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I WAS DIAGNOSED with younger-onset Alzheimer’s at the age of 53.
My dad had vascular dementia and I was doing a course run by the Alzheimer Society of Ireland, to help me understand some of his behaviours, when I realised that not only was I experiencing some of the symptoms being discussed, I was already employing some of the coping strategies including keeping a diary and using a whiteboard.
I had a very negative view of Alzheimer’s and for some months I tried to bury my head in the sand. But as time went on I couldn’t ignore the fact that I was finding ordinary, everyday things a challenge and so my journey to diagnosis began.
Following my diagnosis in January 2014, some of my feelings were grief, anger, sadness, fear, devastation and hopelessness. I felt a sense of walking in fog but also in among those feelings was a sense of relief that there was a reason why I did some of the things I did.
My two sons were still in school at the time. Andrew was doing his Leaving Cert and Matt was in fifth year and I chose not to tell them until after Andrew’s Leaving Cert exams. Those were six months of broken conversations, sleepless nights and wet pillows, feeling sorry for myself and very afraid of the future.
Gradually the old Kathy kicked in. I started to ask myself what I could I do and what attitudes or behaviours did I need to change.
I wondered whether my faith was strong enough to sustain me and I had to consider what example I wanted to set for my sons too.
I made a vow that instead of counting each day I would make each day count.
But one of the hardest things I have ever done was telling my boys that I had dementia. To know that I was going to bring such hardship and sadness into their lives was, and is, difficult.
The guys are now 22 and 24 – they are living their lives to the full and I am so proud of them. They know that they honour me in being the very best version of themselves.
I was encouraged to give up work (which I now think was a mistake) and I found myself with empty days to fill. So I was blessed to find the Irish Dementia Working Group which is supported by the Alzheimer Society of Ireland.
This group has given me back a sense of purpose, a reason to get out of bed on my not-so-good days. I have met the most incredible, inspirational people who are working hard to change the face and journey of dementia not only for those of us living with dementia but also for those who care for us.
In terms of care for people with dementia, I have witnessed pockets of excellence in this country but also, sadly, black holes of nothingness after diagnosis.
I believe a person living with dementia and their family are best cared for when the local community is involved through awareness, staying connected, support groups, a helping hand and in short, basic kindness.
With 11 people a day being diagnosed with some form of dementia in this country, we need to break the stigma and get real about this disease; it’s rare to find a family who hasn’t some connection to someone living with dementia.
Our government should be doing more to recognise the need for funding for timely diagnosis, post-diagnostic supports and services for everyone with dementia.
There should be support as well for those carers who are often working 24 hours day, seven days a week, sometimes getting little or no sleep at night.
I know that my dementia is progressing. I am having issues with swallowing, stairs can frighten me and dark flooring makes me feel like I’m going to fall into a pit.
I need to constantly concentrate or mistakes happen and this is exhausting. Each day now feels like walking in a minefield but I still choose to focus on what I can do rather than what I can’t.
I like to get out and about – that’s why I walked the Camino last year in a fundraiser organised by the Alzheimer Society of Ireland and I am hoping to do it again later this year.
Taking part in the Camino was a dream come true. I thought my chance of doing something like that was over. It is amazing that I had the opportunity to take on that challenge and carry a banner for all people with dementia on that epic walk.
I was eager to show that my condition was not a barrier to doing the things that others can do.
My experience is that the vast majority of people diagnosed with dementia want to live in their own home and stay active in their own community. In order for this to happen, we need our communities to become more dementia aware.
That means we need the community to open its arms to people with dementia.
That is why initiatives like the special garden for people with dementia at this year’s Bloom Festival are so important.
The Memories Are Made Of This garden creates a space where people living with dementia can reminisce in a welcoming and supportive way.
Families from the Bloomfield Social Club in Rathfarnham in Dublin were involved in the concept of the garden which is a wonderful touch.
A garden is a wonderful amenity that provides a tranquil, peaceful and a safe place to go for people with dementia and their families.
I love to spend time in my own garden as well. I try to plant some flowers at home myself and I really see the value in whiling away a few hours in that safe and secure environment of the garden.
To just sit and be still and to potter for an hour, when the weather is good, is just so very powerful and fulfilling.
People with dementia and their families are being encouraged to visit the 1950s-themed garden, called Memories Are Made of This – in the Bloom Festival, in Dublin’s Phoenix Park from 30 May to 3 June.
The garden is a project of the Dementia: Understand Together campaign and aims to create a positive and enjoyable experience for people with dementia by rekindling fond memories. See here for tips on stimulating reminiscence in your own garden.
Kathy Ryan is the Vice-Chair of the Irish Dementia Working Group which is supported by The Alzheimer Society of Ireland.
