When caring for another person becomes a life mission. Episode 81

Monika Rachtan
Hi Monika Rachtan, I would like to welcome you very warmly to the next episode of Patient First. In Patient First we very often talk about patients and we put the patient first. And today we're going to talk about carers. Because when a serious illness comes along, it so happens that the patient comes first, but there are people around him who have to, as it were, sacrifice their lives so that he can continue to live and function in some way. And today my guest, but above all your guest, is Paulina Wojtowicz.

Paulina Wójtowicz
Hi, a very warm welcome to you.

Monika Rachtan
Paulina You have written a book, Not My Alzheimer's, which is a moving book that exposes the reality of the patients, but above all of the people who care for these patients. Because it is the stories of the carers in your book that are portrayed. Where did the inspiration for such a difficult subject come from?

Paulina Wójtowicz
It all started with a report I did in Łódź. I managed to go to a centre that runs a Day Care Centre for Alzheimer's patients and there, apart from the patients, I had the opportunity to see the work of the staff. They were occupational therapists, physical therapists, who told me a little bit about what the situation of the family patients was like. Later on, these patients were picked up by the carers, so I also heard a little bit of conversations with the staff, and what emerged was a picture of people who are actually left out of this whole narrative about Alzheimer's disease, who have huge needs, and above all one huge need to be noticed. Because nobody really sees how this disease affects their lives.

Monika Rachtan
You are a young person. We are young people and to be confronted with an image like that in a day centre for me would be very emotional and I think very difficult. How did you, when you found yourself in such a place? You know, you come out of a beautiful white editorial office where everything is nice and suddenly you find yourself in a place where it's not so nice anymore, and even when it's nice, you go in and you see something that you can't see. What did you feel?

Paulina Wójtowicz
It's true, writing theoretically about Alzheimer's disease is very different from seeing it in person. I was, in inverted commas, comfortable anyway, because these were classes that had a script, that were run by specialists, professionals, wonderful people who, in addition to knowing everything about what they do, are also very friendly and emanated positive energy. And this energy was also shared by the patients who were there and, of course, by me. But it's actually, seeing in person all these things that are written about, which are these terms that you or I use, cognitive impairment, these kind of clever words that actually focus on specific activities, actually the lack of ability to do those activities. And it was indeed difficult. I had to ask the therapists about a lot of things too, because I either didn't understand them or couldn't interpret them. They also hinted at certain things, giving me a bit of a backstory, the history of these patients, because I could interpret their behaviour differently, knowing who they were or at what stage of their illness.

Paulina Wójtowicz
So it's a whole new experience.

Monika Rachtan
You said cognitive dysfunction is what it's called in theory. And what does that mean in practice? How did these people, How did you look at them, did they behave on a day-to-day basis? Because it seems to me that Alzheimer's is such a disease that we all know it is and generally we all know it affects older people, we know some theories. Again, I go back to that word theory, but we don't really realise what it entails so on a day-to-day basis. So looking at Monday morning when that person gets up and that carer with them has to get up and embrace that life.

Paulina Wójtowicz
This is, of course, how we stereotype Alzheimer's disease as a memory problem. That is, it's forgetfulness. This, of course, from a carer's perspective, accompanies both the patient and the family on a daily basis. However, there are plenty of other such dysfunctions that appear much earlier. What do they consist of? My characters list many such symptoms in the book and these include problems with such motor functions. E.g. Adam, one of the characters, talks about his wife having trouble zipping up her jacket and buttoning the buttons, tapping the pin on the terminal, with her knowing the sequence of numbers perfectly well. It's not that she forgot it, she just couldn't coordinate that brain-finger axis to type that pin. So these are the sorts of things that seem completely unconnected to Alzheimer's disease. But it can start with them too. These are problems with planning in general. The notion of time is also very often brought up by carers that the concept of time is impaired in some way. Patients are not able to estimate how much of this time is needed for specific activities.

Paulina Wójtowicz
They plan to do a lot of things for themselves and the stretch of time is very short. For example, I don't know, they go to the clinic 4 hours before their appointment because they're afraid they're going to be late, so they sort of can't plan until the end of that day. So that's kind of the phrase that comes up as well. Problems with planning and time management, a lot of that kind of stuff that doesn't have much to do with memory directly, but it does impinge on that kind of day-to-day functioning.

