After the stroke, someone else sits in my grandmother's body

Updated Oct 12 2015
Guest post by sarahc

Although this guest post came to us from the Offbeat Bride Tribe it isn't about weddings, but rather how we age, and how we relate to our loved ones who are aging.

My grandma's hands will not be making tortillas, or tending to her garden anymore. (Photo by: Horia VarlanCC BY 2.0)
My grandmother will not be at my wedding. The woman who was always so lively, so patient, and so strong is gone. She will never make me fresh tortillas. We will never again spend a day happily digging in her garden, ineffectually pulling at the weeds that always encroach on her mismatched flowerbed. She will not attend my wedding.

My grandmother was married at 16, raised 11 children, left her verbally and physically abusive husband to raise the youngest two children alone. She met the man I call grandfather and their love for each other freed him from alcoholism and drug addiction. She cuddled over 30 grandchildren and 15 great-grandchildren. She buried one of her children. My parents both worked, so it was my grandparents who attended daytime awards ceremonies, recitals, and plays. In a moment of stage fright, I could look into the audience and see my grandmother smiling, proud of her little "mija." My grandmother was one of the strongest women I had ever known.

My fiancé and I were working together at a summer camp when I called my mother on my night off. We talked about how my job was going, the movie my fiancé and I had just watched, trivialities. "How is everyone?" I asked that every time I called my mom, never expecting the answer to be anything other than "same as always." "Grandma's in the hospital. She's had a stroke."

We rushed to the hospital through the night. My fiancé drove, trying to outrace my fears and my desperation. We arrived and were greeted by a host of family members, some of them my fiancé hadn't even met yet, all waiting. All hoping. Grandma was awake when I saw her, and she was excited to see us. She was worried that I had quit my job at the camp to come see her. I reassured her that my bosses were okay with me staying for a while until she was better. "That's very nice of them," she said, smiling.

She had another stroke while she was in the hospital, this one worse than the first. She was there for over two weeks, but we had to leave before she could go home. I told her we would visit again as soon as camp was done. But I never saw my grandmother again.

Someone else sits in my grandmother's body. Someone so much more fragile than the woman she used to be.

The stroke marked her. She has only a little use of her right hand. She tires easily, she loses words in the middle of sentences. She confuses names. The worst part of this is that she knows exactly what the stroke took from her. She remembers that she used to cook and clean for herself and her husband. Now she can barely stand long enough to wash a few dishes before she needs to sit, and it makes her so sad. The stroke took away the woman she was from everyone, including herself.

The brain damage changed her personality. She is not the sweet, patient, calm woman that I remember from my childhood. She is moody, forgetful, strange. But she is also stubborn and feisty. And I can't help but wonder if this new Grandma is the person my grandmother would have been had she been born in a different time. Maybe this new Grandma is just what my old Grandma would have been if she had been given the opportunity.

So now it's me who makes her snacks when she comes over and who listens as she goes through her day, gently correcting her when she slips up on a name. I am learning to love this new person who has my grandma's eyes and smile. I don't know how long she'll be with me, but when my friends ask who the white-haired woman sitting in a place of honor at my wedding is, I will smile and say "That's my Grandma."

  1. This is beautiful! You made me get all teary eyed at work (it's okay…not the first time that's happened!). It reminds me of my grandma; she got Alzheimer's, and while she was present, she was not present. I felt like I had lost her about 2 years before she died, when she was just a shell of her former self. I think deep down she recognized us, because she always smiled when we'd sit and hold her hand.

    Your grandma sounds like a wonderful person; I'm so happy that you have so many wonderful memories with her.

    • Thank you for your kind words. I'm sorry for your loss as well. Who knows how much we keep with us when disease tries to take it away? I think that we're stronger than we know; strong enough to hold on to ourselves in the darkest moments. It sounds like both our grandmothers held on to love when other things slipped away.

