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Dementia develops insidiously. This is a serious change for the sick person and a real challenge for the caregiver. In order to properly approach the subject of this ailment, it is necessary to understand its mechanism of action. We talk to Karolina Jurga, a psychologist, neuropsychologist and psychotherapist, author of the book "The perfect caregiver does not exist" and the founder of the blog "Meet dementia" about the hardships of carers of people with dementia.
Red. Marcelina Dzięciołowska: Diagnosis: dementia. In such a situation, does the carer of the sick person feel remorse for not recognizing the symptoms earlier?
Karolina Jurga:I very often come across the fact that caregivers who receive such a diagnosis for their loved one, or are in the process of a diagnostic process, begin to feel guilty. They wonder if they could actually have recognized these symptoms earlier.
Was it really possible to notice them before the diagnosis?
It is very difficult. Once we know what is happening to our loved ones, it is much easier to put together the initial symptoms like a puzzle. When the caregivers look back, they remember that there were times when, for example, my mother acted strangely, but there were always many explanations for this.
The sick person can send warning signals, but usually we blame it on the passage of years, right?
Yes. We have such a way of thinking that in old age we forget that we are lazy, that we don't feel like it, that we neglect hygiene, but it is not so. It is not a natural aging process.
So what does the natural aging process look like?
The natural aging process consists primarily in slowing down the processing of information, slowing down the functioning, more time is needed to recall certain elements, to put them together, to extract them from memory. In general, the natural and "he althy" aging process is such that it all happens more slowly. A he althy person will remember what they have forgotten. On the other hand, a person with dementia will not remember things such as a forgotten name, date of a doctor's appointment, etc.
Can you say that the course of the disease process is tricky?
The onset of the disease is very sneaky, slow, and very difficult to spot, but caregivers do feel guilty that if they had noticed these signals earlier, it might have been prevented, but very difficult to spot and prevented will not.
Why?
Because these are the nuances where a person who begins the disease process may, for example, while on a walk say: “Oh, look! They built some new building here, "to which the caretaker replies," But this building has been here for twenty years, "and the demented person replies," Indeed, I must have made a mistake. "
So there is quite a logical and sensible explanation, because no one of us happens to forget something or not notice something.
These are the moments that are often difficult to catch, because indeed time passes very quickly and even we - young people forget about the meeting, mistake the dates, etc. That's why I tell caregivers of people with dementia that once they know the diagnosis, when this puzzle is put together, right now you can go back in time and remember such moments. A few years ago, when the disease process was beginning, it was not possible to recognize the symptoms and check them.
Let's stop at these little signals. What should worry you?
I make people very sensitive to watching their relatives. Such small signals, when something unusual happens only once or twice - for example, when a loved one cannot remember a word he has often used so far, he will forget the number of his child's apartment, who has lived there for several years. These are the moments when a previously well-functioning person begins to have problems with orientation in a known area - he will mistake the way home, forget the names of his neighbors. There are many examples of this. It is worth being alert and not controlling, but observing.
What other symptoms are alarming?
There are times when, for example, a person returns from a butter shop every day. Of course, you can say that there was a promotion and it's nice that this person bought them, but patients who start these processes do "strange", unusual and surprising things. When a loved one asks, "But what are you doing", the person with the onset of dementia will most often give an explanation, but may be confused or upset that we want to tell them something or make them stupid - this is often a defensive response.
So the explanations you would hear from someone in the early stages of dementia are "automatic"?
These people look for explanations on a subconscious level, not understanding why they did it, and quit firstthe explanation that comes to their mind. For the person on the side, they are meaningful and logical - as in the case of a butter promotion. Another example is when someone regularly checks that the door is closed. And another explanation: “And you know, so many break-ins and thefts lately. I want to be calm. " The explanation may make sense, but the person may be grasping the doorknob because they will not remember that they have closed the door. An example is also feeding the pet, even though he ate half an hour ago, or wiping the glasses once again, although they are clean.
And when the sick person leaves the house, leaving the soup on the gas stove?
These are advanced cases, but on the other hand - to whom hasn't it happened? I myself recently had a situation where I had an online meeting, in front of which I put potatoes into cooking. During the conversation, I got so caught up in it that I forgot about them. Does this mean I have dementia? Hard to say. The first initial symptoms are difficult to spot because there is a logical and sensible explanation of what is happening.
