Thank you for sharing this post and it will inspire many individuals suffering from this problem. My son who is 41 last week had a Mini Stroke he lost the use of his left hand and numbness down his left side. Why can my grandson see them…my son felt their presence. Today, October 26th , would have been my fathers 83rd birthday. He died this past June. My Dad had a severe thalamic stroke 18 years ago.
After his stroke, he learned to walk again but he otherwise rarely to never spoke and, when he did, he had no memory of who I or anyone else was, who he was, and he had no interest in anything and spoke of nothing.
At most he might ask for a cupcake if he saw one. Over 18 years I half expected him to die at anytime with several repeat hospitalizations for other ailments that would have killed lesser men. They had had a very loving relationship, plus my mom hated having others in her home. When my father first had his stroke, I came to hate the doctors who came and went with their false hope — this being kind of awkward as I was an MD myself in the middle of a residency. My Dad went to hospital 18 years ago with a heart attack, was given TPA a clot busting drug and the result was this massive stroke he suffered in the ER where no-one noticed the damage that had been done till too late.
But then over years he would come along on family holidays and events, always smiling if saying nothing. This past year before he died was very hard with severe bladder and bowel incontinence, and my mom rarely went anywhere with him, with Covid making this all worse. But we knew then he was dying and this was no way to go about it with all these hospital restrictions on visitors, So we brought him home. Palliative care came and, aside from putting in a IV port, was completely useless.
My sister and I gave morphine as needed for discomfort. He died from heart and kidney failure with us all there, my mom saying to him that he could let go — and he did. With Covid we had a Zoom funeral of a sort but no real gathering. Tonight we had my mom for dinner — us all wearing masks — and she seems fine. My kids 14 and 12 never knew my Dad, and my wife only knew him for a year before we moved to Halifax and then he had his stroke.
My kids and wife are nice and supportive but I feel alone with this feeling, this pang of pain that comes and goes and leaves me back to normal. But tonight I want to feel sad. I was googling related things when I found this site. Your pain can be endured — like the saying, if you feel like you are going through hell, keep going. Signed Anonymous. Thank-you for taking the time to write an account of everything that you have been through. My 85 year old Mom had a massive stroke on Sunday.
My 88 year old Dad is being really brave. She is currently day 2 of recovery so much is unknown about what that will look like. She had a bad stroke on Sunday around supper time. The doctor has not even come to see her. We want the morphine drip, no lingering, no heroics. She is totally unresponsive.
Please help me folks. I have asked for a family meeting, for the visiting policies during covid for palliative vs non , and feel like I am screaming in a bad dream.
Should I track the doc down myself? Any sane advice is welcomed. How is your dad now? My grandfather ,87 yrs, got a major stroke which effected his left side. He is only a little responsive. Otherwise very very drowsy. How has your mother recovered? I just wanted to say thank you for sharing your story, i lost my mum aged 76 last December Unfortunately she suffered a further stroke weeks later which left her bed bound, unable to talk and she had to be peg fed as she had lost her swallow.
Reading these stories has been so helpful. My story is long. My darling sister was 64 when she had a massive stroke on 31st March this year. We were so desperate to be near her or see her but there was nothing we could do. Eventually my younger sister and I with the help of our partners, managed to get enough money together to pay for her to be brought back to the UK via land ambulance. This was the first time we were able to speak to the medical team who were with her and get a better understanding of her condition.
She has no movement on her right hand side. She is doubly incontinent and spends most of her days in bed. She is in constant pain. The only thing she does for herself is use her left hand to feed. Physiotherapy and speech therapy have stopped, although a request has now been put through for these to be re-introduced. She is now in a nursing home and our visits are restricted to once per week for each person but we stand outside her room and have to shout through the window which is very difficult.
She was an independent woman, intelligent, extremely funny, very attractive, taking great care of herself, her home and her dog. She has two young grandchildren who she was hoping to see much more by returning to the UK and was looking forward to spending these latter years of her life closer to all her family. She has been robbed of any pleasures and I question why every moment of every day.
We hate leaving her after each visit as we feel we should be the ones taking care of her. The impact this has had on all our lives is truly devastating. I pray for a miracle, that she will wake up one day and be able to tell us how she feels so that we can do the right things for her.
I would love to know if there is anything more we can do or help she can get to make her life happier? This is the first time I have been able to put this into words knowing that you who are reading it, can truly understand much of this nightmare and it helps to know we are not alone. Love and let go.. Thank you guys for sharing your experiences with your loved ones. I was on a video call with my grandma on the 15th March She is not a person who openly shares her feelings..
