What it’s like to care for someone in the later stage of dementia

Phyllis wants to help prepare others by sharing her experience of what it’s like to care for someone in the later stage of dementia.

Phyllis, whose husband Tom was diagnosed with Alzheimer’s in 2008, is candid when discussing the devasting effects of his dementia. 

‘He’s like a child now,’ she says. ‘In 14 years, he’s gone from a grown man who ran his own plumbing company to a baby.’ 

Phyllis wants to show what it’s like caring for someone who is in the later stage of dementia. 

‘I have always put his needs first, to the point that Alzheimer’s has taken over my life. It takes over the whole family,’ she says.

‘We’ve had to learn to live with it and just keep going. I don’t know how we’ve done it.’

Phyllis and Tom

Phyllis hopes that others in a similar situation can take something from her experiences. 

‘I want to help people prepare themselves for what’s to come, and make informed decisions,’ she says. 

‘It’s a terrible, terrible illness, but you cope as best you can.’ 

Easy-going person 

Both Birmingham born and bred, Phyllis and Tom were married on a leap day – 29 February 1964. 

‘In those days, there was a tax rebate if you got married before March!’ says Phyllis. 

Tom, now 81, was a plumber all his working life, starting his apprenticeship at 15 before eventually becoming self-employed in the mid-60s. Phyllis worked in administration for a garden centre for 32 years.

The couple have three children and two grandchildren. 

‘Our first house was a self-build and Tom did all the plumbing,’ says Phyllis. ‘He was self-employed for over 40 years and was never out of work. He never advertised – all his jobs were on recommendation.’ 

Tom was always very easy-going. A lifelong Birmingham City supporter and season ticket holder, he enjoyed going out for a drink and spending time with his family.

Tom with his and Phyllis’s grandchildren

Tom with his and Phyllis’s grandchildren.

Horror and embarrassment 

It was in early 2008 that Phyllis first noticed changes in Tom’s behaviour. 

‘He started to forget words and simple tasks,’ she says. ‘On one particular job, he got frustrated with things that wouldn’t normally bother him. 

‘He also started reading out loud and taking offence at things rather than laughing them off.’ 

Phyllis thought that this was down to stress at work. 

‘Never in a million years did we think dementia,’ she says. 

However, following a doctor’s appointment and MRI brain scan, Tom was diagnosed with Alzheimer’s disease in December 2008. 

‘He wouldn’t listen and walked out of the hospital and drove home,’ says Phyllis, who was left alone and in shock. ‘We arranged another review at a different hospital, and he had the same reaction.’ 

Phyllis felt ‘horror and embarrassment’ at the diagnosis, while Tom maintained that nothing was wrong with his health. 

‘He gradually got worse and worse,’ says Phyllis, who recalls the police having to bring Tom home after he got lost. 

‘Sometimes you could see the old Tom flashing through, but it was an awful time.’ 

Fight for help 

Phyllis wasn’t offered any support or suggestions by medical professionals as to how best to manage Tom’s condition. Instead, the family put together a weekly plan, so that every day Tom would have an activity to give him purpose and keep him occupied. 

As his dementia progressed and he became less independent, they adapted the plan and found their own voluntary and paid support. 

‘We had to fight all the way to get help for Tom,’ says Phyllis. 

The family received much support earlier on, and again now in the later stage, from Kiran Daman, a Dementia Support Worker at the Society. 

‘Kiran has been extremely supportive, using her knowledge and experience,’ says Phyllis. 

‘She told us about the different places we could take Tom, and also helped us get a grant for him to have a social outing with one of our daughters. We were very grateful for that.’ 

Kiran also put the family in touch with Age UK, who provided lots of ideas for supporting Tom. Tom joined a buddying service run by Birmingham City Council and volunteered for a couple of charities who specialised in employing people with disabilities. 

He also joined a gardening club and men’s club, while the family employed a private care agency to take him out and about. 

‘We did have some pleasant times, but you remember the horrible times more,’ says Phyllis.

No life 

As Tom’s dementia has progressed, Phyllis has found it extremely challenging to support him. 

‘I’m quite a strong person, but I must admit I’ve got very angry with him a lot. I even blamed him for having dementia,’ she says. 

‘At one stage, he just kept making noises and I told him to shut up. I had to leave the room and shut the door. That was a horrible period.’ 

About six years ago, Tom lost all his mobility after falling off a chair, forcing Phyllis to retire from work. Tom hasn’t left the house since and is now hoisted from his bed to a chair and back every day. 

‘We try to give him a routine. Up in the morning, washed and dressed, and the reverse at night. He sits in the lounge in the daytime and is involved in all the daily family activities,’ says Phyllis. 

Phyllis is determined to keep Tom at home and has converted the house rather than putting him into a care home. 

