, no birthday partys, nothing. So what I'm getting at is, although I feel we need a advocate, someone that can be there often, do you think that this is adding to Mikes frustration and now that he is at RIC should I maybe suggest that he doesn't need someone there everyday and that I'll continue to be there every weekend like I have been and let the therapists take care of him like they know best. His dad could continue to come to see him a couple days during the week, like he was before. Mike didn't seem to be as frustrated before.

 

I know I always seem to have a million questions? The problem is I never know what to do or if I'm making the right decision.

 

Thanks in advance for any advice that you can give me or even just telling me about your experiences, its all so helpful.

 

Tina

[HostAsha]

Tina:

 

I suffered stroke at 34, i also used to cry all the time and wanted to die, but the thing is I also had hope that things will become better, being young I had better chance of recovery, I hoped to become 100 % back to normal, maybe that was unachievable dream, but when my hubby stayed with me all the time in hospital taking care of our son and being there with me helped immensely, I feel you being there for him most of the time will also help him lot, or his father being there also helps, everybody recovers, when you have strong supporting loving family, patient feels good and loved, I m telling from my experience, my family was always there for me, and we never celebrte any bierthdays, but we all are always there when help is needed, be apprective of his father infront of mike, because of his father you are able to catch up on work otherwise you might not get that big vacation from work., and tell Mike he is lucky that he is at RIC one of the best rehab so cooperate with them, such that you all can go home quicker, In no time he will be achieving all small goals like things we used to take for granted, and also tell him to start writing gratitude journal for each day, I did that while in hospital that forced me to look at my positive sides, things could have been worse, he is able to talk there are so many who loose that ability, anyway leg always come back, its fine motor skills which take longest, and there is reason that he survived, so many don't get that second chance at life

 

sorry rambled on

 

Asha

 

[caringfor5]

Thanks Asha,

 

You didn't ramble on, it was good to here from someone who has been through what he's going through to help me see that he may be voicing that he wants to die but that in actuality he is still fighting to recover.

 

I do appreciate what his Dad is doing for him, I just question if Mike appreciates it. I should clarify that not only did his family not spend time together but they also didn't get along about alot of things. Thats why I'm worried that his Dad being there is causing Mike to be more aggresive than if say he only came for short periods in the day. I told Mikes Dad to ask the therapists what they thought. I mean if the therapists think that Mike is more cooperative when they are working with him one on one rather than when someone is there then maybe it would be better for him in the long run to be left alone. Mike was kind of a loner, likes to be left along type of guy. I'm just going by how he felt about things before the strokes. Even his Mom has thought this herself, but I have pushed for them to help me because I couldn't be there all the time when maybe I shouldn't have because its frustrating the h*** out of Mike. Like I said before I don't know what would be best. Maybe we should just flat out ask Mike, but I feel like he does need someone there often to look out for him and make sure he's getting the care he needs.

 

thanks again, Tina

[spokangie]

:hiya: Tina

 

Have you considered talking to a Pschiatrist. Was he evaluated by one when he was in the hospital..

My husband was evaluated in Rehab hospital. Her findings were that yes he did think of not wanting to go on the way he was, although I didn't see it..My husband is a fighter, he survived VietNam,,overcame his deamons when he came home..

She recomended he be placed on a antidepressant before he went home..He was put on Paxil 20mg a day. We have had no problems with his emotional state since then. Oh except for the time that I switched his Paxil with Lipitor, same shape pills..Thankfully it was only 2 days, BUT,,what a difference it made..He was crying at anything and everything, he just could not controll his emotions..He was back to normal the next day just one day of being back on it..

We were told to take anything sharp away from his view, knives, scissors and to watch him carefully..

I didn't have to go to any of those extremes at all..He has accepted his life such as it is..and we are moving on..

My husband's stroke was on his left side. He now has Aphasia and can only say a few words, He can barely walk, when he does he used a hemi walker..He was right handed but now had to re learn to use his left hand to feed himself, to write with..He can't read out loud, but can read to himself..He is still very inteligent and remembers everything, well almost..

He watches a lot of television, I try to interact with him but he has a short attention span and quits fast..

We have stoped going to therapy, he doesn't feel comfortable in crowded areas..

He was progressing somewhat before but it is slow now..

Can I ask how involved were you before his stroke, were you living together then..If you were then he should be still with you..It doesn't matter if his family wants to help, they can do it from your house too. How is he towards you..