Monika Rachtan
Well, yes, but these disorders, I feel like you said, these are disorders that are still at this early stage of the disease, That is, when these things happen, we often pass just like that. Well that's the way it is. Yes, we don't notice these problems, we don't associate them with any disease that may later appear, but we know that when it comes to these later symptoms. They are the ones that don't allow you to live a normal life. They are such that the carer, who is the person with the illness, de facto has to manage that person's whole life. Because I have the impression that this person lives in a little fairy tale of their own, in a world of their own, and it has absolutely nothing to do with reality and the environment that surrounds them.

Paulina Wójtowicz
This is indeed the case. Yes. Of course, the deeper the creatures, the more serious these problems are, but in the sense that the consequences can be more serious and more difficult to. We use the word, of course, colloquially unscrew. Here, of course, we are talking about all those contracts, loans and credits that patients are able to conclude and sign even in the absence of a carer, because this is a transitional stage when we have the illusory impression that the patient is still able to function independently, living alone. We come sometimes many times during the day, but still in Consequence it is not enough, because we have to unscrew certain things later. These are things that kind of revolve around some history there, some experiences. From that long-term memory, you could say, because patients very often move a little bit in their mind to those times where they still had parents, where they had siblings, and they build themselves some kind of narrative. Trying to, I don't know, for example, leave, go out to their family home, which is, for example, in a completely different city. So like this world actually this fairy tale. Of course it has nothing to do with a fairy tale, but indeed this world is very much limited and very far from reality.

Monika Rachtan
And tell me Paulina, what does it look like in terms of carers' relationships? Well, because you talk about the fact that the patients, for example, go back in their memory to their childhood. So it's like the patient has a moment where they're transported back to that childhood, but then they come back with a kind of awareness that they're able to relate that to that carer, or therapist there, or whoever's spending time with them. Is it that it's kind of a guessing game for these carers?

Paulina Wójtowicz
These are rather conjectures, especially as it is not the case that the patient's carer transports himself to, say, the time of his childhood, and brackets off this memory and returns to this consciousness. These worlds intermingle. The sick person speaks to the carer, calling him by his mother's name. In a moment he is talking to him as if he knows it is his child, so it is all very mixed up and in fact the carer has a right to be confused in a way. But he understands that here, in this sick person's mind, there are just things going on that escape a little bit of that rational understanding as well.

Monika Rachtan
What a day looks like for such a patient in a day centre. When the carers return to their normal lives, they have to work too. What does it look like to care for these people there?

Paulina Wójtowicz
She is very much in order and that is very important, because this routine also brings some order precisely to the chaos in which they live. In their heads too. So the day begins with such a descending still, still patients a little bit of such work of their own. Some read the newspapers, some still remember, take a nap in the morning, because for them, for some it is also an effort. Just getting ready to go out, going out and transporting themselves to a new place, so they just need a rest. Then it's breakfast together, then the occupational therapy starts. This is the kind of work one-on-one or in groups with therapists, involving different mental exercises. These are puzzles, often such memory puzzles, jigsaw puzzles. If one is still able to concentrate on such exercises. There are various written exercises in the cards. I missed the word in written. This, of course, can also be done later by the group. The group mixes up a bit, some go to rehabilitation, some stay with the therapists. There is time for physical exercise. However, these exercises are of course very limited. It is more about spending time together, getting those basic limb muscles working, so to speak.

Paulina Wójtowicz
And and then we have lunch, which means we have a meal together again and usually some kind of art therapy activity and It might be music, It might be. It might be some. Some painting, it probably depends on the day. I actually went to a music, music class when I was in Łódź. It was just before Christmas, so the patients sang Christmas carols, and it was also an unusual experience, because what surprised me a lot was that the patients received cards with the lyrics of Christmas carols, and in fact out of this group of a dozen or so people, I could count on the fingers of one hand the number of people who used these cards.

Monika Rachtan
That is, they remembered.

Paulina Wójtowicz
They remembered the carols perfectly, some of them 4 5 stanzas each. And it was fascinating to watch how they enjoyed the music too. Anyway, music is mentioned as one such form of this art therapy, which has a very positive effect not only on patients with dementia, but also on other patients in general. And it also shows very strongly how these activities, things, memories that are very much fixed. Lyrics to songs, especially carols, Universal songs are remembered somewhere from childhood. How long do they stay in your head?