  2. :::hug::: I definitely feel what you are going through. My grandmother (also a strong, feisty woman) had a stroke earlier this year. It was really bad, though. Everyone was discussing taking her off life support (as it said in her will) because the doctors assured us she would never be able to eat on her own again. Surprise, surprise, she began making small improvements. She's back home, now, but she has to be under constant care and supervision. Thankfully (is that the right word for it?) I don't think she is capable of fully grasping what this stroke has done to her. I think if she really knew she'd be horrified. My grandfather had a stroke ten years ago, and it was such hell going through it that I know she'd never want us all do have to do the same thing with her.

    It really is heartbreaking, seeing how she's changed. When she talks, she usually just says things that don't make any sense, or talks about things that aren't really happening at that moment. But she still laughs the same, and sometimes she still gets that little sassy sparkle in her eye and you know she's teasing you. It is hard, though. Having to say goodbye before really saying goodbye.

    I guess I don't really have anything comforting to say, except that I know how tough it is. And that the woman you have known and loved is still in there and she will come out in unexpected ways. And no matter how she's changed, I'm sure she loves you just the same.

    • Thank you. When a disease strikes someone close, it can feel like a very isolating and helpless situation. I wrote this to let people know that there are others who have been through this and that life and love continues through everything. We all do what we can and I just hope that these words help the people who read them in the same way that finally expressing them helped me.

  3. Thank you for writing this. My mom's parents are really going downhill quickly right now (Grandad with Lewy Body dementia, Nana with a variety of physical and mental health problems), and it's hard to see my grandparents losing their capabilities and independence. Thank you for the reminder that lots of other people have gone through this as well, and while it's hard, they're still my grandparents — even when they don't quite seem themselves.

    • I'm glad that this brought you some comfort in a difficult situation. When things are out of our control, it's good to remember that loving them no matter what is something we still have control over.

  4. Big Hugs. Alzheimers has been gradually taking my beloved Dad away for the last decade and a bit. Early medication has helped, but I spoke with him last night and although he remembered that I am engaged, he didn't remember when the wedding was, or that I had moved in with Mr. Yoyo.

    Both types of situation are difficult – losing your loved one suddenly, and losing them gradually.

    • It is very hard to see the people you love disappearing slowly. When I feel especially disheartened, I think of the song by Death Cab for Cutie "What Sarah Said" and one of its final verses: Love is watching someone die. It seems sad, but it reminds me that being there for my grandmother as she slips away from herself is my final and greatest act of love.

  5. I'm so sorry about what happened to your grandma. I know it's little comfort, but at least you can still talk to her and she can talk to you. Strokes don't always leave people able to do that.

    A stroke took my grandmother from our family. She'd had a small stroke before, but no one (including the doctors) knew that was why her neck was hurting her. When she had a major stroke, it took away her ability to speak words. She tried, but most of what came out was gibberish, with the occasional actual word. Very rarely she did say a whole sentence. Most of the time she could not feed herself, or even eat without a feeding tube. She had to be in a nursing home for the last few months of her life. This happened over the summer, and she passed away from yet another stroke the following winter.

    I sent sympathy to you and your family during this difficult time.

    • I'm sorry for your loss. I know how lucky we were to have her keep as much of herself as she did. After writing this article in my journal on Offbeat Bride a few months ago, my grandma suffered another stroke which has made it even more difficult for her to communicate. It was after that happened that I decided to submit this as a guest post. I felt like all too often people don't talk about these things. For me, at least, there was a sense of shame and guilt. "I shouldn't be so sad. It's not like my grandma died." But she did die, in a way. I wanted to talk about it and try to convey that it's okay to grieve for the loss of who they were even as we celebrate the fact that we have them for a few more months, days, or even hours.

  6. Thank you so much for writing this. I've struggled for years, wondering how my parents, my aunt, and my grandmother felt about a situation much like this. I was just always on the other side.

