Won't Help Themselves

[MistyMeanor]

Ok, a while back I came on here and posted about my aunt that had a massive stroke.

The Doctors said she could possible be able to walk one day, at the very least... move her arm.

 

Well it's been approx a year and half.

 

Let me explain first. My aunt has always been the lazyiest person I have ever known. Her husband has always done whatever she asks. We had hoped that after the stroke that would stop cause we figured she wouldn't want to do anything the doctors told her to do. Also she has never had to deal with any kind of pain her entire life (except maybe child birth) AND she used to be a RN! Lets face it, after a stroke it is a HARD FIGHT to regain some kind of life again.

 

I feel I am able to say this to a certain extent cause I am 27 years old and have been disabled since birth with Muscular Dystrophy. I have beat the odds and fought for my independance and life. I was told I wouldn't live past 6 years old. Here I am.

A twist to this story is she abandoned my family cause she didn't want to hear about or deal with my illness, it "upset her" too much. She didnt want to hear of our "problems". Now she is the one disabled.

 

So she is up at the most 5hrs a day. Otherwise in bed. She is taking (2)Nuerontin and 1-2 Vicodin 4x a day (for a year and half). Half of the time she is slurring and totally doped up. Not to mention, she NEVER excersizes anything and her husband don't make her. I recently broke my hand and with my disability I can't afford to lose my mobility in it or else it's gone for good. When I was watching TV I would just sit there and work my fingers and sit with my hand open.

She never even does this.

Also she never hardly is even up in her chair or sitting upright period. Well I know enough to know that narcotics, being immobile, and being in a lay down position is a recipe for pneumonia and other problems, because the narcotics are an immune suppressant on top of not moving.

 

Now her hand/arm is totally gone. It has atrophyed and drawn up. She can't even use her other hand to open it. At Thanksgiving she could take a couple steps with help, now she couldn't even move her bad foot to help get her in her chair like she used to.

 

Her thing is, oh the pain is excruciating... I am sure she still has pain, but she never is off anything long enough. We know she can be off, cause we have seen her once or twice go a whole day (cause she absolutely had to). Not to mention instead of going down, her pills are getting more and more. Because she is addicted and you start needing more to touch the pain and its a vicious cycle. Her own doctor tried pulling her off, and her husband threw a huge fit. So he gave her back the vicodin, and the doctor said she shouldn't be having such excruciated pain after a year and half.

I am also upset at her husband for GIVING it to her that often. It's almost like he is medicating her so she goes to bed and he dont have to deal with her for most of the day.

 

It's also getting to where he is leaving her home alone more and more. In bed a total invalid, sometimes without a phone (cause it wakes her when it rings)... mind you they live in the middle of timbuk two! It's like 15miles to the nearest house in the middle of the country and he will go to town for a few hours, or one time (that we know of) he went an hour and a half out of town all day, and she was home in bed. She can't/won't even roll herself.

 

Please let me know if I am way off... I wanted to talk to other stroke survivors.

 

Oh also, they started smoking umm herbal things they said in order to help her pain and get her off the narcotics. But they arent getting off the narcotics... now they are just doing BOTH!

[jriva]

 

 

Hi Misty,

 

It seems to me you've got two separate issues going here. 1) Your opinion that your aunt is responsible for her own lack of recovery, and 2) your uncle's criminal neglect/abuse of a disabled person. I won't comment of the first, but if the second issue were going on in my family, I would call social services, the police or both and report it so that the situation would get investigated. No person confined to bed who is unable to roll over or call for help should be left alone all day! Your aunt, in my lay opinion, probably also needs to be hospitalized to get her off the narcotics, then placed in a nursing home where she'll get better care than your uncle is giving her.

 

Jean

[MistyMeanor]

Thank you for your responses.

