How do I get my husband to try to recover from a stroke?
My husband had a Ischemic Stroke on 12/25/08 on his left side of the brain, when he was 54. Most of 2009 was spent dealing with pain on the effected side (right side) and he had several seizures. He was finally in rehab in Aug 09 (it took so long due to insurance and the pain he was having - no one wanted to take him) for 6 weeks but they wouldn't keep him any longer because he didn't want to participate. He was still having pain and I found out after that he could not see out of his left eye at all. I have had his eyes taken care of - cataracts - which he didn't have 1 year prior to his stroke when he saw the eye doctor for a regular check up. I believe the pain is mostly taken care of because I can now touch his arm without him screaming but I do believe there is some pain still and I am trying to get the doctors to do something about that. He does not speak - aphasia and of course he does not walk. The question is does anyone know of anyway to motivate someone like this to try. He just wants to stay in bed all day every day and watch tv. Yes, he is on an antidepressant. He smokes and won't give it up and in fact I believe he smokes more now. I have to fight with him just to get him out of bed every 2-3 weeks to give him a shower. I think some of the pain he is feeling is coming from just laying in bed all day every day. I am so lost right now I am just not sure what to do for him or about him. Is there anything I can do to help him or is it just time for me to get use to the fact he will be like this until he dies?
Sorry to hear about this. Although I don't expect that he would make much physical improvements from the point of view of standard stroke recovery this far out from the stroke, a few thoughts come to mind.
First, is his pain under good control? There are many ways to try to improve the pain control. Medications, including gabapentin, amitriptyline, Lyrica, or Cymbalta, can be very effective. Other avenues to pursue would be massage, accupuncture, or Physiatry (Physical Rehab Medicine). I would ask your doctor about each of those options. Often, the non-medication avenues provide good range of motion and relaxation techniques that help the pain considerably. Even a referral to a pain clinic might give you some good thoughts for dealing with his pain issues.
Second, it may be that despite being on an anti-depressants, he is still quite depressed. In my experience, there is no substitute for having him see a Psychiatrist or Psychologist. Simply throwing an anit-depressant into his system is not sufficient. He needs a specialist to help tailor his therapy - activities and medication management.
Third, he may have post-stroke fatigue. This is often from central causes or from sleep issues. A safe stimulant medication such as Provigil could be very helpful, as could a sleep medicine referral to screen for sleep hygiene issues.
thank you for your help, can I ask 1 more question. I am being told because he does not communicate that Psychiatrist or Psychologist can not help him. Is there some type of specialty that I should look for when trying to find someone?
He is on Methadone right now, 10 mg every 6 hours and that has been what has given him the most releif. (we tryied all the other pain meds that you mentioned with no to little releif)We tried Physcial Rehab but he will not go on a consistant bases and they finally said that it just will not work. I will give massage or accupuncture as I had thought of those but just was not sure if it might hurt him. I just feel his "rehab" team just gave up on him very early on because the severity of his stroke (I was told right out, just be grateful he is alive) and then the pain and seizures. I am not ready to just give up and live with what we have so I am looking for anything that could help with his and therefor my quality of life. thank you for any help.
My husband had his first heart attack at the age of 41 due to complications from a birth defect in his pancreas. Since then he has had three more heart attacks and a series of strokes. After the strokes, he had to relearn to swallow, speak, write, and perform other skills we take for granted. The problem-solving area in his brain was affected, so he had difficulty distinguishing day and night activities and when he could drive again, he would make separate trips to the grocery store for individual items rather than getting everything all at once. Lists became vital.
Our two boys were in elementary school when my husband had his heart attacks and in high school when he had his strokes. I had them and our church members for love and support.
But the actual pain was shared between my husband and me. Unless you are a caretaker yourself, it's impossible to comprehend the pain you go through as the one who much watch the agony and long for improvement. There were other responsibilities on top of all my husband's illnesses: my mother-in-law was killed in a car accident and my father-in law had a heart attack and stroke. (Now my father is ill.) I have faith that that it's all in God's hands, and I can only do that which I am able.