    My grandfather had a stroke when I was five. The man I knew as Grandpa, the one who could remember the rules of gin rummy but not my name, the one I watched hockey with, explaining the rules again each time, was not the man that the rest of my family remembered. He passed away a handful of years ago, and my most vivid memories from the wake were of everyone commenting that he "finally" looked like himself again. It was incredibly strange to look in the casket and see a man I had never known there instead of my Grandpa.

    So, I just wanted to say thanks for putting into words what my parents struggled to keep to themselves while I was growing up. I teared up reading this, and I'm writing an email to my mother with this link in it.

    • Thank you for sharing. I'm glad that this helped you see past events in a new light. Please let me know what your mother thinks about the article and what her experience was like, if she's okay with sharing it,

  7. I'm sorry I couldn't read the whole article. My grandma was exactly how you describe yours and I saw her beat breast cancer only to lose her to liver cancer 5 years later. I saw her turn from the joyous hard working woman she was into this empty suffering shell that looked like her but her eyes were always looking far away. And still trying to hold back tears of pain. I'm crying as I'm writing this.

    I was studying to take the admission exam for med school as I saw this. I got in and 3 days later she passed. I still think she held on as long as she could to see me get in. After 6 years of college, I'll graduate this year. Wish she was here to see.

    • It's hard to see people suffer; harder still to keep going without them. My grandmother was always proud of my academic achievements and I'm sure your grandma was proud of you. Congratulations on your impending graduation.

  8. This hits home. Just last night we said goodbye to FH's paternal Grandmother. She was greatly reduced from the vibrant woman that she had been in years past due to Alzheimer's and other health issues. I have only known her as a gentle and nice elderly lady in need of help. But of course, she was Mother and Granny to her family and seeing her so changed in her last years was hard for everyone. We had worried about how much of her would be left by the time we marry net year. We have comfort in knowing she passed in her home surrounded by the love of her family, even though she no longer knew who any of them were. I have always felt acceptance from FH's family, but being allowed to help care for Granny and support them through this time was an incredibly touching display of the truth of becoming a member of their family. I consider it a gift that Granny gave me. And in a funny turn of events, she didn't understand who FH was exactly these last months, but she thought he was a nice man and she liked his wife (me). She told us so last summer, before he even proposed. We will always enjoy the joke the family made about it then and even again just this morning- we have to get married to keep Granny from being a liar.

    • It's the little happy moments you can find that make hard times a little easier. My favorite memory from after my grandmother had her stroke was on my dad's birthday. My mom, dad, older sister, older brother and his wife, my fiance and I, a few aunts and uncles, and my grandparents all went out to breakfast. The waitress was an older lady, very friendly. She was bantering with my grandpa, calling him sweetie. Since the stroke, my grandmother had become very jealous of any attention paid to my grandpa by other women. As we left the restaurant, my grandmother called her a few uncomplimentary names in Spanish. It was so out of character for her that we all started laughing. "I'll kick her ass, too," she added, which only made us laugh harder.

  9. I am really appreciating the interesting and heartfelt comments and the original post.

    My grandmother was recently diagnosed with Alzheimer's. She has been forgetful of daily things in the recent year or so anyway, but the diagnosis does make it seem more real.

    Unlike the lovely grandmother described in the post, my grandmother has always been a difficult person and often focuses on the negatives in her life. I don't know how the disease will progress or how she will change. But I wonder how long she will be able to hang on to those negatives that have haunted the latter half of her adult life, from the mundane and typical – family that don't visit often enough, a bad relationship with a daughter-in-law – to the genuinely sad loss of a grandchild. Since she has spent so much of recent years dwelling on sad memories from the (semi-recent) past, what will happen when she can't remember them anymore?

    • She might be a little happier, or stay the same. Strangely enough, I think the stroke helped my grandmother cope with the loss of her eldest daughter, who died about a year ago. I know that if she had been her old self, she would have driven herself crazy with worry. Instead she was able to calmly accept my aunt's passing. She says that she's not worried about her daughter, because she'll be seeing her again soon. When she says that it upsets my other aunts but it gives my grandma comfort which is really the best thing for her.

