Real stories
Changes to Gran's routine during coronavirus really impacted her dementia
India's grandmother, Brenda, has been a huge influence on her life and career path. India shares how the pandemic affected her gran, who has dementia with Lewy Bodies, and how the family continue to support Brenda since she moved into a care home.
Gran has always lived in the same house where my dad grew up, and my parents and I had always lived in the same area.
I have fond memories of Gran taking us on holidays to Edinburgh and York. We’d always be out doing something as a family whether it was picnics on the beach or days in the park.
Troubled by changes in Gran's behaviour
It was in 2020 when coronavirus hit that Gran became poorly.
We had been worried about Gran for a few years.
At Christmas time a few years previous, we noticed she was a bit off, but we thought she was just having a few drinks and wasn’t used to it.
As coronavirus started, Gran began wandering around the streets and it was really scary. She was so used to her routine and being social that when that all stopped due to coronavirus restrictions, I believe this really impacted her.
On one occasion, Gran walked from her house to my mam and dad’s house. It’s a 25-minute walk for me, but for a person of 83 with Parkinson’s and arthritis during a global pandemic, I can imagine it would take even longer. It was February or March and the weather was so cold.
My parents opened the door and Gran said ‘I’ve had an argument with your dad'. My grandad has been dead for 17 years. Gran was fully dressed in little heeled shoes. Obviously my parents had to bring her inside, so they put her in a separate room (due to coronavirus) to protect her.
Even without dementia, it would be scary for someone 83 walking about alone during the day for such a long time.
Seeking additional support measures for Gran
From June 2020, we had carers coming in three times a day for 20 minutes at a time. It wasn’t enough, because she still went out at night.
I was so worried about her.
Social services put alarms on Gran's front door so they would be notified when she left the house at unusual times, but we had the police, fire brigade and ambulance called out to her numerous times.
Gran would ring Mam and Dad during the night with hallucinations, sometimes thinking my grandad was there but sometimes that her parents were there. It really upset me. I never thought I’d be telling my gran that her mam and dad weren’t alive.
During the pandemic, I couldn’t help as much as I wanted to because I couldn’t see Gran – we wanted to keep her safe.
I lived around the corner from my Gran but I was still working, and I didn’t want to risk exposing her to the virus.
Moving in to a care home
When Gran eventually went into a nursing home in December it was such a weight off our shoulders.
My parents are such a great team, especially with my mam having multiple sclerosis (MS) - she goes above and beyond for Gran. I am so thankful for my parents. They’ve done so much to push to get Gran's dementia with Lewy bodies diagnosis and get her the help and support she needs.
It was hard not being able to visit Gran at the care home for such a long time.
Now I visit her on Sundays with my mam and dad. When I was growing up, and prior to the pandemic, Gran would come round to our house at 11 o’clock every Sunday morning for a bacon sandwich or a ham and cheese croissant, so we're continuing a tradition.
I have spent every Christmas since birth with Gran so it was strange to have had our first Christmas without her last year as it was her first Christmas in the care home.
Living well with dementia
Gran still likes to dress really well. She always likes to look nice.
The only time I had a bit of a shock was after coronavirus and we were finally able to visit her in a pod outside the care home.
She’d lost so much weight, she was so frail, she’d had a mini stroke. But the thing that was really different was her hair was really long. She always had short curly hair, had a perm every two weeks.
She didn’t look like my gran.
I remember having a cry with my dad in the car park of the nursing home because I’d got such a shock. But now the care home have staff coming in again and last time I saw her she’d had her hair and nails done. She looked lovely and smart!
One time I went to visit her, Gran said ‘My handbag’s too small.’ She had filled it to the brim with random things. Next time I went to see her, I took her a brand new one as a surprise gift.
For the next few weeks, Gran would have her new handbag with her every time I visited. But then after a while, she was back to the old one. I asked her why and she said, ‘The bag you got is way too good for this place, I’m saving it for a special occasion.’
When I ring Gran during the day, we have great chats but her dementia is worse at night.
She always remembers to ask me about my dog, she prefers dogs - she is terrified of cats! It’s just so lovely that she is interested in anything that matters to me.
Gran's influence on my career
There are some people who have creative careers and their grandparents are like, 'When are you going to get a real job?’ My gran was never like that, she always encouraged me.
When I was 18, just starting university, Gran took me to buy my first professional camera and lens. It was a Canon 5D Mark iii and a Canon 85mm Prime Lens. I cannot thank my Gran enough for being so kind and helping me kickstart my career with such amazing equipment. It definitely opened a lot of doors for me.
My gran saw potential in me and was really proud of it.
I did a foundation degree in photography and then a top up in creative enterprise. I was the first person on my Gran’s side of the family to go to University.
All the photos for my graduation were taken on that camera Gran gave me.
Before coronavirus, I worked as freelance content creator for musicians and other clients around the world. I remember I would always text my gran before and after a flight as I am scared of flying.
I got my love of music from my dad. My gran and grandad were quite conservative, but my dad was into loud rock music.
My gran was never into the same music as me, but she was always interested in what I was doing. She always encouraged me with my creativity. She always asks about the bands I’m photographing because she’s genuinely interested, but she doesn’t have a clue who they are.
My artistry and career right now are fuelled by my desire to make Gran proud. She, my parents and my family have always been my biggest supporters, and now I just want to support her.
I’d do anything for my Gran, so I was really glad when I walked into work one day and found out my colleagues Lesley, Ingrid and Kate were taking part in Memory Walk, so I said I’d do it with them. I really want to raise awareness of dementia.
My puppies and I are ready for the South Shields Memory Walk!
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M Wheeldon
saysMy Brother has dementia , it is the most cruel horrible illness . Been poorly twelve years , Now it’s far to much for me to deal with on a daily basis . I am not in good health , and have to look after him 24 7 , I have tried every thing to get him in a nice safe home ,no one listens , Carer s give him a tablet in the morning , bit of porridge and tablet at night . So I have all the meals to make and give them to him , He is mostly in bed day and night , I have to do his shopping , and get his medication weekly , His laundry , his big bed all his bills and appointments , and his cleaning , I desperately need some one to take note of his and my predicament , Every thing left for me to deal with , Love him dearly he needs much more help now , Can not do one thing for his self ,
Anonymous
saysHello there,
We're very sorry to hear about your brother. You and your family must be going through such a difficult time. Please know that you aren't alone, and we are here for you.
We'd strongly recommend calling our Dementia Connect support line on 0333 150 3456 to speak to one of our trained dementia advisers. They can listen to you, and provide information, advice and support specific to your brother's situation. More details about the support line (including opening hours) are available here: https://www.alzheimers.org.uk/dementia-connect-support-line
We hope this helps. Please do call our support line.
Alzheimer's Society blog team
Andrew Mackay
saysRespite for Carers. Please apply for a person to come in to give you a rest. I have a person that comes in 3 times a week for 2 hours. That is my time to go and do shopping, sleep or just to chat to another person, as they say they are there to look after the person with Dementia, to give the carer some time off. Ps. The organisation that supplied the people to come and give me time out are called Crossroads. They are invaluable to me.
Virginia Torbert
saysWhat a wonderful piece! It is very uplifting, and even more so given how hard it is on family members when a loved one has dementia. My husband has been in a memory care home for about two and a half months. I could no longer keep him safe or comfortable at home. He is still adjusting, he gets wonderful care but he's a bit of a loner and quite stubborn so he still isn't happy being there. Fortunately I can still visit with him ( in his room or outside only, not in the common areas)
I wish you more quality time with your Gran. You are so lucky to have each other 😀