I hope I can help some. I don't know if you have a family or any pets, but I'll share with you what has helped our family.
1) Communicate your needs: My husband knew that it was him and no one else; that I needed him. And our children needed him. He knew that from the beginning, and it was the motivation I held over his head. 2) Let go! I cried and rebelled in the shower where no one could hear. 3) Set goals. I was firm with my husband...I had goals for him and he had to show improvement. Oh, there were no threats; the goals were for us! Since we didn't know how long he would be able to live with the high fats in his blood, we set goals such as seeing both boys graduate from high school. Then, seeing them both graduate from college, etc. One is now married and the other is engaged...and we have two grandchildren. We now set our goals on seeing them at different stages in their lives. 4) Rearrange responsibilities. Life brings about change, and we need to adapt. My husband takes care of more household duties since I work outside the home. I keep him busy on remodeling projects that challenge him. Also, we bought another dog after ours died. He loves both of them and is responsible for their care, which gets him out of the house. Is your husband mobile at all? 5) Go to the Internet: I searched for information. Have you checked out www.aphasia.org and other sites for suggestions? Can your husband use the computer at all? 6) Make deals: For example, if you get out of bed every day, we'll go get a bigger TV. (Or something to that affect.) If your husband had a hobby, do it together (or for him in some way). 7) Having friends over is very difficult, I know. But if you have one special person who can help you and your husband, it would be a blessing.
Love him but be firm. This is a new way of life for BOTH of you, and he needs to know what you expect of him. Let him know that you accept his illness, but not his lack of trying to continue your relationship in a way that's acceptable to you. His concessions for a supportive wife and to show that he still loves you are: • Stop smoking. • Get out of bed. • Shower.
I will keep you and your husband in my prayers.
Amen to all the above. This is a challenge for anyone. My father (older but a perfectionist) had 3 ischemmic strokes and I watched him sink and I am watching him start to recover some function. I look, and tell him to look for the "little surprises". think baby steps. this is hard for most men, but if they can see they can do some things now that they couldn't do before, that sends a hopeful sign.
- what was the underlying reason for the stroke? if it was high cholesterol, look up Esselstyn's book on prevent and reverse heart disease (heartattactproof.com I believe it is). if it makes sense and you can do it, and he'll go along with the program... it's made a difference in our lives as well as the several heart attack/stroke patients this doctor had in his 12 yr study. I have become a believer.
- what was his personality before the stroke? You can't expect normal attitudes if he was previously depressed or angry. Play up the positive side... if he had a sense of humor, maybe funny movies or books read to him will help. Emphasize the positive... let him do what he can successfully do and point out what he can accomplish. He's a young stroke patient... and being almost the same age, I think I'd be going nuts thinking that I am worthless and hopeless as a person because my mind won't work for me like it used to. I can joke with my father and normalize some things which disarms the useless/hopeless attitude to some extent, but we were a family that could kid and joke together.
- Acupuncture has been known to help the underlying condition... but it's the patient that has to be able to go along with it (And, like any treatment, you have to find a provider you trust). My father and I talked about it 4 yrs ago, and I couldn't find the right person until last year... but that is when I noticed some changes. Mind you, we pulled out all stops and the acupuncture, diet and vitamin regime are all complementary treatments and carefully coordinated, but my father was already agreeable to going with the program
- Look for the book "Stoke of Insight" by jill bolte taylor, PhD. Excellent book. Love the way she describes how it felt like all the information she had was stored inside locked file cabinets and she didn't have the key to open the drawers. the information is in there..just hard to access right now.
All of this might be too much information, but if there is any glimmer of hope and you want to try, these are things I found. but above all else, take care of yourself and feel content in the knowlege that you are doing all you know and the doctors know how to bring your husband back. You need a life too, and I hope you have supportive friends, church, family and outside interests and hobbies that can energize you and recharge your heart to take on another day.
to answer some questions
1) we do not know the "true" reason - The doctors just told me 20% of the time they do not know. He was in good health with the exception of his left hip went bad from old injuries. He was in the hospital after the hip replacement when he had the stroke - 2 days after sugery. I found him at 7:30am and no one know how long he was that way, no one had been in his room for 2 hours.
