Eight phases of FTD
The first question I was asked when people found out about Pat’s dementia is ‘How long has she had it?’. I know she was diagnosed in July 2012 but it is impossible to pinpoint when it began.
The second question is ‘Does she still know you?’. In Pat’s case she knew all her visitors until medication dulled her senses as well as her pain in the last two days of her life. Here I will attempt to give a personal view on how her illness progressed, charting eight phases of her frontotemporal dementia (FTD). Everyone with dementia is different and has their own experiences, this is how it was in our case.
1. Unexplained small things
Hindsight gives you 20/20 vision which now suggests that the first signs of FTD were showing as far back as 2005 when Pat would have been just 54 years old. At the time some things seemed strange, such as arriving at our destination after a car journey and Pat not attempting to get out of the car.
In 2006 we went for a bike ride, going up a hill our speed slowed down and instead of putting her foot on the ground and dismounting, Pat simply fell over and hit the road.
2. Driving and work problems
In 2009 Pat began having problems with her driving. In September she hit a car pulling out from a driveway and worryingly didn’t stop. In December she drove through a roundabout and somehow rolled her new car over.
In 2010 problems increased at work. On July 27 she noted in her diary: “J told me that my colleagues didn’t have confidence in my abilities. Definitely going to resign in Dec.” Sadly even working as a nurse in the NHS her employer didn’t think that a rapid decline in her abilities after 35 years nursing might be due to illness.
Through 2010/11 Pat seemed to lose interest in most things that she had enjoyed doing for many years. She stopped knitting, couldn’t get motivated to do her embroidery and didn’t appear to be able to concentrate on what she was doing. She was happy to sit in front of the TV for long periods, often not even switching channels. Many a time I had to suggest to her that it was getting late and it was time for bed, she may have stayed in the chair all night if not encouraged to move.
4. Trouble with swallowing
In February 2012 she was having so much trouble with swallowing that she took herself off to see our GP. He was sufficiently worried to ask her to come back with me and so began a three-pronged investigation – neurological, depression and physical swallow obstructions.
For six months she had numerous scans and tests before we were given the devastating news that Pat had FTD.
Although Pat’s condition had worsened through 2013/14, things came to a head in March 2015 as she was finding it increasingly difficult to eat and drink. I became so concerned that I had to call in help. We got her a place at Kirkdale Nursing Home, initially for respite care. Leaving her that first time was the most difficult thing I’ve ever had to do. Thankfully they managed to get her eating and drinking again and she regained some weight.
Her general behaviour now became a problem. For example, on many occasions she would go into a room, plug the basin, turn the taps on and walk away causing a flood.
6. Trouble with balance and mobility
By the start of 2016 Pat’s balance was failing and at the end of January she had a fall and broke her wrist which needed a plate inserted in it. She never fully recovered from the general anaesthetic and despite efforts with a walking frame she was to be confined to a wheelchair for the last 18 months of her life.
At Easter 2016 we reached another crisis when her weight dropped drastically and a PEG tube was considered, but it was decided that she would be at great risk if she underwent the operation. However, once she came off her medication for osteoporosis she began to take food again and regained weight.
7. More physical symptoms
Despite her obvious frailty we were still able to get her out for ‘walks’ beside the River Tees and car rides out to the coast, parks etc.
Moving into 2017 other physical symptoms became more obvious. The fingers on her left hand began to contract, a general stiffness spread throughout her whole body and she began to have greater difficulty coping with syringe feeding, the only way she had left to take both food and drink. Throughout her ordeal with FTD her eyes remained bright and communicative, she retained some awareness of her surroundings often perking up considerably from external stimulation.
8. The final days
By July 17 Pat could no longer sit upright in a normal wheelchair and she was moved to a special chair. I often worried that she seemed to have some form of locked-in syndrome.
On July 18 her swallowing just about failed completely and by the following day she was confined to bed and her end of life care was initiated. Drugs to control her pain were introduced and the light went out of her eyes. Her breathing became more and more laboured. With her family at her bedside she slowly slipped away and at 3.30am on July 22 she took her last breath and was at peace.
Since my wife died, I have taken on several running challenges to raise money for dementia research in her memory. My first challenge was running eight 5km parkruns in locations of importance to Pat’s life, such as where she was born, where she trained as a nurse and where we went on honeymoon. I then completed an ‘A66 parkrun marathon’, running eight parkrun routes and one junior parkrun route located along the road over 24 hours. In 2020 I ran the equivalent distance from my house in Stockton-on-Tees to Land’s End in Cornwall. I ran 474 miles over five months – the equivalent of 18 marathons.
My latest challenge was running the equivalent distance from my house to John O’Groats in Scotland during the summer, a total of 428miles.
About the author
John Hirst is a retired industrial chemist living in Stockton-on-Tees. His wife Pat was diagnosed with frontotemporal dementia in 2012 and died in 2017 aged 66. John has raised thousands of pounds for Alzheimer’s Research UK in Pat’s memory by completing running challenges.
Such a sad story, a wonderful woman and John was the best husband.
My husband is 69 and has frontal lobe dementia and I now look after him full time. I am 63 and
give up work in May to look after him. He has had 4 seizures. I get lonely sometimes even though
I have a wonderful family.
Good luck John and my very best wishes
Dear John Thank you for sharing your experiences. I relate the latter stages of decline as they appear to be similar to that of my father. Good luck with the park runs.