  10. Thanks for sharing your story. It is really touching that you are repaying your grandmother for all the years she looked after you.

    I work with people who have language impairments after stroke. Many of them feel that they are the same people they were before, but that others don't see this. I know it must be very difficult for you to see your once-independent grandmother now that she is so different. But I would encourage you to still try to talk to her as though she is the same person, rather than assuming the old her is lost. She may feel the same as before, but not be able to communicate this. Often, chatting to someone with the assumption that they are the same person can be very valuable to them. Maybe try to speak a little slower, but really, she may be cognitively pretty ok, but not be able to demonstrate this competence due to language impairments. This can be very frustrating for people. I don't know if that is the case with your grandmother, but I just wanted to say something in case it is.

    • Thank you for mentioning this. It's good to remind people that sometimes they just have to be patient and understanding when communication becomes difficult. Initially she was just confusing words. Conversations were harder, but if you learned to listen for what she meant to say instead of only hearing the incorrect words, you could have a conversation. Since the additional strokes, she's lost almost all of her coherence. Sometimes she's understandable but the talking wears her out, and as she gets tired it becomes harder and harder to follow her conversations.

  11. This hits home for me as well. My dad had a stroke a few years ago, when he was only 54. We are very lucky that he still has his speech and most of his mental prowess, but his personality is different and he's very different to talk to now– almost like his filters on "how to be nice" are gone. The hardest thing for him (and for us) is how he used to be a professional guitar/bass player… and his ability to play music was completely wiped out literally overnight. He's regained some of the use of his left side, but he'll probably never play a guitar again the way he used to. He used to be left-handed and he's struggled with writing with his right hand. It's very difficult to see how depressed he's been since then (almost 5 years ago), knowing that the things he loved most are just… gone. The relationship dynamics in our family are now very strained as well– more fighting, less understanding, more blaming each other and passive aggression. I'm very thankful he's a stroke survivor (not a victim!) and that he can still speak, and that his job allows him to work from home. He can still drive, and now has the handicapped placard for parking. We went to Disneyland as a family and found out how wonderfully accommodating they were with getting a motorized scooter for him and helping him get on and off the rides at his own pace. I know we're very lucky, but it's hard to think "lucky" when the thing that defined him and made him happy has been taken away so suddenly.

    Luckily, for my wedding, we came up with an idea to get around the father-daughter dance (he is unsteady on his feet and walks with difficulty using a cane): we did a father-daughter song instead, karaoke-style. Thankfully, he can still sing 🙂

    • Thank you for sharing. It's great that you were still able to have your father be apart of your wedding. It shows that we can still make memories, we just need to be open and creative with our solutions.

  12. Ah. I remember this too well. My mother had a stroke when I was in 2nd grade.

    My mother was so unlike herself for the first month they wouldn't even let me see her. It seems cruel but I think it was for the best, I kept my optimism the whole time, thought only "mom is sick, soon she will be better." She lost her right side completely, for that time. She was a young woman, and over the first five years she got much better. She is a different person but she's still my mother. She gets around alright without that side. Her memory got better over time.

    I remember the short-temper she had, though. She didn't totally seem like my mother when she first came back. She was absolutely out of patience because losing your dominant hand makes you insane with frustration. Not being able to find the right word is maddening, maddening.

    I am thinking of you and your grandma. I hope she recovers more than they say she will. A stoke sometimes feels like a part of a person is taken, but I hope you can love the part that remains. I have always regarded the time after that day in 2nd grade stolen time with my mother. I hope the logistics of daily life get easier and she can find a way for living to be less difficult for her, and for you. Good luck.

    • Thank you for sharing. I'm glad that your mother was able to regain a little more of her independence back. My grandma was improving slowly but steadily, which made the most recent stroke (and subsequent backsliding) even more painful. She can still have good days, but they're few and far between. We live day by day with her, and we take the good with the bad.

