roxy Posted January 19, 2008 Share Posted January 19, 2008 I just want to see if there is anyone out there who has experienced anything like what we are going through. My mom had her cerebrial hemmoragic stroke 15 months ago. She has severe brain damage and my dad has to do everything for her. She can't even hold a pencil in her hand bc her hands shake so bad. She can't walk bc she has NO balance. But the worst part is she really cant communicate much.........bc it takes so much effort, she really doesn't try much. But I can understand what she says when she does try. She takes adavan to relieve agitation but recently has BAD headaches. And Percaset isn't working. She feels bad 100% of the time and all she does ALL DAY LONG is lay on the couch under a blanket and tries to pull it over her head. She won't even do therapy anymore. She is going backwards, not forwards. My mom was totally healthy and a very lively person before this. She is only 63. It KILLS my very soul to see her so isolated and in constant pain. I wonder if this will ever get any better? God kept her here for a reason.........surely it wasn't to just suffer. I am an only child so I don't even have anyone to share this with except my dad and he won't hire any help so all he does is take care of her,.....basically his life is gone too. At least the life they used to have. It is soooo sad, I don't know how i am supposed to deal with this. The first 6months, you are still in crisis mode. Then the next few months, you are waiting, praying and hoping things can still get better. But now, dad is depressed, mom is in constant pain and I don't know what to do. I need my mom back for just 10 min......like she was to tell me what I am supposed to do. I feel like I have been set a drift in the wide ocean alone with a tiny raft...........what now? Anyone have any advice? I don't want to think about how much my mom is suffering bc all I do is cry then. But i can't even be happy bc then i feel guilty. And this isn't even about me........its about her. I don't know how to fix this .....I want to fix things. I just feel totally lost like I need some direction......any advice? anyone in a similar situation. Link to comment Share on other sites More sharing options...
bstockman Posted January 20, 2008 Share Posted January 20, 2008 Hi Roxy, Did your mom have rehab of any type? Is she seeing neurologist? Some survivors use some parkinson medication for shaking and it seems to help. Has the neurologist said anything about the headaches? Sometimes if pain medication is taken for headaches.. you get a type of rebound affect. Your body has a headace because it is not getting the pain medication.. There may be some better options for headaches than percocet. There are several things that can cause pain in a survivor.. muscles spasm, central pain syndrome, tone. Some have tried Neuronotin, Baclofen, various muscles relaxers.. some could cause more sleepiness or dizziness. Is there any chance of getting her into a Rehab facility for some tests and therapy. Please check thru the caregivers forums also.. Link to comment Share on other sites More sharing options...
dstraugh Posted January 20, 2008 Share Posted January 20, 2008 Roxy, You and your Dad need to speak to her doctor and explain all that is going on with her. Everyone's recovery is so different - sometimes it's a tossup as to what will work or not work. Link to comment Share on other sites More sharing options...
Founder and Owner smallory Posted January 20, 2008 Founder and Owner Share Posted January 20, 2008 Bonnie is absolutely right about percoset! Percoset causes rebound headaches and will actually cause addiction, it will feel like you need it but after you take is you actually have a terrible unbearable headache. My suggestion is to stick with tylenol, two pills, no more, every four hours. I have a history with severe headaches and I learned about this the hard way. I rarely have headaches anymore. You definitely need to get her off Percoset! As far as communication, check out http://www.bindependent.com/cgi-bin/shoppe...amp;key=snc101e With a communication board at least you could easily communicate the basic needs. Not being able to communicate is probably half, or more, of her problem. Didn't her previous therapists emphasize how important rehabilitation exercises are? The brain wiring has been short circuited because of her stroke. In order to form completed pathways the brain needs to rewire. This can ONLY happen through rehabilitation exercises! The brain must be retrained; it must form new connections. Lying on the couch all day causes no stimulation to the brain. She should be up in her wheelchair for a minimum of eight hours every single day. I think first she needs to replace the percoset with tylenol, though. You should seriously consider getting her a communication board, too. I would run all of this past her doctor but I am almost 100% positive that she needs to be in her wheelchair on a daily basis and should have an exercise routine to help her start recovering. Please show this to your dad! Link to comment Share on other sites More sharing options...
