Writing this has been something that has weighed on my mind for quite some time and maybe it has played a role in having been absent from posting on here at all. In some terms it could be considered quite saddening and in essence, devastating to read but then I can’t help but think of all the people out there who are facing the same future as what I’ve been going through over the past two years; the rapid and devastating deterioration of someone you love after having been diagnosed with a terminal illness.
Now for clarification I hate the terms “terminal” and “illness”. Both are so overused that the person facing the disease simply become the “patient” whilst the closest are defined as the “carer”. It’s easily forgotten that a human still exists within the shell of these new labels. You are a family at heart and day to day life must go on outside of what is glorified and painted with cotton candy in the movies, they skip to the end and forget the struggle between, the endless unknown and waiting for what the next day will be. It’s important to live life (obviously), but it’s not easy and over time me and my Pa have found ways in which to alleviate the struggle for him. I’ve decided to share a few of these below. Here’s Part One.
- Essential Oils. Lavender is phenomenal at calming someone who may be dealing with an exacerbation of their illness. My Father loses oxygen very quickly which can easily spiral to a panic attack therefore making the symptoms much much worse. I’ve found that lavender scented hand creams, hand sanitisers or even pure oil dabbed on the pulse points including just below the nostrils are hugely helpful to assist in calming these moments. By focusing on the smell it helps distract from the struggle but it’s properties are hugely helpful to anyone dealing with the stress of daily life. It has many advantages (anti-bacterial, anti-inflammatory and useful for lowering blood pressure) and is available in most drug stories at reasonable prices so find yourself a good oil or cream and keep it handy for these moments.
- Additional Medicines. Now this maybe a difficult one as someone dealing with a debilitating illness may already be having to manage a wealth of medications that differ day to day and week to week. If possible allow them control of this area (you can keep an eye from afar) so they can feel involved. Simply allocating medicines may make your loved one feel like a robot or a puppet so it’s important to work together and allow them to govern what you’re both comfortable with. However, for pain management it is important to speak up to your GP, Palliative Nursing Team or Consultant as no one should be suffering in silence. Morphine is probably the main pain management medication but for someone with respiratory distress Lorazepam (or a similar benzodiazepine drug) is fantastic at producing an almost immediate calming relief to exacerbation of breathlessness.
- Hobbies. This may be an obvious one but can actually be extremely difficult to maintain. It’s easy for the mental health of you and your loved one to deteriorate, so much so that you don’t have the motivation to do much outside of just existing. But it’s important to find joy in the little. Watching films, reading books, doing jigsaw puzzles, painting and drawing, writing, board games and even listening to the radio are all simple tasks that can be done with little fuss and little physical effort. Indoor gardening in small plant pots or crafting gifts for others gives them a feeling of worth but also the ability to give back to the ones they love. They can’t nip to the shop and buy a bunch of flowers to show they care, and believe me they want to show how thankful they are but feel helpless in doing so. Keep them mentally active and it will reap rewards in keeping them positive and to keep fighting. You might not be able to run marathons anymore or climb physical mountains but it doesn’t mean that the home should become a prison cell.
- Get Outside. That being said, if it is at all possible then help them stay active and try where possible to get out and about. Speak to your Palliative Care team about getting hold of a blue badge and the Physiotherapists for walking aids to help make mobility all the more easier and make sure you do your research on where is appropriate so you can enjoy your day. On lovely Summer days then National Trust properties or private estates are brilliant to explore as most of the garden areas are flat to walk along plus they usually have the option to hire motorised scooters if they want a bit of fun driving themselves around over being pushed. It’s always worth asking if there are discounts for carers as most businesses allow free entry and in the case of going to the movies you can apply for a CEA card which again allows free entry to carers when visiting with your loved ones.
I hope this has been useful in parts and I’d love to hear more of how anyone else copes with becoming a carer and finding ways to improve or manage day to day living. Stay tuned for more in Part Two at some point next week.