Monika Rachtan
You know what, I also associate that connection, because I don't know if I can reveal. But you're also a mum And like me and I, for example, to my daughter, when we had a crisis colic and all the crises that can happen with a small child, it was A Christmas Carol. It was the best song to calm her down. And you know, that's how I connect that childhood with that old age. Amazing. On the other hand, how would you evaluate such a day care home? How did you see it from the perspective of the centre from the inside? How were you there? How did you spend your time with these people? What would you say about such a place? Because I think that in the majority of our viewers, such a place does not have good associations.

Paulina Wójtowicz
I think this is the fault of this stereotype that is around residential care homes. DPSs are really associated with. With all sorts of sick and also needy people in different ways. This kind of centre, on the other hand, is something completely different. It is, one might say, such. Such a place where we can take care of the sick in safe, secure and professional conditions. You could say it's some form of respite care because, as you mentioned earlier, the carers can get on with their lives during this time. Some are still working professionally, because let's remind ourselves that such day care is still a time of such dementia, moderate, sometimes even mild cognitive impairment. Where does this therapy make the most sense? So, in fact, often the patients are still living independently and the carers are trying to work. They're trying to put their lives together somehow still. So it's actually very comfortable. These are very comfortable conditions to pursue these two pathways yet. We have the certainty that the patient is under the care of specialists. There are medical appointments there, there are medicines that the patient takes. Yes, there are cupboards for each patient, medicines prepared, so really everything is controlled and we can be, have that comfort in our mind that the patient is being looked after.

Paulina Wójtowicz
So I think here any fears that something will happen there, that this care is inappropriate, should be completely absent.

Monika Rachtan
We in Poland have such an easy way of judging people, and when something like this happens, like a serious illness that affects the whole family. People often say I would have done this, I would have done that differently. If I were this carer, I would give him up to a day care home because he doesn't want to take care of him. After all, he could give up his job and be with this mother, rather than give her away somewhere and not know what they are doing to her there. Have you also heard stories like this from carers, that people judge them for the fact that it was their families parents who ended up in such a place, for example?

Paulina Wójtowicz
I think not at the day care home stage, because that time there is treated, I think, more still as a form of treatment. So it's therapy, it's rehabilitation, it's things that are supposed to activate the patient, that are supposed to allow them to still maintain those cognitive abilities, that are supposed to slow down that progression of the disease. So here, not yet. On the other hand, what you're talking about comes up forcefully when you think about a care home, the classic kind. Is it DPS or is it ZOL? Maybe not yet, because ZOL is a place strongly associated with a hospital, but a care home, especially a commercial one, is. This is the kind of thing where these assessments and doubts and dilemmas always arise. Always, really, always.

Monika Rachtan
It's very interesting what we're talking about now, because it's sort of exposing these social attitudes that, well today, unfortunately in my opinion, are not supportive of such people. And I think also with the appeal to our viewers that when we're not in that person's shoes, we're not in that world, that we're a little bit not to judge that and that sometimes it's more supportive to have someone tell you that they're not going to tell you anything than they are to tell you. I would do it differently if I were you and what you're doing doesn't quite go with what I imagine in that situation.

Paulina Wójtowicz
Yes and yes. It seems to me that it's particularly painful when carers, and it happens a lot, hear such words, such assessments from other carers. Because if someone doesn't have that experience I'm not saying that's an excuse, but it's just ignorance in a way that justifies it. It excuses him that he really has no idea what he is talking about. But if someone knows perfectly well what they're talking about and they can still say I wouldn't or couldn't do that, well it seems to me that carers have a right to feel embittered. That they are not, they are not understood. One of my protagonists said these words once in a private conversation outside the book, that in fact a care home is where sick people end up. That is, her. By enrolling, caring in this way, it's actually doing it for her health, not to get rid of her, right? Her mum ends up there not because she's old, she ends up there because she's ill and that's where she can count on professional, round-the-clock medical care.

Paulina Wójtowicz
Who among us can actually, can guarantee this? There are not many medics here who can step into the skin of a carer and provide this professional support, and at some stage it is simply essential.

Monika Rachtan
Who are the people who work in a care home like this? Because I think you have to really have your nerves in check, to be very professional at what you do, in order to, sorry for the word, but endure in such a place, because it's not an easy job. Yes, it's a very, very demanding job. How did you observe?

Paulina Wójtowicz
I strictly have not been in a care home, so I can probably only answer based on some of my conversations.

