Featured Advocate: T.J. Hübner
Updated: Apr 23, 2021
I am T.J, a self-published poet, from the United Kingdom. I never thought of myself as a creative or artistic person, just a regular nine to five worker which changed dramatically.
In 2013, I decided along with my father who was in the early stages of dementia that I would become his full time caregiver taking on the day to day responsibilities with household chores, medication, finances etc. which dad was struggling to remember to do. After a year of caring 24/7, we slowly became isolated within our own little two person world and I started to feel trapped and alone, so I made a decision that I needed to find a hobby or creative outlet to aid with my own and my father’s mental well being. In April 2014, I joined a small writing group where I learnt about how to write and perform my own poetry which really helped me at a time when I wasn’t sure of myself.
What I found while writing my poetry was how much stress, pent-up anger and emotional helplessness I was ignoring within myself which went into my poetry, but at the same time how much stress, pent up aggression and emotional helplessness the dementia was having on my father. I channeled all my emotional feelings into my poetry and used what I saw, which helped me to better help my father cope with this horrible illness. My poetry developed into a form of therapy for us both where I expressed in my poetry what I felt, saw, did and mostly didn’t speak of openly, even those topics I was too scared of admitting to myself like I have expressed in the poem I called ‘Life Chosen.’
Upon the death of my father in June 2019, I once again found solace in my poetry writing a poem for his eulogy called ‘Standing Before’ expressing my loss and the grief I tried to hide. After six months I decided to use the poetry I wrote about care-giving linked to dementia and self-published a poetry anthology as a form of advocacy for caregivers and dementia suffers alike, hoping that anyone who read the poems, especially other caregivers who felt lost and isolated or even people in the early stages of dementia would understand they were not alone and that there is help to be found.
Finding a group, team or society that advocates for any form of expression which can be used to relieve stress and the feeling of isolation, whether it be writing, art, music and singing, dancing or sports is a must for anyone caregivers own mental well being, but also that poetry can be used as an aid to interact with the person they are caring for also. Writing poetry has helped me cope with so much in the past eight years from a divorce, becoming a full time caregiver with all the stresses accompanied with the role and finally the grief of losing a father who was more like my best friend. I really do advocate that both caregivers and those they care for, find their own way of coping with stress. "Go find your own release and take care of you".
My poetry anthology called A Dementia Carer Poems (Poems from the Heart for Caregivers) can be found on amazon in eBook and paperback at https://www.amazon.co.uk/dp/B084VCLSKB
What excites you?
The idea that I can pass on my experience and the knowledge gained from my time as a full time caregiver to other people who think they are alone in their endeavours through the medium of my poetry or writing is what excites me about the future.
What matters to you?
I think what really matters to me is that people who don’t know about caregiving, get an understanding and the message that as a nation we need to appreciate how difficult, emotionally and financially draining, time consuming and physically challenging, but at the same time very rewarding the role of a caregiver can be. I try to do this within my poetry.
What drives you?
My drive is to find new ways of expressing in words and poetry how important it is that we never take caregivers lightly by continuing to write more poetry and by continuing to write a memoir of the six years I was a carer to outline both the rewarding side as well as the emotional pitfalls faced by myself, but also give an account of how different a single case of dementia can be differ from another case.
What do you stand for?
What I would like to see is a more focused effort to highlight the unsung heroes who don’t take on the role of caregiver as a profession, but as more of a philanthropic endeavour for little or no pay, just so they can make their friends or families lives safer and more rewarding by shouldering the most burdensome of tasks, also to outline how much caregiving companies overcharge for their services compared to how much they actually pay their staff who are expected to work unsocial and sometime very long shifts. Another topic I would like to highlight is how each case of dementia is never truly the same, so more research is needed into the symptoms and cause of dementia.
So what I believe I stand for would probably be summarised as, better financial aid for unpaid carers of family, who choose to be a caregiver first and employee second, a better pay structure with a work life balance for the employed caregivers with less hours and a better global funding strategy to help one collaborative research body find a cure for dementia rather than governments funding the big money pharmaceutical companies who look at the bottom line of how much they can sell the drug for over its likely effectiveness on fighting dementia and Alzheimer’s before putting it on the market.
What causes are special to your heart?
The causes special to me are the ones which support firstly the elderly and secondly the people who care for not only the elderly, but anyone in need of caring. These cause are AgeUK, Dementia friends, CarersUK and Alzeimers Society
What's the difference you want to make?
Personally, I want to open people’s eyes to the stress and emotional isolation both caregivers and those individuals they lovingly care for can suffer from, because if the person doing the caring is in a depressed state of mind how can they truly do their best for the person they are tasked with caring for. If my poetry makes someone stop and think about their emotional and physical well-being, so they make a change for the better and ask for help then I will know I have made a difference. Also if sharing my story with others lifts their hopes then I have succeeded, especially if it stops someone doing something more drastic or potentially life threatening to themselves or the person they care for due to depression.
