This patient support community is for discussions relating to stroke, rehabilitation, ability to eat/swallow, alertness, bowel/bladder control, depression, motor skills, nutrition, orthotics/braces, pain, prevention, senses, and spasticity.
My grandfather had an ischemic stroke last Friday. The doctors weren't able to use blood thinners because he was outside of the three-hour window. They sent him home and said rehabilitation wasn't possible because of his age (88) and the severity of the diasability (he doesn't recognize family members, has no control of his bladder, and doesn't know the function of household objects such as the telephone). My question is about what's next. I realize no one can predict life expectancy -- but are we talking days, weeks, months, or years? From everything I've read, it sounds like with the blood clot still in his brain, he will probably have another stroke at some point.
In all the research I've done, this is the one piece of info I can't find anything on: What happens to someone who's sent home with no rehab? Despite the fact that he doesn't recognize family members and can't communicate, is there still some part of his brain that would benefit from seeing his children and grandchildren?
My dad is in shock and doesn't want to fly out there to be with his father because he doesn't think it will matter. If I had facts on life expectancy, I think it would help spur him to be there.
Thanks so much for any help, links that will specifically answer my question, etc. (Again, I've done a ton of reading and research but nothing seems to address my question.)
My mother had an ischemic stroke in 2003. She is right side paralyzed, cannot speak, read nor write. She can walk, but it is with a lot of assistance. We moved her in with us and hired caregivers to help take care of her. She gets PT 2 times a week and the caregivers work with her doing range of motion, standing and sitting. She is incontinent. She has survived these 4 years, and still smiles and greets people who come to see her. She is showered, dressed and taken out in the wheelchair every day. It is not a great quality of life, but she does seem to accept it. She was 87 when she had her stroke and the Drs. said it affected 70% of her brain. She is very fearful, has a lot of anxiety, but I know she likes being in our home rather than a nursing facility. I would not give up hope on your grandfather. I cannot advise you on how to handle the situation of his care, but if he was strong before the stroke and had no other medical problems, he could live for many more years. Just know that the Dr's never give much hope for the stroke elderly..it is sad but true. You can hire caregivers and there are Physical Therepists out there that will work with elderly stroke patients..you have to really talk them into it. You will hear a lot about Medicare Guidelines, which tell you they cannot continue PT unless the patient shows progress, but too many of the Physical Therepists are willing to "write off" stroke patients. It is not fair, but you can find a compassionate one, we did. Even if they just get your grandfather to sit, stand, shift his weight from side to side and do range of motion with his arm and leg, it will help him and help you in cargiving for him. Let me know if I can help in anyway as I have been through this with my 90 year old mother.
Thank you so much. That's not at all what I was expecting to hear! I assumed the continued presence of the blood clot in his brain meant he would probably die within days or weeks.
With your mom, were they able to use blood thinners to get rid of the clot?
What you're saying about care is extremely helpful. It was hard to believe they'd send an extremely disabled person home without any rehabilitation, because it seems to me that SOME kind of therapy, like the kind you're talking about (shifting weight, etc.), would be good for him. Right now my cousin (his granddaughter) is living with them and providing 24-hour care, but she has no medical background. Do you know of any online resources that might help her in her caregiving? Something that details the type of thing you're talking about... the types of activities and therapy that would help him.
It sounds like a private nurse would be best, but for complicated family reasons (uncle who has control of the money isn't willing to spend his inheritance on caring for his parents...) I doubt that will happen.
Thanks again for taking the time to respond to me. I really appreciate it.
You asked if there was somewhere online where you could read about caregiving and caregivers and support for caregiver...yes, go to Family Caregiver Alliance..they are wonderful and helped me tremendously..they know everything about caregiving, agencies, stroke, Alzheimers etc...very nice organizations, based in San Francisco, CA. but that does not matter, they can help you where ever you are.
You will hear it a lot "all strokes are different", so you can't say that if one person lives for 10 years, or 4 years that another person won't die right away. I am only talking from my experience with my mother, so I am not a medical person. First of all, no they did not give my mother the clot busting drug TPA, they said they did not know the exact time of the stroke and it would be too riskey, not knowing her full medical history and her age. I have heard that after a certain age, they do not give TPA. I do not know if this is true of all hospitals or just the procedure of some. I have heard mixed comments on this. TPA is riskey and unless the patient is young, and they know the exact time of the stroke, they usually don't give it. It can cause a brain bleed which would end up in death, so they just let the patient "stroke out" in other words they let the stroke take its full course..which of course leads to all the disability you are seeing.
