Mithlesh Mittal and family at Memory Walk.

Better talking: The importance of accepting help when you’re caring for someone with dementia

Mithlesh Mittal has found it increasingly challenging to support her husband as his dementia progresses.

Since her husband Shashi was diagnosed with dementia in 2015, life has become increasingly tough for Mithlesh Mittal.  

‘It’s been very difficult in recent years,’ she says. ‘He now forgets everything and doesn’t recognise anybody. Looking after him is a big challenge which I cannot take myself alone.’

Mithlesh has called upon all the help she can get, including family members, professional carers and Alzheimer’s Society. And despite the additional impact of the pandemic, she remains determined to continue supporting 81-year old Shashi.  

‘I’m not young and it’s very tiring, but it’s my duty to carry on for as long as I can,’ she says.

Chess champion  

Mithlesh and Shashi both grew up in India and married there in 1964. The following year Shashi, a maths and science teacher, decided to move to England.

‘The family went crazy,’ recalls Mithlesh, who was a social worker at the time. ‘My Dad got mad and said, “You’ve just married my daughter!”’

Shashi got a job in the West Midlands as a trainee cost accountant, and over the years worked as a cost clerk and for a housing association. In his retirement he was an interpreter for the police, schools and hospitals. He was also a chess champion who taught other family members how to play.

Mithlesh joined Shashi in Wolverhampton in 1966, later working as a primary school teacher. The couple have three children and seven grandchildren.

Mithlesh Mittal with her husband Shashi.

Shashi and Mithlesh.

Worst time  

It was in November 2014, during their 50th wedding anniversary celebrations at a Hindu temple, that Mithlesh first noticed changes in Shashi’s behaviour.  

‘He wasn’t greeting guests or celebrating, he was just looking at people like he didn’t know them,’ she says. ‘It was out of character. I felt he was lost in some way.’  

Shashi struggled to follow the instructions of the priest and afterwards forgot that he had already paid him.  

Such memory problems continued at home, which Mithlesh found very challenging.  

‘He was helping me in the kitchen and garden but was asking the same things over and over,’ she says. ‘Anything that was going wrong in the house, he was blaming me – he accused me of touching his laptop while he was out. But he also wasn’t believing that anything was wrong with him.  

‘That was the worst time of my life. I couldn’t take any more, so I went to the doctor.’  

The GP gave Shashi some tests before referring him to a mental health clinic, where a psychiatrist diagnosed him with mixed dementia in June 2015.

‘Can I cope?’  

Mithlesh did her best to support Shashi over the next year but was finding things very difficult. Having read about a local dementia café in the newspaper, she went along with Shashi in August 2016.  

‘I was feeling awkward and thinking, “Can I cope here?”’ she says. ‘But I met Jane Round from Alzheimer’s Society, who was so helpful, welcoming and friendly. After that, my life started to get better.’  

Mithlesh later attended sessions tailored for South Asian communities, where she met Anuja Jalota, a Dementia Support Worker.  

‘She used to visit us at home if I needed to discuss help from social services. After lockdown she has been ringing to find out about Shashi’s health.  

‘The cafés were brilliant – they were a saviour and gave us a new lease of life,’ says Mithlesh, who also got involved with a music project and later set up a dementia café with some of the people she met there, called Cogs.  

‘Anywhere I can take him, I’ll take him,’ she says.  

Come running  

Shashi did morning yoga every day for 15 years and was a good swimmer, but by 2016 was unable to do either. The following year, he stopped attending the organised park walks that Mithlesh had been taking him to.  

‘I tried my best to help him continue with his interests as far as he could, but by 2018 everything had stopped,’ she says.  

Shashi, who also has diabetes, is now supported by professional carers day and night.  

‘They’re helpful and it gives me respite to go shopping or to the park, otherwise I’d go mad,’ says Mithlesh.

Shashi enjoys drawing, so Mithlesh tries to encourage him with pencil and paper, and she also plays the harmonium and sings to him.  

‘He loves listening to the music,’ she says. ‘It makes him more responsive, he’s not as blank.

Mithlesh Mittal outside with some family members.

Mithlesh and Shashi receive excellent family support.

Putting her husband’s needs first means that Mithlesh has less time than ever for herself.  

‘Every day is a new day, as my daily routine depends on his mood,’ she says. ‘You can’t plan anything with friends, so in that sense life is gone.’ 

Mithlesh and Shashi receive excellent support from their children and grandchildren, who visit regularly (outside of lockdown) as well as making phone and video calls.  

‘I know if I need any help, they will come running,’ says Mithlesh. ‘I’m very lucky in that sense.’  

The family has also done some fantastic fundraising for the Society. Mithlesh’s daughter has taken part in three Memory Walks in London, while a grandson arranged for the whole family, including Shashi, to do the Sutton Coldfield Memory Walk in 2019, raising £655.

Slowed down  

The suspension of face-to-face services because of the pandemic has made life worse for both Mithlesh and Shashi.  

‘I think he would have done better if he was still meeting people and laughing and playing games, but you can’t do all that at home, so he’s slowed down,’ says Mithlesh, who along with Shashi received her first dose of the COVID vaccine in January.  

‘He also doesn’t like to be ignored, so if I’m on the phone he’ll get angry and shout, “Put it away,” and hit the phone.’  

More comfortable  

Although people’s understanding of dementia has improved generally, Mithlesh feels that better awareness among South Asian communities would help people to get the right support.  