You can step in and ask his Dad to seek a Psychiatrist and get him some help that way too. NO he is not crazy,,But his brain has been altered by the stroke. He may be experiencing these emotions that are very common in brain injury survivors..He can't help himself, but you and his dad can help him, the sooner the better..

Hope things improve for you, as long as he has you on his side to advocate for him, to show him how much he still means to you, they will.

Take care

 

Angie

[caringfor5]

Thanks Angie for the reply,

 

Mike was actually put on Paxil very early on but not because he was evaluated by a physichiatrist but because I saw a need for it because he would look like he was on the verge of crying at times and I thought he might be depressed. Well needless to say practically from the very moment he started talking and saying some of the things he was saying both his family and I thought it was apparent that this is not the right drug for him because it doesn't seem to be working but we haven't been able to get anyone to listen to us. Another thing that frustrated me was just a few days ago his father was in the room when Mike was being a little difficult and someone asked Mike if he wanted to talk to a physichiatrist and his father spoke up and said no that talking to someone wouldn't do any good because Mike doesn't listen to anyone when he gets like that. I was very, very upset about that. Mike listens even when you think he's not and for his Dad to say that in front of him and then also to make the assumption that it would not help Mike just really really made me mad.

 

As far as how involved Mike and I were before the stroke.....we were to be married in a very beautiful ceremony after a year long engagement on October 29th of last year but he had his strokes on September 10th. Everything was planned and paid for even the little things were done. Now all the things that were bought are packed away in the closets of our house hopefully they will be used someday. We still talk about getting married nearly every time I'm there. We lived together for a little over a year and we've been together for two years. I've known him for twenty years. We were highschool sweethearts but we went our separate ways for a long time and then got back together. We have the best relationship and were attached at the hip, we did everything together. He will be coming home to our house and his family has made it quite clear to me that they are not planning on being involved in his care after the rehabilitation because when I voiced my fears about being able to do it all his Mom, rather than say she would help out, said "well should we start looking for a skilled nursing facility". His parents are young and would be quite capable of helping out. I just wanted to scream inside. I wasn't saying I didn't want to do it, just that I might need some help. I don't know that they won't help out at all, but I think I will have to be very specific when I ask for any kind of help.

I think they want to be there for him, but at the same time they don't know what to do or they do things like they've always done and it aggravates Mike.

 

With me the only time he has been extremely aggitated is if I'm doing something that hurts him physically, stretching or something or one time I hit him in the knee by accident while putting the side rails of his bed up and he called me a not very nice name that he would have never ever called me before. I basically spoke to him just as I would have if he had not had the stroke and I told him that I would not tolerate him calling me names like that and that he better not do it again. Then he said he was sorry more than a few times and that was that. I think it hurt him just as much as it hurt me that he called me that. I'm sure I'm not the first wife or girlfriend to be called a name so I didn't take too personally but I did make it know I didn't like it. His Dad seems to take everything he says personally. He even told Mike that the way he acts towards the doctors and nurses is embarrassing. I don't think that Mike needs to feel that his uncontrolable outbursts of anger are an embarrassment to his family, but I do think he should be told that he should try to control the way he acts. I hope that makes sense. I think my biggest fear is that his parents always made him feel like he wasn't good enough for them and I'm afraid that that is how they are going to make him feel now, but I need someone else to be there to make sure he is being taken care of properly but when should I start worrying that there presence could be making his attitude worse.

 

I guess what I need to know is how to be tactful and tell his parents in a nice way to think about how some of the things they say in front of Mike might make him feel and to think about things that are offered such as the phsychiatrist before turning them down.

 

thanks for listening again, Tina

[spokangie]

Tina I am so sorry that you have to deal with that..I went through almost the same things with my husbands's family and we were married, but only for 3 years..So I understand fully what you are going through..

Their attitued towards his behavior is uneceptable,,They should be sat down and told that it is their actions that are causing him to be upset and suicidal..

Please take it upon yourself and speak to the Dr's without his parents around. If you are his fiancee, wife or girlfriend, you ar the one he will be coming home to..

Don't let them talk you into taking him to a facility, that will be the end for him then.. He doesn't sound like a violent person, he needs encouragment and love, not criticism..

Yes by all means do talk to his parents and explain to them that you will not tolerate any more negativity in front of him..They are not doing him any good acting that way..

 

Sure there will be the occassional outburst, heck, my husband sometimes yells out at me and it makes me practically jump out of my skin. I have not idea why he did it, so I ask, untill I figure it out..then we both laugh about it..