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A 20-30% drop? From what I’ve seen it’s more like 20-30% are still using public transport.
@Lurfic: it’s badly written. It says it has fallen TO between 25% and 30%.
I would read that as a 70% – 75% fall
@Lurfic: How can you keep apart on public transport…..you would want to be insane to use it but some have no choice.
@Lurfic: 400,000 people used Dublin bus a day last week, 80,000 to 120,000 now if your numbers are correct. This virus commonly spreads by touching contaminated surfaces.
There’s a famous case of a Dr who visited Hong Kong during the SARS outbreak in 2002-03. Stayed at a hotel, 11 people on the same floor got sick because they touched the same lift buttons.
https://www.cnbc.com/2020/02/14/hong-kong-hotel-hosted-super-spreader-in-the-2003-sars-outbreak.html
“Whenever an individual makes contact with a surface, there is an exchange of microbial life, including a transfer of viruses from the individual to the surface and vice-versa.” Dietz et al., 2020
Public transport, especially Buses, are potentially a huge cause of infection because so many people touch the same surfaces each day.
I also say wrong advice given about dentists by the government today.
Ref.:
Dietz, L., Horve, P.F., Coil, D., Fretz, M. & Wymelenberg, K.V.D. 2020. 2019 Novel Coronavirus (COVID-19) Outbreak: A Review of the Current Literature and Built Environment (BE) Considerations to Reduce Transmission, https://doi.org/10.20944/preprints202003.0197.v1
Jan. 23: Public transport on buses, trains and ferries in Wuhan are suspended from 10 a.m. local time to help prevent the spread of the virus.
Good! less amount of people in close contact on public transport the better!
@Bobby wilson: And so they should continue! Most people are continuing. And there the ones who plan on cutting down historic trees and robbing peoples front gardens
@Whoswho:
Let’s get a grip here. In the last 2 weeks more people have been killed in traffic accidents than from COVID19. If we’re talking respiratory issues, there’s a direct correlation between the number of cars in Dublin and the number of children with asthma, other respiratory issues have been on the rise for quite some time too.
Fewer cars on the roads is better for us overall, buses aren’t the enemy here.
COVID19 is serious, and avoiding public transport right now is sensible, but this isn’t a normal situation and basing our transport policy purely on the events of these months is foolish.
@: OK you hop on a bus without a mask that actually works and see how you get on……this is only starting when it gets going it will be carnage.
@Peter Hughes:
Lad, I literally just said avoiding public transport right now is sensible. I’m saying we shouldn’t base our future transport policy on a once-a-century event.
U really have some sort of anti car agenda dont u. I’ve seen u on other posts and it always the same copy and paste remark.
The last post I read ur comments was where a young lad had died in a car in Clare. U turned that into a rant about jailing drivers who are polluting Dublin. Go away will ya, people like u with their little agendas, ur transparent.
@Sam Greene:
Opinions? In the comments section? Inconceivable!
And no the comment was that people who kill people with their cars should be jailed. Not exactly a radical idea.
Probably because most of Dublin is closed down & also good to see people are keeping their distance when they can!
Surely running a full service puts transport workers health at risk ?
Less transport would mean more people in the one bus/tram/train.
Particulary those with underlying health conditions.
@Ashling Fenton: Exactly – running fewer buses and trains would be ridiculous at this stage.
in other news…. when the sun goes down….. it gets dark
@thomas patrick: not if you turn the lights on
Portlaoise to Heuston train this week has been nearly empty in mornings. Some people still managed to be less than 2 metres away, with plenty of seats available.
All public transport should have hand sanitizer on them. I saw a Dublin bus today and people on it and NO social distancing. We need to temperley suspend public transport otherwise this will spread like wildfire.
@alan scott: How exactly are people to get to clinics, hospitals and their necessary services without public transport? It could well come down to walking because people don’t have the fare, but if they have no choices, and need to buy food, or medicines, that is what public transport is for.
@Fiona Fitzgerald: well i don’t see many people using public transport do you? and what is wrong with cars, don’t say people dont have cars, (neighbor’s can help out also that is looking out for the elderly message is for) a lot of volunteer organisations for which I’m part of are standing by FOR THIS REASON!!!!. You make yourself look silly with your comment goodbye. Stay safe
@alan scott: Yeah, good idea. You can fit at least 4 people in to a car!!!!
@alan scott: and please explain to me how you’re supposed to keep 2 metres away from your neighbour/family member/friend if they give you a lift? Hop in the boot?? Cop on will ya, not everyone has the luxury of having someone that can help like that at a moments notice.
@alan scott: we all don’t have cars some of us depend on public transport..
