You may find yourself looking after someone who's coming to the end of their life. They may be suffering from a complex of mental and/or physical illness. This writeup is focused on the UK context, but may be of interest or utility to others. Or not. I'm beginning this while on hold to an NHS service provider. I'm talking about situations where there is a formal terminal diagnosis or where recovery is extremely unlikely.
Congratulations, you are about to experience a profound challenge. You're going to learn a lot, and hopefully apply knowledge and skills you already have to care for someone. The only thing I can equate this with is bringing up a child (which I have seen other people do but not done myself). In some ways this is an opposite to that. Parents guide children into life, and we can also sometimes guide people on their way out of it.
Looking after someone can be helpfully thought of as a project. If you are going to make a serious attempt to manage the project, you need to first make an assessment. Who is involved? What resources do you have? What do you need? What are the feasible goals you'd like to achieve? What are the problems that cannot be solved, but may be able to be ameliorated? Are you OK? You must maintain your own capacity if you're going to help someone you care about, but you are also going to sacrifice a certain percentage of your time, energy, money, and unfortunately, your overall wellbeing is going to take a hit. Is there a current crisis? What is the steady state going to look like? Finally, but crucially, how are you going to engage with the person you're caring for? Maybe you need to "report" to them on health, legal and financial issues and keep them as involved as possible, or maybe you have been given complete trust to handle all of that stuff, and part of your role is to shield your loved one from stress and details they are no longer interested in. If the situation worsens, problems to deal with will try to take over. You will resist. Remember, there is a reason people bring flowers to hospitals. You are not focused on problems, you are focused on a person you love.
Hopefully, if you find yourself in the role of a carer, you and the other person have good lines of communication. This is a critical dimension of your project. Any weaknesses in communication are likely to be exposed and threaten your overall goal of serving wellbeing. You must establish the level of trust. Functionally, you and your loved one are going to become a symbiotic unit - what are the boundaries? Don't worry if you aren't sure, you can always find out the hard way if you must, but it's going to hurt. If either of you are stressed, both of you are probably stressed. Write "No stress" on the mirror, if you want. You may get on an even deeper level of connection and empathy, taking into account their state sensitively and eventually instinctively when you communicate and act. This is immensely rewarding when successful, but can be an extremely intensive and difficult thing to develop and practice. If you find yourself caring for someone you truly love as they move closer to the end of their life, please reread the previous sentence, because it covers the entire situation.
While you establish the parameters and resources, consider your networks. It is distasteful to think of people as resources, but if you are responsible for another person's quality of life, you need help from the people you are close to. They want to help you, so take it when you can. You may need to manage communication and relationships on behalf of another person and you need to be well prepared to engage with professionals. You are caring and advocating for one person - so you must become an expert in what they need in order to support people with more knowledge and skills but less understanding of your individual case. Decide what the questions are, pursue answers. You will memorise what you have to, but an infallible documentary record is better. You will establish whether or not you should have powers of attorney for health and/or finances. Assuming you are trusted and competent, you need power of attorney yesterday. You will make mistakes, and you will diligently increase the number of mistakes you successfully avoid. If the person you love sits next to a radiator, some dermal pain relief patches are thermally sensitive and potentially lethal. Wound care for a person on blood thinners with thin skin can be different, for example. Celebrate your victories in proportion to their significance. Can you articulate realistic overarching goals or approaches to yourself and the person you're looking after? It might be a comfort to you both if you can. Fight hard for the big wins, try not to neglect the small ones, and accept what you can't do anything about. Of course, a lot comes down to trying to discern the difference.
For most people, money is finite resource and must be deployed under some level of consideration. This can be mitigated in the UK by researching available public service provision. For example, roughly one month ago, having achieved a reasonably stable level of wellbeing for my dad, I decided to research NHS service provision in my area to try to build some resilience into the project. I found a number for a coordination team who assessed our case. We have been referred to them and are able to access a tier of services more directly despite the strain caused by chronic NHS underfunding and a virus you may have read about. We have an extra GP, a multi disciplinary team and priority in a couple of areas we need it. This took time and effort to arrange, but has developed the level of care we access.
I'm not going to go into too much detail due to confidentiality, but engaging with the problem of resources and taking advantage of what's available has allowed me to create a care plan that I'm confident is sustainable, which I can build on to try to stave off crisis. You should try to adapt and plan your way away from crisis reactivity wherever possible, but you are piloting a fragile boat in rough seas. Be aware of stars but also rocks. Your crisis clock can be reset but may be counting down invisibly.
Adaptation is going to vary considerably with each individual context. If you're moving into someone else's home, you may need a £25 bed from IKEA. You may have to sleep on a sofa for a month. You may encounter issues in the home that the patient was unaware of or incapable of dealing with. You may have to catch mice. You may find that a £30 foot massaging machine stops your patient from waking up with foot pain every night, but it may take you 2 months to patiently convince them to add it to the routine. You may have to justify every purchase you make to a person who feels guilt and fear about money being spent on them. You may have to use a two week hospital stay to overhaul elements of the home. Tread carefully, be prepared to pay dearly for mistakes, but it's better to incur a rebuke than miss the chance to upgrade a 50 year old bed for someone who hasn't been sleeping well. If necessity is the mother of invention, creativity is its father. Competence and love are grandparents. I think that's quite far enough with that metaphor, I'm sure you agree.
Ultimately, the unit you form is your most vital resource. Everything else is founded on basic needs being met well. One or two days off a week may make you more effective for the remaining days and allow the other person to maintain a level of independence, or you may not always have that luxury. If you find yourselves becoming depleted, address it immediately. Live where you are. If you are barely functioning, you will never write the note that you could leave on a table that is more important than you know. In all things you should be aiming for a golden mean in your approach. Sometimes you will have to choose the least bad option. Sometimes people will tell you that there are no options and they will be wrong.
In facing death, you must try to align yourself with the person you're looking after. A friend of mine had cancer for several years. Shortly before she died I visited her in the hospital. She asked me to read her notes, so I did. She looked me in the eye, and half told me, half asked me, "It doesn't look good, does it? It's bad, isn't it?". I had to think before I said, "Yeah, you're right, it's pretty bad". I saw in her eyes and heard in her voice that finally, she knew she was going to die. By that point this beautiful person had survived for three years beyond the best case scenario she been given, and she had done it elegantly. People often use a metaphor of "fighting" illness that I don't always accept, but this lady had strategically refused battle. She had refused to acknowledge the reality of cancer very successfully, up until that point. By that point, I was sure that what I said had become the right thing to say but it wasn't easy.
My father is 42 years older than me. I have been worried on some level about him for the last 20 years, since his sister, a best friend we shared, died suddenly and left us devastated. I called him from the hospital to tell him and he made a sound I won't forget, like I had stabbed him with a spear. I learned a lot about my father's determination, I respect his tenacity and his stoicism. This is who he's always been, but he's fading away. In this house I have a principle that despair does not go unanswered, whether by hope, or kindness, or gratitude. Having said that, when someone you love tells you they're ready to die, hear them. Trust them and yourself. I'm grateful that I've had a chance to really prepare for this. I'm grateful that I've been living with him for the past 11 months. I'm grateful for the victories we've won. I'm grateful for what peace we have. I'm grateful that he's ready.
Thanks for reading.
In the end, I managed to keep him alive for almost exactly two years. I moved in on the 9th February 2021, the day he told me he was dying and he needed to tell me a few things before he did.
30 03 1943 - 28 02 2023