How I miss her.. Now she is on a feeding tube. Unable to talk.. No more diapers. I am hopeful for more brighter days. I would love to chat with you more. My Dad had a stroke a month ago and what you said about your Grandma is mirror image of what has happened to my Dad. My heart is breaking not knowing if I will ever hear his voice again. Please lend an ear. Hi My mam is years gone October. She suffered 3- strokes ischemic stroke then an adjacent stroke and thalmic brain stem stroke.
Mam has not regained consciousness and only blinks her eyes to voices. Mam is tube fed and lost the ability to Swallow. Prior to the strokes mam was a very fit lady and self cared. I now worry for the future and mam not making any progress or recovery to live a meaningful life. My aunt got stroke in january, she remained bed ridden for all the time, developed aphasia, stiffness of the muscles of the lower limbs, she was also catheterised all times,but had appetite.
Is this the trend of stroke. My dad had a major stroke 11th April this year, and last week was discharged from hospital for palliative care to a nursing home. He cannot eat and is struggling to get fluids in… My sister and I are basically going to have to watch him as he starves to death and my heart is breaking so much…. He is not in pain, which is great, but he is kind of with it mentally not fully so not sure if he knows the severity of the situation.
I feel so much for you all and know what you are going through……. I found my mother on the bathroom floor at 6 a. She did not respond to me speaking to her and her eyes did not react to my hand waving over her. The doctors told me she had had a massive hemorrhagic stroke and because of her age 90 she would not recover.
My mum was a very strong willed and robust for her age. Basically, she was put straight into palliative care with no feeding tubes, no water and left to die. She held on for a week. Life is very cruel sometimes. We visited her every day, holding her hand, talking to her and she would respond by squeezing our hands tightly and pulling my head close to her.
So sorry to hear about your mother Alex…and sorry for your loss…. We need to change the law in this country! Let people have a quick comfortable, pain free ending! If my mom comes home I will be making sure I give her what she asks for! To watch the suffering is so traumatic. My mother was independent and joyful and dancing the day before she fell and broke her hip. I would take her pain in a heartbeat… I feel for everyone who has shared in this space.
With my father I was able to be with him every day, holding his hand and making sure he was as comfortable as possible and that his needs were being met. The pain in this case is my own excruciating pain of knowing my mother is going through this and going through it without the love and care for family. As they say, pain is inevitable, suffering is optional.
In working on that… While doing the best that I can to be there for my mom over the phone and the iPad that they bring into her and talk to her doctors and nurses and ask questions and advocate as best I can. And finally, I do this by reminding myself I have to focus on taking care of myself. I need to be well and strong to be able to advocate for my mom in the best way possible.
My thoughts are with all of you and your loved ones. My mom suffered a massive stroke in May of this year that left her with left side paralysis and aphasia. She is now bedridden and it is very heart-breaking to watch her daily struggle. The hardest part is when she asks for water to drink and I have to explain to her that she can no longer swallow. Mom has always been active and lively.
Just a year ago she was driving herself and living her best life. I am so so sad. For the most part in her mind she is still fine and active and does not realize her situation and I guess that in itself is a blessing. She is still her old self, talkative and lively. Rambles on all day, in an altered state of reality. Anyone else have a similar experience?
So sorry to hear this Alex. We are in similar situation in that last several days with my mother having a major stroke. She is 79 but has had her share of health issues the past several years. Doctors said the scan showed significant damage to right side of her brain and due to her age and blood thinners they could not do anything for her.
So she was pulled from the ventilator and moved to palliative care, with meds to manage her secretions and pain. She is dehydrating and soon her blood thinners will expire. We unrealistically are hoping for a miracle as we fail to prevent her from dying from other causes.
Our heart and prayers are with all of the people and stories here and everywhere. My mom has done everything for me and her boys. So hard not to be able to do more for her. Some ppl live to now a days w very swift active lucid coherent minds and still fairly physical too!
And there is no right or wrong way to grieve, anything you do and feel is ok. My heart hurts for all of the accounts above. My mother in law had a stroke in the ICU about a week after having bad heart attack but she had begun on the road of recovery when she had stroke a day ago. My mother had a massive stroke may 10 she is in icu for 4 days angiogram only done for her but in brain there is a swelling Doctor said that operation needed after 48 observation After use of medicine swelling become less so doc said now no need of operation After 1 week she can little walk she can sit she can say only one word But iam very afraid of my mother health is she will be ok in future?
Pls replay me. My father had a massive right hempishere IS on May 13th age He spent 2. They removed the ventilator after 2.
He expressed a strong wish not to be reintubated. They wanted to do a trache but he refused one. I was allowed in to ICU to confirm his wishes. They documented his wishes. I felt this was goodbye so I left the hospital distraught. The next day he was sitting up and on room air. They moved him to the ward that evening.
