Dementia Support Line
Real stories
Treasured moments and challenges as a young carer during coronavirus
19-year-old Maisie is a student currently living alone with her nan, Terry, who has Alzheimer's disease. Being a young carer at any time brings challenges, but coronavirus makes daily life harder for Maisie, as she starts to feel more and more lonely.
My Nan, Terry, is 66 years old. She was diagnosed four years ago with Alzheimer's disease. I am staying at my Nan's house with her during this coronavirus lockdown period.
She has always been very intelligent, and hard-working. She worked in the banking industry for years and would regularly travel abroad to train people.
She is a very loving person, towards her family and especially her dog Pepper.
Our family unit
My family have always been very close, although like all families, we have our problems.
My Nan has seven granddaughters, including myself! So we’ve kept her busy throughout her years! She is missing them all very much and we make sure to talk about them. She’s always asking what they’ve been up to.
Luckily, with the power of social media, I can usually keep her updated. However, keeping in contact with them is quite difficult as she struggles with telephone conversations.
My Nan and myself have always been close, as have her and my mum. We used to go and visit Nan most weekends.
Since I was little, Nan has been with us on Christmas Day and we usually have a family celebration on Boxing Day.
It is only the two of us living here now, and the dog.
Challenges as a young carer
For anyone taking on a role as a carer is challenging, especially as a young girl during a global pandemic.
I am finding it increasingly difficult to care for my Nan as it is a really lonely and isolating time. More than anything, I miss my family.
I started university in September so I have been used to living with and being surrounded by people. This is such a lonely time for me.
It’s very difficult having to continually say 'No, you can’t go and visit your friends because of coronavirus'. She asks many times a day and in the end I just feel horrible always telling her she can’t.
As dementia progresses
We are struggling to find things to do. There are limited things that she used to enjoy which she can still do.
My Nan always enjoyed reading, so it is very difficult for her now as she can no longer follow the story.
Shopping is another one of her favourite things, so we have been doing a little bit of online shopping here and there.
But Nan gets very emotional when she discovers things she used to be able to do. She cries at least once a day, usually more. She has deteriorated very quickly in recent times.
We are realising how much more support she is going to need when life gets back to normal.
Treasured moments
This is a clip from my favourite video of my Nan. She isn’t really a dancing person, but she does enjoy music and seems to really enjoy musical films at the moment. Recently, we have watched Bohemian Rhapsody, Rocketman and Grease in the past few weeks!
I have to say, as challenging as this time is, the time I am spending with my Nan now will always be my most treasured memory.
We are spending so much time together and the old nanny I knew comes out every so often and we really laugh together.
Although this is extremely difficult, it really is worthwhile as I feel like I am giving back to my Nan what she gave to all of us!
Supporting a person with dementia at home
Take a look at our suggestions for carers on how to best support someone living with dementia while at home during the coronavirus pandemic. Alzheimer’s Society and others are here for you over this time.
John O'Rourke
saysMaisie you're an absolute credit to your family. This pandemic will be over one day and it'll be even sweeter seeing all your family again. I wish you and your family nothing but strength and happiness.
Diane
saysMaisie you are an amazing young person. I am shielding my Mom (82, diagnosed with Alzheimer’s last year), so completely understand everything you are saying. It’s so hard having to keep saying many times everyday that she can’t go out, and worse seeing her sadness and decline. But know you are doing an brilliant job keeping your Nan safe and you can be very proud of yourself everyday for the rest of your life for what you are doing xx
Diane
saysFirst time that ever commented on any social media platform! Been awake most of the night just couldn’t sleep. Reading Maisie’s stories I felt for the first time that I am not alone in the way I’m feeling. Thank you for sharing your experience. I too am shielding my Mom (82, diagnosed Alzheimer's last year). I completely get what you’re saying and how difficult it is. But like you, however hard this is we can be proud that we are keeping our loved ones safe. Stay positive, you are an amazing young person x
Kirti
saysMy husband has early onset alzheimers at the age of 49. He is 55 now. I am fortunate that my son and his wife and new baby live with me. However during lockdown, it has been very difficult caring for him. He no longer talks and makes grunting noise constantly. At times it gets louder and louder and it’s frustrating not knowing what is causing it. Is he in pain? Is he hungry or thirsty? After going through all checks it still carries on. I feel I have lost the person I have been married to for the last 33 years. The only words he still says are swear words. I will never understand why this is.
Janice Louther
saysWell done to all you young carers as well as the ‘ not so young carers’. I salute you all for being there for your family. I am the primary carer for my 84 year old mother suffering from Alzheimer’s and I find it really very challenging especially at this time with the pandemic. I have learnt not to plan anything in advance but to take it one day at a time as everyday is different and presents its own challenges. Night times are also the worse for me as I hardly get in any sleep. May the Lord bless you all with more patience than usual as you care for your loved ones and make lasting memories.
Liz Stevenson
saysWhat stories, my husband was diagnosed last year so we are very early stage. These slices of life have helped me to know what to expect in the future. Well done all carers
Lynne Issitt
saysMaisie what you are doing for your nanny is really lovely as at the moment we can't do our usual things .My husband is 79 and was diagnosed with dementia nearly 3 years ago but he has got to the stage of not knowing who people are or were things are .We have lived here for 21 years and he keeps asking when we are going home . All ways remember better times will be back and we will be able to take them for walks etc take care xx
Alex Sapulla
saysWell, Im only son and my mother has Alzhaimer since 2015. She is divorced and basically Im responsible for her in all aspects.
