Providing for the physical needs of a loved one

Views expressed are my own, this is based only on my experience, I am not a trained expert or physician...

Our family grew up with the incredible support of a strong single mother. Determined and caring, wise and loving. In her own life had many challenges that she overcame while developing a career as a Therapist and Healer to so many people in Ireland.

It is no surprise that her family were motivated to care for her. A story that is of course not unique to our family – a universal story.

Our mother was diagnosed with a degenerative, progressive and untreatable illness perhaps 7 years ago. She valued her independence and dignity above all else bar her family. The condition was Parkinsons PSP (Progressive Super-Nuclear Palsy).

The medical effects of this condition are relatively fast in its progression and can affect patients with anxiety and the ability to synthesize ideas, perhaps even a feedback loop of condition related anxiety feeding emotional anxiety. This impacts sleep and of course the condition slowly but surely erodes most physical capabilities until speech and swallow eventually decline. It is a challenge for any patient and every family involved. Not unlike conditions of Parkinsons, Multiple system atrophy, Dementia or Alzheimers.

Our loved one was cognisant throughout and that had its blessings and its burdens. It did however allow us to learn much on the journey in caring for our Mum. The feedback we received allowed us to learn and improve in how to support her, knowing that small differences, being thoughtful, really thoughtful could make a huge difference.

The core insights I found on the journey were:

A self-awareness that I knew very little in how to support my family.

That I wasn’t a doctor, geriatrician, neurologist, physio or occupational therapist. The third and final insight was recognising that this is a stressful and difficult time for family carers, remembering that most families facing this period usually have careers (maybe 2 in a household), and likely to have their own family. This can be limiting and demanding at the same time. People in this position likely feel guilty, that if only they could do more, and even if they do, likely guilty again for not being able to be in two places at once (with their loved one and their own family). There are clearly trade-offs. Each person also realises that the commitment of being a carer, although manageable with the right support, will certainly grow until it finally diminishes. A challenge that will require people to look after their loved ones, ensure they look after themselves, as well as the many loved ones around them as well.

So what exactly is the role of the family member? I found this support role was a multi-disciplinary role. One that I and many others are not always prepared for.

Primarily (and obviously) it is to provide emotional support for your loved one. An area I slowly improved in, if not an area where I had much to learn about myself.

The need to provide broader family emotional support (support for siblings and close family friends), managing boundaries, helping to keep communication clear, managing everyone’s fear and best intentions. Let there be no doubt, this is a frightening time for the any patient, it is also frightening and stressful for all the family, including those friends closest. In many ways the situation has demands on all the family and this period can cause grieving for the loss of a loved one. Everyone faces this period differently. Being patient with this can be a challenge. This is a personal journey, and I am grateful to my wife, my sisters, my mother, and her friends for helping me to become better in that role.

The second area is the becoming a more learned support (what I refer to as Facing the learning curve). Researching and adjusting to the learning curve of a specific (or set of specific) medical condition(s). It also relates to learning how to manage health systems, doctors, consultants and carers. Learning what to expect next and how to be prepared.

We were lucky in that my sister is a doctor and has experience in helping us understand how to maintain a medical history, how to understand medical terms and medications, understand what to ask for and how to ask for it. Even still, the unpractised like myself, will not truly understand the true implications of simple words related to a condition or symptom. Terms like Mobility, Fall-risk, Anxiety, or Dysphagia for example have little meaning until you face them and see them develop up close and first hand.

Thankfully as I gained some better emotional control, I could see and learn from so many around us. From the stage of confusion until a diagnosis, the stage of managing living independently at home, the introduction of visiting home carers, until eventually, relenting to the support (and expertise) of a nursing home during Covid.

Over time you may gain a different understanding of what carers face, you may even have the opportunity to learn how to best support the carers and nurses in a home and be an unofficial part of the care team.

There are learnings throughout: personal emotional development, as well a basic physical practises like learning how to dress someone, how to support and carry someone properly, how to help with eating, drinking, or managing cleanliness. All to support the identity of your loved one, their comfort and dignity. We like to speak of Modern Seniors, an acknowledgement that we too will face the challenges of age too, but also to respect our elders, their journey and experience.

The last aspect of the role of the family carer is to provide for the physical needs of a loved one – Providing for nutrition, clothing, special equipment, treats of gifts that can raise someone’s day. This can also mean being a personal taxi or Uber driver, supporting with Hospital or doctor visits, getting phones or TVs fixed while learning how to gently be your loved one’s accountant and / or lawyer.

What family carer perhaps is challenged with most is headspace and time. In hindsight, time many will rather have spent one-to-one with a loved one providing the emotional support on the journey, versus time spent shopping and learning about fabrics, name labelling of clothes or focusing on what might be missing.

For me that basic level of awareness of what being thoughtful meant was awoken by the women in Mums life: my wife, my sisters, Mums friends, and her carers and nurses. They would send care packages or bring gifts of clothing with elasticated waists or breathable materials. Fresh underwear, pyjamas or toiletries is a treat and actually needed – like the feeling of sleeping in a bed of freshly made linen. We learned that Mum appreciated it when you remembered to bring her shower gel or toothpaste (and I am embarrassed by how many times I forgot it as I rushed to visit the nursing home, the shower gel waiting for me at my home on the hall table). I eventually learned she needed not only shower gel but two months’ supply of toiletries with a focus on moisturising products – I needed a service I could order from: one that would research and find the right products, allow me to purchase it at the point of need and awareness, and deliver it for me to my Mum –ideally wrapped with Love and a Bow!

The feeling you have in supporting a loved one is difficult, you always want to do more, but don’t always have the awareness or capability. You are always juggling specific events, new information or your loved ones needs while, at the same time, trying to maintain your own life, your family and most likely the demands of your career. Its stressful.

My wife Serena and I realised that we still wanted to do more as well – just to make it a little easier for families, carers and loved ones facing this type of challenge. We know that we are limited in what we can do with the very personal and patient specific aspects families face in providing emotional support or indeed learning how to manage a specific condition.

What we felt we could do was provide access and convenience in finding the products and service to help families provide for some of the physical needs their ones have. Needs that when thoughtfully met can make a big difference, raise someone’s day, or build a connection with a thoughtful gift.

Together we worked with experts in aged care to find a range of essentials and gifts that can be ordered and delivered directly to your loved one. Where we curated and found products where we hoped to be thoughtful for families: thinking about Fabrics, Name labelling, Packaging, Layering, Laundry Cycles, Clothing capsules, Electronics and Hand co-ordination / mobility. We continue to research these products each day and welcome product ideas that can positively impact the Modern Senior.

As my Mum would say, “A little and often is better than all in one go”, and we hope in doing so we can build connections with families that are wrapped with love and a bow.

The journey we have been on has been the inspiration for www.alittleandoften.com – We sincerely hope it can make things a little bit easier for loved ones, families and carers.

With thanks - Niall