I’m related, not by blood, but in the winding ways of family ties, to a lady named Barbara. She’s in her mid -eighties, from the silent generation, but there has never been anything silent about her. She was the kind of woman, whether you liked her or not, that you simply noticed. Barbara was opinionated and fiercely independent. She could sew a wedding dress whilst running a pawn shop and selling popcorn as a side hustle. When her husband’s business went belly-up, she made plans to keep the family afloat. She drove her children from horse riding to swimming to extra maths lessons while volunteering at the bake sales. She built up businesses repeatedly in different cities. Her eyes were fiercely intelligent and she knew everything from cooking to politics – and had an opinion about it all. She was an entrepreneur long before it became a buzzword. She was a mom, a wife, a friend. Barbara is no longer any of these things. In fact, seeing her now, you would never guess she could have been. You see, Barbara has Alzheimer’s.
Over the past seven years we’ve seen the disease chiselling away at her, robbing her more and more of who she was until it swallowed her whole. This woman living in a care facility does not remind any of us even slightly of Barbara. We do not know if Barbara is suffering, but for her loved ones it is devastating. It feels like a long goodbye that just never seems to end. In desperation her daughter said to me, “I wish she would just die already. I wish I could properly lose and mourn her now. Seeing this shell of a woman just drags out our grief and we cannot find peace or remember her and honour her for who she was”.
Visiting Barbara is an act of duty, and of course, with this comes guilt. As with so many of the other patients in the facility, our family battles with the details of her care. The decisions that are now taken on her behalf are difficult to navigate. Offence is taken, feelings get hurt, guilt, love and shame seep into every space and every relationship.
My own mom often says to me, “If I get Dementia, just lock me away and don’t come visit.” I tell her she is crazy, and we won’t ever let that happen, but maybe I must be brave now and have a conversation with her. It is probably time that we do need to talk about why she says things like that and what she is scared of. Is she afraid she will be a burden on us or is she scared she will suffer? Maybe she fears her loss of dignity. It’s probably a combination of it all.
Watching Barbara fade has forced us to face uncomfortable truths – not just about her illness, but about how we love people through it, and what dignity means when memory is gone. While we aren’t a dementia home, many of the patients who come to us for short-term recovery or respite care, already live with dementia or cognitive decline. Others face sudden changes to their personalities due to trauma or illness. Either way, their identity remains our compass while we care for them. Knowing what makes an individual who they are helps us tremendously with offering the best possible care. We have the conversations with patients at the beginning of a diagnosis as to what their hopes are for end-stages of illness. It is a hard talk to have, but it is much harder in the end for everyone if you shy away from it in the beginning. It helps all of us, and the family most of all if you are clear about someone’s wishes while they are still able to make them for themselves. The important things are usually easier to decide: things like how much intervention you would want. For example, people often choose not to be ventilated or tube-fed, but might choose for small infections to be treated with antibiotics. Choices around resuscitation is black and white and easy to respect, but there are lots of little things and smaller decisions that give our patients and their loved ones the sense of safety they need before coming to us. Dr. Robert Fulghum said, “In the end, it is the little things that are the big things.” When you forget who you are, we, together with their loved ones, need to remember. It will be the trivial details that will keep that person intact for a little bit longer. It is a profoundly important duty we have to honour the soul with which we are entrusted.
To end this blog, I will list a few of the endearing requests we have been given over the past years. It served to remind us of who that person really was long after they could express it clearly anymore. These are soul-notes we treasure. May they remind you to ask and consider what you really want while you still have time. I promise, it will make the journey gentler.
- I want my Yorkshire terrier to visit me, every day.
- I want to listen to ABBA and Queen.
- Call me Nonny, not Mrs Naidoo.
- I want a hair dresser to come and wash and dry my hair every week.
- I do not ever want my children or friends to see me naked or help when the carers are assisting me with “bathroom-related activities”.
- On my good days walk with me in the garden.
- I love Clint Eastwood movies and any western “skop skiet and donner”.
- I want to watch the rugby finals so make sure I’m not sleeping.
- I don’t want my sister and brother to visit at the same time, they fight.
- My domestic worker was my friend as well. Please bring him to see me often.
- I’d rather be given more sedation and less pain meds if there has to be a choice made.
- Don’t let me walk around without my dentures or let people see me like that.
- Don’t let the staff leave a bucket in the room, I don’t want to kick it today. 🙂
- I know I should stop smoking but I’m not going to, so don’t let people tell me to.
- If I forget that my husband died, don’t remind me. I’d rather believe he is alive.
- Even if I can’t eat bacon anymore, let me smell it sizzling.
- I hate yellow. If I can’t buy my own clothes anymore, don’t let anyone buy me yellow outfits.
- I realize I am black, but that does not mean I like pap. Don’t serve me pap.
- I want to wear my gold hoop earrings rather than my hearing aids.
- I like bathing. Please help me bath for as long as it is possible.
- I hate the thought of wearing nappies. I don’t want other people to know that I am, so please don’t mention it in front of people.
- Don’t let people from my church come and pray for me. They are just wanting a miracle and I’m quite okay not to get one.
- I will only ever drink half a cup of tea, but I want you to make me a full one regardless.
- I’m not touchy feely, don’t come hold my hand.
- I want to listen to the BBC news when I fall asleep.
- I don’t like the dark. Please leave my side lamp on at night.
- Don’t forget I like Guinness and lime milkshakes.
- I hate people touching my feet. Don’t bring a podiatrist near me!
- I love the smell of lavender.
- While I am able to still swallow I want to have holy communion.
To assist you further on this journey click on https://palprac.org/https-pfor-health-care-professionals-is-your-patient-eligible-for-palliative-care/palprac-advance-care-planning/ which can guide you when having these conversations.