Did you experience compassion fatigue from caring for your father? If so, what helped?
I think the simple answer as I look back would probably be yes. In the beginning when it was simply making sure things were done, and knowing I could leave him alone for a couple of hours, not so much. But after coping for two years solely on my own, I felt the pressures of 24/7/365 caring, so I was advised to get outside help which amounted to daycare and then later when I was struggling more some in house care.
What really helped me though was my poetry which I used to vent my frustrations, curb the anger and also remember the good stuff I felt I was doing. Also having a couple of hours of 'me time' alone to do whatever I wanted, happy in the knowledge dad was safe elsewhere kept the fatigue at bay.
I never really mentally or physically showed fatigue, but there were days that I felt I couldn't go on, but then when I got a glimpse of recognition or a sly smile or even heard him call my name every so often, that made me realise why I was caring for dad and why I chose to do it in the first place.
One part of the experience I did feel was strength sapping was how I learnt to sleep without sleeping if you can understand, so I could listen for dad getting up. So sleep when you can to refresh yourself is a good motto.
What advice would you give to others caring for someone with dementia?
My advice to others is firstly, that I advocate for family caregiving before paid caregiving, dependent on time and money variables (love for a person will always be better than being paid), but that is only my personal opinion. In the same breath though do try and not to do it all alone, if you have family ask for their help, even if it's just for an hour a day to watch your loved one. If you are alone, get outside help like daycare or in house carers visits (but check out what you are entitled to from the government or health insurance companies before making a decision) and don't neglect any friends you have as they may want to help, even if it's just to listen to you talk. You will soon find coping and caring becomes second nature, but you will start to lose sight of your own identity.
Also have a daily routine they can understand. Do the tasks at roughly the same time each day, so they recognise patterns for themselves, but don't force the issue. If they are not ready for a specific task at a specific time, walk away for ten to fifteen minutes, then try again, but also ask them if they are ready (always communicate and look out for non verbal cues). As dementia is a progressive disease the ability to adapt is more important than how you care as I have already said, caring becomes second nature, the only exception being incontinence because that can lead to rashes and sores which can lead to infections so incontinence has to be done as needed. Also watch out for swallowing issues which can lead to choking fits.
Another good step is to always have a daily planner or a to-do-list of tasks with times you can tick off or scratch out, so you don't confuse yourself. A day or week planner is also handy to record any relevant events like daycare, doctors, nurses or hospital visits which you can keep track of the days on, because you will find days, weeks and months will just blend in to a continuous cycle of repetitiveness where you wake up, meander through the day, then go to bed.
Above all else don't neglect your own health (which I admit I did do physically, gaining weight which I am struggling to lose) because if you are ill how can you care properly for your loved one who won't understand what is happening and most definitely can't care for you, which highlights another factor to consider, have some kind of restbite plan in place for such times or for when the unexpected happens like accidents or as become blatantly obvious lately a pandemic where you may struggle to cope with your caring role.
Lastly, while your loved one is still able to understand things, put some legal protections in place like a power of attorney, a DNR, etc. and make sure you have the correct documentation to hand giving you the right to act on their behalf with banks, doctors, nurses, hospitals, social workers and care companies. Another quick point is setting up a funeral plan (either paying for it outright or monthly) and getting their input, so you have less to worry about when the time comes. Store all these documents together with easy access.
Did you have some form of a support network to help keep you healthy as a carer?
I think I may have answered this already, but here goes anyway. For two years I did everything on my own not involving anyone as we had no close family or friends to help and I didn't feel we needed outside help. The only proviso I put in place was a door alarm which went through to a call centre who phoned me to tell me if the door to his flat had been opened, so I could go check on dad.
Once we had moved I was living with him so the only help I implemented was a day care where dad could socialise with other pensioners moving him in to a three day pattern at a different daycare as his dementia worsened. In the last six months of his life a more substantial caring structure was needed where we had two outside carers coming in three times a day to help me with his daily hygiene needs due to his mobility issues which meant he could no longer stand while I washed, dressed or dealt with his incontinence issues. The only other person involved was a social worker who was a non entity unless I contacted her or one of the daycare or carers raised a concern, but for the full seven years from start to finish I did everything myself every hour, everyday, every month of every year. I would say my circumstances were not normal, but everyone will find their situations differ as dementia doesn't take the same track within every case. I was lucky dad knew who I was 99% of the time only losing track of everything else that everyone takes for granted.
Website & Blog - https://tjhubnerwriting.wordpress.com/ Twitter - https://twitter.com/hubner_t Goodreads - https://www.goodreads.com/author/show/20193894.T_J_H_bner Amazon - https://www.amazon.co.uk/dp/B084VCLSKB
How will you express yourself this week?