Telly gawps and the past tense: Loving and caring for a relative who has alzheimers

July 1 2014 | Guest post by Grace Hardy
I Heart Someone with Alzheimers from BohemianFindings

My grandmother was a remarkable woman. An unimportant statement perhaps — each one of our grandmothers is worth remarking on, I am sure — but my Grandmother was none the less an incredible and often peculiar, woman.

She was a teacher. Yes she taught in schools but she also taught outside of schools.

"Stop your telly gawpery goo and come and have a Maths lesson. It's much more fun." That was how childhood with her went. My mother was scared to bring friends home because of mandatory maths that would surely be inflicted. Sometimes all you wanted to do was "telly gawp," but with my Nanny that was not acceptable. Not when there were things to be learnt — and there were always things to be learnt.

She was a storyteller: A hoarder of anecdotes, and a fascinating orator. Her head a family archive full of tales of brave ancestors and comic descendants.

She was a hostess. She ran a boarding house on very little money for many years, offering full board to the guests: Breakfast, elevenses', dinner, afternoon tea and supper. She threw the doors to her nine-bedroom guesthouse wide open to the world and his brother for as long as they wanted — greeting them with a welcome cup of tea and a leaving them with with good food, hearty laughter, and Maths lessons in-between.

Nanny was a doer. She would carve teaching tools out of blocks of cork; she would collect clay from the beach and mould it into objects. She would make and decorate wedding cakes and she'd do it free of charge — she actually won a national award for her cake decorating. She was a painter, a maker of beautiful dresses, of children's toys, of ingenious kitchen cupboards (REALLY!).

She was a musician, a pianist, a lover of tap dance. But most of all she was a singer. You could not stop her singing. So many songs she learnt on her own mother's knee.

I have been referring to her in the past tense but my grandmother is not dead. She is alive and well. Well, except for one thing… she has Alzheimer's.

Now she telly gawps all day long as, for her, there is nothing more to be learnt. It has been a long devolution, and we aren't at the end yet. And sometimes you are left feeling like the person you knew has disappeared completely. That the past tense is the only tense in which they truly exist, and that what is left behind is little more than an impostor.

It happens slowly at first. You notice little things and you make sense of them, you brush them away with a sort of convoluted logic, not unlike a wish, and you assure yourself it can't really be happening. It is unthinkable, that someone who is so alive, so bright, brighter than almost anyone, could be dimming. Then you notice more things, and what once was unthinkable becomes undeniable, and all you want to do is to stop it, there must be away to stop it! You can't just stand back and watch them changing, can you?

But you have to, because not only are you watching them changing, but you are watching them trying, with frantic desperation to hold on, to protect you from finding out or maybe to protect themselves from you finding out, but everything they do is aimed at keeping it a secret, keeping it together. So you play a sort of game where you pretend you aren't noticing anything and that it isn't that odd to forget things like where you put your keys, or to eat for a couple of days, or your nephew's name. We all do it from time to time. And that basically everything is normal. You have to play the game; you can't not play the game.

My grandmotherYou can't just say "you're losing it." Because this is real, and they are real, and they are playing the game so furiously, as if their life depended on it. And it kind of does. So you have to play too because you love them, you can't embarrass them, you can't say the thing that will hurt them and scare them and alienate them more than anything they've heard in their life.

You see adverts that tell you, as if it were the simplest problem in the world, to "talk to them." Just like that — talk to them! And you know the people who make those adverts have no idea what it feels like. That they have never seen the look in the eyes of someone you love so much, desperate to hold on to any semblance of normality between you. Because if the advertising companies had experienced that, they couldn't be so blasé about telling you to "just talk to them," as if it wasn't the worst thing you could ever say, and the worst thing that could ever be heard.

Now I don't know if this is everyone's experience and no two people are the same but in some ways, it gets better as it gets worse. Even with the degeneration, time has been a great healer for my Nanny. As well as forgetting so much of how she used to be, she has forgotten how to be scared of forgetting. For my Nanny it has become a gentle illness. She is surrounded by love and care and — although she doesn't know whether her daughter is her mother or her son her brother, or if this is the year 1960, or what a cat is — it is all okay because she is being looked after.

