The Challenge of Caring for a Stroke Patient

My wife died of a stroke at 36. this is very familiar to me.

What a day for me read about UTI's [me] and just came back from a stroke victim at his house. He's very lucky that he's coherent because he said it happen in his brain. Aside from how the company he worked for wants to cut ties to him, he's more upset he didn't get a "Get Well" card from the company or his co-workers. He donated and signed all those cards for other co-workers but yet nobody remembers him after 17 years of company service. "The Challenge of Caring for a Stroke Patient"?, ... that the patient still has friends and people who care for him ... so when I showed up at his house, I paid him back a million smiles in kind. Try not to die alone.

As someone that cared for, alone, both of my parents when their health declined I can commiserate. This stroke victim was very lucky to have a partner that stuck it out. I dated a woman once that I was sure would bring a date to my funeral. There are more people out there that would show their true colors when facing a similar situation and disappear rather than disrupting their lives to help. I know, my three brothers were nowhere to be found when my parents were dying. After the funerals they all got mad when asking for their “share” of their money. I was smart enough to ask my parents to consider who was there for them in their hour of need and adjust their wills accordantly.

I am in month seven as a caregiver following my husband’s stroke. I’m in my 40s and my husband is 52. I never, ever thought I would be here. With all the talk of support for caregivers, I have been shocked at the lack of support and resources for people my age or situation. If I was military, retired, or a stay at home caregiver, there are numerous places to go during the day where the average age is 70. But I have a career I love and my job provides the insurance that has saved us from sure bankruptcy. It is bad enough the new normal and balance required for care, work, and children. If the fastest growing sector of stroke victims is mid-40, I am here to tell you the resources have a long way to catch up. United Way? No. American Stroke Association? Couldn’t even return my call. The rehab facility had a slew of support groups at 10a on Wednesday’s. Awesome. I appreciated the article because finally there was someone else who was closer to my age. I could complete relate... for the first time in awhile....

No matter what disaster befalls you, there are support groups of those who have experienced what you are going through. Peer support groups are the BEST source of information, support and even humor. Better than the medical community. And you will learn how to deal with the medical community, insurance companies, and your friends and family. Thank god for the internet. There you can find the resources you need as a caregiver and as a survivor. I have several rare 'conditions' for which I would NEVER meet another person with that condition where I live. On line I have found the most amazing help.

I knew 2 people who had a stroke. A young woman who had a stroke during brain surgery to treat epilepsy and my dad, who had a stroke at age 80. I met the young woman 10 years after her stroke. It was not at first obvious. I later noticed her right arm hung straight down. Her stroke changed her life, her career, her residence and her hair. I'm sure it changed her personality, too, with regard to her sense of time, patience and impulsivity. With Dad, his stroke affected him deeply. It impaired his speech, vision & ADL . It changed his personality, too, making him more fearful. He did well, tho, with rehab and therapy. He was a tough guy until the heart attack and lung cancer, which was operable, but his health at that time was too frail. Stroke threw me into a foreign world, an alternate universe. I had some guidance from a social worker who was board certified in gerontology. I appreciated reading this article from the caregiver's point of view.

I feel so sad upon reading this, yet so grateful. My mom had a massive stroke in 1992 at the age of 74, and lived 9 and a half more years. As a family, we gave her the best care we possibly could, particularly my father, but we too were told that she would never recover and as a result, perhaps we gave up on helping her to improve and perhaps did not maximize her chances of a better quality of life. This article and the books mentioned should be required reading by every medical and mental health professional who will ever care for a stroke patient and family, and copies of the books should be given to each patient’s family. I still get angry when I think about some of the humiliating things that were said and done to us and to my mom. And I also remember some of the wonderful moments when my mom gardened with me (one-handed and in her wheelchair), or laughed out loud at her grandchildren’s antics, or whispered “I love you” (all she could do besides yes and no) to my dad. Thank you, Ms. Brody.