You know his favourite word used to be Damn..This was funny at the time because we wer in a Catholic hospital,,he he... The nurses would just ignore him, but not take it personaly..

I was told that they heard worse and seen worse..

But you are right, if you let him know that you will not accept that kind of behaviour towards you right away he will think twice next time..

That is another thing with survivors, how they react is out of their hands..nine times out of ten it is not intentional..

We are 30 months post stroke and sometimes it seems like he just came home from the rehab facility..We have our good days and our bad days..but we also have each other .

Are you going to be able to look after him yourself and do you know what kind of needs he will require..

How disabled by the stroke is he. Have you discussed with Occupational therapy what you will need for his care.

I know that my husband had to learn how to transfer into the car before he was even allowed to go on short trips with me.

Accept any care offered but on your terms, and only if they are going to be positive about his care.

 

Things will get better but you have to be strong for both of you now, not an easy task. No caregiver has it easy no matter how small the stroke is, nor the survivor that has to learn to live with his new self..

 

Take care

 

Angie :thumbs up:

[Guest joy]

Hi, Tina,

 

I think you said it really well in the last couple lines of your last post. Just tell them straight up and explain that when you get him home, you will need help with - - - -. Be as specific as you can and tell them you will adjust that request when you know exactly how things will be. You are a very special woman and he is fortunate to have you to fight his battles for him while he can't.

 

Being a care giver is not easy nor do you ever get as much praise as you deserve for it but when you love someone, it is the most rewarding position in the world. I would not take a million dollars (maybe two million but not one) for my time with Hans and hope it goes on for many more years. I'm only kidding about the money - his daughter, who won't come to see him offers me money every now and then and I'm seriously considering taking it the next time she offers.

 

Be sure to take care of yourself while you are taking care of your boyfriend. Even a good long hot bath is a stress releiver and feels so good.

 

Joy

[isokrzy]

Tina,

tricky subject, I'm a 4 year post survivor I don't exactly know the personality of your man ,but I used to say why don't you just kill me and put me out of my misery more out of comic relief from frustration, but then again I have a wierd sense of humor I was never really serious or needed to be on a suicide watch I guess just knowing his personality you maybe able to tell if he's serious. How many times have you said that without really meaning it. I take a lot of heat for my forwardness, but just because he has a better reason than a "normal person"for wanting to expire your probably being too critical of the situation your treating him differently which, I know he hates because you would have blown it off before, being in his shoes I would prob get more absolution if someone said, shut up don't, "talk stupid" It's prob me,but I'd say don't be an azz it may put a smile on his face I know some of my best friend would say, what fun would it it be killing your gimp *beep* I loved it they were treating me like my old self bottom line Tina all disabled persons only wish in life is to be treated normally and be normal especially those of us who were normal and were thrust into a world of challenges we never signed up for. Only you know the intamacy of your relationship, but if being serious doesn't get results try making light of the situation,may work? He may find it a relief from all the coddling from family and charish his relationship with you and those thoughts will disappear IMO

Kevin

[slomolapdog]

:forgive_me?:

Sorry Tina:

 

But the outbursts of emotion are very common. I found myself crying over my inability to even make menu selections.......honest! I'm going to give you a quickie overview of my stroke story so you can put my comments in perspective.

In February of 1994, I suffered two brain aneurysms, a cerebral bleed and a really bad stroke, all in one day! It left me blind in my left eye, deaf in my left ear, and completely paralyzed on my left side from the bottom of my foot, all the way to the very top of my head. The left side of my head and face was sagging and all feeling was lost. All nerves on the left side of my body went dead, including, but not limited to, my taste buds and throat, most, if not all my organs (left kidney, pancreas, left lung, and some other left stuff) frozen in place and unable to function at all. My left arm and leg hung limp like pieces of meat at my left side, totally useless. I was unable to speak and suffered from extended aphasia. I was in the rehab. hospital and in ongoing physical therepy for about two and one/half years and went on home healthcare as soon as I was released. By the time I left the hospital I was feeding myself again, communicating in various ways and slowly walking six miles, a day, behind my wheelchair. I put in between 12 and sixteen hours of work a day.

I started out being totally bedfast and crawled, drug myself, stretched, rolled, struggled, limped along in slow motion and finally walked holding on to the back of my wheelchair handles- with my "I.V.s'" dragging along on wheels atop a pole! I was "pronounced" on five separate occasions by the doctors who simply told my family "he cannot make it until morning." But I did keep defying all the odds and surviving. My Mom, who visited me frequently kept saying, "GOD has to have a purpose for your life!"

