Dementia Support Line
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 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.
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.
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.
‘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.
ROSE MARIE COOIL
saysI lost my husband to Alzheimers in January after caring for him on my own for 7 years. He also had COPD and prostrate cancer as well as being deaf and going blind with cataracts that couldn't be treated because of restrictions after operation which he couldn't understand or follow. The worse thing for me was he kept asking did I know Rose(me) and when was she coming home.He used to get up 5or6 times every night so I also had to get up. This disease is soul destroying. I feel for anyone and the family's who are going through this.Totally agree there is very little support for government eg financially. I hope Sheila gets the support we all needed.
Victoria
saysThank you for your story and insight Phyllis. Here in Canada (specifically Ontario) we have very little in the way of support since our healthcare system is so badly broken. I work full time & can't afford homecare for my 58 year old partner who was diagnosed with PCA ( POSTERIOR CORTICAL ATROPHY...A rare & aggressive form of early onset dementia) back in 2018. And although we know he's had it for several years. It took about 6 years of testing and a visit to Canada's top nuerologist to finally diagnose it. He's going into the late stages of it now and quite honestly its like going through hell. He has no balance and falls at least once a day. It would be 30 falls a day without his cane, he's learned how to counter balance using it when he gets dizzy. But he has far more frequent falls now. His vision goes in & out several times a day. We had his eyes tested and they are fine. 20/20. His brain can't process what he sees and so he has no idea what he's looking at most of the time. He describes it as like a picasso painting in that the images are broken and distorted. It makes simple tasks like reading or watching TV near impossible. And forget travelling. He can't deal with movement in the car either. So he's a shut in, only able to sit in his chair during the day. He sleeps about 18 hrs a day now, as he is always tired and doesn't function at all without his naps. Oh and lets not forget the awful seizures. Those are new withing the past year. If he laughs too hard then it will usually trigger a nasty seizure. He has those frequently at night now in bed. Some are so severe I think it may kill him. He's on seizure meds to manage it,(add to the long list of other dementia meds he's taking) I can only imagine the frequency and severity of them if he wasn't taking the meds. I don't know whats next. I have no resources available to me, other than our family Doctor. I do believe one of these seizures will eventually put him into the hospital (if it doesn't kill him) and then from there, likely a long term care home. We've managed it so far as a family, just our daughter and I. But I don't know what's next and I can't dwell on it or it will drive me crazy. We manage day to day and that's all we can really do.
Sharon
saysPhyllis. Thank you for your honesty! I deal with my husbands darkness every day and feel so guilty for my impatience. It is like you do not know who you are living with.
You are the first caregiver I can relate to .
Christine Godfrey
saysI'm so relieved to read your realistic account.
I'm sharing the same journey with my mum.
Often I feel guilty, but mostly I feel sadness.
It's like looking after a stranger.
Les Eve
saysKnow exactly where Phyllis is coming from, my first wife and I grew up as youngsters from when we were eleven, married for fifty eight years but when my wife was forty eight she was diagnosed with Parkinson. Over the years this was complicated with Lewy bodies but finally at sevevty seven it was Cancer that dealt the final blow. After four years I married someone I had known for very many years who had looked after her husband who had Alzheimers, we hoped to be able to enjoy our twilight years together to enjoy the things we previously were unable enjoy but no this was not meant to be as she was diagnosed with Alzheimers, I have now Cared for her for three years meaning that appx. thirty five years of my life I have been a Carer! I feel as though I could write a book of my journey.
MagiC
saysWrite it, blessings.
Glenise Ensor
saysThank you Phyllis for your honest account. Like you, I do wish that the portrayal of Alzheimer’s/ dementia is more representative of all possible stages of the disease and not just the memory loss. Similarly, most film and TV representations of the disease tend to be set in affluent environments and therefore don’t portray the added anxiety of dealing with dementia if money is tight.
Debbie
saysI agree with all the above comments, I lost my mum but know what it's like to try and juggle working, looking after family and looking after mum. I was lucky and although not free was able to access carers who were my life savers. I could not have kept mum at home without their help. I agree there should definitely be more help for carers/family as previously stated they have paid into the system for years but when in need there seems to be no help forthcoming, I had to fight for everything and pay for the extras. One thing a carer must do is find time for themselves, this does give a break and helps.