"She also cautions loved ones 'not to listen to doctors who say the person won’t ever recover or that recovery stops at six months to a year... '" It is astounding that there are people who say this. As a physical therapist who worked on the brain injury unity of a major rehabilitation hospital and who teaches future PTs at a major medical center: recovery is never-ending. I'm not saying it is not hard work (it is - recovery requires hard work - my motto is "miracles take a lot of hard work"). Essential ingredients for recovery include the human spirit and support for when those times get tough. And they get tough. It is a whole-community affair, and every person's trajectory and pace and plateaus are different. But no one should ever project a limited future for a person post-stroke. I don't necessarily blame them - they're usually not physical or occupational therapists or speech language pathologists: the infantry on the front lines of pushing recovery. Thank you for this article.

But what happens if you are alone, with limited money?

I would like to recommend another book that was a godsend to me after my TBI. The Ghost in my Brain by Elliott Clark. He articulates so well the symptoms I suffered physically, cognitively and emotionally, as well as finding the right therapies and supports. I still feel, 2 1/2 years out, that the old me is walking behind me and can't quite catch up. Just ordered Stolen Identity recommended here by another reader. Thanks for this series of articles.

As my husband’s care giver for 9 years I can commiserate with all caregivers. No two strokes are alike. Paul was 55 when he had a massive stroke. He didn’t smoke, a ski patroller and an avid cyclist. We had our own business in window displays and special event design. All that changed in an instant. Frontal lobe damage, judgment impairment, behavioural changes of the compulsive kind are just a few. He has global aphasia and apraxia( lack of motor planning). He is right side deficit and is in a wheelchair. My psychology background helped me to research these changes. In spite of it all he still has a brilliant sense of humour. He’s been in speech therapy, still struggles with words which cause no end of frustration. A person with aphasia is like an iceberg. We see1/8th and the other 7/8’s is below the surface knowing exactly what they want to say but it comes out completely different. It’s wonderful to hear of complete recoveries. Sadly a lot of survivors struggle with their words and disabilities for a long, long time. The difference to me so far is incredible, but, a person who doesn’t know him would think his speech is limited. Sad because he’s extremely bright and was exceptionally articulate. Yet we survive. Every day brings different challenges and it takes a lot of pluck to care for someone at home both emotionally and financially. Yet I wouldn’t have it any other way!

Thank you for another timely & inspiring perspective on Stroke. Sadly, too many people are clueless (or in denial) about their own personal risk factors, and the signs of someone having a Stroke. I survived an Ischemic Stroke in 2012. While my overall recovery to date has been good, the hardest part is getting others to understand that recovery varies by person. People see me walking & talking and their takeaway is that a Stroke is not a serious affliction. Because of this, I tell people that I had a Brain Injury. That at least gets them interested in asking ‘really, what happened?’ Then I proceed to edify them about Stroke, and how serious they should be about managing their own health. In closing, I’m sure that many of my fellow Stroke Survivors would agree — I wake up every morning, glad to still be here!

I have been taking take a long walk in a local park every morning since retiring. About five years ago I noticed a couple (early 70’s) walking everyday at about the same time as me, and the woman was clearly recovering from a stroke. She held onto her husband’s (?) arm as he helped her to slowly walk, and sometimes there was/is also what I presume to be a grown up son. As I saw them every day I was able to observe the incremental changes in her gait and the slowly returning animation in her face. I was always silently cheering on her progress. I am happy to say that today she walks normally and they seem to converse like any other couple out for a stroll. It has been heartening to see.

These insights would be helpful dealing with any condition effecting Brain Cognition.