2) he was depressed due to the hip issues but hopeful that the hip replacement would (after recovery) make life better. That is the part that frustrates me the most. He seems fine and smiles and tries to talk to our grand daughter when she comes over. (She is 3 1/2 years old and just doesn't understand what happened to her PopPop because as she says he just says DODO and he can't walk) If anyone could motivate him I would think it would be her. She is truely the apple of his eye. We cared for her up until the stroke (she was 23 months at that time. I had to have our daughter put her in day care and take on the responsibilties of being a mom after the stroke. I really can not add that my list of things to do.)
3) I am looking in acupuncture - was starting when on Wednesday he had another major seizure - lasted 45 minutes and had to say in the hospital overnight. He is starting to become cooperative again. Meaning he is not calling me every 30 minute and I can't figure out what he wants. So I now have some time back.
4) Just got that book it did look like it might help me but have put it on the list of things to do.
We do have 3 daughters but they all have families and jobs so they try to call me every 2-3 weeks just to see how things are going and give me someone to talk to, the one that we use to watch the grand daughter brings her over to spend the night as often as I can take it. I love her and I know she is good for my husband but she is 3years old and some times their needs conflict. I have had times where she insists I stay with her while she goes potty and my husband is in the bed having a bowl movement and the dogs are going on the floor. That is when I am close to lossing it and tell my daughter I can't keep her over night. That is the only way I can see her, my daughter will not stay to help.
No friends, he and I did everything together. Some people that we knew, call and say they will stop by but they never do. He can not move on his own. He likes to fish so I did put him in the wheelchair a couple of times and take him to the lake to fish. He tried and discoveried he can't do it with one hand and gave up. I do search the internet as much as I can to get ideas.
I know it sounds like I am just complaining and maybe I am. I am fine and can do this. I was just checking to get ideas. We are lucky in many ways. He had owned his own internet business, so I took that over and we are able to live on the income from it and I can stay at home with him. It puts us in the situation where we are not eligible for any help but we are living. I do know and understand there are plenty of people worse off than I am. I don't know that i could have handled this if we still had little kids in the house.
Thank you so much for your thoughts and suggestions.
HI MY HEART GOES OUT TO HIM AND EVEN MORE TO YOU.
I STROKED 16 YRS AGO AND A COUPLE THINGS WERE BROUGHT TO MIND WHEN I WAS READING YOUR UPDATES. FIRST IT IS ALMOST IMPOSSIBLE TO FISH ONE HANDED [ I HAD NO LUCK EITHER] ALTHO THERE IS A CONTRAPTION THAT IS SUPPOSE TO HELP REPLACE THE OTHER HAND. I THINK ITS AT LEAST A GOOD SIGN THAT HE GAVE IT A TRY BUT VERY FRUSTRATING FOR HIM WHEN HE FOUND IT TOO HARD TO ACCOMPLISH. ITS A SHAME HE CAN NOT GET AROUND. BEING ONE HANDED IS NOT SUCH A BIG DEAL AS NOT HAVING THE ABILITY TO MOVE AROUND AT WILL.
I WANTED YOU TO READ UP ON HIS PAIN. HERE IS THE CENTRAL PAIN SYNDROME'S CURRENT DEFINITION .... ONCE YOU READ THIS YOU WILL BE AWARE THAT ANY MOVEMENT WILL TRIGGER MORE PAIN SO THATS WHY HE JUST WANTS TO LAY THERE. YOU NEED TO MAKE SURE ANY THERAPY OR ACTIVITY SHOULD BE FOLLOWING HIS MEDS SO THEY CAN HELP KEEP HIM COMFORTABLE AND AFTER TOO, HE WILL NEED SOME.