Well done for bringing this terrible disease to the fore. My husband has fronto-temporal dementia and he first showed signs of it at 32 and he is now 71. He has gradually deteriorated over the years and now lives in a care home. He can only move his head and his legs are pulled up and rigid which must make him uncomfortable. The more publicity we can give this dreadful disease the better! I wrote a book: ‘John, Dementia and Me’ to do this. Good luck on your enterprise.
Rosemary, your note here is the first that made sense to me because my husband has shown signs since his mid 40’s and is now 76 and in a facility. I also believe that both his mother and his sister had it. His sister choked to death at age 77. He has choked many times during our marriage. He shows no emotion, is very apathetic, has no hobbies, and sleeps most of the day. He is nearly mute. But everything I’ve read gives a much shorter time of living with the disease. He is now in a facility.
John – This is very similar to our family’s story – my mum started showing vague signs in her mid-fifties and we struggled to get a diagnosis – ten years later my dad is still just about managing to care for her at home but I think we all know we are on borrowed time. It’s so terribly hard – thankfully we all live close by and can help out with practical and emotional support but we know that dad carries the full burden. Good luck with what you are doing.
Dear John, this all sounds so familiar. I lost my husband in June. Diagnosis was very difficult –
FTD was explored but in 2008 at the age of 63, we were told it was a very rare type of Alzheimers . My husband was intelligent & enjoyed nothing better than a good debate – his speech was one of the first things to go, it was so hard to see him deterioate – for the last three years of his life he was confined to bed/special chair and could only communicate with his eyes . His smile could light a room and gave me hope that he still knew me. My family and I continue to support Alzheimers Research and wish you all the very best – your wife would be so proud of you. Carol
Thank your for sharing your very sad story. It has helped me to come to terms with my husbands FTD knowing that I am not alone. We are in the midst of this with him deteriorating daily. He has behavioural variant FTD, and seeing him robbed of his personality was so shocking. He was a gentle, kind, loving man who would help anyone.He is now someone else, and I have to give myself time to remember who he was. Now his language and communication has been hit, and he finds it harder to make himself understood. Luckily we have a very supportive family who are helping us through this. It was only diagnosed in December last year, but is progressing at a rapid rate. I know that there is little that can be done, and he is under an excellent FTD unit, so I have made it my mission to let people know about this awful disease. He has also taken part in two clinical trials, hoping that a breakthrough will come through for perhaps the next generation. It is time for people to know about this condition, so well done for bringing this into the public eye. It also tells me that there is life beyond FTD too.
my wife 71 was diagnosed with ftd because she had a few old aneurisms in her head and she was constantly touching her lip and darting her toungue around her mouth,also has aggressive voices in her head….I think they are wrong in their guess,
My husband just got diagnosed with FTD and his is behavioral variant. In the last few years i noticed that he was excessively eating and losing his manners. The activities that he so use to love are not important to him. He was diagnosed as mild form but I know it will progress. So far his language and balance are in tact and we I have a great family support system but am still worried of what is to come.
My husband has been diagnosed recently at 50 , he is passive and caring and though he finds it harder than others to verbalise and organise he is doing great and i see some real improvements .
Thanks for your story. My husband was diagnosed 3 years ago at 56 years old. Like you, in hindsight I see symptom for a couple of years earlier. I’m now looking at what to expect next as he seems to be on a fast decline. Most places for information simply specify that it’s different for everyone, but I needed a heads-up on possibilities. I’ve only just found out that mobility can be a problem, and only because I’ve been looking due to some worrying balance issues I’ve started to notice. Thanks for sharing your story.
Have been diagnosed with FTD 2 years ago and was only 55 at time so such a shock. Symptoms are slow moving but my mobility is worsening but I can still read and follow shows and dress etc ok and make a cup of tea
But can’t cook as might forget about it but am healthy at moment thank goodness.
I have just received this diagnosis. I don’t know what if law to say. The neurologist said I have 10 to 15 years. What I read is more like 3 to 5. Will I know before I get too bad. Not sure why I would even want to live now knowing what’s coming
My mom was diagnosed with this horrific disease in 2014 at the age of 49. My family and I dated the onset of her behavioral changes back at least 3-4yrs prior to finally receiving the official diagnosis. We had no idea what was going on! We thought everything from severe depression, to a brain tumor, etc. Never in a million years could I imagine a diagnosis of bvFTD or that it would take so long to finally understand what was happening to her. I had never even heard of FTD! It has been quite the journey to say the least. She has now been completely bed ridden for the last 3yrs, has complete incontinence, can’t really talk, and basically completely dependent on the family to administer every aspect of her care. I am trying to find info on what to expect now that she’s been in this stage for quite some time. Seems all the videos and reading I’ve found mainly focused on early detection, causes, treatments, but I do not see any information on what to expect and how to further prepare for her last days. I can’t imagine her remaining in this final stage for too much longer and I want to prepare as best as I can.
We appreciate this is a difficult time for you and your family and hope the following information is useful.
Frontotemporal dementia is a rare form of dementia, and therefore it is not often something family members would consider their loved one having. There is a service called Rare Dementia Support that have a specialist group for people with FTD, and they can give you some specific advice and support for your mother’s condition. They can be contacted on 07341 776 317.
Preparation for someone’s final days is a very personal process, and unfortunately no one can say how long this final stage may last. There is a service called Admiral Nursing Direct that has specialist dementia nurses who can give you details about what medical support and care is required at this time for your mother. They can be contacted by phone on 0800 888 6678, or by email at email@example.com
To help support you and your family at this time you could contact Alzheimer’s Society who are able to offer practical advice and emotional support. They can be contacted by phone on 0300 222 11 22, or by email at firstname.lastname@example.org
We wish your family all the best.