My aunt and uncle have been married over 30 years. They are in their early 50's. They both love each other very much, but I sometimes just think my uncle is overwhelmed. My aunt tells him to leave her cause she "dont want to go". Problem is, he does whatever she asks, and that means if she don't want to do phsyical therapy, they dont do it... if she wants her pills, he gives them... if she wants to stay in bed while he leaves... he does.

So what I am saying is I don't think it's a purposeful neglect, not that that makes it ok. I am just saying that I don't feel the authorities need to get involved.

They are very very poor and struggle just to get by.

 

My biggest issue is that my aunt does NOTHING and I do mean ZERO.

I am not doubting she has pain, but does two nuerontin and 1-2 vicodin every 3-4hrs. sound normal? They even had a home health care agency offer to come to their house to work with my aunt for FREE daily, and they denied it cause "she didn't want a stranger in her house". This would be fine if he husband made her work daily, but he doesn't cause she don't want to. All she does is sleep and stay doped up. We can't even have a decent conversation with her half of the time cause she is so out of it.

[Phyllis4732]

Does your Aunt see a neurologist? Perhaps one who is also a psychiatrist? If not, would she go to one? Being doped out of one's mind is probably more common than you think. Often it is the dr.s that do it by giving so many pills. Other times, it's the person who "demands" being heavily drugged. Whilerest is good for the brain, it won't exercise the muscles and it then becomes a vicious circle. Your uncle can't really do much. He must live there and is probably trying to keep peace. Does your Aunt get out to any stroke support groups or other social functions? It's a terrible way to live your life if she doesn't because she won't try. Maybe she needs to see others who are doing things- even coming here. Everyone is more or less in the same boat and has ideas that help. Support is very important and would definitely help. She's see people who are worse off and yet function much better than she.

I hope you get some good suggestions here.

[jriva]

 

 

Misty,

 

I don't doubt that your uncle loves your aunt. However, neglect and drug abuse---whether intentional or not---kills. Someone in the family needs to intervene on her behave and get your aunt evaluated by a good medical team, whether she wants it to happen of not. You are assuming that she has the judgement to help herself. This may very well NOT be true. Strokes impair judgement and the ability to reason in many cases, add all the drugs she's on and your aunt's thinking processes are probably screwed up big time. Your uncle is over-whelmed and enabling the drug dependence. Is there no one in the family, a minister or health profession who can get your uncle to understand the seriousness of path they are both on?

 

Jean

[MistyMeanor]

We have all begged and pleaded with her about her lack of attempt to TRY... her narcotics use... everything.

I have told her of me talking to other stroke victims and shes just like, oh really? Goes in one ear and out the other. Not to mention, she has seen me nearly dying and fighting for my life, and suffering. While she says she admires me for it, obviously it doesnt inspire her enough to do anything for herself... which I have to admit is a little insulting. We aren't wanting her to get up and walk, just to TRY... and TRY to lower her pain meds intake... TRY to stay up longer in her chair. When she's doing nothing which is 99% of the day... use her good arm and open her fingers on her bad hand. Ya' know??

 

She has no social groups, no nothing, not even a computer.

Her own kids (both in their 30's) have been both blatantly telling her and begging her to do something or else she is gonna end up much worse and may suffer another stroke.

She sees no nuerologist or anything. Just a VERY small town old man doc.

On the same note, she has not furthered anything cause they don't have insurance.

 

I agree she isnt in her right state of mind MOST of the time, this is why I said I felt like my uncle was letting her die because as her husband and for her well being, its called tough love... he needs to make her do things she may not want to do.

 

He has always been at her beckon call... go do this... go do that... whatever pleases her so she wouldn't have to "get up" or go out of her way. We hoped because of the stroke he would stand up to her... but still the same ole' same ole' only this time his enabiling her could be to her worst detriment.

[bstockman]

Wow, tough call. I admire you for your own struggle and independence. I am sure this is totally terrible to watch.

Is she signed up for social security or medicare, it would be some type of income and medical insurance, so she could see a doctor (specialist) I guess the old saying is you can lead a horse to water... but you can't make him drink. Sounds lke she has your Uncle totally undrcontrol ...

