The ‘ups and downs’ journey of Dementia - Helen's Story

The ‘ups and downs’ journey of Dementia

By Helen Smyth 

Following a recent Dementia awareness session ran by the WELL Programme in conjunction with the Alzheimer’s Society, WELL was contacted by a colleague in DoH Castle Buildings, Helen Smyth, who wished to share her story about looking after her Dad following his Dementia diagnosis....

It used to be the ‘Big C’ was the toughest thing we thought we would face, but right up there should be another word ringing in your ear… Dementia.  There are many different types of dementia and often people recognize it better as Alzheimer’s Disease, which is just another form of dementia along with Vascular Dementia, Fronto temporal Dementia, Lewy Body Dementia and many other types. 

Of course we are an aging population, and dementia could be one of many physical diseases that may happen to us when we all get older.  However first I want to take away that notion that dementia is something you might get when you get older as it can affect any age. When a person develops dementia before the age of 65, this is known as ‘young-onset dementia’. Based on current statistics from Alzheimer’s Society NI, there are over 22,000 people diagnosed with dementia in NI and approximately 35% without a formal diagnosis actively waiting for a dementia diagnosis. Looking at the bigger picture in the UK it has been determined that ……

My intention is not to deliberately alarm you, but to emphasis that if dementia comes knocking at your door you need to be prepared to help the person who has been diagnosed, while meantime adapting to a new role as a carer. 

My personal experience with dementia was helping to look after my Dad, alongside my family members, before he sadly passed away on Father’s Day this year. My Dad was a farmer and was always a very active person right up to his early 80’s. He was a very kind person and was the heart and soul of our family. However early last summer the family started to see that he was having issues with his memory and becoming a little less stable on his feet. Of course, we all associated those changes with old age, but it was clearly much more than that. Dad was very clever at times at covering it up in the early days, but it soon became apparent his memory was getting worse.

The first changes that came about was losing his most recent memories, for example what he did that day, or who called, and over a period time it became apparent that he did not know who my children were, and as things progressed thought I was still at school or thought I was still living at home. Of course with doing a dementia course, this is best explained by the bookcase analogy and I recommend you check it out on YouTube……https://www.youtube.com/watch?v=kkvyGrOEIfA

On quite a few occasions, he lost the concept of time and what day it was and we partially overcame that with the use of a large digital Dementia clock. It was left it on the window sill so he could see all day from his chair, which gradually he spent more and more time on as he became physically weaker.

The sad part throughout his illness was that there were lucid periods when he realised how ill he was. He got upset thinking he was a bother to everyone and very aware he was unable to do things he easily did prior to the illness. As a farmer who was so active this was difficult for both him and ourselves to accept. Therefore, it was important to reassure him that we were only helping until he felt better and if the roles were reversed he would do the same for us, which contented him most of the time.

My hope for this article is to impart some lessons that might help you if you are know someone close to you with dementia. These are only my experiences and there are many more and that’s why I really suggest enrolling on any courses available, whether in work or elsewhere.

My first lesson is if you suspect your loved one may have dementia get it diagnosed as soon as you can through your GP. They will provide you with the help and support that you will need, whether this is starting the process to assess the situation with a re-enablement team, visits by your district nurse or possibly a care package. You also can be put in touch with a dementia navigator within your Trust who will provide you with information and support, and signpost you to many other services available in the voluntary and community sector.

Of course, this may include making decisions for a care home depending on the severity of the dementia, especially if there is not a support network in place. We were fortunate in our circumstances that the care package was provided and everyone in the family became one massive support network, but I appreciate that not everyone is lucky enough to be in that position.

Physically, Dad was getting weaker and having more falls, which progressed his dementia.  As we found out later the falls were probably because of TIAs, known better as ‘mini strokes’ and each time he took a turn (or a TIA) his condition deteriorated. Caring for Dad was difficult initially as we had to assist him with many things, including his personal care, but as things deteriorated there was a need for a care package. Now bringing in my second lesson….. Before you start a conversation with your loved one about a care package remember how this is going to impact on them. As a child of the parent we think on a practical level but for them strangers will be coming in and out of their house, and in particular, dealing with the sensitiveness of personal care of washing and dressing, being taken to the bathroom or put to bed. It will take time for everyone to accustom themselves to having a care package in place.