I live in California. The usual procedure here is they keep the patient in the hospital for about 3 days until he is stable..then they transfer him to a nursing home which is half rehab and half long term care. All stroke patients are different depending on the severity of the stroke. Usually there is brain swelling which takes some time to resolve and most important, the patient is very, very tired for a long time which often makes rehab difficult. When the patient goes to rehab, they will test several things, can he sit up, can he stand up, if he can stand they can put him in what's called a "standing frame"..kind of like a podium that holds him up on his feet..then if he gains strength they start the usual PT, range of motion (meaning moving his affected limbs for him if he can't do it) keeping the muscles moving. If he does not show progress at all, you will hear "medicare guidelines" a lot..that means medicare won't pay if he doesn't show progress..they then send the patient off to long term care or home and leave it up to the family. It is unfair, but they do not put a lot of effort into the elderly stroke patients..they tend to "kiss them off."
If your grandfather cannot do rehab, or does not show progress and is sent home, whoever is taking care of him definitely needs help. There are agencies that provide this kind of help everywhere..they are expensive..usually charge $20-$25/hr. or $150 plus for 24 hr care. Medicare will pay for some home care, but not much..usually just bathing a couple times a week and a home health nurse until the family can take him to a hospital as an outpatient in a wheelchair. Have your cousin check into agencies to begin with..then try to hire caregivers on your own. A lot of Certified Nurses Assistants in nursing homes would love just one on one care instead of having to take care of 10 people in a nursing home..you will also probably pay better than the nursing home or agency. Even though an agency charges the family $25/hr. they usually only pay the girl about $8-$10/hr...so if you offer $12-%15/hr. you will get help. You have to interview carefully...go a little with your gut feeling, if the person does not feel right, don't do it, ask if they have taken care of stroke patients before..most have.
Don't try to do all this at once or by yourself..start with agency help..then go looking for good caregivers you can hire on your own. Also if you feel your grandfather is up to it, don't be afraid to demand some rehab in the nursing home..even if it is just standing and sitting..he will need this skill later even if he can't walk to do transfers from bed to wheelchair to toilet etc.
I hope some of this helps. Keep in touch. If there is noone to take care of your grandfather, he will end up in a nursing home. This is a decision your familiy will have to make.
My little sweetheart will be 102 years old in March and she was given up by the naysayers many years ago. She continues to improve, and her verbal ability gets better every week. "I'm so glad to see you!" she said today. (I was gone two days". "I miss you so and worry about you so." Every day is an extremely high quality day with lots of laughter and smiles. At one time she was pretty much in the shape your relative was. So never give up.
I might add you can expect a great loss of memory that will, in all liklihood never return. Large portions of the life experience will be lost in the emptiness. But remember the brain has a great deal of redundancy, and it is possible for other areas of the brain to "relearn" to function, to include limb movement, regaining bladder and bowel control and most importantly of all -- sentience --- the ability to love and to kiss and to hold and to smile and to laugh and enjoy each and every day to the fullest. And this can happen in the late nineties and there can be remarkable and magnificent improvement. When she was 99, a R.N. had my sweety pie in a darkened room without a wheelchair and she was staring at the cieling, unable to respons to a word, or move her hands or arms, or speak a single word, or react in any way to the presence of a human being, ands their advice was to "let her die with dignity". At that time I told the R.N. the sum total of what she knew about rehabilitation, strokes and medicine in general, would fit in the anal pore of a parameceum. And she was the head nurse in charge of rehabilitation at one of the biggest and well known rehab scam facilities in the United States. The important thing is to get the situation stabilized, and you are fortunate they kept your loved one off coumadin. Search my previous posts for my experiences. And don't give up!
I might add, she could not recognize her sister until three months ago. Suddenly, everything came back. We went to visit and she clearly knew who she was. It was ver discouraging to her sister not to be recognized and very rewarding when sentience returned. So you cannot assume that sentience won't return.