We know so little about dementia and Alzheimer's disease. When we ask someone about Alzheimer's disease, we usually hear in response that it is forgotten. How does the functioning of a person with dementia change, except for the feeling of being lost?
This is a symptom, and it's true - the feeling of being lost is tremendous. This person feels that something is happening to them, but does not understand exactly what it is. Very often, in the early stages of the disease, patients report that they are "confused", cannot explain what they mean, say that they are confused, feel stupid, that they have to force their mind to work. These are feelings that are hard to define, because when the pressure is low and it rains, most of us will also feel this way.
What can be the cause of a feeling of confusion in a person with dementia?
In these people there is such an unclear change of situation. At the level of feelings, there are "spots" and "holes" in the head, which is why these people are so lost. There is also an unconscious fear of what is happening, what will happen and what it will lead to.
It's common for older people to not want to be a "burden" and therefore don't communicate that something is wrong, right?
These people don't talk about it a lot, and it's dramatic. They hide it and mask it, because they don't understand it themselves, they are afraid. We live in such a feeling that if something happens to our head, it means that we are abnormal and no one wants to be perceived as a freak in old age. That is why such people happenthey distance themselves, do not take part in family meetings, so as not to compromise themselves and not confront what they are experiencing. Additionally, what you mentioned - the elderly do not want to be a "burden". There is a perception that children have their troubles anyway, they are busy and I have to contribute - it's better to say that everything is fine. Unfortunately, the longer the unusual difficulties are masked, the more difficult it will be for the children to deal with the situation later, because the diagnosis can fall like a bolt from the blue.
In addition to the accompanying symptoms of dementia, depressive disorders may also appear in this situation?
Yes, we very often overlook this aspect when we think of dementia as purely brain damage. Yes, in dementia, a person experiences brain damage or atrophy for a variety of reasons, but in the dementia process there are behavioral and psychiatric disorders. Dementia is not only a brain atrophy that leads to a person's lack of independence, it is also an emotional area that manifests itself in many behaviors of a sick person that are difficult to bear for the caregiver.
Is it because few people know enough about dementia?
The guardian not only has to confront the limitations of the knowledge he has, he does not know what it involves, but also has to face his ability to empathize with the situation of another person who enters a completely different world. It is the caregiver who has to deal with the whole emotional state of the sick person. In the later stage of dementia, the sick person enters his world - completely incomprehensible to the environment, abstract, and often frightening.
Does such a person create a new world?
It is very often the "past" world. Such a person goes back to the period when they were several or a dozen years old. It is difficult to accept that the mental or spiritual state of such a person reverts to childhood.
Does the person with dementia become a "baby"?
No, such a person is not childish. This should not be combined. It is important to start looking at the disease and your relatives' behavior in conjunction with what happened with the person who was sick during childhood.
In the course of dementia, can emotions, traumas and childhood situations return to the sick person?
People who experienced various states and fears in their childhood created constructs in their heads, not because they saw phantoms or ghosts, but because their still undeveloped psyche gave them some pictures. This is the case with children. An elderly person with dementia may be going through the conditions they experienced in childhood, itthere may also be unresolved internal conflicts and childhood fears. Everything happens on an unconscious level.
So this is how one can explain the delusions of a person with dementia?
Exactly. So it is not about comparing a sick person to a child. In dementia, various emotional states from early childhood “flow out”. The period of the first 2-3 years of life is of great importance for our development. Then patterns are created, the constructive and destructive ones, according to which we grow up and build various coping strategies as children and then adults.
The basis of the therapy is a return to childhood - this is where the greatest traumas reside, the effects of which may hinder the life of an adult, right?
Of course. When we go to therapy, we often experience such "glare" when, for example, it turns out that we already know why my relationships are so destructive. Usually it is a matter of incorrect relationship with the parent, lack of bondage, lack of he althy attachment, harm from childhood, etc.
I don't remember much from my childhood. Is the brain of an elderly person able to recall this period?
Yes, he can come back to that period, but not because he remembers - it's all happening on an unconscious level. Our psyche collects enormous resources in the subconscious. Everything happens there - those unworked situations.