Sometimes it feels like she is our baby, being passed from one pair of loving hands to another. A team of people protecting her innocent belief that the world is a good place, making sure she doesn't wander off, making sure she has lots to look at and do, even changing her nappies. With this feeling that she is our precious child, it might sound crazy but it can be hard to remember that she isn't going to learn new rules and develop. I catch myself saying, "now remember…" and "promise me you won't do that again." She is the daughter who will never grow up.

Although it is so sad, there is something wonderful; there are still so many reminders of who she used to be. It seems miraculous that in this late stage, when so much has gone forever, there are still little flickers, sparks in the dark, of her true self that remain. Okay, she isn't the hostess anymore, and she's no longer a doer. She never teaches me maths now, she isn't a storyteller and she can't decorate a cake, but she still has her music.

She sings, everyday in her sweet soprano voice; she knows the words to all the old songs better than I do, and we still harmonize together. Even now she sometimes comes tap dancing into the room. And if you ask her to play the piano she can still sight-read the sheet music.

Loveliest of all at bedtime, when I turn off her light and leave her room in her old loving way she still says "Good night, God bless," just like she always used to do.

  1. This is so incredibly sweet and heart breaking. It punched me right in the feels.

    I wish you and yours nothing but the strength and resolve you need as you continue to grow, adapt and change in this circumstance. It can get frustrating and taxing at times, but when the time comes when the body is gone, you'll come to appreciate all you were still able to do together.

    Sing on.

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  2. ouch.

    this was wonderfully written, and it hurts.

    we just said goodbye to my fiance's 97-year-old grandmother. she faded very quickly, i suppose to ensure we wouldn't worry about her much (she was that sort of lady). her light started to go out about 6 months ago. she managed to stave off Alzheimer's for 10 years…we only really started to notice changes in her in the past year or so.

    i have been in this place twice, now. and i don't wish it on anyone.

    may you make the most of the time you have with her. <3

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    • Very moving! It seems so strange to me how sometimes it can be so quick and other times so slow. Looking back it was '99 when my Nanny probably first started getting ill and yet with other people it can be over, as you said in 6 months. A strange and cruel disease. Lots of strength to you and your fiancés family! I hope you never have to experience it again!

  3. I love this piece. What a lovely memory of your grandmother.
    She is not her disease, but it is a part of her now. She's still your grandmother, her mental part is just receding. It's tough when this part was something so important to the person affected by Alzheimer's.
    Still, this piece left me smiling, because she obviously is a person well-loved.

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    • Thank you for your lovely words! It is so hard to keep in mind all the things she was when you live with the day to day reality but you are so right! she is not her disease but it is a part of her. Very well put! I am glad it left you smiling. All her life she has aimed to make others smile and its so wonderful to know that she is still doing it!

  4. (typing through tears so sorry if my spelling/grammar is off)

    This is the most beautiful thing I've read in a long time. I'm a home health aide so I usually don't show up on the scene until after dementia or a different disability have taken their toll. I never know the people I care for as they were before, the way their family knew them, the people their families are grieving for and/or fighting to get back. Letting people talk about the past is among my favorite parts of the job. Walking with people through the wildest, weirdest, most perverse, most exciting and happiest times of their lives seems to make the hard times easier. And wow, if I could help someone out who would sing and tap dance with me… just wow.

    I'm so happy for you that you have these amazing memories and can share them. Your grandmother is beautiful and has clearly had an impact on so many others (including Offbeat Homies, now). And I'm happy for her that she has a family that won't take her for granted, that will be there for her through thick and thin.

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    • Oh thank you for that wonderful post! I am so touched that it moved you so much. I have so much respect for what you do, it is so needed. Looking after a loved one who is ill is one thing but being a support in the lives of people you don't know is quite another. Many years ago I worked for a brief spell in a care home for people with severe dementia and I found it impossibly distressing! The gift you give is so precious!!!!!!

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  5. This was a great piece. Unfortunately for my grandmother this disease was not so gentle, so it is encouraging to know that it doesn't always go that way.