I AM GLAD HE IS AROUND THE 3 YEAR OLD ...I AM SURE SHE BRIGHTEN HIS DAY.....BUT ITS TIME YOU STOOD UP TO FAMILY AND TOLD THEM THEY TOO NEED TO BE AROUND TO HELP YOU OUT. I KNOW HOW HARD IT IS TO CAREGIVE ALONE. A COUPLE YEARS AGO I WAS MY 91 YR OLD MOM'S ONLY 24/7 CAREGIVER. YOU NEED TO MAKE SURE YOU ARE GETTING ENOUGH SLEEP. AND REST. ASK PEOPLE AT CHURCH TO HELP IF YOU CAN. OR LOOK INTO SOMEONE BEING HIRED TO COME HELP TAKE CARE OF THE BATHING ETC. ONE NOTE ABOUT THAT. SHOWERS ALSO HURT CENTRAL PAIN SO HE MIGHT LIKE IT BETTER IF IT WAS MORE GENTLE IF YOU CAN. HOWEVER LIGHT TOUCH HURTS MORE THEN FIRM PRESSURE SO PERHAPS THE WATER IF ALREADY TOO GENTLE. YOU SOUND LIKE YOU CAN COMMUNICATE SOME WITH HIM. ADDED APHASIA ON TOP OF THE CPS PAIN MUST BE SOOOO HARD ON HIM. AND YOU.
HERE IS THE DEFINITION. DO MAKE COPIES FOR ALL WHO COME IN CONTACT WITH HIM. SO THEY CAN BE AWARE OF WHAT NOT TO DO.
BLESS YOU FOR BEING HIS ANGEL. HAVING BEEN ON BOTH SIDES OF AS STROKEE AND A CAREGIVER I WISH YOU BOTH MORE HELP AND PEACE. HUGS MARY SIMPSON FOUNDER OF CENTRAL PAIN SYNDROME ALLIANCE
CENTRAL PAIN SYNDROME A DEFINITION
A neuropathic pain with various names.....In an effort to get everyone on the same page term we use is Central Pain Syndrome We will often use "CPS" for short.
Synonyms: Also known as
Central Post-Stroke Syndrome Dejerine-Roussy Syndrome Central Neuropathy Posterior Thalamic Syndrome Retrolenticular Syndrome Thalamic Hyperesthetic Anesthesia Thalamic Pain Syndrome
Central Pain Syndrome is a neurological condition.
24/7 Sensations can affect us all differently, in different places on our bodies, and at different levels of pain and suffering.
Extremely difficult to diagnose. Often sending the patient to many doctors to find one that believes in their suffering. Finding a doctor who is willing to treat and work to find relief for the person that suffers with this savage pain becomes a miracle in the mind of those that suffer.
Causes: Central pain syndrome occurs because of injury to central nervous system... CPS can be caused by stroke, multiple sclerosis, epilepsy, Parkinson´s disease, toxins, tumors and trauma to brain or spinal cord, any diseases that eventually reach the central nervous system.
Sensations: It can be a steady, sometimes deep burning, aching, cutting, tearing, pressing, lacerating mixture of pain sensation. Pain may be moderate to severe in intensity.
CPS may be described as weird sensations like Burning: "A chemical, not a purely physical burn" , "bone cold", "wet" sensations, tingling, a "pins and needles", a " ballooning" sensation, throbbing, the feeling of a dental probe on a raw nerve, even metallic.
Intense skin reactions can accompany these symptoms, such as burning, stretching, tightness, itching, or a crawling feeling. CPS can be aggravated by any light touch such as the feel of cloth on skin making dressing an ordeal, as can the touch of a sheet or blanket. The touch of a loved one, may overwhelm the brain with the pain from CPS.
Intestinal reactions Gut pain, stomach nausea and vomiting can be a part of CPS.
Numbness The hands, feet, head, and trunk can be affected with a numbness that is painful, and does not offer any relief, only adding to the pain.
Onset CPS can begin from day one of the stroke/injury or can take months, even years to make it's appearance. Central Pain Syndrome can be a life threatening condition: It can often cause depression, anxiety, anger, frustration and hopelessness.. When a person rates the pain as a 9 or 10 on a pain scale, and there seems to be no relief in sight, with no hope or understanding or support from family and professionals, they may even come to feel that suicide is the only way out.