Monika Rachtan
But I'm asking about this day care home. Because, you know, because I mean, when you're a physiotherapist, you can really choose a more enjoyable job or an occupational therapist than a day care home for people with dementia. Well, it's really a challenge.

Paulina Wójtowicz
It is, I think. But, of course, I have experience of this one day care centre, so it is perhaps difficult for me to generalise and speak about all the staff. However, as I stressed, I was exceptionally lucky to come across people who are passionate about this work. It was a group of people of different ages and, in fact, each and every one of these people did it with great dedication. And they are both individuals. There were occupational therapists who already have decades of experience in their work, but also completely young people who are just starting out somewhere. And it would seem that this is not the place for a young person who could just work anywhere in fact, but devotes their time to old, sick people. On the other hand, if it really is some kind of work with a vocation, you can see it, you can feel it at every step. Of course, there are patients who are more difficult and, if I may say so, in inverted commas, easier to work with. And I actually had the opportunity to observe a group in which there were quite a few such people, if you can call them that, comforting. The kind in whom you see your grandmother, your grandfather, whom you simply want to lift heavenward to help them.

Paulina Wójtowicz
So I think it is also easier to work with such people. Whereas there are some people who are more closed, more withdrawn, who also go through the disease differently. And it is a challenge to reach them. But without patience, without that vocation I just mentioned, I think it would also be very difficult.

Monika Rachtan
A very difficult job and a very huge sacrifice to. To be able to experience and accompany these people. Let's go back to the carers, because they are the protagonists of our episode today. That's right. This is a normal life. Not my illness. It must be terribly difficult. In general, how they talk about that moment when they found out that more often than not mummy daddy is ill and that in addition to the kind of care they've been providing for parents or providing well, you're going to have to sacrifice a piece of your life, even a big piece of your life, to take care of this parent, to somehow still allow them to function reasonably.

Paulina Wójtowicz
I feel that very rarely. It is such an obvious decision, a conscious decision, that from now on I will be that carer. More often than not, though, it's that life, family arrangements, different ones push us, a little bit, push us into this role. It is in families. Yes. I think you've probably had a similar experience from your own family, but also from observing families you know somewhere, that in every family there's some dominant person who pulls the family around a bit. She organises the holidays, she speaks up when nothing is happening. And it's often the case that she shoulders some responsibility for that family, to keep it together. And it seems to me that here, in the case of carers, something like this is happening, that the person who feels this greater responsibility to hold the family together, to take responsibility for the members shoulders this role. And this is such a difficult moment, because it seems to me that they don't fully realise what this entails. And for the family of others to get involved is very convenient.

Paulina Wójtowicz
And I don't mean that maliciously, because nobody has. Maybe nobody does. Not all relatives, not all families here have one. They think they want to withdraw or. Whether they don't want to help or cut themselves off from it at all. Of course there are some people like that, but, But. But I think in the minority. On the other hand, if one person shoulders this burden of care, well, in a way the roles of the others are already arranged.

Monika Rachtan
But it is mostly the case that it is the one person. From my observations, there are some families where the family members change. Let's say one sister takes care on Monday, the other on Tuesday. But does this leader actually always take on the role of carer.

Paulina Wójtowicz
It seems to me that the leader is always there. Even in one of the stories there is a theme of being on duty by the sick person. In the long term, however, this is not exactly a solution either. I already know from psychiatrists and neurologists that this variability is also not desirable in the case of illness. The deeper the dementia, the more important the routine I mentioned earlier. Because the more variables there are, the more it introduces confusion in the patient. So if a different person were to appear by his or her side every day, that's ultimately not exactly desirable either. Of course, if it is two or three constant people who appear in some sort of order, well, that is quite a comfortable situation. On the other hand, such variable, alternating duty. With such a deep dullness, they can cause too much confusion.

Monika Rachtan
You've already said that carers don't always realise at the beginning of that journey, when they become a carer, what the consequences of making that decision and shouldering that responsibility will be. Have they told you how their lives have changed, that before mum's illness, dad's illness was still like this and now it looks completely different? And how does it also affect their whole environment, their family, their psyche?