Jean Brown
saysMy husband Ernie has had Alzheimer’s for 15 years the last 5 in a dementia care home ,we are both 85 ,I did the best I could for many years but family lived to far away to help ,we actually retired to Spain in 2003 but had to return in 2014 when I found things getting to difficult ,,but still the family weren’t on hand ,I sometimes have great regrets having to go down this road ,but have come to terms with it and visit him as often as I’m allowed ,although I will say he is still the focus of my life and will be until the very end .
Sheila Sears
saysWell said Phyllis for your honest account. My husband has been suffering for two years so we are just starting our journey. Our problem is their is only the two of us no children and no family to call on. I worry myself silly about the future. The doctor has said he will get the memory nurse for our health clinic to contact me, but nothing yet. Hubby gets so frustrated and now cannot remember what has gone on for one day to another. Life is so cruel at times and I cannot appear happy and contented to live with Alzheimer's, I am screaming inside and shed a lot of tears in private and so frightened for our future. I have never written so honestly before so sorry to go on.
Alzheimer's Society
saysHi Sheila,
Thanks for your comment. We're very sorry to hear about your husband, and want you to know that we are here for you.
You can call our 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 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
You might also benefit from joining our online community, Talking Point. Here, carers and other people affected by dementia share their experiences, and offer advice and support to others going through similar situations. You can browse the conversations within the community or sign up for free: https://forum.alzheimers.org.uk
We hope this helps for now, Sheila. Please do call the support line on 0333 150 3456 if you need someone to talk to.
Alzheimer's Society blog team
Shirley Hampton-Armour
saysHi Sheila and phylis my husband has alztheimers diagnosed in 2019 but I noticed the changes 3 years previous, 2017. I Can relate to everything you are saying and feel the same. About 2 months ago he reverted back to the man I married but it only lasted an hour or so. It is so sad and I hate all of it, I myself am 71 and have a lung condition and am really struggling with it all but it's so sad for husband and we are alone too in a way as my adult children are not my husbands.
Sheila Sears
saysHi Shirley, I am sorry to hear about your husband and yes it is a struggle. I seem to be learning day today what the differences are. I find my hubby better first thing in the morning , as by night time he sees worn out with worry about things that do not matter. One thing I do admit to getting so frustrated when he loses things, which seems to be all the time, particularly mobile phone, house keys and car keys. Good luck my dear and take care. xxx
Fiona Hensley
saysHi Sheila. I can appreciate your fears and anger having helped care for my mum for over ten years. It isn’t easy but there is help around. The Alzheimer’s society has lots of advice such as about local dementia friendly events where you can meet up with people in similar situations. Also their publications were invaluable to help me understand what was happening and suggestions to help deal with many of the day to day and other issues you will face. Keep strong and remember you are not alone. Claim the benefits you are entitled to ( eg attendance allowance) as it helps to get you into ‘the system’. Get a blue badge when you need it and -very important- lasting power of attorney for both health and finance while your husband is able to consent. Most important - look after yourself and allow yourself time to follow your interests and keep in touch with friends and neighbours who may be able to lend a hand in future.
Sheila Sears
saysHi Fiona, thank you for the pointers. I have recently acquired a blue badge for myself, and I am finding it very helpful. As for the attendance allowance, I have not looked into that yet, as we are in the early stages I feel he can do a lot for himself still. We have recently seen our solicitor and had out Power of Attorneys sorted out. I try not to think about the future too much as I worry myself silly. Thank for your reply and it has been so useful to me.
Joan
saysHi, I am in exactly the same place. Two years after diagnosis. We are both in our 80’s and slowing down considerably. I did get attendance allowance and blue badge, LPA all done too. Things like something comes up I ,m not sure about, hub says, Joan will know…
Lots of sleeping which is isolating too. Cheer up.
Sharon
saysSheila… yes screaming on the in side I know the feeling . Praying for you and your husband . What puzzles me after reading all comments from loved ones no body mentions the terrible mood swings dementia patients have . Can anyone out there relate ? He goes from child like to demanding to not very good behavior . very self centered. I love him but it is so challenging to care for him .