  13. Thank you for writing this – my comment will be the same as many others – I have been through something very similar with my grandma, so really, truely thank you for writing this as it has helped so many of us to talk about it.

    My Gradma was very active and busy for her age until she had a stroke in her cerebelum. I am lucky that she can still talk and eat and move, but she has unfortunately lost her sense of balance and feels sea-sick as a result.

    In a similar way to you and others, it has also changed her personality. She now often shouts instead of talking and she is much less tactful or gentle with her words. I find it difficult to have the heart-to-heart conversations with her that I used to have, for fear of saying something that will rile her and ending up wanting to cry because of what she has said.

    It's so strange to never see her cooking or sewing or doing a puzzle or walking the dog. Now she is always just sat watching tv and will not leave the house. I feel so sorry for her and how he life has changed and I know she is depressed. But I will admit I also feel sorry for myself and the Grandma I have lost

    • My hope was that by writing this, it would give people in the OB Universe an opportunity to share their stories with each other. This is such a wonderful community. I felt like if there was anywhere people could find camaraderie and support in a difficult situation, it would be here. Everyone's experiences are unique, but where our stories overlap, we can at least share with each other and say "You're not alone in this."

  14. Throughout several difficult moments in my life – including learning to live with my grandfather after his stroke and the loss of my long-term partner, the film "Fierce Grace" has, if anything, given me some nuggets of comfort and thought.

    The film is a documentary about Ram Dass (born Richard Alpert, a fellow "explorer" & Harvard Prof with Timothy Leary, who became a spiritual leader & wrote the book "Be Here Now") after he suffers from a stroke. He talks about who he was before and after the stroke, including what a hard experience it is for him to no longer be able to use part of his body or easily form thoughts into words. The documentary can be found on Netflix & I recommend watching it, if anything, for the insight into the struggles and path to acceptance of a person who has also experienced a stroke.

    I love the hope & acceptance you expressed at the end of your article & I think it is so wonderful that you are sharing this experience with the offbeat universe. Thank you!

  15. Actually, I had to deal with something similar with my grandmother. Unfortunately, we couldn't get her to go to the hospital for it -we aren't sure when it occurred to be honest, her late husband had them living quite the distance away so we aren't sure when the change truly occurred – and regrettably her newer self…. well she actually became erratically violent- she attacked me, my husband, my mother, and the last straw was that she attacked my cousin's 5 month old for crying- and after much tears and conference with my fiance (now husband of three years ^^) we decided that we needed to distance ourselves from that sort of danger/stress to ourselves and our children. I keep hoping dearly that someday my grandma will come back and still be the awesome spunky purple haired artistic weirdo who rode a motorcycle and did bar-tending on her free time…. but… I'm ok with her having not been at my wedding even if it makes me a little sad sometimes. It was honestly the first decision that we've ever made as a family and I'm glad that we stuck to our guns through the thick and thin of it all. I think having that hard conversation regarding cutting a family member not only from our wedding but from our life was something that helped strengthen our marriage and helped us learn early how to communicate our needs. (Not to say we aren't still learning) I still miss my grandmother… but I know the woman who sat with me when I first said I wanted to be an artist and helped me improve and bought me my very first sketchbook, isn't really there anymore.

    • It's hard to have to let go of the people we love. In some ways, losing the personality while the body remains can be harder than if the person had simply passed away. It must have been a very hard decision to make, but I'm glad that you were strong enough to do it and it seems like it was the best thing you could have done for the safety of your family.

