Dementia Support Line
Real stories
‘Early diagnosis is part of the reason why I am able to have such a rich and full life’- Sylvia's story
Sylvia cared for her husband, Doug, who had dementia, for 13 years. She was with him at every stage including the moment he passed away. Now, she has been living with dementia for 10 years. She contrasts those experiences, and explains why she is such a passionate advocate for early diagnosis.
Doug and I met at a Christian festival. We were slightly later in life compared to most couples. Maybe that was why our relationship was so special for me. We loved each other so much.
In 1991, just six years after we married, Doug started having vacant episodes and hallucinating. He found it increasingly difficult to communicate and was no longer able to even shave. It was frightening.
Seeking a diagnosis for Doug
The doctor referred Doug to a gerontologist who thought it might be CJD, or mad cow disease, as it was known then. We hadn’t heard of dementia and we had no idea what was wrong.
There was no help. There was no diagnosis.
Five or six years later, Doug had epilepsy and Parkinson’s. He could no longer walk or talk. He was doubly incontinent. He had difficulty swallowing.
A specialist in London diagnosed cortico-basal degeneration of the brain and Lewy body dementia.
I asked if there was medication, but I was told that the medication, Aricept, had already been allocated and that there was none available for Doug. I paid for a private prescription.
It was too late. The drugs weren’t effective for someone with a condition as advanced as Doug’s.
Caring for Doug at home then moving to a care home
I was still caring for him at home. It was physically difficult caring for Doug – he sometimes fell out of bed, and I had to call an ambulance, because I couldn’t lift him myself. So I got a single bed downstairs in the lounge with safety bars along the side, and a baby monitor to wake me upstairs if I heard him.
A year later, I needed a hoist to lift him. But because it needs two people and I was on my own, I was told he now needed to be in a care home. I am so glad I didn’t need to make that decision.
The home was amazing. I was able to help with Doug’s care 11 hours a day. And I gave him that care every day – except one – for six years.
Then, Doug could no longer swallow, so I knew the end was near. I made every day very special for him and as the time drew near, I stayed with him for four nights sleeping on a duvet on the floor. And I was with him as he gave his last breath.
Sylvia and Doug
Experiencing my own memory problems
Just over four years later, I was having problems with my memory and was so shocked when I started hallucinating, losing my balance and sometimes falling.
I didn’t know my home. I used to get lost or forget words. Friends in the church would say 'Hi, Sylvia' and I would say 'Hi, sorry I don’t know your name', although I had been going there for over 25 years.
It was December 2009, and after tests, I was diagnosed with Lewy body dementia about four months later.
I am passionate about breaking the stigma associated with dementia. So, the Sunday after I was diagnosed, I went forward in Church, and told everyone. The contrast with Doug’s experience is sharp.
Through Alzheimer’s Society, I was put in touch with people who, like me, had dementia. Those friendships mean so much to me.
The professionals at Alzheimer’s Society arranged meetings and care cafes where we encourage and support each other.
I am grateful I have a form of dementia which can be helped by medication. Initially, I was on Aricept for the first three months, and since then on Rivastigmine patches and Memantine tablets.
My dementia has progressed. For instance, ten years ago, I could drive. I could ride a bicycle. I cannot do either of those things now. I dare not use the oven any more. I need to put notes up on everything.
The importance of an early diagnosis
Although life with dementia is more of a struggle now, I still live on my own and care for myself. I keep as well as possible. I eat healthily and do exercises, cycle everywhere on my tricycle, swim, do brain games, like sudoku and children’s crosswords. I see friends and neighbours almost every day and I have a small allotment.
I truly believe that early diagnosis is part of the reason why I am able to have such a rich and full life as I do now.
I am passionate about encouraging elderly folk who say they’re getting memory problems, to go to their doctor. There, they will do a mini memory test which will show whether it is part of the ageing process or whether further tests are needed.
If it is one of the dementias that can be treated by medication, it will make a big difference to the qualities of one’s life.
Talking to your GP
If you (or someone close to you) are worried that your symptoms may be dementia, the first thing to do is to contact your GP.
Terry Mullard
saysMy wife, Pat, was diagnosed with Alzheimer's in Nov 2017 although she had a number of memory tests going back to 2012. She can do nothing at all now and asks what is happening. She gets frightened and now I have difficulty understanding what she is saying. She has difficulty walking and going up even the slightest step. I do absolutely everything at home, cooking, cleaning, washing, changing sheets, pants and pads and everything else. Pat is 78 and I am 81. I am now looking into care homes. Why is the system so unfair regarding costs. If you have scrimped to buy a house, saved a bit of money to leave to your kids, not gone on exotic holidays, not gone to posh restaurants and shows, not worn designer clothing, etc, then you have to pay for care. Those who have spent their money enjoying life and probably not bought a house get care free even if they are high earners. Why???