The inability to identify common household items after a stroke is common. In the case of my 101 year old sweety-pie, it is only now returning. For the first time she can identify a telephone, reach for the handset and answer it: "This is ____. Who is speaking". This was a great event. Only in the last month. She can't recognize a cell phone as a telephone nor operate the channel changer. Her ability to communicate has been increasing every month. Today she asked: "What day is today?" Then she asked. "Did you go to church?" When I nodded "yes" she continued: "What church?" and then "Where is that located". Then: "I'd like to go to church." When I brought her prune juice she said: "That was very nice of you." This is very impressive considering that for a long time she could not say a word or a sentence. Then, for a while the words were uninteligible. "Uaaarghle". Strange frightening sounds that were frustrating attempts at language. That was the case when she was in the rehab nursing facility that stated she could not be rehabed and we would be wasting our time to do so. The uttered sentences and interest in the surroundings are very recent. Today, she asked her aide: "Where did you go?" when she left the room. This may not seem like much, but it is recent, and represents a quantum improvement in communication skills. The brain has an amazing ability to repair itself. I worked in hospitals and nursing facilities and they tend to give up entirely on anyone of advanced age. Every case is different and the type of damage can vary greatly, but age, in and of itself, should not be a concern.
One other thing. The fact that people who have massive strokes cannot communicate or respond DOES NOT MEAN THEY ARE NOT AWARE OF CONVERSATIONS IN THE ROOM OR LOVED ONES. There are other neurological problems such as Alzheimers, which cause a permanent loss of recognition, but strokes are in a different category. A stroke patient does benefit from visits and especially from physical contact, such as holding their hands or wrists, cuddling, kissing, and being spoken to. Don't let anyone tell you otherwise. They are trapped inside a body and can often understand much of what is going on without being able to respond in any way. When I worked in a hospital I would encounter stroke disabled unresponsive patients who were treated like pieces of meat and when I would whisper in their ears "blink your eyes rapidly twice if you can understand me" the eyes would often blink twice. DON'T GIVE UP!
Thank you for the encouragement and enlightenment from your past experience with stroke elderly. It helps me keep hope for my mother 4 years post stroke, still unable to speak other than yes and no, and still totally right side paralyzed. We are hanging in there and have her at home with caregivers, but it is a tough road. Caregivers often call in sick, or have some sort of problem and can't be here, so that totally ties my husband and I down. I am retired, he still works from home, but we are unable to go out at night or go on any type of vacation...it gets very frustrating. I cannot afford to have caregivers all the time and we do not want one 24 hrs in the house. I cannot leave Mom alone with caregivers in a different house, as she is unable to tell me if she is being cared for or not..she has to be with us. She still recognizes her family and I do not have the heart to put her in a nursing home. Thank you again for the encouragement, it helps.
I am pleased you obtain some value from my posts. It sounds like you are doing a terific job. There are no "right" answers or "right" treatment. As I mentioned, I provide a variety of morning supplements, that I believe are helpful. My experience is anecdotal, however there are a number of studies that suggest these are helpful. Daily supplements of vitamin B-12, folic acid and zinc. Daily supplements of DHEA. 25mg shouldn't get you in a lot of trouble, but start at 5 and work your way up, increasing 5mg every week. Omega-3 capsuls. A teaspoon of cod liver oil daily. Pomegranate capsules. Coenzyme Q-10, 180-600mg. I would go easy on the vitamin C, unless you pay strict attention to hydration, because it is a diuretic. I have the aide mix these with oatmeal and maple syrup and they go right down. The cod liver oil is the flavored kind. I recently purchased a plastic flower to go on her right plastic shoe, to help her identify left from right. Asside from the fact she thought it was food at first, she likes it very much. When she began to speak a little, her treatment from the aides increased ten thousand percent. I had a problem with cleaning fluids. Her small bathroom is adjacent the bedroom and I BANNED the aides from bringing chlorox anywhere near the area. One aide clumsily spilled a half gallon container and did not notice the fumes were virtually asphyxiating my little pal. Lack of situational awareness. I decided I would be the only one to use chlorox after that. And I don't let them use aerosol air fresheners. And there is no odor. I have a small exhaust fan that can exchange air with the outside that is easily turned on and off. I have become a believer in the use of the dry-erase boards, and making very large simple messages to complement verbal