 

Today, after three brain surgeries and a dozen years, I am totally ambulatory and out amongst civilization and holding my own thank you!

 

If you hear no other thing we tell you and your unnamed fellow, know this one thing; IT DOES GET BETTER WITH TIME AND YOU CAN LEAD A GREAT LIFE IN THE FUTURE and both of you ARE LOVED by the members of the STROKE NETWORK!!!!!

 

Finally I would add a few words of experience, if not wisdom, in the form of advice:

 

***Each stroke is deeply individual and the eventual progress that is made in healing is deeply individual too. It is a marathon, not a hundred yard dash. With persistence, grit, guts, hard work, love, prayer, support and individual effort, progress IS made! (Although progress comes at its' pace, not yours.)

 

***Cooperation at all times with doctors, nurses, other medical staff, therapists and your caregivers is absolutely essential for your steady progress toward recovery. They are there because they sincerely care about you and your recovery. Give them the respect that you expect to receive from each of them.

 

***Be patient! Be patient with your brain, your muscles, your body and yourself. Give damaged tissue and physical and mental deficits from your stroke a chance to heal. Especially be patient with family and loved ones who are trying to help in spite of their fears and your fears. None of you has any real experience with this process. If you can get mad or just blow it off, choose to blow it off while you are healing. You can come back as a great new human, even better that the pre-stroke human you used to be. Take this opportunity and raise your personal behavior, rather than jumping in the muck with someone who irritates you. Be the better person!

 

***Don't worry about things too much or dwell on the stroke.....seek new things to occupy your thoughts and time that you truly enjoy!

 

Respectfully, with love for you and yours,

 

"Slomolapdog" :oohlala:

a.k.a.- Steve Charton

13 year survivor and happy mentor

Columbia, Missouri

 

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[caringfor5]

Hi again,

 

Thank you, thank you, all your responses are very helpful.

To give you some more info: Mike right now, is total care because of his strokes that hit both sides of the brain, we were actually told that he had many small areas of the brain that were damaged and when I asked one doctor he actually said they lost count of the number of infarcts that were present on the MRI results. But he is only just now been admitted to a rehab, before he was in a skilled nursing facility that specialized in ventilator weaning and the rehab department left something to be desired but we were only given the choice of there or a place closer to us that did not specialize in ventilator weaning so we went with the place that we thought would give the best chance for him to be off of the ventilator. Well that was the right choice for that but it took them forever to get him transferred once he was off the ventilator, which was only about 3 weeks after he got there He started talking and consitently following commands about two weeks after being there, but ended up being there for two months because of all the red tape to get through to get him transferred because Mike didn't have insurance. Sorry I'm rambling. What I was getting at is that he is total care, can't even sit up at this point on his own, doesn't have alot of movement in his arms but they do move (he can scratch his head reach for food but has a hard time doing this). He has movement in both of his legs but he has yet to get to even try to stand or anything, because the other place pretty much kept him in bed all the time, except for the 30-45 minutes they would take him to the rehab room and all they would do was stretches.

 

I do plan to take care of him at home, but will have to check into programs that will enable someone to come to our home during the day because I work Monday-Friday 9-5. I wish there was a way around this but there isn't any other family that has said they could be there during the day to help him. RIC has said that we will better know what he can and can't do later in his stay, which I have always believed with the right therapies he is going to improve alot farther, but I know that he is going to have to have someone at home with him so thats what I'm planning for. And really on the family not offering, I'm not sure that even if they did they would be right for the job considering that they are not always patient and the comments they make. I have made some hintful suggestions to how they could better handle Mikes outbursts and attitude while they are around him. Hopefully they will realize that what they say has a major impact on him and will watch it.

 

I try to treat Mike as I always have. I have been serious about the suicidal remarks though because when he says them he says them sooooo seriously. Almost like begging us to let him go but I have joked with him and said, well you aren't dead and you're not going to die anytime soon so you might as well get with the program. This made him smile because with us that was just how I would have handled anything else in life that he would have been grumbling about. I tell him how much I love him and that I don't want him to die, but I also try to be comforting because I know it must be very very hard to be going through what he is going through. Our personalities are to joke around with eachother, Mike loves to make people laugh especially me, so maybe I'll take your advice Kevin and just try to put a smile on his face when he gets that way.