‘I have carers come in twice daily to help get him up and put him to bed, and twice weekly I have people in to sit with him, so I can go shopping for a couple of hours,’ she says. 

‘It’s no life for him or me really but I’ll never give him up, even though it’s been awful over the years. It’s a personal choice I’ve made.’

Tom with his and Phyllis’s daughters

Tom with his and Phyllis’s daughters.

Don’t give up 

Phyllis is sharing her experiences to help other families better prepare for what might be to come, particularly as she feels that dementia can be incompletely represented in the media. 

‘It’s not just a bit of memory loss,’ she says. ‘As the brain is dying, it shuts down all the body functions and significantly changes the person’s personality. 

‘Tom has no speech now. He can’t smile, so he cries, which means he recognises you. 

Our dementia advisers are here for you.

‘But the adverts I see are ladies sitting on the settee, smiling with their daughter or granddaughter. I’m thinking, that’s not real life for us. It’s glamourised – they don’t show you the nasty bits.’ 

Having been through it all over the past 14 years, Phyllis offers support and advice to those in a similar situation. 

‘If people are at the end of their tether, they can keep going. Don’t give up,’ she says. 

‘You’ve got to have support, but you’re the ones who have to find it.’ 

Since we first spoke to Phyllis, Tom’s condition deteriorated further and he can no longer sit in his chair. The family continue to support him at home, with daily help from carers and district nurses. 

How can you help?

£9.90 could provide someone’s first conversation with one of our telephone advisers. 

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Apart from 2 hours a week, when a carer sits with my dad who's 87, mum can't go anywhere. No dementia/Alzheimer's nurse in our area to visit to give advice and understanding. Mum is 81 and a phone helpline is not her thing. When you get older its face to face help that's needed. I don't think she understands how things will get progressively worse. He chokes on his food and barely leaves his chair.

Hi Andrea,

We are sorry to hear about the difficult situation with your mum and dad.

We appreciate that a phone line might not be right for your mum, but we recommend you calling our Dementia Connect support line on 0333 150 3456, where one of our dementia advisors can give you advice and support specific to your mum and dad's situation. More information, including opening hours, can be found here: https://www.alzheimers.org.uk/dementia-connect-support-line

You may also benefit from talking with other people who have gone through or are going through similar experiences within our online community, Talking Point: https://forum.alzheimers.org.uk/ It's free to use, and open day or night.

We hope this is helpful.
Alzheimer's Society blog team

My mum has dementia and Alzheimer’s It’s been very,very challenging she's 87 At the moment we are at the stage where she wants everyone around her and cries if one person don’t turn up. My brother lives with her but I go daily and my sister and I take it in turns to put her to bed. She shouts leave me alone if we try to get her to go to day centre although she loves it when she is there. She is at the stage where her clothes are now hanging on her ( size 6 ) which we just bought for the cold period. She’s also stopped talking about the old times. We had to care for my dad also but he died of an awful cancer but we kept him at home So that made her a lot worse at the beginning now she don’t mention him. Where am I at progressive stage as it’s so hard and really don’t want to put her in a home. She has care in the morning and there is 5 in our family so we will support her Unfortunately it does come with some arguments. She’s my mum and I love her so much

Hi Carolyn, we are sorry to hear about the difficult time that you are your family are going through.
It sounds like you might benefit from our support line, which can be reached at 0333 150 3456. You can speak to one of our trained dementia advisers and they will listen to your situation with your mum and give advice and support.

You can find more details about the support line (including opening hours) here: https://www.alzheimers.org.uk/dementia-connect-support-line

We hope this helps you, Carolyn.

We are a family at breaking point trying to care for our mum. My 80 year old dad is unable to cope with her challenging behaviour anymore, myself and my sister are there every day whilst trying to hold down full time jobs and children, in my sisters case young children to look after. We get no help or support from anyone no matter how much we ask , there just isn’t any. We now need to look at care homes but her behaviour is to challenging for the majority plus the waiting lists are years long. We can’t even get any respite care so my dad can recharge. They will eventually loose everything they worked and saved for due to having to pay if we can manage to get her in to a home, if they hadn’t bought their council house her care would be paid for , it’s all so unfair anyone in our area with dementia is just forgotten, she doesn’t even have a care plan in place.

Michelle, we're really sorry to hear this. It sounds like a very difficult situation for you and your family. Please know that we are here for you. 

We'd strongly recommend calling our support line on 0333 150 3456 to speak with one of our trained dementia advisers. They can find out more about your situation and provide specific information and advice to help. More details about the support line (including opening hours and other methods of contact) can be found here: https://www.alzheimers.org.uk/dementia-connect-support-line

Alzheimer's Society blog team

Thank you to all who have related their experiences. I am 90 and looking after my husband who is also 90. It’s a hard job and one does not know what will happen from one day to the next. My love to all those wonderful carers for their unselfish work.