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    • I am very sorry to hear that! I know in many ways my Nanny has been lucky. This isn't a warts and all article and there are loads of not so gentle things about the last 15 years but I know that we have been blessed that she has never been violent or aggressive!

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  6. This is a timely post, as I'm just catching up with family about my grandparent who is having ongoing memory issues, and it's leaving him feeling scared. Your nana sounds like a wonderful woman – I'm so glad that music is still a point of connection for you both.

    (To the copy editor: I hate to be that person, but 'gaup' in the sense that I think the writer means is more usually spelled 'gawp' – it might be a North American -v- British English dialect thing. )

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      • Sorry, I couldn't see it, thought you'd gotten rid of it! Must've just been my late-night brain – apologies.

    • I think it's amazing that your grandparent feels he can open up about how he is feeling. With most people they feel to scared to even say anything but the fact that he is able to open up about it paves the way for him getting some help early on. there are pills which have some good results – they are known as Aricept over here but that might well be a brand name. Also for a more herbal approach coconut oil has remarkable results. It is all about catching it early. Unfortunately by the time we could put the pieces together with my Nanny it was really too late to do anything. I hope things can be different with your loved one. xxx

  7. Your grandmother sounds quite a bit like my Mamaw. She could do anything! It was incredibly painful to watch as Alzheimer's plucked the memories from her mind one by one and as dementia swirled her from one moment in time to the next. The Long Goodbye is a wretched and terrible thing to experience from the outside, and I wouldn't wish it on anyone. I sometimes found consolation in the notion that in her mind, she is living her truth. Whatever memory she was reliving was where she was at. We would tell her what she wanted to hear and sometimes even lie to her so we didn't upset her. The worst was when she would come back to present time in the nursing home and ask us if we were there to bring her home. That's what she wanted the most. Just to go home. That's where all her memories took her, and we were happy to go there with her.

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    • Gosh so many similarities!!!! You have to lie sometimes! you have to lie and you have to leave the facts out because they can't process the truth! They have no way of doing that! When my Nanny asks me where her long dead sister is I have to tell her she is somewhere near by because the truth could break her heart all over again! That idea of going home is so familiar to me as well. My Nanny is always getting her things together and saying "I better be going home now" or "My mother will have tea ready for me". It's so sad but if you can be inventive you can protect them from the sadness.

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  8. I've never experienced this in my family, but my fiance's family has. For his grandmother, her dementia was actually a relief to her and everyone around her. She was a hard, angry, bitter woman with many emotional scars before it came upon her. Now she is just a fussy old girl who finds humor in everything and has forgotten the traumas in her life. My fiance likes this side of his grandmother because the shadow of negativity that guided her life is no longer there.

    Thank you for your post. Your Nanny was and is an amazing woman.

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    • What an interesting other perspective. I do look at My nanny and think most of the time she's really peaceful and had she not had this illness perhaps she wouldn't have been. In many ways I felt it was so many emotional traumas that brought it on. As if she couldn't cope so she just shut up shop!!! Thanks for your lovely words 🙂

  9. What a great article on something that can be such a difficult topic for so many people. I work with a lot of folks with dementia and their families (I'm a social worker for the elderly). One thing I would have to say is that caring for a loved one with dementia can be incredibly stressfull and demanding; it is one of the hardest jobs out there. I often have to remind family caregivers that they shouldn't be afraid to ask for help when feeling overwhelmed. To be an effective caregiver, it is just as important to take care of yourself and allow yourself to take a break.

    Best of luck on your journey caring for your grandmother, it is so wonderful that she has such loving and thoughtful family members looking after her!

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    • Wow I think what you do is amazing. For a brief spell many years back I worked in a home for people with dimmest is and I found it impossibly hard. It's one thing to give your time and energy to someone you love but it's so much harder when you don't have a personal investment. You are damn right it's one of the hardest jobs out there and I am very glad there are people out there like you who can do it! Getting respite care is becoming harder and harder with funding cuts! It's terrible! My mum used to get one day a week (10 til 3) where nanny would go to a day centre and mum could get chores and errands done. They closed the centre down and everyone lost their jobs, the cared for lost their day out and the caregivers lost their tiny bit of respite! A terrible shame!