Sandra Heard
saysMy father was diagnosed (eventually) as probably affected by Lewy Body disease.The diagnosis happened after he was admitted twice to hospital in the space of a few months with delirium, the delirium seemed to be provoked by bouts of constipation, and was frightening in its intensity for several days , then it gradually diminished to the point where he was able to be back at home . He was prescribed Rivastigmine skin patches which were carefully positioned at a different point on his torso each day. The downside was dreadful red circles , weals , on his skin so you could clearly see where the patches had been for the last 10 days . This also caused itching and scratching, especially at night when warm in bed. I did wonder whether poorer quality of sleep was detrimental and he unsurprisingly became more sleepy through the day too. I think the Rivastigmine may have helped calm down the hallucinations that came with the delirium and perhaps prevented their return for many months , but the main thing was to keep constipation at bay . That is not easy when a person is living independently and cannot always tell one day from another or recall whether they "have been".We did try a sytem for him to move one button into a cup in the bathroom to mark each time he had a bowel movement.That helped for some months .
Suzanne Malone
saysMy husband point blank refuses to seek help
can i get his GP to recommend test
Anonymous
saysHello Suzanne,
We'd recommend speaking with one of our Dementia Advisers by calling the Dementia Connect support line on 0333 150 3456. They will be able to listen to your situation and provide advice. (More information about the support line, including opening times, here: https://www.alzheimers.org.uk/dementia-connect-support-line)
In the meantime, if you are concerned about your husband's memory problems, we have some information (including a free, downloadable booklet) that may be helpful: https://www.alzheimers.org.uk/about-dementia/symptoms-and-diagnosis/sym…
We have information and advice on dementia assessment and diagnosis here, which tells you what happens when someone has an assessment to find out if they have dementia. It explains the different steps involved, including what happens if a diagnosis is made: https://www.alzheimers.org.uk/about-dementia/symptoms-and-diagnosis/dia…
We also wrote an article titled 'How to offer help to someone with dementia who doesn’t want it', which may be of interest: https://www.alzheimers.org.uk/blog/how-offer-help-someone-dementia-who-… This links to a resource we have on denial and lack of insight.
Lastly, you might like to talk with other people affected by dementia within our online community, Talking Point. Feel free to browse and read others' experiences, or you can create an account to reply and connect with others who may be going through a similar situation: https://forum.alzheimers.org.uk/
We hope this is helpful.
Alzheimer's Society blog team
susan jones
saysIt is so extremely critical when you notice a change in your family's behavior to get help right away. They can receive medicine to help the brain from dying and pretty much live a comfortable life. If not, this disease is so deadly, if you wait too long, the brain dies. It is like cancer, if not treated, you will live a shorter, much shorter life. Please get diagnosed.
deb baker
saysThank-you for sharing a beautiful love story. God bless you.
I am sorry you and Doug's life had it's difficulties and so early but God has his reasons and ways. All of your advice and suggestions I hope to heed. I want to live alone. NEVER have, but need to for my sanity's sake, your story is so very helpful.
Take care dear one.
Irene Boyd
saysVery helpful post. My husband was diagnosed with dementia last year - the unknown is scary but I’m just finding out what help is available. My son, aged 41 died from a cardiac arrest last year - this is like another bereavement but feel blessed to have good church support. Irene
Vicky
saysMy mums just been diagnosed with early dementia she’s only 62. I’m so scared for what’s going to happen, I need to understand more to be able to help her, but at the moment all I keep thinking is the worst and she is my world xx
deb baker
saysI'm 62! And feel I need diagnosed....getting late in USA! I only wish I could count on my children! Your Mum is very blessed to have such a wonderful daughter. You and she will get through together and my prayers are with you both. debbie
Stephen Goodway
saysI was diagnosed with early onset dementia at the age of 60 and took early retirement
I am now 63 and with the help of medication enjoying life with my wife and grandchildren
inger raymond
saysThanks so much for sharing your moving story. So thankful your information about medications and early detection. My husband is having problems, and hopefully it is early stages of DLB.
God bless you! What a difference you are making.
Pamela Soane
saysPlease l need the support at the court of protection to get my husband back home for his care he is in late dementia and l know he would not choose to be in this loud busy home he needs a calm, safe place the home he loves the family and love of his wife with the right care package . The home is now the wrong place to end his time and we are a very close couple he needs me by his side l have tried to be his voice but the authorities are stopping this .the court has to decide .he is settled and l can't understand why they do not welcome this .I am having to fight them all the way
Sur Wenger
saysWhat a brave lady you are. I am so pleased your church network is supporting you as well as Alzheimer's UK. I have experienced lewy body and Parkinson's dementia with friends and family and totally agree that an early diagnosis is vital. I will pray that you continue to stay as strong as you can. May God bless you.
Emily Ong
saysThanks Sylvia for your sharing especially your powerful message of getting early diagnosis in order to continue living well. I would love to get connected with you. I am working with Alzheimer's association of Singapore and hospitals on this issue. I would love to hear from you, Slyvia
Jack Enright
saysHi Emily, my name is Jack Enright, and I am Stories Manager for Alzheimer's Society. I have spoken to Sylvia about your message. She first of all wants to thank you and everyone else for leaving messages. Secondly, unfortunately Sylvia does not use the internet or email I am afraid, and therefore, regretfully, she cannot get in touch with you. Yours sincerely, Jack
Jacqueline Skeldon
saysReading your Post was almost like reading about my life over the last seven years. My husband , like yours was diagnosed too late for any medication to help. He is now in the very final stages, looked after in a care home with me here with him every day. Couldn’t agree more that early diagnosis is vital so that anything that can help people enjoy some extra time is beneficial to them. I wish you the very best. Jackie