Bonnie

[spokangie]

Misty,,I don't think that your are quite getting the point here

.. For one thing you are not seing your aunt as a stroke SURVIVOR,but an unviling victim..She may have very well been a bossy person before..How she is now she may not be able to help herself..Has anyone tried to see how much damage and where the damage has been done..The brain is a complex organ and wherever the most damage is that is where the lack of funciton or even deccission making is impaired.

It affects the brain as some drug addicts, what is burned up is gone forewer.

You are a very courageous young lady to have overcome your illness and moved on..BUT there is a big difference between you and your Aunt..You did not have a brain injury, your illness does not affect how you act and think..

Take the medications that she is on,,that alone does not allow her to think for herself..

I agree with Jean 100% someone should intervene with your Uncle and discuss this with proper authoroties..family or not..She is being allowed to vegetate and destroy her organs by apeasing her with drugs..

Your Aunt, no matter how much you dislike her is still a human being in pain and turmoil. Something she can't help to overcome by herself..

Even if she was not taking all those drugs, her judgment and actions may very well be impaired by the STroke..

There are survivors that were nasty before the stroke and remained after the stroke, but even those are not to be judged because of their lack of judgment,due to the injury to the brain..

Letting your Aunt vegetate all day rather than see if you can get them both counseling is not productive..If you are so upset about how she is treating your Uncle and not co-operating with anyone,,then you should seek advice from the medical proffessionals that are giving these drugs..Did you know that you could become her advocate and work on the positive side, work towards helping her get better..

I know you said she doesn't want the help, but from what you are writing about her condition, I am not sure she has the capability to make those decissions...

She is becoming a drug addict with a brain injury..

The best place for her would be a institution that can help her get on her feet again,,It is up to you to see that your Uncle takes care of that..

Otherwise your complaining about what she can or what she can't do is uselles..and only upsetting to you..You have enough to deal with.

I don't mean to be harsh or mean. I just want you to realy read up on Stroke and brain injury..Untill you fully understand what it can do to a Survivor, you will continue to feel resentment towards your Aunt.

My husband had his stroke 2.5 years ago..In the begining he was not able to make any decissions. He could barely say yes or no, it took me 5 to 6 time back and forth, yes, no, yes no, to figure out what he realy meant..He has 1/4 of his left side of the brain gone forewer..It affected his speech, his cognitive,his walking, his balance..He is a grown man being nursed back to healt as a toddler..re-learnign how to walk,talk, stand,,you name it..But he is being taught with Love, caring, compassion and tons of patience..It is a very slow process and if you are not up to par for it then you should step aside and let your Uncle do the best he can..Sounds like he has given up too, it is easier just to let them alone especially if they are uncooperative..We all had those thougths, some have done that most have stuck by our loved ones..through thick or thin..It is not easy taking care of a loved one 24/7.Your time is no longer your own for many years for some of us that have a spouse with severe damage..

 

Take care and good luck..

Angie

[kkholt]

Misty,

 

You've gotten a lot of good advice here on strokenet - and it seems you have a tremendous amount of feelings and energy that could be used to help your aunt.

 

It took me a while to understand that things just didn't occur to my husband - the same way it did before his stroke. He had to be encouraged to consider options that normally would have been obvious before his stroke. As an example, when the therapist told him to do 10 repititions with his leg, it didn't even occur to him that he could do 15 if he felt strong enough until it was mentioned to him.

 

The other day he put the dog in my car because he didn't want her to chew up things in his car. It took me a while to get him to understand that if she would chew things up in his car, then she would likely chew things up in my car. It just didn't occur to him, until I pointed it out.

 

My point is, that your aunt may have suffered some damage to her brain that is contributing to her behavior.

 

Like I said, you seem to have a tremendous amount of energy and feelings for her - and she could certainly benefit from your help.