If in childhood there was a problem in the relationship with the mother - for example, the mother did not offer enough time or closeness to her child, if she did not notice him crying, if she chided them for crying, was not sensitive to the child's needs, then in in the future, it will have an impact on interpersonal or professional contacts of an adult.
The person with dementia will not consciously come back to these memories, it will all be played out on an unconscious level. Unresolved conflicts and fears from the early childhood period are manifested in the patient in this way.
What behaviors consistent with childhood can be observed in the sick person?
It is often a scream or cry for no apparent reason. In such a situation, we do not know if it is caused by the pain, because the sick person will not be able to locate and show the source of the pain.
So where are you crying from?
Such a person may cry because, for example, he wants to see his mother. Subconsciousness and fears related to early childhood, also the lack of a bond with my mother will "flow out", so such a person will cry and shout: "I want to be with my mother".
The reflexive response in this case is to rationalize, for example, "But your mom has been dead for twenty years."
Yes, this is the most common reply from the caregiver. Such a reaction is understandable, because we usually react through logic.
But is it correct?
No. It just isn't correct. Here we have to completely get rid of logical thinking. It is important for the caregiver to try to enter the current world of the sick person, to think where they might be mentally at this point. - a person with dementia may just be experiencing images from their early childhood.
This period is said to be the second infancy.
Yes, but absolutely not to infantilize the elderly, just to relate to the life cycle. Such a person needs closeness or a hug that gives him a sense of security. It is similar with an infant - when he cries, he reports his need that he cannot tell. Then mom has to guess what's going on. Likewise, in the relationship between the person with dementia and the caregiver. It is the caregiver who has to guess what the sick person needs, but not by logic, but by trying to think what this particular person may have experienced in childhood. It may be that the behavior that he sees now is a reflection of the state of the child's psyche, the unmet needs of the early childhood - which is why we are talking about the second infancy. This is very difficult to explain, and even harder to accept when it concerns our mom or dad.
How to react in such a situation?
Then there is no point in translating and rationalizing. You just have to "step into a role and play it". You can take such a person by the hand and say: “Mommy will be coming soon, she only went to the store. You are safe, I am with you. " This should be said in a calm, low voice slowly.
Some people may find it difficult to "lie" to a loved one.
Even if it seems to be a lie, it is only in the caregiver's world, which is the real world. But in the world of a sick person, it is not a lie - it is an answer to what can happen in the sick person's restless psyche, and so it can bring relief - just like the psyche of a child when he misses his mum. It is this paradox that caregivers feel guilty about lying. I emphasize that this cannot be counted as a scam. This is how they help their loved ones by reacting.
So, without this knowledge, caregivers may unknowingly cause more harm to the sick person?
Yes. Denial can cause psychological pain, agitation, and aggression. Thisit is clear that the caregivers want the best for their loved one. They often don't know how to react. They want to explain so much, convince them, so that they can lead the sick person out of the mistake at all costs, so that this situation does not happen again. Unfortunately, no matter how much we would like to explain, practice, "stick" our truth into our heads, it still does not make sense, because a sick person will not accept it. For her, the truth is what she currently sees, hears and experiences - even if it was something cosmic for us. For this it takes "tons" of patience to rise to the heights.
So what does a dementia carer face?
Taking care of someone who is in their own incomprehensible world every day, it is really easy to lose patience, which makes it difficult to hug or take the hand. In addition, there are other, completely normal feelings in such a situation, such as disgust, disgust, hatred. Not because the guardian is a bad person, but because it is the result of fatigue, overstrain.
Where is the guardian in all of this?
In long-term care for someone with dementia, you can experience both mental and physical exhaustion. I often explain to caregivers so that they remember that their reluctance towards the sick person, the will to let them go away, are just thoughts that usually result from exhaustion. They do not prove that someone is a bad person. The reality is that usually only one person cares for someone with dementia, so this fatigue and resentment are just normal and understandable. It can be very difficult to find patience to enter the world of a sick person, but it can be learned. Sometimes you have to be able to let go of all these "I have to". Maybe the world won't collapse if we don't do something. Maybe it's just our belief in ourselves that we have to be so perfect that if I don't do something, I won't be a good guardian - son, daughter, husband, wife.
What other tips could I do for my dementia carer?
To facilitate entering the world of a sick person, talk to him calmly, in a low voice.
Why?
