“This text is difficult and awkward to read. So forgive me. But no one talks about this, and there is a lot of pain behind another and understandable taboo.” Nyuta Federmesser, President of the Vera Foundation, about the simplest things that are the hardest to notice.
I was at a conference in Poland on long-term care. There was a lecture, even three lectures on incontinence. Don’t worry, I only learned this word two years ago. It means “incontinence, excretion problems”. It seemed to me that we in the hospice really think about the dignity and personal space of patients, including in this part. But it looks like I was wrong.
Working in the hospice for so many years, I repeatedly (like many other employees) imagined myself in a hospice bed and thought about which of the nurses I would be comfortable with. And there was always one thing in my head: comfortable with the one who is not ashamed to let her wipe her ass.
And so I listened to three lectures by professors from different countries about how much in our life is connected with the ability to control the processes of urination and defecation, and about how to make the life of people dependent on this more comfortable. This is mega important. After all, many of us have elderly or bedridden relatives, and we think little about this side of their life, only in the context of having a supply of diapers at home and their price. And then, this problem concerns not only the dying and the bedridden.
We don’t think about it at all. But this will happen in almost every family at some point.
Just imagine that, due to illness, you now always have to think about when the next toilet is on the way. What place will you have in the theater and at the concert. It should be on the edge, and not close to the stage, so as not to disturb anyone. And what kind of trousers do you have, a belt, because you need to take them off very quickly. And what color, so that if anything, it would not be visible drops. And in a store or in a pharmacy, ask for men’s pads. Or women’s, but not hygienic, but for incontinence. And the life of the spouses, if one of them has these difficulties as a result of treatment, and he is not even a bed patient at all …
And if vice versa. If you can not go to the toilet on your own. If a person cannot do without a regular enema, or even worse, without the so-called manual evacuation, which cannot be carried out independently. Or without a catheter, you never manage to pee. Or if a person who is still quite active in everyday life has a calostomy or nephrostomy. And these wonderful bags are fixed and hidden somewhere on the body, under the clothes. How is life then? And what about sex life?
We don’t think about it at all. But this will happen in almost every family at some point. I have in mind the various problems of incontinence. This is with Alzheimer’s, and with parkinsonism, and with dementia, and after removal of the uterus in many women, and simply from old age, and as a result of oncology treatment, or after injuries and accidents, or with uterine prolapse, or due to muscle atrophy, yes even during pregnancy, these kinds of problems happen … But you never know because of something else …
But I understand more about it already at our stage, at the hospice. This is downright awful. Most of our patients are in diapers. The diaper is changed and the patient is washed by a nurse. And the patients are very many very much even in themselves and understand everything. Many people try to eat and drink less because of this. Can you imagine? Drink less, even if you feel like it, so as not to burden others …
And if this is the mother of two sons, and if this is not in a hospital, but at home … And she wants to remain a mother for them, an impeccable lady … And if this is the husband of her beautiful wife much younger than herself … Until recently, a hero, intercessor …. And if this is a mother-in-law and a daughter-in-law … A week ago they quarreled … How much pain, awkwardness, tears, often humiliation, resentment, rudeness in this.
The simplest things are the hardest to notice. Always look at the patient from his perspective, from a prone position.
Yes, even if without them, you just try lying in bed to relax and pee lying down. And how will it be if this is warm under you, and you feel how it is absorbed into the diaper, or sticks to the priest, and the nurse has not yet come … Or you need to call your husband …
That’s why most older people fall when they get up so that they can use the rest of their strength to get to the toilet. And in the hospice, when there is no strength at all, they still try to transfer at least to the toilet seat. And the back doesn’t hold, and the body falls forward, and you still can’t wipe your ass on your own, but they say to the nurse in a weak voice: “No, I’ll change seats, I can, just hold me.” And sometimes we don’t close the door to the ward or don’t even put a screen by the bed … Or we say – well, you don’t need to change seats, here we have a whole cart of diapers …
And for the patient, this is a much bigger sign of the end than taking opioid analgesics or being admitted to a hospice. We devote so much time to choosing a diaper for a child: size, weight, such during the day, this one for a walk, Japanese at night, with rubber bands, panties or Velcro, and oh-rather-need-to-change-already-for-another-size, he’s grown up, rubbing his crotch, or how-you-haven’t-changed-yet-he-has-already-twenty-minutes-pooped.
And children, after all, until a certain time, the psychological component of this process does not bother at all. At the same time, for adults in our stores, the choice is almost zero, the sizes are good, if there are three, there is no information, it’s somehow embarrassing to talk about it …
The intimate sphere remains intimate even when you get old, get sick, die
Or here’s another moment. Almost all of us have some toilet habits. Someone smokes in the toilet, someone drinks coffee, someone reads a newspaper or a favorite detective story, someone erases nail polish, and for sure we are all alone there and, therefore, we can afford to calmly and in the nose pick, and all sorts of other parts of your body meticulously look at, and fart, and … you can list endlessly.
A sick person, at best, can count on a screen near the bed, and if he nevertheless hobbled to the toilet, then he knows that behind the door is a nurse, a relative, a nurse who is waiting, well, when he is already there … and a cup of coffee is definitely there for him will not give…
Why am I writing this. Because the simplest things are the hardest to notice. It is always necessary to look at the patient from his perspective, from a lying position. We should always treat others the way we want to be treated. (God, how I hated these words as a child, when my mother repeated this mantra to me ten times a day.)
Let’s try to understand that the intimate sphere remains intimate even when you get old, get sick, die. That it is even more difficult to maintain the dignity of a patient in the intimate sphere than in the field of physical or spiritual comfort. So, as with all other intimate areas of life, you need to pay more attention to this topic and spend more of your soul on it in the process of caring for helpless people.