 

-Karen

[jriva]

 

Misty,

 

Your aunt is sitting on the railroad tracks and a train is coming in the distance. You

[MistyMeanor]

I came here to ask for advice on the situation. I basically wanted to hear from others if this amount of drugs were normal for a stroke survivor of 1.5yrs and any other advice. Not to be critisized and treated like I don't have a clue, and I can't "complain" cause I am not doing enough.

Great support for people here I see.

 

No she does not qualify for medicare OR medicaid. Don't ask me why.

 

Also I resent some of the comments made here.

I understand pain and disability. I have muscular dystrophy and have been wheelchair bound all my life and it only gets WORSE, just because I haven't had a stroke doesn't mean that I have no idea what she's going through... also I do not "DISLIKE MY AUNT SO MUCH" or else I wouldn't be here! Yes! I am upset about how things are, but that's because I CARE!

 

Also, the doctors have stated to us, the family numerous times that the stroke did nothing to her thinking. We knew her before and after the stroke, even if she wasn't on pain meds or have had a stroke she wouldn't have done anything. All of this behavior is not like NEW. But for the first time in her life she needs to WORK and do things for herself.

 

I have been on pain meds for extended periods of time... taking 500mg Vicodins and I weigh 50lbs. So I DO fully understand what it does to you which is why I am so concerned. I also know for a fact that this is HER, its always been her personality. She knows what she should do and is perfectly clear on it.

She says when approached about it, "you know that I promised myself after high school I'd never excersize again, I hate excersize".

Hell her memory is better than mine and I am 27.

 

Our family has had many meetings about this, but without criminally prosecuting someone we can do nothing besides try to talk to them. Which we have done over and over again. Her husband just gets *beep* off cause he thinks he is doing the best he can and we are butting in.

We can't call the home health care cause if it is denied by them, then by law they can't go anyway no matter how much we tell them to.

 

The thing we are thinking about is questioning the doc. If he feels like he is being questioned about the vicodin prescriptions he keeps filling and not weaning her off of, he'll pull her. But that won't be pleasant to come off cold turkey. We also don't want them to know we said anything. But the type of doc he is, because her husband will crawl his ass for taking her off... he will say the reason is cause family questioned him and there will be a friggen HOLY WAR and I am not kidding.

 

The Nuerontin is for her "central pain"... a friend recommended it... so her doctor prescribed it when she asked for it. Which I think is crap too.

 

Everyone keeps saying insist to my uncle and aunt. Do you think we haven't done that? You can't MAKE someone do anything they don't want to do.

 

I guess I have gotten my answer that the extended drug use is not normal and know if we proceed any further.

Thanks everyone so much for making us feel like it's all our fault cause we don't call the law on them, which I am so sure her husband being arrested or getting in trouble for anything else would really help my Aunt's physical and mental pain.

[swilkinson]

Hey MistyMeanor, don't get MAD, we are all trying to be helpful even if we don't always sound like it here.

 

I know a lot of people who have had less progress than my husband has since his stroke because they didn't give it their best shot, wouldn't keep at the exercises and as you have said that is part of their personality too.

 

Sometimes all a person can do is what you are doing now, look for help and then if that help is knocked back you HAVE given it YOUR best shot.

 

Don't go off feeling uncared for, we do care, that is why WE are here. I have been caring for my husband Ray since April 1999, through three more strokes and some TIAs so I know caring from the grass roots up.

 

AND I applaud you for caring. We aren't questioning that you care, and I feel as helpless as you do sometimes to FIX things.

 

So hang in there.

 

Sue.

[jriva]

 

Misty,

 

It was not my intention (or anyone else

[Schmidt44]

Misty,

 

I have a friend and her husband is on Neurontin 2 times/day plus he also takes vicodin 3 times a day for pain. Neurontin is sometimes prescribed for central pain. He also takes Trileptol for his seizures and Amiodarone for heart rhythm problems. I think I have even forgotten some others. This man is only 52 years old.