Because it is more understandable. The person with dementia experiences brain damage and may not understand what we say. It is easier for such a person to accept and take away a calm, low voice. So when the guardian is upset, emotions will necessarily make the voice higher. It is important to slow down your speaking pace and tone. Thanks to this procedure, the caregiver can also calm down his emotions. It is therefore a benefit for both parties.
What else cando?
Speak in front of the sick person so that they can see the face and facial expressions - then it is easier to understand what we want to convey. Quite the opposite is true, when a sick person watches TV, they often do not understand what is happening. She may have the impression that the people who are "there" are actually sitting in the room with her. Abstract thinking responsible for analyzing the situation is disturbed - the sick person does not know that it is being recorded in the studio. He may even ask, “Where are the people who spoke here a moment ago, have already left? So without a word? ”.
In such a situation you have to play this role?
Yes, exactly. You have to accept it, enter the world of the sick person, their current experiences and let them think about it. Do not disprove, confront and explain, because for a demented person what he or she is experiencing at a given moment is real. It is important not to be afraid that we will reassure our loved ones in their wrong thinking, that they will remember and repeat "nonsense". In 15 minutes, a sick brain can make a completely different story.
The caregiver should understand that the dementia process is an irreversible process. The faster understanding and acceptance of this situation means more peace for both the patient and the caregiver.
Yes, but we as people really want to prove our point, we want it to be our way. In a he althy world, it is difficult to agree to another person's right, and in the case of a person with dementia, you can say that he is always right, even if what he says, he sees is totally abstract to us. Accepting it allows the guardian to relax, let go. The exceptions are situations that directly threaten the life or he alth of the sick person, then we react decisively, caring for the safety of the loved one.
However, it may not be feasible for everyone.
So let's ask ourselves what is the purpose of our actions. Sometimes it may turn out that our action is not needed by a sick person but ourselves, because it reduces the feeling of guilt, makes us feel better people, because "we do something", that we are more efficient. The point is to be he althier in this care, to have as much peace as possible. It is the guardian who needs more care and help. The sick person loses consciousness, is not aware of what he is doing, what he is saying and what is happening. It can be said that it is lucky that this person does not know it because he suffers less, but the family experiences the drama because it processes it on a rational level.
You also mentioned that a sick person can be disgusting. Why?
People with dementia often eat with their hands. It's hardIt is assumed that, for example, Dad, who used to be a support, the head of the family, served with advice, now eats with his hands. This can be disgusting. This could be another reference to early childhood, nobody does it out of spite. The sick brain is unable to use what we he althy call a fork and knife, and perhaps it needs stimulation and organoleptically "explores" the world. You just have to accept it, accept it.
What other advice would you give your guardian?
To write down on a piece of paper all the good things related to the sick person. It's also a good idea to write down any positive things that the guardian does to strengthen the sentences. This is very important, because when the worst time comes, it's hard to deal with, it can be a very emotional burden. At such a moment, you can pick up written pieces of paper and read all the good things, read about the good moments that happen in this care, and read about your strengths. It is really mentally empowering, although it may seem trivial.
How does this work on the psyche?
This can help balance your thinking about yourself as a "bad" person, not good enough. Often the caregivers have not very good thoughts about themselves, especially when they scream, struggle to defend themselves or take away all their anger in total helplessness. I always say to caregivers: "You are a good person, no matter what thoughts come to your head." These cards with good things and sentences are to help the most when we feel totally drained by the care.
Hence the title of your book: "The Perfect Guardian Does Not Exist"?
Yes. I wanted to convey in it that something will go wrong, that if at some point the guardian lets go, he is still a good person, that there is no ideal guardian. And people want to be perfect, correct, they don't want to fail, they want to be 100 percent in everything. It should be remembered that caregivers often have their job, their family, their problems, not only taking care of a loved one.
Before we start caring for a sick person, we have such an idea that we will take care of that person, that we will support them, hold their hands, cook their favorite dishes. This is thinking about what this care should be like. However, there comes a moment of confronting reality and it turns out that our imaginations have gone far away. It may turn out that there is a lack of strength and willingness to support it, to cook and to indulge. Our image of ourselves often in such a situation will simply crumble and it is difficult to deal with it, because it turns out that afterwe just can't do it.