Triggers and Sensitivity reactions Stress, anger, depression. Movement, daily activity, ROM exercising, tiredness. Exposure to sun, rain, cold, snow, breezes, AC, drafts, unseen sun flare activity, barometer changes. Environments of warmer and cooler from the particular person´s comfort zone. Added pain or swelling. Light touches of another person, blanket, clothes, splints. Sudden movements: Yawning and other reflexive involuntary movements such as sneezing, being startled, loud noises, bright lights and even vibrations as from riding in a car.
Light sensitivity for the eyes, noise sensitivity for the ears can be triggers for higher pain levels.
7 Types of pain sensations
Any or all of these pain types can overlap. A person could have one or all of these that can come and go as time passes.
- Burning dysesthesia: A mixture of pain sensations in which persistent light touch is perceived as a thermal sensation. There are four overlapping subtypes.
Burning: "A chemical, not a purely physical burn"; "A mentholated burning"; burning it up with fire and acid".
Cold: "Like touching dry ice"; "bone" cold.
Wet: Wet and uncomfortable underneath the burning."
Motor or Kinesthetic Dysesthesia: A feeling of cramping and contraction associated with burning. "A terrible fatigue in my muscles, "A feeling of drawing, pulling, crushing."
Hyperpathia: Heightened response to a noxious stimulus.
Allodynia: Pain from a very mild stimulus. Can also describe referred pain. Can relate to touch, location, temperature or muscle loading.
Touch: "Light touch from clothing becomes unbearable after a few minutes, like an awful sunburn"; "Paper laid on the legs begins to burn unbearably after a minute or so."
Location: Touching the face might show up as burning on the outside of the forearm. Sitting long enough for the skin to burn can become burning out to the side on the legs and behind."
Thermal: Picking up a warm drink, it feels hot in the hand. Warm ambient temperature sensitizes the skin so that all the other pain features appear more easily."
Muscle loading: Movement makes the body unbearably sore. The day after exercise, the body might have awful feelings of lactic acid buildup. Lying in bed can feel like sleeping on rocks.
Shooting or 5. Lacerating: Sharp stabbing pains with an electrical quality.
Circulatory: A very common type in which circulation feels compromised. The feeling of pins and needles in parts of the body.
Peristaltic: Feeling of fullness, burning, cramping, nausea or distention.
Central Pain Syndrome can require a multidisciplinary team of pain specialists. Anesthesiologists, neurologists and neurosurgeons, rheumatologists, psychiatrists, physiatrists, family doctors, nurses, physical therapists, acupuncturists, massage therapists, and chiropractors all have different methods of treating chronic pain. www.painonline.org and www.painonline.com for more detailed infomation
I JUST HAPPENED ONTO THIS PLACE THAT HAS ADAPTABLE IDEAS. YOU AND HUBBY MIGHT LOOK AT THE GADGET THEY HAVE FOR FISHING. HUGS MARY http://www.christopherreeve.org/site/c.mtKZKgMWKwG/b.6247545/k.76E4/2010_Gift_Guide_for_People_Livng_with_Paralysis.htm?msource=email&auid=7367900>>
To the woman whse husband had the stroke in 2008 and had caaract surgery: my husband had an ischemic stroke also in 2006. It affected his left eye, he can no longer drive, short term memory loss, seizures also. I feel your pain and it's lie we are alone and no one other than people like you or I truly understand how this has destroyed our lives. Meaning us long with our husbands. There are no nearby support groups by us and I am so tired of researhing the net to talk to people. So should you or anyone else out there in the same situation feel the need to chat or just vent I am here for you. Whether you are the caregiver or the stroke patient, my name is Trish and maybe we can be there for each other.
my partner had a stroke three years ago at first he seemed very subdued now he will not do anything anyone says he is also very verbally abusive to me daily. i trry to remain positive and make him laugh cook him what he likes get him interested in things. all he does is moan and blame everyone else everyday feels like im trudging through snow the only time im happy is when someone else looks after him so i can escape sorry to be so negative but there is no light at the end of the tunnel just endless days and nights trapped in this prison for us both.