Simply put, a stroke is a brain injury. With brain injuries, no two are alike and as one recovers anything is possible. During my traumatic brain injury rehab ('90) as an inpatient at Memorial Hermann TIRR in Houston's TX Medical Center (where Rep. Giffords rehabbed after being shot) my roommate survived a devastating stroke which prevented him from lying in hospital bed due to the spasticity and what was tantamount to an adult-sized playpen for him to sleep was constructed. There were stroke survivors in TIRR's outpatient rehab; just like any other brain injury - anything is possible. For the caregivers, reach out to national nonprofits that serve the disability community to find out about the availability of respite care. The national United Way Help Line is 2-1-1 (https://www.unitedway.org/). The website allows one to specify by zip code for services available in the area. This is an invaluable tool for both.

And another very helpful new book for both stroke survivors and caregivers: Identity Theft- Rediscovering Ourselves After Stroke by Debra Meyerson. A well-written and informative read sharing Meyerson's story of stroke and especially emotional recovery. Meyerson, a formerly tenured Stanford professor also uses her skills as a social scientist to interview other survivors, family members, medical professionals and more to create an excellent and important book.

Another great book is ‘My Stroke of Insight’ by Jill Bolte Taylor about her own recovery after a stroke. She is a neuroanatomist. Also, worth listening to her Ted talk.

Very insightful and helpful. Thank you. Just one thought when a person who is able becomes a person who is disabled there is a lot of anger towards all people who are able. They resent that others have what they lost. But they know they need help so they are reluctant to express this anger freely; usually they only express it the closest loved ones. My father had a stroke and was in an assisted living facility and would call my mom daily and go on awful tirades. Finally with the help of a social worker we decided mom should tell him each day when she couldn't listen anymore and then just hang up. Amazingly he adjusted and understood. He would call and rant and after a while she'd hang up. He knew he could call tomorrow and rant some more. My mother also began to laugh as she said his speech became clearest when he was in a total rage.

Stroke is a sudden bolt out of the blue.A life transforming event for the victim & care giver. It’s helplessness with a Capital H. Why the Platelets coagulates (ischaemic) or why the Brain Artery ruptures( Haemorrhagic)is not exactly understood. It may be necessary to prophylactically take precautions by incorporating on a daily basis Crushed Garlic,exposed to air,with its skin intact to help in keeping platelet from coagulating & blood thinned. Again Turmeric can also be used with a pinch of Pepper. This, till we can find a better natural remedy.

Speaking as a speech pathologist, it's not a little concerning to me that an article such as this can be written without once using the word APHASIA to describe the difficulties that Ted experienced with communication following his stroke. This is the clinical diagnosis, and speech pathologists are the targeted experts for helping people manage these issues. Perhaps at least some of Ms Baxter's caregiving challenges might have been alleviated with better health care support and referrals to appropriate providers. We actually do more than tell people to use yes or no questions (which is something we don't actually always do).

Thank-you for this piece. I suffered a massive stroke at 25 in 2017. My aphasia rendered me to the linguistic capacity of a child. I lost sensation on the right side of my body and lost my ability to write and type. My short-term memory and my ability to read, spell, and process numbers was affected, as was my ability to recognize and name objects. Like what Ms. Renzoni articulated, my only choice was to struggle if I were to get any better and it took a village to get me to where I am now. I went through speech-language therapy, occupational therapy, and physical therapy for many months. It was surreal to watch myself have such trouble with things that were once an ordinary and unremarkable facet of my life. I had to push myself to accomplish the most mundane tasks; it was not always easy and I was not always gracious or temperate. I cried a lot. I wish I knew then how much I took it all for granted. Despite the challenges my stroke has brought me, I am thankful for it, for my circumstances altered my perspectives and paradigms on what it means to live a fulfilling life. A year-and-a-half later, my aphasia is improving every day. I can read, write, and type (albeit with some difficulty), and spell again. These are my daily victories. Although I have accepted that my life before my stroke has been lost to me forever, I know that I can create myself a fulfilling future.