Phyllis story is both heart-rending and inspiring, thanks for sharing. One thing I would like to comment on is that everyone's journey is unique - as is every patient suffering from dementia. Phyllis's 'conversion of the family home rather than placing Tom in a care facility' may not be an option available to everybody. I caution other readers of this article against benchmarking their efforts against anyone else. My mom almost died trying to keep dad at home. We do all that we can and we love with all our hearts. As Phyllis and others wrote, you need to be a bit of a detective to find what resources are available to you (varies city-by-city, state-by-state, province-by-province, and country-by-country). Be direct when you ask for help - local dementia/Alzheimer's support groups are a great resource. Last thing I'll say is that it is important to write down a few memories from the days before dementia every so often. It helps you celebrate the person they once were, and it inoculates against the replacement of memories of the 'good old days before dementia' with the less than wonderful experiences after it takes hold.

Reading all these desperate stories, makes me realise just how lucky we have been with my Mum (died 1996) and my sister in law now 80 and living alone in Newcastle. ln both cases we could afford to pay and the carers in Newcastle are absolutely brilliant. But that doesn't help all the above. It's only natural to get cross... I did...I remember swearing at my mum, something I'd never done before and haven't since. Don't feel guilty about it; you are only human and you must sometimes put yourself first.
It is nothing short of a national scandal how little support there is for sufferers and carers and how little understanding even after all this time. This government wants a bomb up its backside.

I agree with your comments .There is a lot of help for people who will not work but no help for people in this condition. I keep getting past from people to people, a lot of talk but nobody to actually do anything for me.

When I was caring for my 96 year old father , who had suspected Lewy Body dementia he was going through an episode of delirium type hallucinations (which we had experienced before and hoped would be short-lived , meaning days not weeks ). But he suddenly deteriorated into unrouseable rigidity with jerky arm movements.The ambulance staff asked if he had ever had "focal seizures", and one of the earlier responses to this article has also just mentioned seizures, but I have never seen that mentioned in connection with dementia before . Sadly he never recovered much mobility after this and was aware of his predicament . He then decided to stop eating and drinking . This is a hideously cruel disease hidden behind doors of care homes and family homes, with little interest for support from powers that be .It does indeed feel like living hell with dementia , not living well for much of later stages . My M.P thinks good palliative care is the answer to all life's problems -which planet are such people on?

I’m nearly 92yrs old caring for my partner who was diagnosed two and half years ago with Alzheimer’s +dementia with Lewy bodies severe it is awful seeing the man you knew descend to someone who on some days doesn’t recognise you it’s very hard work he also had prostrate cancer which he’s being treated for in my case his family have deserted him his daughter saying put him in a home and get on with your life . They don’t want responsibility and their lifestyle disrupting it’s very hard when days go by with just the two of you in the same house I have to treat him like a small. Child really heart breaking but `I will never desert him . Wren

My love to you on your tremendous strength, courage and love ❤️

My husband currently at 64 years of age & in his 9th year with Dementia is basically a prisoner of his mind & body…the only thing he can do for himself at this stage is masticate food fed to him and swallow small sips of liquid. I transfer him from bed to wheelchair with a lift to give him movement & relief. Definitely the hardest part of this condition is the mid stage, extremely difficult on patient & caregivers.

I agree with all the above comments , I have put up with my husband’s diagnosis for 4 1/2 years, but I am not too well myself, ailments too numerous to mention, or bore you with!
Need to get help, have cleaner from AGE U.K., but husband won’t have carers in, for him, says he is not ill, he doesn’t hurt!
Also doesn’t like going to gatherings, so as we have no family in any direction I cannot get out beyond medical appointments, like doctors or chemists. I am nearly 78, he is 80 on Sat. 25th.
Just wish there was some help out there, paid or unpaid. I feel empathy for all family carers in same position as myself.

My sister in law didn't want carers and was really rude on the first visit and stormed out of the room, when we thought she might accept. We left it a while then tried again and though still very resistant eventually she accepted them. You must think of yourself and your needs and stick it out. Eventually your husband will forget and they will become part of the scenery. With my mum I was devious. I told her it was a new regulation and that I'd be in trouble for breaking the law if she didn't accept....and I was only in my 40s then!! You have every justification at your age and with failing health. Say anything and just do it!!