I am a recovering stroke survivor. Had my stroke 8 months ago, and hope that what I learned will help you. First "THE PAIN," My pain was extreme and no pain meds helped. It was finally determined that my neurolic signals sent by my autonomic system were fighting my purposeful signals telling my muuscles to move, so what relieved my pain also relaxed my muscles so they weren't always cramped up- that mecicine is Baclofen. Secondly the desire to work on recovery: I had a driving desire to work, this was assisted mostly by my visitors being amazed by the accomplishments I made since last visit, even though it sometimes was just a slight movement of a finger. I was often invited as part of a peer councling group to try to motivate those less willing to work, and found that no 2 people have the same thing stopping them. Some of their reasons were that all their former friends treated them like they were already dead, and others were afraid of falling, and others, like your husband had reason to distrust the medical community as a whole. He did have his stroke as a result of his operation. I would blame them for not protecting me from the clot, and I would distrust them if it happened to me that way. What was his motivation before his stroke? Maybe that would work now to play off that motivation. the Rehab staff differs from place to place on their ability and willingness to motivate. Perhaps you could get him an interview at a different one. The place I went to in San Francisco, CPMC, spent quite an effort to motivate the patients to work. Organic depression is a given after a stroke, and if your husband is like most of the men I know, they imagine a teenage girl who just lost her boyfriend when trying to imagine depression. For me, it was valuable to know that there is an organic cause and that I wasn't reacting like a young girl. My wife made sure I was constantly visited by friends and family and she coaxed them to treat me normally. A friend sneeking in a doughnut reestablished a genuine comorodory with one friend. (even though it took some effort to convince the nurse that the bad food is a great motivator.) YOU: My wife got angry when people would tell her to "take care of herself" when she was now responsible for so much, and had no time for herself. YOUR HUSBAND:I think it would help your husband to attend a stroke recovery peer group to be with people who are going through the same thing and hear from people who are past recovery. I think thetre is something to the old saying "misery loves company" and I learned a lot from those groups. I wish you and he the best of recovery. ONE LAST THOUGHT: My 2 grandaughters visited me and persisted on picking games that I could play with them. The fact that they accepted me as I was was quite a notivation to be more.
Bill C-K Thank you for your help. Interesting, my husband had a infection from an unknown source in December 2012, while in the hospital we met a new Rehap doctor, very young and full of advise. Anyway this young dr brought Baclofen into my husbands life and I can not explain the difference it has made for him he went to rehab where this dr works after the infection was under control and now my husband seems to have hope again, he doesn't complain nearly as much about the pain. He does have CRPS as well and the new DR is very sensitive to this and has come up with a plan to help that as well. But now the muscle spasms seem to be under control and my husband can and does now even come out to the living room to sit in his old chair and watch TV with me. We still have "bad" days but we are getting some good days as well. I am hopeful again, after 4 years of nothing to find someone that seems to care and feel that there can be some recovery even after this amount of time is a god send. I know everyone advised me to always look for a good doctor but it was very difficult to get my husband out of the bed to see anyone and when there was an emergency the ER dr did just the mimimum he could to get my husband out of there. But this was just the luck of the draw and we found someone that is willing to take the time to listen and try and help. My husband and I are hopeful. He still can not say words but you can tell by the smile on his face and his willness to try almost anything that my husband has hope again.
To the original poster: I don't know if you're still checking this site or not, but my husband had a similar stroke at age 50. It was massive, and they believe the entire language area in his brain was completely destroyed. He could speak only one word after his stroke for many months. However, we have persisted with speech therapy, and he works hard at it: between therapy and working at home he probably spends 2 hours/day working on rebuilding the language part of his brain again, and it has been almost 3 years. Due to the neuroplasticity of the brain, scientists have learned that many things can be re-learned again over time. New neuro paths are formed. My husband is learning to speak again. He can read again (silently and out loud), and can communicate in short phrases and sometimes whole sentences. His vocabulary is now up to hundreds of words, and he is working on verb tenses and prepositions now. We're not stopping until he is fluent again. So don't give up on the aphasia. There is hope! Your husband is still quite young.