She lives with me and I used to have help of carer, but she requested to leave for other job that she found better. So now, in the middle of a world wide pandemia, it's just me and her alone. Im 32 years old and I live in Rio, and I work as deck officer in the offshore industry here, which brings to me more difficuties, because after all, I stay 2 weeks away from home.
I know thats literally a battle to be won every single day. But as long we can fight we'll stay together and fight.
I send my best feelings and hope to you Maisie, as we share this experience together.
God bless you
Elizabeth Maunder
saysMaisie, I have a granddaughter just like you, at the start of the lockdown we talked and I tried to encourage her to go home to her mums. She just turned 15 in April. Her grandfather, my husband Frank has early onset Alzheimer’s, diagnosed 5 years ago. He is hard work at times so on hindsight I am totally thankful she stayed, especially for me. She is the sunlight of my day every day...we argue or get annoyed with each other but considering we only live in a two bedroom apartment that’s to be expected. She is what keeps me from depression or wanting to give up.
These memories you are making with your nan will never leave you Maisie,,you will be able to smile in the future and the experience will make you an even more caring person in the future.
Linda Vereeke
saysMy Mom is 84 and started w/Dementia approx 3 yrs ago and has progressed to today w/the isolation to a psychiatric ward w/psychosis
Dementia . I am so saddened and heartbroken to see her go thru this , it is literally tearing my heart apart. When I read your story it teared me up. I want to help other people who have gone what I experienced in hopes of being a support system for others as I wished could of been for me :( , IF YOU EVER WANT TO REACH OUT TO ME FOR SUPPORT, I WILL BE HERE !! Just comment and I will FWD my email address and phone nbr. GOD BLESS YOU for taking care of your grandmother...you WILL be blessed :)
Louise Ranger
saysYour nanny is very lucky to have such a caring granddaughter....my mum is totally losing the ability to speak but occasionally manages some great swear words in with the babble....we all crease up as she was never a swearing person....
We all can find great memories to cherish in years to come and tell the stories about....enjoy her sweetheart, it will be hard but it's totally worth it...
Stay safe and stay strong ❤❤❤
Lou x
Catherine Ping
saysMy hat goes off to you Maisie, at your age to take on such a challenge is absolutely amazing. I took my Mother out of her care home at the start of April because of Covid 19 and thank God I did as her care home has had cases of the virus and fatalaties on her old unit. She has had dementia for 13 years and she is now at end stage so it's really tough as she can't be left alone. Nights are the hardest when she doesn't sleep and when she gets aggressive, but like you I do still get glimmers of my old Mum and it makes all the stress worth while just to see her smile. It is really really hard, but a small scarifice just to have her for a little longer. I lost Dad in the same care home in February, with Alzheimer's so leaving Mum there with lockdown wasn't an option.
Laurenza Matthews
saysJust keep smiling and God will Bless you. You are doing a great Job and it seems hard especially during this time of pandemic but if you can take her out into the garden for at least 30 minutes I am sure she will love it. If you drive take her for a scenery drive with the window slightly down and let the breeze come in on her face. yes lockdown is hard on all of us its a change in our world my dear.
Elizabeth Owen,
saysMy husband of 55 years is in a Care Home as he can neither walk nor stand. He enjoys talking to his brother on the phone but just wails down the phone to me about how awful it all is. He has a daily paper and I send him a letter with pictures everyday, except Sunday but this is not enough it seems. He is obviously missing me but what can I do?
Anonymous
saysHello Elizabeth,
Thanks for getting in touch. It sounds like you and your husband are going through a very challenging time. We would recommend speaking with one of dementia advisers for information and advice. They will listen to your situation and provide you with support.
Please call our Dementia Connect support line on 0333 150 3456. (More information on opening times: https://www.alzheimers.org.uk/get-support/dementia-connect-support-line)
Wishing you both all the best, Elizabeth.
-
Alzheimer's Society blog team
Valerie Woodcock
saysHi Elizabeth, you can rise above all the moaning your husband does and it will become “Water off a duck’s back” as it has become with me. We have carers into the house, My husband is bedbound with arthritis and other issues and he calls the carers sweetheart and angel but has plenty of other ones for me. I jut carry on doing as I always have and try not to get upset. Dementia is a very hard road to walk and people don’t always appreciate the unpaid carer. Take care and keep safe.
Sarah Nixon
saysMy Nan was diagnosed with vascular dementia last year. We moved her into our house with us. Quarantine has been tough at times as Nan doesn’t Always understand that She can’t go out or go to her day centre to see her friends. We have been busy I have kept her hair appointment - in the kitchen, I have become her hairdresser every week. We chat the same way she does with her hairdresser.
Everyday I have activities set up for the day for her and the kids to go - working in a primary school, I have an untold amount of resources of messy play and general knowledge of early years learning which has come in very handy in keeping them all occupied with art and crafts. Nan has loved it! Also puzzles she has a new found love of puzzles. I ordered some from Active-Minds and then some from eBay.
The kids have loved spending quality time with her, playing Guess Who was hilarious as she told the ‘yes Bernard has a beard’. It has been tough and we have seen a decline in nans mental and cognitive wellbeing as she isn’t getting the stimulation and socialisation that she would normally but we are doing our best under the circumstances.
We have all remained healthy, happy and safe.