  10. This is simply beautiful, thank you for sharing. Your comment that caring for a older relative is like caring for a child that won't grow struck me – it's so painfully true! Although I haven't had a close experience with Alzheimer's, my mother had a massive stroke last year leaving her unable to communicate or ambulate independently. I find myself often thinking that if maybe I just said it a different way, maybe if I was just a little more patient, maybe if we try just one more time, we'd have different results (statistically unlikely) but it serves no purpose other than to pain us and pass the precious time we have left. This is a timely lesson for me. My mom taught me to simply love and support individuals as they are, yet it is so difficult to do the same for her without wishing for more. Thank you!

    Your grandmother sounds like a wonderful woman and she is lucky to have raised such a loving family.

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    • My Grandma has had a very long illness… She first started developing it, we think in about 1999 and I have not always felt as patient with her as I do now… And even now I get frustrated at her and doubly frustrated at me for getting like that with her! It's really, really hard to care for someone that you used to depend on! I think everyone who does it needs to learn to be patient with and forgiving of themselves as much as anything! Lots of love to you and thank you for your kind words xxx

  11. I'm having a similar issue with my grandmother. She was never the same when my pap passed 10 years ago, but in the past couple years she has been really deteriorating. My parents don't know if she has dementia or Alzheimer's because she refuses to go to the doctor. She has now started telling stories of things that happened to her but actually didn't. She once told my dad she went to the store with my aunt and bought a lawn mower and none of this actually happened.

    It has been really hard lately because she is refusing to come to my wedding. She only has four grandchildren and I'm the only girl and used to be her favorite. She first said it was because she had nothing to wear, and then it turned to her not having a ride (which she does). Then it was because it was too far away. Then it was because she didn't want to stand. Then it progressed to her not wanting anyone to stare at her and make fun of her behind her back. It really upset myself and my father because she will not attend her only granddaughter's wedding. When she came to our wedding shower, she ate the food but did not bring a gift or even a card and didn't speak to me until she left. It's like having a different grandmother.

    • I am so sorry for you, it sounds like you are going through a really awful time. It sounds more like dementia to me. I am no diagnostic expert but I've had encounters with both and her behaviour seems more in line with dementia. It's really tough, I know but you have to keep remembering that you are still her favourite and the real her wouldn't miss that wedding for anything. This isn't really her, it's her illness and it's her fears talking. Not much comfort, I know but it helps a little to keep it in mind! On a deeper level She loves you as much as ever! My heart goes out to you at this horrible time and I truly hope you find some answers soon xxx

  12. Such a lovely story and I'm glad you can look at the positive side of things in that she can't remember that she can't remember and so it's easier for her. The hardest part of Alzheimer's is the toll it takes on the people that can remember and are aware of what's going on. We cared for my husband's grandmother in the early stages of her disease before we had to put her in a facility. She started off, as most do, fighting to hold on to memories and being salty about everything because she was frustrated at the loss. Eventually she shifted to the point where she wasn't upset about it anymore because she didn't even know what she had lost. She had practically raised my husband and it was very hard for him to see the lights dim inside the person he loved so much. She lived with the disease for three years before passing away this February at 93 and by the end she couldn't carry on a conversation and had no idea who he was. We like to think that she knew she loved him and that he was special to her she just couldn't verbalize it.

    In case anyone is interested in helping I would suggest getting involved with your local chapter of the Alzheimer's Association. The Walk to End Alzheimer's is their biggest fundraiser and is in over 600 cities. It's a wonderful opportunity to raise funds for a great cause and meet other people who are living with it. We are on our fourth year of participation and it's been amazing to be reminded that we aren't alone and that others have gone through what we went through. The Association also offers support via a help-line, clinical trials to help find a cure, and advocacy opportunities.