Fenn so sorry to hear this, you sound absolutely wonderful so sorry you feel abandoned. My dad is 84 and mum 81 she is ding her best to look after him but it’s all becoming very difficult I try to support her as much as possible . Hope you get some help and support x

That’s so correct , everything you’ve stated is exactly my experience with my Husband, 5 weeks ago he had to be sectioned and I’d still in the hospital as they’ve stated ‘his behaviour is unacceptable’ he is at last getting the help only they can give him. It’s such a cruel condition it affects all family members, my heart goes out to all the wonderful caters especially when it’s a close family member, as we lose the person long before bereavement.

My husband was diagnosed with Alzheimer's & vascular dementia ,(68) 4 years ago, but think he had for 5 years before that. He was a quantity surveyor and was a very active man. And was attending day centre and walking at least 4 times a day. But deteriorated last year and after being in hospital in November, he has been bedridden ever since😢 I have been fighting to get him out of bed for 8 months. It's an on going struggle. Finally a chair and hoist arrived but told wrong chair!! Another wait. He waited 8 months for 1st and only phyio. He Can't move his arms now. I feed him. It's such a cruel disease. Breaks my heart. Many a tear is shed. Our sons live down south and with covid visiting Limited. I have poor health ckd4 and waiting a hip replacement. Carers and district nurse are lovely. But I am so tired and in the house 24/7. Thinking of you all going through the same thing. Stay strong.

My husband was diagnosed in 2018 with MCI/ Alzheimer’s, he is now nearly 80 and slowly getting worse. Luckily we have managed to go away on a holiday that was booked for 2020! Also he is still able to pick his 8 yr old Grandson from school one day a week which entails him staying at his daughters the night before. This gives me a break as I care for my 87year old Mother as she has limited mobility and needs shopping etc.
I also pick up my Grandaughter from school twice a week.
I do find I take my husband with me as I feel worried leaving alone for too many days.
I worked as a support worker with adults with learning disabilities and dementia patients but it is horrible when it is someone close and I do worry about the future.
The memory nurse has just discharged my husband now and apparently the GP will now do yearly medication reviews instead!
I have just received an appointment to chat to a support person after 2 years of waiting as it may help me deal with changes as they occur.

Barry my husband of 63years has had Dementia 7years.At first his decline was very slow and he was asked if he would join a 1 year research we would go to the hosiptal 1 day every month they would run test on him and he would do some memory tests at the start we had to go to a hosiptal in London for x-rays and such and again at the end we went up again.At first it progressed slow but then our daughter (we also have2 sons) was diagnosed with cancer and died within 6 months he was holding her hand when she passed away, the Dementia speeded up after we are now 3 years later he has had falls and mini strokes cant remember 5 minutes ago. I went into hosiptal which was supose to be for 1 night but something went wrong and i had a bad haemorrhage.,i have and the family were told it could go either way so i en
ded up in hosiptal 10days when i came home i could not believe how much Barry had deteriorated.Things with my heart did not settle down very quick and they wonted me to go back into hosiptal,when we tried to get Barry a emergency package or respite there was nothing around we had to rely on our grandaughter to say she would stay with him.Our own Doctor said there just is not enough carers around and hardy any that does nights.So at the moment i have no help and the worry is what happens if i got to return to hosiptal there dont seem to be any help around and no one has been in touch,

Helena, we're so sorry to hear about your situation. This must be such a worrying time for you and your family.

We'd strongly suggest calling our support line on 0333 150 3456 to speak with one of our Dementia Advisers. They can find out more about your situation and discuss support might be available for you and Barry.

You can find more details about the support line (including opening hours) here: https://www.alzheimers.org.uk/dementia-connect-support-line

We hope this helps for now, Helena. Please do call the support line on 0333 150 3456 if you need dementia information or advice.

Alzheimer's Society website team

Thank you Phyliss. We are going through the same thing with my Mum who is 12 years into Dementia diagnosis. We pay for all her care and have had very little support.
The best support has come from the OT - getting grab handles, a Sara Steady to help transfer her from bed to wheelchair and a hoist.
A dietitian was also useful to tell us about mashing all her food, giving home made smoothies to ensure fruit and vegetables are eaten and buying Ensure protein shakes.
I would love more information about end of life care as this is a scary next step but we don’t know how we will cope.

Hi there,

We have lots of information about end of life care on our website, if you wanted to browse our webpages: https://www.alzheimers.org.uk/get-support/help-dementia-care/end-life-c… (This is also available to download as a PDF: https://www.alzheimers.org.uk/sites/default/files/2018-10/531LP%20End%2…)

We recommend chatting with a Dementia Adviser through our support line on 0333 150 3456. You can ask them questions about the next steps in providing care, and what support might be out there given your situation. You can find more details about the support line (including opening hours) here: https://www.alzheimers.org.uk/dementia-connect-support-line

We hope this helps for now,. Please do call the support line on 0333 150 3456 if you need to.

Alzheimer's Society blog team