roxy Posted January 20, 2008 Author Share Posted January 20, 2008 To answer a few questions, yes, she was in rehab. My dad knows how important this is and is soooo upset that she is refusing to go. He knows she needs to get up off the couch and he tries everything possible. She will not sit in her wheelchair more than 30 min, long enough to sit at table while we feed her a meal. Everything is pureed, no more feeding tube. But yes, we try. I don't know if I am strong enough to make her sit in her chair while she cries and hollers........she is somewhat back to age 3 in temper fits. The neurologist have given us no hope and all they say is that she is lucky to have what she does have. So we are getting her a new one, but she can't get in to see him until Feb 21. We plan on calling often to see if anyone cancels and get her in sooner. These headaches only started around first of December. We don't know what caused them but tylenol doesn't work. Dad won't keep her on percoset - it isn't working anyway. I know that joining some sort of support group will help me and dad tremendously. This is very lonely and all of our family members have abandoned us. Link to comment Share on other sites More sharing options...
Founder and Owner smallory Posted January 20, 2008 Founder and Owner Share Posted January 20, 2008 Sounds like she definitely needs to see a psychiatrist, then. This behavior is far from normal. The psychiatrist will evaluate her and prescribe an anti-depressant, which could take up to four weeks to be effective. She will have follow-up visits to see if she needs dosage adjustments. Anti-depressants can be extremely effective and could bring her back to behaving rationalely. I do not understand why she will not stay in her wheelchair, though. Also, why won't she participate in therapy? Therapy is the ONLY way to any type of recovery. Does she WANT to remain with her current deficits? You say she behaves like a 3 year old. Are you using the type of psychology on her that you would for a 3 year old, then? I know you do not like to hear her cry but crying is a form of communication. What do you think about getting a communication board? Unfortunately, I really do not think many doctors will put much time in with her unless she is willing to cooperate, honestly. She needs to display a willingness to try. Most doctors I know are very compassionate but are also very receptive to patient attitudes. Link to comment Share on other sites More sharing options...
Founder and Owner smallory Posted January 20, 2008 Founder and Owner Share Posted January 20, 2008 I know that joining some sort of support group will help me and dad tremendously. This is very lonely and all of our family members have abandoned us. Are you talking about a local stroke support group? Can your dad use a computer? There are many more advantages to on-line stroke support as opposed to attending a local support group. Link to comment Share on other sites More sharing options...
myhome Posted January 20, 2008 Share Posted January 20, 2008 Hi Roxy, I'm sorry sorry to hear about your Mother's stroke, but I'm glad you've found us. The brain works hard at rewiring new nerve pathways, and it takes it's own sweet time doing it. I'm glad to hear that she is going to see a new neurologist, perhaps he can shed some light on the new symptoms, and make her feel better so she can get back to rehab. Hang in there. Link to comment Share on other sites More sharing options...
kanderson Posted January 20, 2008 Share Posted January 20, 2008 hi roxy, i'm sorry to hear about your mom's stroke and what you are going through. but steve is right in his comments. i would try and see a neurologist that specializes in stroke. they understand and can help her more. i am wondering if the headaches are a sign of something else going on. tough love is hard with our parents, but mom needs to be up and in a daily routine. a communication board is a very good idea also to help with her communication. yes its hard and sometimes painful to work hard in our recovery, but we have to do it to get any better. there are alot of meds now to help with a survivors emotions post stroke, and its trial and error til you find the right one. but its worth it for the whole family. i know how hard this is on you and your dad. its a shame the other family members have chosen not to help out, but that happens too with family and friends after a stroke. i hope things start to look better for you very soon. hang in there, it does get better with time and appropriate doctors, who can help you and your parents. i will keep you and your family in my prayers. keep us updated on how things are going. Link to comment Share on other sites More sharing options...
Yvette Snow Posted January 21, 2008 Share Posted January 21, 2008 Sounds like a very distressing situation for both you and your Mum. Accessing good health professionals is incredibly important in circumstances. Hard to find but ideally you need health carers who are able to treat your Mum as a person and not just a medical case and who are also able to understand that your well-being is important to her recovery. I do agree with a previous comment that your Mum needs to be assessed by a psychiatrist. It's possible that depression is playing a part in her non-cooperative stance. Don't give up, things can get better Link to comment Share on other sites More sharing options...
2ndChance Posted January 22, 2008 Share Posted January 22, 2008 Roxy: what country/county/city are you in? maybe someone here could recommend a good neurologist, physiatrist and neuropsychiatrist. Link to comment Share on other sites More sharing options...
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