‘I think people in the temples and holy places should do more. After lockdown they could have small gatherings. I could go and help,’ she says.  

Mithlesh has become much more comfortable discussing Shashi’s dementia with people outside the family.  

‘In 2014 I was so scared to tell people that anything was wrong, in case they might think he was mad,’ she says. ‘But I don’t hide anything now. In fact, it makes me feel better talking about it.’

What can you do to help?

You can help ensure that more carers like Mithlesh receive the support that they need.

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19 comments

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It all sound so familiar , wishing all the best x

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Interesting reading but as usual it appears that a carer is working his/her socks off no personal time little quality of life exhaustion. I am having someone coming to see me next week to tell me about all the wonderful things that will help me. I’m not holding my breath as I have read mountains of literature from many sources and have yet to find anything that helps.I am in contact with Carers in many parts of the country and we are all in the same boat and we are angry because little has changed. It needs help from the government I nearly said more help but as there is no help the word more is irrelevant..I don’t apologise for being pessimistic but there is no reason to be optimistic unless there is a massive change by the nhs.

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I agree with everything you have said. I’ve read so much about the condition,
done it to death ,doesn’t help when the person with dementia fights you on everything, I’ve had to take over everything that’s involved in running the home. I’m struggling with my own health.

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Thank you for this blog & being brave to help to get publicity for the appalling situations people have to cope with nursing loved ones at home. Its a huge strain & during the pandemic very little help has been permitted. However our NHS has "Continuing Healthcare" benefits available to help providing the overall situation is "complex". This means that an Assessment is required. Initially your GP can get this arranged.
If you qualify for benefits then finance is provided by NHS covering the total care needs plus respite care for the main carer (Partner).
I launched a website after my Wife Pauline died as we managed to get these benefits from NHS, but had to fight for our rights for this to be achieved. Had we been better prepared then this Assessment process might have gone better. The benefits were backdated when we won the required Appeal.
To help people to prepare for this valuable benefit which is tax free go to https://continuinghealthcare.wordpress.com/
Hope you achieve the essential care & get the best help available.
Peter Garside

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Kudos to this great woman, firstly for having been able to immensely care and support hubby. But most importantly for having the courage to share her experiences. Mental health issues are still stigmatised yet there is so much help out there. My wish is the population gets the advice, information and support they need. That way early intervention becomes so critical and takes off the burden from both service user and family carers allowing respite, avoiding stress and burnout.

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Just what I needed to read as my husband with Alzheimer’s and mixed dementia and registered blind sometimes makes me wonder how we will manage. Reading Mithlesh’s words are inspiring - thank you

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I need assistance and caring for partner 81 who has vascular dementia .I am 85 and have been coping now for over 3 years without a break
Any help and advice would be much appreciated

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Hello Mike, thank you for getting in touch.

We'd recommend calling our Dementia Connect support line on 0333 150 3456. Our dementia advisers can listen to your situation and provide advice, information and support. The support line is available seven days a week: https://www.alzheimers.org.uk/dementia-connect-support-line

You can also contact our advisers by email at [email protected]

We hope this is helpful, Mike.

Alzheimer's Society blog team

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You and me both Mike. I wish I knew the answer to this but I'm in a very similar position to you. My wife has been in slow decline for ten years and like you I cannot remember the last time I had time to myself. I know my partner would not tolerate a stranger sitting while I have any R&R. Family all tell me I'm doing a grand job but nothing practical. Love her to bits but cannot find any practical solutions for respite. Feel free to write back cause I know exactly how your feeling. Take care. I'm thinking of you.

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Thank you all for your kind comments.
We appreciate your love, care and support.
Love you all XXX

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Hi my name is Manorama (Mita) my husband has Dementia he is 75years and I am 69years old and lockdown is very difficult to look after him but I am trying my best

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We all love you Ammaji. No one should have to go through this but you are so strong. Xxx

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Great and very strong person is Mithilesh bua as we call her because she is my father's first cousin. A musical family they would all sing together on Hormonium and piano. Shashi was fond of chess and we played together. He would take me to a pub in Wolverhampton for beer and bua would prepare brilliant parathas. All three children were in school and growing very well. We used to drive down from Cardiff where I was pursuing my higher studies and training. These were 1981 to 1984. We are back in India since but our memories of time spent with Shashi and Mithilesh bua are fond. When our son was born we first went to them to seek blessings as they were the only closest family we had in UK
Looking after Shashi with such devotion I salute my bua

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Looking after someone with dementia is very demanding and challenging. Your strength and determination have enabled you to cope extremely well under the circumstances. As your son-in-law, I admire your patience and commitment in providing the much needed care for Shashi, my father-in-law. Keep being strong!

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You are so amazing mum! We all love and respect you so much. We are always here for you. X

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Well done Mom for sharing your story and journey.
We are here for you both to support and care for you in any way we can.
Dementia is a very cruel disease for the victim and loved ones. It is taking dad away from us slowly but he will always be our dad and grandad.
You are both loved and respected very much XXX

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Us grandchildren are so lucky to have a strong independent woman to look up to :) Love you Nanima xx

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Mithlesh, (my mum) is an amazing woman who not only looks after dad but is always there for her children. We are so proud of her!
Love you xx

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Well done Mum for being such a strong woman. We all love, respect and will support you in any way possible. You will never be alone to face challenges that lie ahead. I may be your son-in-law, but you are my mother.

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