communication. They develop another part of the brain. These boards come in several sizes (Staples has a variety), and I have several sizes readily available. I try every day to have her write on the board. Every day she would wave her hand and shake her head "no". After eight months she would say "no". Twelve months and she said: "I can't." After a year and a half of absolutely positively nothing (nada, ungotz), she wrote "I have pain in my leg." Hardly legible, but clear enough. Voila. But it was kind of fun to get her to try, and she was very pleased with herself. Distinguishing food from non-food substances remains a problem. Play-dough goes into the mouth, for example, so that didn't work out. But she knows what foods are on the plate and heads for the whipped cream or the rice pudding! I now keep the rice pudding out of sight until she has had at least some of the main meal. Lately she has drifted into a "two meal a day mode" with a mid-day snack. But her appetite is now phenomenal. Organic vegi barbecue and macaroni and cheese last night, with cottage cheese and apple sauce with whipped cream, and a small bowl of split pea, and the platee were clean. I wonder where it all goes? Macaroni with cheese is a winner, and also creamed spinich with lots of butter. And micro-waved pancakes with loads of organic butter and maple syrup! My sweety-pie is the pancake kid! Does she smile when she gets pancakes! She loves all the things that aren't good for her. I also like to give her corned beef hash at least once a week, which has a consistency that is helpful to develop the ability to swallow. Not too crispy, though. As many stroke patients, she has a distored circadian rhythym, with two days of sleepiness and two days of alertness. These cycles make stroke patients very difficult to evaluate. When the walk-in nurse observes a stroke patient, she rarely stays long enough to view them through an entire "cycle". Training for nurses in care for the very elederly and especially the stroke disabled elderly is lacking and inappropriate, with few exceptions, unfortunately. I understand there was a recent conference to establish a curricula and a specialty for nurses in caring for the elderly stroke disable. It isn't really rocket ship science. I get upset when I see the care being provided in the nursing homes and hospitals, where we seem to rediscover the wheel every week. The respiratory therapists, for example, usually don't munderstand that the stroke disabled cannot clear secdretions well, and provide a "bubbler", when oxygen is prescribed (usually inappropriately, by the way). Fluid accumulates in the lungs and either causes pneumonia, or else some muckety-muck walks in and decides a "trach" is necessary so the secretions need to be suctioned. Bingo. Another unnecessary trach and a quantum deterioration in the quality of life for the patient. That was my last fight in a hospital visiting a patient. They ended up calling security. "She's drowning from that bubbler," I stated. "Well, when her doctor comes tomorrow we'll bring it up". "Honey," I said. "Let me make something clear. I'm not giving you a suggestion to call her physician immediately and disconnect that bubbler. I'm giving you an order." Hospitals often have very rigid protocols that do not take into acount the needs of the very elderly stroke disabled, sad to say.
Thanks, both of you, for your comments and suggestions. Yes, I realize you are not medical professionals and can't give medical advice but it's still good to hear other people's experiences.
My dad did end up flying out there, and though my grandpa didn't appear to recognize him at all, I told my dad exactly what you said, caregiver -- we have no idea what's going on inside his brain. For all we know, he may have been happy on some level to see his son, but unable to express it.
One of his grandchildren came to visit and brought her baby. My grandpa lit up and said the baby's name! On a daily basis, though, he doesn't know any of his children or grandchildren.
Thanks for the caregiver resource online. I'll send that along to my cousin who is caring for my grandparents.
You need to get legal help to get his money away from your uncle who cares more for his inheritance than for his father. You may find a lawyer who will take his fee when your grandfather's money is made available to him. At the very least contact AARP. They have a unit that advises on this sort of thing.
Your cousin should DEFINITELY not be taking care of her grandfather 24 hrs/day. I paid only $10/hr for quite decent caregivers in both TX and CA. Some were community college students, others were Cal State students, often pre-nursing or pre-physical therapy, a couple were professional caregivers. My experience with them is similar to vja's, that they're not terrible consistent (they have exams, they get the flu, their children get the flu, they find another job), so I used a service 2 days a week and my own people the other days. That way if one of my own people cancelled I could call the service and they could usually provide someone on short notice. Obviously, the replacement wouldn't be as much help as the regular, bcs I'd have to explain and oversee. But anything beats 24/7.