Having five yrs experience in the Care of my wife, made quadriplegic by a stroke and being a retired MD, I can say it is impossible for a care-giver spouse to deliver the care if either one is older Friends, family can help but the end result is that the Patient will be bed-bound since neither one will be able to do transfers without hurting themselves or the patient. Try it 24-7 day after day, year after year. The need for professional care-givers is exploding and will do so for the foreseeable future as our population ages. Most will not have the resources to provide that care at home and neither LTC insurance or Medicare offers relief. The solution is to provide LTC as part of Medicare, much the same as Dialysis which was included in Mcare in 1974. To fund that a Tax would be added to the Medicare deduction. This is the time to agitate for that program which will benefit us all. I can say, under the care of my wife's caregivers, we are able to achieve, mobility, intensive skin care, meals in the dining room, showers ever other day, PT, OT, Speech every day, standing frame twice daily to preserve leg muscles and allow her to aid in transfers. This level of care should be available for all. Congressmen(women) put this high on your list this political season. You will find great acceptance.

Many people, mostly women, are thrust into the role of caregiver. It is uncompensated, stressful, extremely difficult, and impacts their long term physical and financial health. Caregiving for a debilitated loved one needs to count toward social security benefits and, I think, should be compensated by government. This would reduce the need for expensive nursing home care. Next: respite care is a must. Sorry, stroke survivor or dementia patient or cancer patient, you may not want a “stranger” in your house, but without it your caregiver will die early or get fed up and leave and then you’ll be cared for by strangers full time.

After my father had his stroke at 65, his care fell almost entirely to my mother, 62 at the time. He was seriously disabled, mentally and physically, including having a leg amputated a few years after the stroke. It wore her out and I believe led to her death at 74 (though she was a lifetime smoker. So was he.). He lived six years after that. But she treated him like a child and did very little to encourage him to try things. All the family saw it and couldn't do anything about it. This article is right on target about getting help. That is my first bit of advice to anyone who finds themselves caring for a debilitated stroke patient. Some of that care is available from government programmes, and non-profit health and social service agencies. The problem is, those programmes can be hard to find, have Byzantine eligibility requirements, what I call hidden "no-costs" (free but they don't tell you that), and no central place to find out about such things. Insurance companies can be, let's say, unhelpful. My father's stroke was 30 years ago so I hope all this has changed for the better.

I find it extremely sad that after so much caring and sacrifice on the part of Ms. Baxter, the couple decided to part ways after recovery. It is telling that the patient does not understand the magnitude of suffering imposed on his partner who managed single handedly. She too must have tired of his unaware selfishness, all too common in very driven, bright people. If only she had tried patience after recovery and he had opened his mind to how much he owed this amazing woman. But perhaps I am a foolish romantic.

Thanks. Excellent piece.

Ms. Brody....My Gratitude for your sharing Kelly’s Story. My personal experience with Stroke has been easier than Ted’s. t 82, I am a long-retired Licensed Marriage and Family Therapist, Lutheran Pastor, and small Publisher. Seven years ago, I had a Stroke while on a Vacation in the Black Hills Of So.Dak. I spent only one night in the Hospital in Mitchell, S.D. Before continuing the drive back to Minnesota. Two of our children, Jeanne and Michael joined us in Mitchell, to help us drive back home , while I mostly Slept. Other than some weakness on the Left Side, my only disability has been an increasing problem in Memory. Unlike Ted’s experience, I had finished my “Need for usefulness”. (However that “Need” is still partof my long-standing makeup.) Thinking and creating is much more frustrating and difficult. Five or six years ago, Jeanne, our beautiful and joyful 50 year old Daughter, wAs diagnosed with Early-Onset Alzheimer’s. We moved, almost immediately, to Mora,Mn. to be within 3 minutes of Jeanne and her husband, so we could be useful in her Care. Jeanne died last Fall at age 55. She had been the Speech Therapist at Mora High School for over 10 years. Frankly, Jane and Kelly, I am probably taking your Time with these Vacuous words, because it’s helpful to Me in just making a simple connection with a stranger who is also dealing with a common malady....called Stroke. I can understand your loving each other enough to “Let Go”. With appreciation.