    • I will definitely get involved with them, it sounds wonderful! I'm really up for a walk to end Alzheimer's! So moving what you said about her loving him and not being able to verbalise it! I think that's very true and I also think you are there for the person they used to be not just the person they are now. I try and hold myself up to my Grandmas True expectations and hopes for me and if I'm doing alright by those I must be doing alright now! Much love to you and your brave husband! She's free from all that now and he can remember her all the great things again!

  13. I love that your family really have come together to care for your grandmother. My Gran had 6 children, all of whom had partners, and 11 grandchildren, again many of whom had partners. Somehow by the time we got a diagnosis of Alzheimer's and Dementia my mother was the only one doing the heavy side of the caring; taking her to medical appointments, making sure she was well fed, fixing the house up, getting her a cleaner that we could trust… I did my best to help out when I could, but often I could only take over once or twice a week, which if the whole family had done would have covered the whole week!
    My gran got ill last year and the doctors did a terrible job of caring for her. Because of her Alzheimer's and Dementia she couldn't tell them how long she'd been feeling ill, how long since she went to the bathroom, how long since she'd eaten a full meal; and they completely ignored both my mother (who obviously did know) and their own medical records that showed that her previous appointments had the exact same complaints. About 6 months after she first told us her tummy hurt, on the same day that she passed away, we found out that a scan showed part of her bowel was totally necrotic. Poor lady must have been in agony. I've sworn to never again allow the NHS to fob off a loved one. You'd think that doctors would understand the struggles of understanding a patient with these conditions…

    I get angry now and then because our last memories of my gran aren't of joy and laughter like the rest of the family. Ours are full of pushing for doctors to take us seriously, trying desperately to keep her healthy, to make her eat. My mum gets angry that none of her siblings stepped up to help, I get angry that I'm the only one of my cousins that had to get grandma almost naked for her heart check-ups, and to rush her to hospital in ambulances and to hold her while she vomited and shook because the stupid doctor gave her the wrong medicine.

    It's wonderful that you seem to have a proper support system, not just for your grandmother, but also for yourselves. No one should have to feel bitter about caring for someone.

    • I understand and have experienced SO much of what you say here! Obviously I have been really selective about what I put in the post but trust me I feel you! I also have an elderly father who suffered a heart attack whilst in hospital and was told to go back to bed and that he had the flu!!!! He lay there in agony for 4 hours until my sister, who worked at the hospital came in out of visiting hours and she managed to get him the help he needed! The elderly are not cared for properly! It's terrifying because if things go according to plan we will all be elderly one day and what have we to look forward to? I also very much understand about the families thing… I don't know why it is that way but it seems in every case I know of the burden is unequally shared! I try to take comfort in my own clean conscience but it is impossible to avoid feeling let down and frustrated!!! Much love and understanding from me coming your way 🙂

  14. I too am currently dealing with an ailing grandmother (late stages of dementia) and understand the constant reminding of yourself that this isn't a phase. They will never return to the vivacious person you once looked up to, and even worse that my significant other will never get to hear the tales of how she came over from Germany on a boat after the war with an American soldier that she fell in love with from the woman who experienced it. It's a very mentally exhausting disease to deal with in a loved one, and at 23 I wasn't ready to deal with something so heavy until years down the road. I wish you all the best in coming to terms with such an illness of someone you love, and hope you find comfort in the fact that in the deep corners of your grandmother's soul and mind she still retains some of her former self, and she loves and appreciates you more than you can ever know.

    • I found this very moving!!! I talk to my husband and my brothers girlfriend about the way she used to be all the time but they can never really know! My nanny was such a story teller and in the past I would listen to her anecdotes for hours. During her illness I have retold her her own stories and she enjoys them as if for the first time. Strange, lovely but very hard to cope with! My heart goes out to you!

  15. Thank you so much for reminding me that there are others out there going through this loss. I have a hard time verbalizing to 'outsiders' (those who haven't dealt with Alzheimer or Dementia) how it feels to slowly watch the very educated, proper and lovely Nana I grew up with disappear to be replaced by someone hateful and distant. This post has me in tears but for the first time in a while it is because I don't feel lost and alone with my grief. Thank you.

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