 

I know that I was expecting the emotional outbursts from the things that I had read about stroke and from the knowledge I've gained from this site. But it has just been very hard to hear him say he wished he were dead, especially when I can't imagine my life without him. I just hope that now that he is at a place like RIC that he will start to feel like there is hope for a better future and that soon he will be home with me. I think one of the biggest things to bother him is that he is not able to come home right now. He talks about coming home all the time.

 

I guess what I want most right now is for Mike to have as much faith in himself and the improvement that he's capable of as I do. And for him to know that he will be loved no matter what and for him to love himself. I guess that that takes time too. I think I'll print out some of the posts from the survivors on this site, like yours Steve, that are so inspirational and can maybe make him realize that there is life after this, because maybe he thinks that his condition now is all the better he's going to get. I don't believe that and I don't want him to think that.

 

Well I've went on long enough, thank you again for all your replies, this site and all the members who have replied to my posts have played a major part in me being able to keep my sanity through this all. I would have been lost and would not know half of what I know about what he's going through and what to expect if it weren't for this site.

 

Tina

 

 

 

 

[bstockman]

Hi Tina, printing out the posts sound like a good idea. In Classic postings is "ALetter From Your Brain" I even printed it out and took to my doctor.

 

It is quite frustraiting not being able to do the things that should come natural. It takes some time to get a grip... accept that you can't do those things right now.. feels like you will never be able to do them, it is a very scary feeling. But once PT was started and I was learning how to control my movements and learning to walk... hope bloomed. I realized I had to WORK at this to make progress. I now walk un aided, have probably 90% use of left hand. I do walk with a limp and can't run anymore, but maybe in the near future.. who knows.

I am medically retired because of cognitive deficits, but I live a full happy life...

My best to you both

Bonnie

[ruthie65]

Hi- I had a bleed last February. and I was in ICU for 3 weeks on a ventilator and a feeding tube.I have a left hemi-paresis and I couln't even sit up on my own til late March. My feeding tube was not taken out til late April and I was not released from the hospital til late May. When I got home I cried all the time and frequently said athat I wished I was dead.The nuero surgeons had"saved my life" and I had always told my husband that I would not want that. To make a long story short. I take a combination of antidepressants and an antanxiety medication and I would not survive without them. This website is the other thing that keeps me going. I have a very loving supportive family, but this website family knows just the right thing to say. I say get him involved with it even if you have to read and type for him initially.I walk unassissted with a hemi-walker now and I feel better about myself than I thought I ever would. Best of Luck to you both! :yadayada:

 

PS- I hated feeling like I had no say in anything. I would just ask him how he feels about having his dad around.

[daughter_of_light]

Hi Everyone,

 

I'll just jump right in here and ask.......what do you say to someone who says they want to die? Not that I've been completely clueless and not said anything at all, but I guess what I have said is not making the impression I want it too.

Tina

 

hi tina,

 

i'm new here, that is true. and the replies i have read to your post/question are great; they really are.

 

i just want to add a few thoughts along with the wisdom that has already been imparted here. i have been on both sides of this fence.

 

my dad did indicated he would rather die- a physician/psychiatrist even got him to say it. on a bad or horrible day or coming out of so much trauma- it's only natural to wish it would all end, no matter what that really means. but then that feeling passed... he changed his mind- said he didn't mean it.

 

on the other hand, i suffer with chronic pain. have so for four years now. i'm only 40, sometimes i feel (and move) like i'm much, much older. some days when it's so, so bad that i can't even be moved out of the bed- i would gladly leave this body.

 

why am i saying all of this? because my dad and i both needed something to get past- to see past what was "in our face" at the time. we both needed (i still need) an incentive to live- to wake up even when it's bad, to enjoy it when it's good and keep going.

 

my kids are my incentive. they still need me... i can't think of leaving them.

 

i (and my family) where my dad's incentive. we pampered him, catered to him, spoiled him... made it all about him. helped him to enjoy what he could; comfort him when enjoyment was out of the question.

 

be that for your fianc

[slomolapdog]

Daughter of Light

 

You made an excellent post for only your third attempt! Keep up the excellent posts and you will be a true asset to those survivors and caregivers who need your advise in the future! Welcome to the world of posting for others that need a boost on the Stroke Network. Kudos and Bravo!

 

Keep It Up!

 

GOD Bless You and Yours,

SloMoLapDog