I had a stroke as a result of a dissected carotid artery from a bad car accident. My parents moved into my house for 6 months leaving their friends and family in the lower 48. They both took the time to care for themselves. It is very, very important to do so. I didn't make solid decisions for the first 6 months so I truly believe that caretakers need to stand up for themselves. Almost 11 years later I am still making improving both physically and mentally, albeit much more incrementally. Luck and hard work have given me a wonderful life despite the accident. Live life like you might not have another day... without having a catastrophic event like a stroke inspire change

Not even sure the cause was a stroke, but a woman in her early 60s contracted a disease that did not affect her thinking, but she lost her ability to put a thought, a message, into audible language. I just met her a few months back. She is a delightful person, late 70s about my own age. That first day I was referring to a book, the name I wasn't sure of, and she demonstrated her tablet (I-Pad?) by locating the book, "House of War" and showing the group a descriptive paragraph. She also uses cursive on the pad, which is not always legible or will use it as an enlarged keyboard. My point is that she has compensated for this loss, and does manage to participate socially and intellectually. I can see such interfacing improving dramatically over the coming years.

Aphasia, the inability to speak all the way to confusing words, related to strokes messes the communication center. Sometimes it misses the writing and singing abilities so that may be pathways for communication, along with picture boards, typing, signs and other means of communication. Expressive aphasia affects the expression, but may miss the reception side of communication. Speech therapists can help the caregiver and health aide in finding better, less frustrating ways to get basic communication.

I have known both Ted and Kelly personally for more than 25 years. Ted and I were colleagues at one of the firms he makes mention of in the prior NYT article and we became fast friends. Ted was simply the best...razor sharp sense of humor and wildly successful in business but with a super soft and caring side to him. I was one of Ted’s biggest supporters when he was up for consideration as a partner at our firm. I met Kelly before Ted married her and she was always so warm and engaging. It’s been both heartbreaking and now heartwarming to see what each of these very strong individuals have been through in the face of such a tragic event. There’s probably no greater example here around the old adage of “its not how you fall but how you get up”, because I believe both Ted and Kelly have lived that adage. These days I see Ted every couple months for dinners and lunches in NYC and there are very few people on this earth that I feel this close to. We still crack up about some old work stuff and friends and talk about what’s the next chapter in each of our lives. Life is truly impermanent.

For a stroke patient who is unable to communicate his/her needs, it’s very frightening to be placed in the hands of a stranger for care. Though the large majority of hired caretakers are kind and professional, they can get frustrated as well. The best scenario that I’ve seen is co caretakers. A family member or person familiar with the patient works together with the hired aid until the point where everyone is comfortable and a routine is established. Best thing to do is get to a hospital quickly at first sign of a stroke or even a questionable stroke. There are meds now for embolism caused strokes that if given early may prevent major damage.

Stroke, a horror of the human condition. Thank you for writing of the impacts upon the sufferer and those they love. And thank goodness for those who recover, both patient and their caregivers. In my experience [two first-degree family members with hemorrhagic stroke] nothing prepares one for the aftermath. Some make remarkable recovery. Others do not. In future stories, please consider discussing the emergent issues of dealing with the main event. The fear and confusion of making life decisions during the acute phase of stroke can be paralyzing. What to do? Treat? Hope? Hospice? Please also address the different types of stroke, hemorrhagic v. ischemic, as emergency treatments are radically different, though the resultant debility may be the same. Lastly, time is tissue. Recognizing the signs of stroke and knowing what to do during the onset can make all the difference. That, and access to a Level 1 trauma center. Had we no access to Vancouver General Hospital or Hennepin County Medical Center, well... .