Paulina Wójtowicz
It's rarely the case that you can separate with such a thick line. What life was like before the diagnosis, what it was like after, Because the development of the disease, especially at this early stage, is not so dynamic, drastic. It's often months where day by day, week by week actually these changes progress and we just have to adapt to them. So we are slowly Not giving up some of our own activities. It's a bit like we give up the things that will do us the least harm. That is, we give up some leisure time first, our own passions. We simply have to choose our priorities. Then, of course, there's work, and last but not least, there's the family, which gets a kick out of it. Let's put it bluntly in this illness, and we have to choose to whom or what we devote this time. This professional work is often such a turning point, where I think that giving it up or in some way reducing the amount of work becomes necessary. There are people who retire, take early retirement if they can, or try to somehow change the mode of this work to simply accommodate care.

Paulina Wójtowicz
Nevertheless, it is very difficult, because care also costs money. There is no denying that. So this source of income is needed. So giving up these particular aspects of your life to have more time for your patient is difficult. And I think it's made more difficult by the fact that it's a process, rather than a specific, sort of single decision.

Monika Rachtan
When you look at it a little bit from the backstage, this whole situation, these carers of the sick, how do you assess the system? Is it working? Is what our healthcare system is giving us something that solves these people's problems? However, could you suggest to the Minister a list of things that would need to be improved to make life better for both the one and the other?

Paulina Wójtowicz
In fact, I don't have to propose it at all, because smarter people than me have done it long ago. And just with the emphasis on long ago, Because the Alzheimer's Coalition made up of associations that support patients and carers. It has long since prepared a plan. This is, of course, the outline of the Alzheimer's plan, this national Alzheimer's strategy, which organises many aspects related to the disease. And here we are talking about both diagnosis and treatment, support for patients with the disease, but also for carers. And in fact, these basic ideas, solutions, they have been prepared and waiting on the ministerial desk for many years, for 15 years. This year is already 15 years since this plan came to the ministry. Governments change and nothing really changes. I, too, periodically contact the ministry to ask what is happening and when we can actually expect some kind of official document. The work is ongoing. As you can guess, this answer comes mostly independently.

Monika Rachtan
From who sits in the ministry.

Paulina Wójtowicz
Yes, that's it, that's the permanent answer. So. So, there's no such legal mechanism that normalizes all these things, And there's quite a lot to be done actually. Some people say that there is work to be done on everything, but it's also not that, that all carers, all patients are in the same situation, as it is in health care in general. Everyone also has different experiences. We encounter doctors who are more committed, less committed, places where we can get things done more efficiently and places where we have to wait. The characters in my book also have very different experiences. Some cannot say a bad word about health care, others quite the opposite, so there is a lot to be done. I think it would be a good idea to start with the basics, and in fact that basics is diagnosis, and it may seem to be mainly about the sick, because it is about them being diagnosed with their illness. However, it has a very far-reaching impact and its consequences are also felt by carers, because the earlier we diagnose the disease, the greater the possibilities of curing it or, in fact, of stopping the development of the disease and of halting these changes for the patient.

Monika Rachtan
More time to set this life up.

Paulina Wójtowicz
For the carer, but also the longer we actually maintain this status quo, so to speak. That is to say, this state of cognitive impairment we actually have today, the longer the patient will be independent, and that already translates very simply into the life of the carer. If I have to choose between reaching out to my mum or my dad 2 3 times a day to see how he's doing and rearranging my whole life to live with him or bring my mum, dad or any other loved one to live with me. Well the choice is simple. I want to maintain that independence for as long as possible. In total from both sides. So I think this diagnosis could definitely be better. This, of course, mainly comes down to the role of primary care facilities, because that's where most of these initial diagnoses fall and should fall. Yes. On the other hand, you know what visits to family doctors are like; they are quick. I do not know what it looks like today, whether it is 10 or 15 minutes per patient. I think even officially, let's say it is 10 minutes.

Paulina Wójtowicz
It is often not enough for a healthy person who has actually only come for a referral or prescription. For what? Speaking of the most elderly person, well, because this is the group of most frequently diagnosed patients who require both an in-depth interview and a conversation. Such an approach too, well, because.

Monika Rachtan
In fact, you can only catch these symptoms by doing an in-depth interview, when you stop looking at the computer for a while and look at the person and take a little interest and go back to when the lady came to see us two years ago, three years ago, And today it is often the case that we don't actually know our family doctor, because it is someone who is on duty at the OPD today. These people are changing. To be able to do such a comparative interview is virtually impossible. As you said, time per patient is very limited. On the other hand, there is so much bureaucracy, doctors are overworked, because any doctor who wants to work in Poland can become a primary care doctor, so the situation is absolutely not conducive to sitting down and having a normal conversation.