This week has been a rollercoaster. I have had three calls to come in, dropping everything to be by his side. Having to leave again to feed my baby who is breastfeeding and is not allowed in hospital.
They made a decision to stop active management today because his heart is under too much strain. My heart is totally breaking. He is having semi-lucid visions.
Talking about the past. He knew his sister, he knows me. So he is there, but also somewhere else. This has been the most difficult thing — not being able to hear what he is trying to say. I feel this time is about him and not about me, and all I need to do is sit quietly and hold his hand. He seems to be holding on. I wish I knew what was going to happen, the up and down has been incredibly hard.
Am I grieving or not? I want him back. Dear Niamh, What a difficult position to find yourself in!. I think you are doing all you can…being there by his side as much as you can….. It is difficult ….. It is a roller coaster emotionally, but you must just hang in there. Be assured you are really doing the right thing loving your dad in this way.
Wishing you peace in all the ups and downs. He was put into a nursing home for rehabilitation but was rushed back to the hospital after a week with pneumonia cause of him asperating. My son was diagnosed with a Grade 5 AVM when he was It was on his cerebellum, it was explained to us that direct operation was not recommended because the results would very likely be death or huge disability.
Embolization and Gamma Ray treatment ensued over a period of 5 years, my son was externally completely well, underwent studies every year and had 6 interventions.
He never lost a single capacity, traveled extensively, studied abroad and it seemed that he had overcome danger. He had no outward symptoms of what was to happen except — now that I recollect — a certain back pain which we all associated with the time he spent on his computer or working on his art.
What I did notice was that there was a form of depression that set in when he was diagnosed. Whether that was because he knew that the risk was very high, that a chemical unbalance ensued or whether just knowing that he had that in his head made him uneasy. After his stroke he spent two days at the hospital, he never woke up again or had a single reaction. He was being kept alive but according to the doctors who performed all kinds of tests on him, he was gone.
After those two days we were told that there was no possible reaction and that it was best to disconnect him, there would be no emerging from that state.
In reading all that I have seen above, I now see that perhaps it was the best. He had lived a full life without a single debilitating sign — 33 years. It is the most terrible thing in the world to have to accept his passing, and I just wonder if he knew what was going on when it happened, just how conscious he was about what was to come. I shudder to think what it would have been like if he had regained some form of consciousness and was completely disabled, with time ahead of him that would have paralized all his hopes and dreams, that would have made him thoroughly dependent.
My 93 yr old father had no quality of life. Blind, deaf, some dementia and very poor mobility needing help to walk very slowly. He was left with weak left side and face droop, no speech and very poor swallow. We were asked to chose between feed tube for feed and meds or no tube and keep him comfortable on end of life. Knowing he hated the poor quality of life he had the decision was easy.
No tube. We were told he had weeks rather than months and they would keep him comfortable. Five days later the chaplain phoned and said dad was sitting up and enjoying ice cream and trifle for lunch. I thought she had the wrong person so ignored her.
But I worried, so at five pm I phoned the ward. I was told that at 3. Normal life! He had poor quality before, what would normal be after? I was asked if I would agree to feeding and meds agin. I was annoyed that I found out via the chaplain and that I had to phone 5 hours later to get the information. My mum had such a bad choice to make, but had come to terms with dads end of life care that she had mentally said goodbye to him and had regained some light in her eyes.
No one has said yet the prognosis of recovery or chances of more strokes. No visiting due to covid of course, so all discussion is done by phone.
I just want what is right for him. Thank you so much for this post. Her speech came back slowly and she had trouble finding vocabulary words for about four years. She now walks with a limp and her right hand shakes. Dutta has trained herself to use her left hand. Dutta asked her law firm to let her return part time, but there was no part-time role at the firm.
She found an administrative job and faced a difficult choice: If she worked for more than a year, she would lose her disability eligibility. Lupus flares up unpredictably, so she quit to keep her insurance. I had nothing to look forward to. Dutta now serves on two boards, including the board of the Center for Independence for the Disabled in New York, and volunteers in the court system for six hours a week from home.
That helped my confidence as well. Avi Golden was a New York City paramedic about to start medical school when, at the age of 33, he had a stroke during a heart surgery in Although he still has balance problems and weakness on the right side of his body, he graduated from a wheelchair, to a cane, to walking unassisted. He helps paramedics at two hospitals and participates in training sessions about aphasia for police, firefighters, and emergency medics.
He also organizes sports trips for people with disabilities — rock climbing, kayaking, and the like. In a study with data from to , 8 of 57 patients ages 16 to 50 were sent home without proper treatment after a misdiagnosis of vertigo, migraine, alcohol intoxication, seizure, inner ear disorder, or other problems.