 

His wife recently talked to the doctor to try to get him off the vicodin and she is trying to replace it with Effexor. I believe they have reduced the vicodin to one pill a day at this point, but he still occasionally takes more. So, yes, I do know of someone who takes this much medication........and more.

 

However, He does not stay in bed all day. He goes to the gym, works on his computer to download music to his ipod, etc. He was right side affected and is only able to say two words, but he has a very sweet demeanor and is easy to be around. My husband enjoys playing cards with him.

 

All medications have side effects........just do a google search on the meds you mentioned.........also read the medications section of this board. Some of them are pretty scary.

 

All the members on this boards are extremely helpful. I think if you worded your question ONLY about the meds you would have received entirely different answers.

 

That being said.......your aunt doesn't seem to have changed much regarding exercise....she is not suddenly going to me motivated to do exercises if she never has her entire life.

 

This couple has many problems and they don't seem to want any help. If you don't want to intervene, then you are waisting your energy and just getting yourself upset. Strokes are very hard things for the entire family to deal with. I only wish you the best........congratulations on your own accomplishments.

 

Tamara

 

 

[spokangie]

Hi Misty,,Sorry you feel like you are being criticised and attacked. When one reads your comments they seem full of anger and resentment toward your Aunt, at least that is how I perceived them..What you are trying to do is admirable, but as you have said yourself "you can't make them do what they don't want to do"..So why are you still trying then..Maybe because you care too much. NO one said you don't understand pain and suffering, but you do NOT understand STROKE and it's effects on survivors. Just because you can't see it it doesn't mean that she was not affected by it..

I am sorry any DR. that allows their patient to become a Drug Addict does not understand Stroke..Has she been evaluated by a Neurologist, they are the ones qualified to say what damage and where it was done if any..If not why not have her see one..but of course you can't make her go..

So my advice to you is LET IT GO You have tried and all it has done is make you resent her even more. You can't change who they are or who they were before, and especially now..

My question is why is it upsetting you so much, do they live with you, after all it is only your aunt, and the person you didn't get along with before anyway..

 

It is not healthy the way you are harbouring this resentment and frustrationtowards her and your uncle..

If you feel that some of us have steped over the line, then might I suggest you read what you wrote, because you come accross very angry, and upset..

The advice given to you or suggestions are merely that, you can take it or leave it..we are trying to help the best way we can..This is a support site for anyone that is asking for some help and advice. Please don't judge us as being mean or not understanding your position..

What you need to do is focus on your health and let the other family members try and intervene,but like you said it is hopless..

Please read up on this site Jean might suggest some topics on personality changes after stroke, it might enlighten you a little and perhaps add some clarity to your dilema..

Thanks and take care,,

Angie

[jriva]

 

Misty,

 

Here's a link to a topic that talks about medications that are used for central pain: http://www.strokeboard.net/index.php?showtopic=1656

 

The articles on emotional effects of strokes that Angie mentioned can be found in our Classics forum. Here's a link to that forum: http://www.strokeboard.net/index.php?showforum=23. "Letter from my Brian" is one she probably means and another is titled, "Stroke Emotions & Effects." It's a short forum. You won't have trouble finding them.

 

Jean

[slmstrokeangel]

Take care of your own problems and just leave them alone. They don't want your help.

[bstockman]

Misty, there can be personality changes, emotional liability and depression. Some survivors lose motivation. It depends on what areas of the brain are affected and how much damage is done.

 

You have given this your best shot, and you have said they "don't" want help. Some one must want help before it can be given. Your Uncle seems to be responding in the only way he knows how.

 

You have much energy and I know you heart is really in this.

I admire you for overcoming your disabilities, I would love to see your energy towards something where you can succeed.

I undrstand it is hear breaking to see this, but I really think without any effort or desire for help you are just frustraiting yourself.

 

Sincerely hoping for a brighter future for you

Bonnie