      • My mum had a stroke 3 years ago, when I was 12. She more or less lost the use of her right side, almost all her speech (she has about a 10-word vocabulary and despite our best efforts doesn't remember much more than that for an extended period of time) and her personality completely changed. She was the most selfless, kind and loving person I knew, with the patience of a saint and all the right words in her arsenal. She never demanded or excessively controlled us, she was always there as support and she tried her hardest at everything she did. Now she is ultra-controlling, extremely moody, overemotional and self-absorbed. She demands that everything she wants be done now, most of which is unreasonable. She doesn't seem to know how to love and support any more, and her smile frankly scares me. She often gets violent when she can't express herself and her patience has reduced to nothing. She doesn't try to get better – she seems to have given up – but she still expects us to treat her moody two-year-old persona like we used to treat our mother. Through all the time I spent in ICU in hospital with her I am completely emotionally detached from her and find it impossible to accept that she is what my mother turned in to. I feel for her, I really do – she was an incredibly smart, high-achieving, all-round exceptional person who is now worse than average – but I feel like I can't help if she can't help herself, and I don't want to admit that this is what I'm left with. At the same time I feel as if that is an extraordinarily selfish thought and that I should be wanting to be involved and spend time with her, but the truth is I'm embarrassed for both myself and her when I take her out in public. My dad isn't happy either, and he works enormously hard to support us so doesn't have much time for myself and my three sisters – plus both him and I avoid the house because her constant negativity – verging on depression – make it a crowded and uncomfortable place to be. Being with her is draining and depressing, and so I don't want to do it. I've been told so many times that she's getting better, but I feel as if she's getting worse. At the moment I just want to get out of here as soon as possible, but I feel really bad for my dad because he's talked to me about it and there's no real way out for him in the near future. I want to love her – she's my mum – but I just can't. Everyone else, I feel for you enormously because I (honestly) know how hard particularly personality changes can be. Good luck and may it become easier with time. 🙂

  16. My grandmother didn't have a stroke, but she is suffering like this now. Partly because she lost my grandfather almost 7 years ago (they were married for 57 years) and she just never recovered from that loss. Depression has taken over and our family has been struggling to help her. Plus now that she's in her 80s her mind isn't as sharp as it once was. Its hard to see someone you love so much not be 100% themselves that you remember. Hang in there!

    • I'm sorry for your loss, and your grandmother's loss as well. It's true that a lot of people decline in health after the death of a spouse/partner. I know my grandfather hasn't been the same since my grandmother's stroke. It's like they were keeping each other healthy. Women tend to do better after a partner's death than men. Just keep including your grandma in family events. It will make her feel loved and wanted, and it might help with the depression.

  17. Like so many people commenting here, I watched a loved one change into a different person. As a kid, I watched as my normally always active, super physical, generally happy doing what he loves and providing for the family father turn into a sick man who couldn't leave his bed, who was prone fits of rage and frustration and depression over his inability to provide for us or be there are the big moments in us kids' lives due to disease. As a kid I adapted, but I admit there were times I was scared by just how mad he got over little things. His change wasn't as sudden, but it was definitely jarring.

    Now, I get to watch out as the same disease seems to be affecting me. I see myself being frustrated and upset over little things that mean nothing, crying over lemonade (true story there), and worst of all being mean to my young niece and especially to my fiance. It sucks feeling like your body is acting without your control, and even harder dealing with people who don't understand that it's not you acting this way. I am super grateful for my fiance for sticking with me even when I'm being mean and for being really understanding. Having someone who still treats you like you is invaluable, and I think it's great how you incorporate your grandma, despite everything.

  18. My story is almost exactly alike except my nana never went home, she is pretty much bed ridden and peg fed, the light in her eyes is out and she is always so sad, cruel rhat an 83 year old who did swimming and dancing, bus trips all over. Even did her own shopping, housework. Now she cant talk, eat, move without help.
    The only time she smiles for us is when I take my children and the old light is back bright before she realises how much she has been robbed of. Then she tires or cries. I love my nana but its hard x

  19. The strokes. They took her mind. They took her memories. Her mobility is limited. Her vision is gone. There is only a sliver of my mother left with us. Hardest thing I have ever watched and lived through. Hugs to you.

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