Even if hospital or rehab unit won't provide therapy, Medicare will pay for (usually twice weekly) outpatient therapy if it's prescribed by a doctor. Some rehab units even have half day programs that Medicare covers. True Medicare won't continue to provide care if there's no progress, but it takes a couple of months for them to decide there's no progress, and anyway there almost certainly WILL be some progress for a while, once he gets over his immediately-post-stroke tiredness. Even when Medicare stops covering PT & OT, you can get them to start again about 4 months later, unless the patient is on Hospice. Don't know how big a town your grandfather lives in, but there may be more than one rehab units, and some may have outpatient program that Medicare will pay for. If not, just call all the physical therapy clinics and private physical therapists in town until you find one who accepts Medicare and will give him some help.
Having caregivers in your home is a real pain, but necessary. Regulars are better as you don't have to be there 8 hrs a day to train them, but they also have lives and problems and so there are times you have to have a new one and be there with them for that day anyway. Also I agree wtih tressa999, you have to call all the PT people you can until you find a compassionate one that will at least be willing to try with your elderly stroke patient. Most of the PT people associated with hospitals won't even give it a shot..they will try maybe 3 times and then tell you there is nothing they can do and you will have to do your best at home and live with what your patient can or cannot do. Then you will find one who is at least willing to do range of motion and try to get the patient standing and maybe even taking a few steps...they are the ones that are saints and are willing to try anything for some improvement..you have to find a compassionate one and not a PT person who just wants to work with 20 year old athletes that sprained their ankle.
My father was also 80 when he had his stroke approx. 10 months ago. AFter about 3 weeks of rehab, the insurance co. also said that he was unrehabable. They said that he would always be a hoyer lift patient, and so on. Well we continued to fight to get him back into rehab. He was eventually able to go from a nursing home to an acute rehab facility and from there to home. He is able to transfer with just my mother's help. He has become continent again, and is doing pretty well. His worst part is still his short term memory. He just can't remember what he did five minutes ago. He also at time thinks that he can walk.. So I would't listen to what the ins. co, or therapists say. If they had their way, my dad would probably still be in the nursing home... He still goes to outpatient therapy 2 times a week. We still hope that some day he will walk again....
I am glad to see that there is a forum of this type online. My father (81) just had an ischemic stroke after having 3 of the bleeding type strokes. After his third stroke, he had at 80, he has been incontinent, bed ridden, blind and very emotional. We were also told that my father, due to his age and acute disabilitis was deemed "unrehabalitatible". My mother who is 71 is his primary caregiver and as loving as she is, I think she babies him, because she feels bad that he keeps having these strokes. Because of this I think getting him to do things on his own is even more difficult. My father is in a hospital bed, that has a electrical air mattress, in his home in the family room. They have a hoyer lift to assist in putting jim in a chair for a few hours each day, but he wears Depends and does not take part in his personal care. Can anyone recommend a book or web site that can help people that are this debilitated from their strokes? I would like to see some kind of structure, as far as our family providing physical or occupational therapy. By the way, we have had "hired help" come and assist our Mother, but for the most part we have not gotten very skilled people. I would appreciate any comments or recommendations to try. Thanks.
If you have a hired caregiver purchase a children's "marble" notebook and have them maintain a meticulous daily log of all activities, people entering and leaving the room, bowel movement (consistency), feeding time, hydration (fluid intake in ounces), medications when they are given, exercise provided (limb movement, for example) appetite, and if there is no speech yet to log every spoken word. There should never be an erasure. Only a single line crossing out a mistake (like a ships log). Review this book with them every day and the end of the tour. If you have them get receipts, get another marble book and have them scotch-tape receipts to every page with a date. Not only will this help you at tax timne, it is IMPOSSIBLE to review a handful of receipts crumpled in an envelope. Paint the patients room and purchase fresh drapes and hardware for the door. A fresh, bright room encourages cleanliness. I put a brass knocker on the door so whenever anyone wants to come in they can use this and not disturb privacy. You should have a land line in the room and not just a cell phone. The land lines display the address on the dispatchers board, and in many cities appear on a screen of responding fire angines and ambulances. Help can get very confused in an emergency, particuliarly if there is a language issue. Drill them to use the land line to call for help.
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