Paulina Wójtowicz
True, we are a bit. We are bearing the cost of this comfort that is. To function in such an environment of flexibility, where we can sign up to any doctor we want. We also often use various private packages. We can sign up to any doctor that suits us in terms of hours and also location. But it always ends up being a doctor that neither we know nor he knows us. But I would not like to hit out at doctors here either, because the vast majority of doctors would really like to devote all their time to a patient, so it is not really their fault that they do not have the time. Here, in the case of these tests, which are performed on patients with suspected cognitive disorders. It's also simpler in that these tests can just as easily be done by another healthcare professional. It could be a nurse, it could be another qualified person who is trained and can do it before a visit, after a visit, during a visit where the doctor already has another patient. And this test doesn't take long, because it's just 15 20 minutes that you can spend.

Paulina Wójtowicz
I know of examples of establishments that have organised it in a similar way, and it kind of shows that it can be done, you just have to manage it in the right way and introduce some kind of in-house screening, because that's what you have to call it.

Monika Rachtan
This is where the initiative of the head of primary care is important. I think it would be possible to develop public health students, we educate so many of them, and in fact these are people who often do not find a job in the health sector, but go somewhere outside health. And in such a poset such an administrative worker who de facto does this interview, or these examinations, or in many other conditions, as it relates to, for example, type two diabetes, or the treatment of obesity, or various other diseases that can be de facto identified by just interviewing the patient. That would be much needed. But let's go back to the carers for a minute. What do they regret most? When you talk to them, you have talked to them about their life, about their family, about their loved ones, When they are already in that situation that they know that in a minute this home. They're going to turn care into a permanent day home. When they look at this situation, what do they regret most?

Paulina Wójtowicz
A very difficult question, because these, these places, these pieces of life in which. In which this grief appears, there are quite a lot. I don't know if regret in general. It is an adequate term, because what they grieve the most is what they have absolutely no control over. That is, really the loss of that loved one, their identity, their relationship with them. The loss of their own life. Of course, further down the line, which they have had to completely change and rearrange for the patient. There is also a lot of grief about the fact that they were shown to be inadequate in their own eyes as carers. So these seem to be the kind of grievances that are easily undermined from a rational point of view. Whereas they boil down to very strong, very difficult and extreme emotions that are difficult to contain. Because if we are alone in this caregiving, with less or more family support, often less. Many carers are completely alone in this care. This is difficult. It's also hard to let that rational voice in yourself. These emotions are strong and one can actually. To feel sorry for both the patient and oneself in all this.

Paulina Wójtowicz
The only question is precisely do we have an impact? Have we influenced anything? No well, someone threw us into that role. Someone threw these diseases into our lives without asking us. And we were actually forced. Somehow to find ourselves in this and. And it's a bit like this care, which, let's also say it out loud, often extends over several or a dozen years, is such a process of understanding this new situation, finding ourselves, finding our own identity, finding ourselves in this new relationship with a person we seem to have known all our lives, but who suddenly becomes a complete stranger to us.

Monika Rachtan
This is such a difficult situation that I think it is hard for us to imagine the person's emotions at all. And what happens when our mentee passes away? Have you been in contact with one. With such a carer who has already said goodbye to his mentee and has de facto regained his normal life? But has he or she been able to get on with it? Is there then a huge sense of loss there, that everything I was doing led to that anyway.

Paulina Wójtowicz
This disease is difficult in that. That this inevitability of its end and the inevitability of the changes that await us is transient. And we are already aware of this while observing the patient and caring for them. So you could say that, in a sense, it's such a slow farewell to someone's life, so that's sort of one side of that coin. The other. To answer the question specifically, it is indeed the case that there is a rift. Of course, it depends a lot on such adaptive skills. Some people find it easier to come back to life, as in any bereavement. Some find it easier to get back to normal life, some find it more difficult. But it really is the case, and this also shines through in the stories of some of the characters, that they find themselves in such a bizarre situation at a certain point in their lives, where it seems to them that finally all their problems are behind them. And suddenly they don't know what to do with their life, because they have been living the role of carer for several, several years. Being responsible for this other person, organising life around them and suddenly they don't know what to do with that day, what to do with their life.