The book provides many tips on what to do and say in various everyday situations that caregivers face. It is a guide that shows why a sick person behaves in a given way. It helps to understand the reactions of the sick person. The book can be viewed at random and each situation find something for a given moment of care. It is full of my over fourteen years of experience and real stories of people I met, from whom you can draw solutions and inspiration. It brightens up what is incomprehensible, gives hope and encouragement.
In many spheres of life, we build a perfect image for ourselves - in partnership, in a new job. Should caregivers therefore benefit from outside support? Where to get this help?
First of all, you have to want this help. People are afraid to ask for help, they want to avoid experiencing the feeling of failure. Caregivers usually repeat that they have to deal with the fact that they have to be with their loved one for the rest of their lives. People think that using the help of centers, day homes or nursing homes is just their failure in life, because they have not lived up to the image of being the perfect caregiver.
And they keep getting tired.
The important question is what is right at the moment. In some situations, the person with dementia is so advanced that it doesn't matter where you are. The most important thing then is relationship, bond and closeness, which you can certainly offer more when you are calm, relaxed and refreshed.
I remember the story of a woman who gave her whole life to her mother with dementia. She organized doctors' visits, bought a second apartment to be close. This woman was very burdened and tormented because she still had a private and professional life. She could not cope, she did not have the strength to make small gestures, because she was focused too much on organizing care. Finally, the moment came that she decided to go to a nursing home. Only then did she breathe, saw that it was better that way. She finally had the time and the desire to take her mother for a walk, hug her, spend a good time with her and nurture the mother-daughter relationship. She also saw that her mother was already in her world and she didn't care where she was. This relief is very important.
However, there are times when a nursing home is not an option for financial reasons. What to do then?
In such a situation, it is worth organizing a "replacement" for at least one hour a week. It is very important to be aware that I will have this one hour a week all to myself. It also gives strength.It is important to calmly look at the situation, who could be supportive at least for a moment.
What about psychological help?
If it is possible to contact a psychologist, definitely. In a pandemic situation, online consultations are also perfect, during which the guardian receives a package of tips, begins to understand what causes certain behaviors, and then it is simply much easier.
You can also use the knowledge contained in my blog poznajdemencja.pl. When we get to know the mechanisms of the disease, we have a chance to better understand the sick person, but also ourselves. This can relieve the psyche of the rush of thoughts.
How do you deal with the “loss” of a loved one with dementia while they are still alive? What it was like in the past will not come back.
Caregivers have to deal with this mourning permanently. This applies to each subsequent loss of competence, skills, and behavior in the course of dementia. For example, when a mother stops getting to know her daughter, it's hard to come to terms with it. Most often there is denial at the beginning. Later, anger, an outburst of unpleasant emotions may appear, also towards the loved one. Subsequently, depressive states may occur, and finally, coming to terms with the situation and coping with the new reality. This is the normal course of the "mourning" process. It is worth giving yourself space for it to look like this. You have to be aware that these stages will occur and allow yourself to have different emotional states. Do not be afraid of them, do not blame yourself, do not blame yourself that sometimes we do not behave as we would like.
You have designed special goggles that can help the sick person enter the world, please tell us about them.
It is my mission to bring the caregivers closer to the world of the sick person. I have met thousands of people with dementia and based on various experiences and interviews, I have created goggles that can help them experience possible limitations that a sick person may face. The task of the goggles was to distort the image, in addition, I also applied a load on the legs and arms, because patients often experience tingling in the limbs. Sometimes they want to grab a glass and can't, but not because they don't want to, but because they have a disturbed sense of depth and distance. It is important for caregivers to understand that these "strange" behaviors are not due to malice or laziness. These goggles were supposed to show the world of limitations of a person with dementia. Nearly 400 caregivers benefited from this project and the reactions exceeded all expectations. Such an experience evokes great empathy and is much easier to understandsick.
Thank you for the interview.
Expert
Karolina Jurga - psychologist, neuropsychologist, psychotherapistSince 2006, he has been dealing with the diagnosis of dementia syndromes and supporting families through consultations, courses and lectures. The author of the book "The ideal caregiver does not exist", the founder of the blog poznaj demencja.pl, YouTube channel Karolina Jurga - learn about dementia. The creator of numerous social projects in the field of prevention of memory disorders. He also appears as a guest on TV and radio shows.