@Mark Mulligan: there is lots of frontline and volunteer organisations the irish red cross, st John’s, order of malta are standing by to help those in need, getting groceries, prescriptions, hospital visit etc. They are standing by to help free of charge. We will have face mask, gloves, face shield, and apron so the risk is low for us to get infected or likewise for them. Its better then been on Dublin bus where every day a junkie is injecting themselves or snorting something.
@Fr. Fintan Stack: according to rte news 75% in drop on public transport. I dont mean to across as been insensitive but people are been selfish by going on public transport where they are sitting in close proximity to each other when they know the risk is to high to travel on public transport. I dont think I have to get to work or il get sacked if I dont turn up is going to work with this virus. Many people are working from home including me, this is not going to easy but my health and others is more important.
@alan scott: People working on the front line in supermarkets, hospitals, surgeries, haulage, maintenance teams, etc. can’t work from home. The 25% still need to get to work or society will completely shut down. We cant just pack them off in to car sharing for obvious reasons. Public transport isn’t ideal but its better than the alternative.
@alan scott: OK, so how many staff have they got versus how many people require their assistance?? There’s not enough to help everyone and that’s why we still need a transport system in place for those who are mobile and still able to use it! As a bus driver I’d love to know what bus or busses you get that you see masses of drug taking. Have you reported it to the driver? The guards? Or do you pretend it doesn’t happen and hopefully it’ll go away
@Mark Mulligan: you have a point not all the time but it does happen. And I have reported it to both guards and the driver. I drive also so 85% of times I have to go somewhere I drive, maybe i dont see it from the point of view of people who use public transport as a necessity but from a hygiene point of view public transport in ireland and esp Dublin leaves much to be desired. Good day
@alan scott: now ur just being silly. Those services couldnt possibly cover all the people who would need their support if buses were not running. But people should defo be sitting apart and wear gloves so as not to touch the surfaces, poles ect on buses.
@alan scott: That goes against all the best advice worldwide. Some people must use public transport.
@alan scott: You can drive not all of us can for various reasons. Some people need to travel and you are ignoring that.
No implementation of social distancing on transport yet.
@Mark: my husband is a transport worker. They’ve only been given hand sanitizer. He is asking passengers to board at the front door only and disembark by centre doors. He said there are very few using public transport, but as long as people are working the NTA will provide a service. He also has an underlying health condition, I’m worried he might bring this virus into our home.
@Nicola McClurg: A Bus Eireann driver i know told me all they were given were baby wipes no hand sanatizer no gloves.. Crazy way for frontline staff to be treated
@Nicola McClurg: the Employers have a duty of care to their staff. Ur husband should be issued with gloves and hand sanitizer. Thats disgraceful.
Buses are normally filthy but no way in hell will I be using a bus or train during this pandemic.
@Lisa: I had no alternative but to get the bus today when going food shopping, as I don’t drive and the nearest supermarket is too far away to carry several, heavy bag-loads from. A woman – with a young boy beside her! – was close to coughing up her lungs. (I guess that she missed all those media notices about Self-Isolating if you think you might be infected.) Thankfully she was at the far end of the bus and well away from me. Don’t know what I’m going to do now as regards getting in vital provisions, but there’s no way I’m using public transport anymore while this crisis goes on.
@Sean May: she should have been arrested
@Sean May: time to get a bike with panniers buddy. No better time – quiet roads now and everything.
Kill two birds with one stone – virus free transport plus get your exercise in.
Cycling increasing in cities all over right now for those reasons
@Jazz Buckler: A nice suggestion, Jazz and appreciated. Alas, I have COPD, so while I can manage the walk to the supermarket okay, by the time I got back from there on a bike with a gonkey-load of shopping, I wouldn’t be needing to wait for Corona to finish me off, lol. I should add that I live alone and am socially isolated, so the option of having someone to drive me back does not exist either. Thanks for your comment though, and I hope that you and yours will all be okay. Cheers!
@Sean May: taxi is safer in this situation and drivers are voluntary ring your local one for assistance next time
@Sean May: are stores still doing home deliveries? I dont know if theyvare , but might help u if they are.
@Tony O Neill: Arrested for coughing. Great idea.
@Jazz Buckler: I was waiting for the bike says the day post
Not everyone in Dublin drives and there are people who still have to get to work to keep things going. Public transport has been a life saver for me.
Will only be using buses for hospital appointments from now on
@David Jordan Dr Who is a fictional character. He certainly did not appear in Hong Cong.
Any chance that the (few) bus drivers that love to jam on their brakes sharply (even with less traffic about!!) would calm their driving down? This seems like a sport to a rare few drivers – to jam on and cause passengers to lurch forward forcing them to grab onto the virus-laden handrails. Please, please drive a little more smoothly.
Also agree strongly that all drivers be supplied with masks, gloves and hand sanitiser – even the few brake-jammers out there!
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