Almost immediately after we retired in 2000 and moved to what I expected we would be living out our days in a new home near the ocean, my husband had a TIA. Three years later he had his first stroke from which he recovered. Three years after that, he had a debilitating stroke which has left him with a paralyzed right arm and a partially paralyzed right side. That was 13 years ago, and I have been his sole caregiver ever since. Fortunately his brain has not been affected. However, it takes him a long time to get a thought from his brain to articulating it. This frustrates him. During his working life, he did many things. For the last 20 years of that life he had his own business remodeling houses. I know that it upsets now that he can’t even help me open jar. The bottom line is that I will continue to take care of him as long as I can. After 52 years of marriage, I can do nothing less.

I was taken aback by the comment that "he wouldn't allow me to hire help". In the interests of sanity and recovery for both the patient and the care giver, help is essential regardless the patient's preference.

It's similar to being a caregiver of someone with Alzheimer's, (as I was). You go through some of the same emotions, including being in a state of disbelief, as in how could this once vibrant, articulate, intelligent, nice mom become belligerent, and uncooperative, not to mention having some cognitive decline. Sometimes this comes on very suddenly, for both a stroke victim and an Alzheimer's patient. My mom had had an undiagnosed stroke, which we only found out about when she had a brain scan after a fall. She had none of the classic stroke symptoms. No garbling of speech, no movement rigidity, nothing, except 2 incidents that were diagnosed as vertigo. About a year after she passed away, I found out that sometimes a stroke is misdiagnosed as vertigo. A word to the wise.

Multiple studies have shown that the neurons in the brain are more “plastic” (ie more pliable and able to migrate and change function) than originally thought, but the word goes out slowly. Long term improvement studies are also probably not funded well. It never ceases to amaze me what a patient, dedicated human being can accomplish. These are the true heroes of our society.

I thought I had had a stroke. But it was permanent brain damage from malpractice,incorrectly restoring my sodium levels after hyponatremia from undiagnosed Cushings from the steroids I need for my asthma. I lost everything. I had 5 years of rehab. and finally I could live a quiet if restricted life. No career or job of course, no drivers license, no handling money. and a personality change since I couldn't remember so much of my past. Ten years after I 'finished' rehab, I developed cancer. Now here's the part they never tell you and most doctors don't know. That mountain of rehab you climbed up has a downhill side. And any additional stress on your brain can send you down fast or slow. It's like post polio. Your brain gets tired of compensating, or it just can't, and no amount of rehab will bring you back to your previous peak. For me, couples cognitive rehab has helped us create new schedules and lists which give me some sense that I have some control. Why couples? because my husband has had multiple cardiac arrests, both before and after my injury. He is not an ideal caretaker and neither am I. But we muddle through together, with the help of family and friends. and because we have grandchildren, life is beautiful.

Thanks for some very practical suggestions for spouses and other family members of stroke survivors. As an OT, I would add that occupational therapists can and should teach you how to help your loved one with personal care. Bathing, dressing and especially toileting are skills patients can learn again. Helping in a way that preserves dignity and autonomy is possible. Learn how. Do not sacrifice your own body for the care of your loved one. Nurses and therapists know that transfers and aiding gait destroy their backs at an alarming rate over time. Let therapists teach you the safest ways to move/move with your loved one, and follow through. Ask for repeated training if you need it. Finally, get a therapist or trusted religious counselor that will allow you to grieve the life you BOTH have lost, and allow you to express your anger. So many family members are unable to accept or unaware that some of the exhaustion, depression, sleeplessness and other symptoms come from the deep sadness and the anger that is a natural response to something so profound. Just because you didn't have the stroke doesn't mean it hasn't changed everything in your world.

Thank you very much for these two articles from both the stroke survivor and caregiver's points of view. As a stroke survivor and volunteer at our local stroke rehab hospital, it is extremely frustrating that health professionals still tell new survivors and their caregivers that they'll have the most recovery in the first 6 months and get as far as they'll ever recover in the first year. I'm approaching my 11 year strokeaversary and continue to see improvements. As long as we continue to work at it, we'll continue to recover. It's never fast enough, but each brain healing moment is a cherished accomplishment. Every day above ground is a very good day.