Paulina Wójtowicz
They need to find their new and not only occupation, but also some such reference in life. If it is still a young person who, say. Is economically active, they can arrange this path for themselves in different ways. I think it's easier in a way. But if it's an older person, because their spouse or, or parent was ill, well, I think it's a bit of a challenge. One of the protagonists, Andrew by the way, talks about how after his father died, for whom he retired, so that this care would be easier, also so that he could devote all his time to his father. After his death, he started to look for, you could say, substitute methods and he transferred his needs to be a carer to his neighbour, to an elderly neighbour who needed some support. So I think there are a lot of mechanisms here, and the carers too, after this time of caring, can finally take care of themselves. And it is difficult and often requires professional support as well.

Monika Rachtan
I look at the cover of your book and I see a beautiful woman on it. You can see the wrinkles on her face, you can see those years of life. She still retains her charm and beauty. And I look at her. I call her Helena and I say Helena, who were you? Did you have that when you talked to these people, you wanted to ask who they were? What stories in their lives had they lived through, because you were looking at them in illness, some image of people, of human beings that the illness had created? But that they really could have been beautiful people? before the illness. In illness they could have been beautiful too, but. But they could do beautiful things. And that you were so keen to dig in there and find out who this Helena was.

Paulina Wójtowicz
It wasn't even so much that I wanted to, but that I did, that, and that was the starting point of really every conversation. Because I had this sense that for a carer to also open up to me and tell me very intimate details from their life is such an important piece of that, of that story. How he remembers his life, his life, his relationship with the sick person before his illness and. And I'll tell you, it was also so unusual for me that every single person I asked about it who was mum, who was dad before the illness? How do you recall your childhood? How do you recall those relationships? Every single question caused surprise because they didn't remember it anymore. They realised that no one was asking them about it and they weren't asking themselves about who the patient was before the illness either. They're so surrounded by it already, this Alzheimer's. So it made me curious, of course, because it's very consistent with the sick person's behaviour too. One of the protagonists, who also runs a foundation that supports carers, told me that it's very often the case that these behaviours that are strange, to us, unusual, annoying, often in the patients are also directly translated into the patients' lives before the disease.

Paulina Wójtowicz
I'll give you an example that somehow stuck in my mind very strongly about one daughter who complained that her mum is constantly doing some sort of tidying up, constantly arranging things, constantly rearranging things, constantly taking things, even napkins from the table and stacking them up, rearranging them And as if being next to it, at a certain point it just becomes annoying and the question is finally asked why are you doing it? She doesn't know why she's doing it. And then when we started, we started getting into these stories. It turned out that this mum was an accountant and she had been all her life This was still the days without computers, of course. She spent her whole life sorting these files, these documents, arranging them, cataloguing them. And all of a sudden this behaviour, the annoying behaviour of mum took on a completely different meaning. I think that this understanding also of these mechanisms that govern this disease is, in a way, a facilitation for carers.

Monika Rachtan
It frees up some, some.

Paulina Wójtowicz
It frees up that it's not meaningless, because at first glance it seems meaningless, but it has a point of connection somewhere. So this pre-sickness story is important, and talking about it too is important for the reason that it simply humanises the sick person. This illness dehumanises. And if we reach out to these memories, we simply remember the person we are actually sacrificing for.

Monika Rachtan
It's very important to be reminded of this, but also for society to realise that this very accountant, this Helena of mine from the cover of your book, was once simply free of all these symptoms and lived a normal life. Tell me, where is your book? Because I was lucky enough to get it from you as a gift. But where can our audience get your book? Because it's really worth reading these stories.

Paulina Wójtowicz
The book is in wide distribution. It can be found in bookstores both stationary and online, so I think there is no problem in seeing it or ordering it.

Monika Rachtan
Paulina I would very much like to thank you for taking on this difficult topic, because we medical journalists write about things that people don't necessarily want to read about and don't necessarily want to hear about, but they are important topics that need to reach the public. So thank you very much for your work. I encourage you to make a trip to a bookshop, whether online or in a stationary store just to get a book. Paulina thank you very much for our conversation.

Paulina Wójtowicz
Thank you also.

Monika Rachtan
And I remind you that once again. Thank you so much for our conversation, and I remind you that it's worth subscribing to the Patient First channel, because there are always very interesting conversations happening here with us. I also invite you to follow us on other social media. We are on Instagram, on Facebook. This was the programme Patient First. My name is Monika Rachtan and thank you very much for your attention.