Hi Sharon, it sounds like you might benefit from joining our online community, Talking Point.
Talking Point is the ideal place for carers and other people affected by dementia to share their personal experiences, and offer advice and support to others going through similar situations. You can browse the conversations within the community or sign up for free: https://forum.alzheimers.org.uk
In the meantime, we have some information about how dementia may change a person's behaviour: https://www.alzheimers.org.uk/about-dementia/symptoms-and-diagnosis/sym…
We hope this helps for now, Sharon.
Alzheimer's Society website team
Louise
saysSheila Hopkins
saysThere is, rightly so, a great deal of support for cancer sufferers, particularly end of life care (Macmillan nurses etc.) but nothing similar I can find for people with Alzheimer's and their carers.
Rose
saysYou could ask the charity Dementia UK if their Admiral nurse service could help.
Sheila Hopkins
saysThank you. No one has ever mentioned Admiral Nurses to me and it is such a comfort to know I can contact them when life gets particularly difficult.
Jayne Clist
saysI have to look after my 90 yr old mum in law and been doing that for 12 years with my dad in law who passed 3 years ago . She used to be a teacher and now she is like a child. Incontinent can’t have a conversation at all . We are lucky we do have carers but at the moment I could do with support psychologically
Christine Quinn
saysMy husbands has dementia we are careers for two grandchildren age 14 and 9 I’m finding so hard dealing with everything going on around I’m 68 trying my hardest keep it together for us all but don’t know what will happen phillis story is wonderful to read gives me some comfort
Hi Christine,
We're sorry to hear you're finding it hard at the moment.
Please call our Dementia Connect support line on 0333 150 3456 if you would like support with your husband's dementia. One of our dementia advisers can listen to you and give tailored information, advice and support. You can read more about the support line (including opening hours) here: https://www.alzheimers.org.uk/dementia-connect-support-line
Hope this helps,
Alzheimer's Society web team
Helen
saysWell done Phyllis to you and your family.Your story is a very real one . Sadly we are all not all in a position to give up our lives too.. that’s not to say we don’t feel the guilt we most certainly do. Our mum fought long and hard to defeat the illness but now sadly she has given in or the disease has finally defeated her. I totally agree there is some support out there but it’s a struggle to find and it’s never for free. And sometimes a little too late. The system really needs to change it’s broken in a big way . And almost breaks you with frustration annoyance and what feels like lack of help care or empathy. Not to mention the fight for every single piece of help and adviceThese people have paid into a system that badly let’s them and their families down. There is no happy ending it’s all very cruel for the patient and the families
Janet Pattinson
saysI agree with Helen there is little practical help advice is all very well but when you husband’s loses his temper and doesn’t try to help when you are trying to get him dressed etc and he can get aggressive you are on your own. I am getting to the stage when I may have to think about residential care which will cost in the region of £1000.00 plus per week where do this government think ordinary people who have worked hard all their lives can find this kind of money. Most of our money is in our home.
Nikki
saysWith my husband, I too, look after my 97 year old mother-in-law, who has dementia and I sympathise with anyone who is caring for a loved one like this. Until I had direct contact with a dementia sufferer, I had no idea how damaging this disease is. People think it is just memory loss but it is far worse. I have to say though, I don't agree with you about 'the system' being broken. Communication is a two way street. The people in the system don't know if you don't tell them. In my experience the help received has been outstanding, once the authorities know your situation they are extremely supportive. Everybody's situation is different, there is no standard response, which makes things difficult. My advice is, never be afraid to ask for help.
Jilly Chittenden
saysPhyllis and Tom’s story is the bravest and most honest I’ve heard in the 4 years I’ve lived with my partner’s diagnosis of Alzheimer’s. I totally agree with her plea for a more realistic approach to this dreadful illness in the media and publications because I know that I would have made more informed decisions about my partner’s care instead of running myself into the ground with guilt, feeling I’m letting him down because I can’t make him into that smiley faced nice old gentleman in all the booklets etc. I want to do my best but I am worn out, even with some paid support. Well done to Phyllis!