Balancing ‘helping out’ can be difficult but as a family we were fortunate that one of us lived close by to help when the care workers were not about. The rest of the family, like myself, worked full time but to ensure the workload was shared we all helped out by covering certain days and nights with Dad, ensuring everyone got a break at some stage.  The social care workers called four times a day and were amazing, some in particular had a great rapport with my Dad. I have total admiration for them, and what they do, and in my opinion they are unsung heroes that do not receive enough recognition for what they do.

During the period of Dads illness I learnt the invaluable lessons of the “do’s and don’ts” of coping with dementia by attending training courses, whether this was through work ‘Dementia Awareness’ or through the Alzheimer’s Society ‘Carer Information & Support Programme’ (CrISP). These courses were lifesavers for both myself and my sister. Which introduces my third lesson, it is really important to educate yourself about dementia and ensure that as many members of the family (if not all) should do a dementia awareness course so everyone is onboard on how best to help that person, and in particular learning the techniques of how best to engage with them. This will be invaluable for everyone and help reduce the frustrations and distress for all concerned. Without being repetitive from other dementia courses, the key tips through my family’s experience with Dad were to remember:

However, dementia should not be overshadowed with the challenges that you will face, there are positives. Although no one could change the diagnosis for Dad, it was important that we spent quality time with him. The fourth lesson …..No longer those excuses you cannot get down this weekend, you need to make the time. Thanks to the kindness of my line manager and work colleagues, who were so supportive all this year, I was able to do that. The memories that I will cherish the most is the time when we were on our own chatting about all the things he loved and remembered, whether it was his family, the neighbours or the farm. He loved his cowboy films and in particular listening to music, of which my Spotify selection to this day keeps bringing up Foster & Allen. The important thing is that we spent time together doing all the things he enjoyed.

The fifth lesson is to remember that the experience of the dementia journey is different for everyone, and that it is important to have empathy and understanding. There will be times when you get frustrated or annoyed, especially when you are tired but please take a moment to step in their shoes and think how they are feeling. That is why it is important to take time to talk to your family and friends to offload on those occasions. Remember you need to look after your own physical and mental health through this experience.

As the title says, there are ‘ups and down’ to the journey of dementia but the end of that journey will be difficult. My last lesson and the hardest lesson is that in their last days you will need great strength to keep back those painful emotions when you are with them, as it is important to make it as happy for them as you can. See them as your loved one, not someone who has dementia. They are still in there, never let go of that thought. Most of all, when it happens, remember to grieve the person and not the disease.

From my experience with dementia there are positives, I felt I wanted to help others who might be going through the same thing. I had friends who had parents going through dementia and was able to listen and provide some advice where I could but wanted to do more. Since Dad’s passing my family and I have done an Alzheimer’s Society ‘Memory Walk’ for my Dad and thanks to the kindness of family, friends and work colleagues raised over £1500. I have gone on to do training as a Dementia Friendly Community Champion with the hope that I can encourage others to make a positive difference to people living with dementia in their community. Alzheimer’s Society NI has continued to be a great support to me and I would highly recommend getting in touch with them to sign post you to the help and support you need. https://www.alzheimers.org.uk/about-us/northern-ireland. 

Also if you are interested in what the Health & Social Care sector is doing regards dementia, check out the Regional Dementia Care Pathway in the HSCB website which sets out their vision for high quality dementia services in Northern Ireland ….. https://www.health-ni.gov.uk/sites/default/files/consultations/health/doh-future-planning-model-annex-a.pdf. Trusts also have developed and implemented Dementia Services Recovery Plans to ensure continued access to a range of services during the Covid-19 pandemic by using technology and other innovative approaches to access diagnostic, condition management and support services to both service users and carers. Many of these services I was not aware until I was in that position so if you need them be sure you reach out as the help is out there.

My closing remark is that dementia opened my eyes to a completely new world and although the journey was difficult and upsetting on occasions, I have many memories, which I will cherish to this day of the time I spent with my Dad. Dementia should not define who my Dad was as it was an illness we had to learn to live with.  Above all he was an amazing person in his own right which I wished I had told him more often, a loving husband and father, and a doting grandfather. I want the lasting memory of my Dad to be that I made him proud and that maybe from my experiences I can help make a difference.

(Pictured above - Helen's Dad)