Medicare covered only a limited number of therapy visits per year, so she chose speech therapy and therapy for her arm and hand, rather than her leg. Honigsberg, who once worked long hours as an acquisition editor, now has a busy yet flexible schedule of volunteer work. I have cognitive problems. You can help protect yourself by getting at least two and a half hours of aerobic exercise a week, drinking alcohol in moderation, quitting smoking, eating less red meat and more vegetables, nuts, grains, and seafood, and treating high blood pressure, diabetes, and circulation problems.
His determination led to his speedy recovery. Learn about the types of strokes and their symptoms, diagnosis, treatment, and prevention. The likelihoods are the annual survival probabilities, and these are given in any standard life table Box Table. The columns of the life table are standard, as defined in government, actuarial, and scientific sources. We restrict attention here to the basics.
To begin, it is important to recognize that the life table is completely determined by the annual mortality rates m for each age x. These are the inputs to the table. The outputs are all other columns, including the remaining life expectancy at each age x, denoted by e x.
That is, the average survival time of a man age 70 in this population is about 14 additional years. Also of interest in the life table is the so-called survivorship function, column l x , which shows the average number of people alive at each age x, following an initial group of , alive at age If we divide every entry in column l x by the initial number of ,, the new column will start at 1.
We can then plot this new column of values vs age. This resulting survival curve is shown in Box Figure 2. Box Figure 3. Histogram bar chart of survival times for men age 70 in the general US population. Consider, for example, a large group of men age Obviously, any one of them could survive only a relatively short time, live a long time, or fall somewhere in between. In sum, we cannot predict actual survival times with any reasonable degree of precision. For example, the general population life expectancy of males age 70 is 14 years, but death much sooner or instead after twice as long is entirely possible.
Similar patients can live very different lifespans. For example, 1 identical twin may outlive the other by 30 years. It is not merely difficult; it is impossible Box Figure 3.
Prognosis requires matching the person in question to the survival of similar persons. Medical doctors routinely perform this sort of comparison when making diagnoses, identifying treatment options, and deciding upon surgical techniques. In the simplest life-expectancy context, we merely identify the appropriate patient groups for comparison, then report on their empiric survival. In our experience, most medical doctors feel confident in providing survival prognoses only when a person is at the extremes of the survival spectrum—when the prognosis is poor, on the one hand, or very good on the other.
When prognosis is poor and medical intervention is frequent and often invasive with long hospital stays, patients and family may already essentially know the prognosis, and it need not be quantified with any precision.
In that case, mortality risk and life expectancy may be said to be normal, and general population figures can be cited, as appropriate, to support this statement. In the remaining intermediate cases, which are quite common in practice, the clinician may not have any known guideposts and, thus, may be reluctant to offer an opinion.
For example, clinicians know that smoking reduces life expectancy, but few would know by how much, or how it depends on the number of pack-years. More difficult still are cases with multiple complex risk factors, such as heart disease, diabetes, and obesity. A busy practicing clinician would not be expected to have or to develop the scientific expertise to make accurate calculations of life expectancy in every case, even in their own medical discipline.
Furthermore, survival in some conditions has changed much in the past 20 years, making knowledge gained in medical school less applicable. Such calculations are squarely in the realm of medical directors, life actuaries, underwriters, and medical researchers.
Yet some medical doctors especially oncologists do routinely use specific literature from their given field of expertise to provide at least approximate survival figures. We believe that the same can be done for stroke cases. The Table reproduces the summary life expectancy figures from the aforementioned article on long-term survival after stroke.
That is, amongst a group of similarly situated men, the arithmetic mean, or average, survival time is 6 years. The fact that the life expectancy for this group is less than the corresponding general population figure of 14 years indicates that Mr. But this single life expectancy figure does not specify with certainty exactly how long he will live. In the present context, we are concerned with giving an accurate and helpful description of survival that is tailored to the case at hand.
Broad statements such as those offered in the Case Study, although correct, are not entirely helpful. More precise statements are usually needed, although presenting the average for the group may not be sufficient. What is required are all the details concerning survival. These are embodied in the probabilities of surviving for 1, 2, or more years, which are, in fact, given in the commonly known survival curves, frequently presented in the medical literature Box.
The calculator produces survival curves based on any combination of age, sex, and disability. As noted, age and severity of disability are the 2 factors with the largest effect on survival after stroke.
Sex is also included because doing so is standard in most survival analysis, and indeed being female is a modestly positive factor amongst persons with mild or no disabilities following stroke. In the Figure, there are 7 curves, one for each of Rankin grades 0 to 5 and the general population GP. Also notice that the curves for more severe disability are uniformly lower than those for less severe disability, reflecting the lower survival at each age and time.
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