PODCAST | CARING FOR THE CAREGIVER Hello everyone! Today, we want to talk to you a little bit about taking care of the Caregiver. As you know, taking care of a Person with Dementia is an extremely complex process, involved in numerous challenges, challenges that are not only directly related to the practical care of the Person with Dementia and everything that is inherent to it, but also issues that relate to the family dynamics, underlying changes, as well as in relation to issues related to the caregiver himself, such as his well-being, perception of quality of life and regulation of emotions, which are so important for the care of the Person with Dementia to be the better possible. The act of caring, being complex and multidimensional, can result in a great emotional impact, in the loss of identity, concern and uncertainty in the face of the diagnosis of dementia. In this sense, there is a range of emotional reactions and normal feelings that are triggered by the care process. We all have different ways of dealing with what we feel and what happens to us. You may think that what you feel is unacceptable and that you shouldn't feel sadness, anger and revolt, fear or even shame, but all of this is perfectly acceptable in the face of changes and the challenge that is Dementia. It is a process that implies losses and constant adjustments, and the process of adapting to something new is always demanding since the circumstances we knew until then change and it is necessary that we somehow rebuild ourselves. The loss of abilities of the person we care for also has an impact on us, either because in some way the independence and autonomy of the person tends to change, or because of the underlying emotional issue - it is difficult for us to perceive the losses of those we love. Very often, caregivers of People with Dementia feel overwhelmed, distressed, sad, tired. How many times has this happened to you? If we stop for a moment to think and reflect on this point, these feelings are perfectly understandable, given the responsibility and demands of caring for others. Caregivers can often forget about themselves, failing to look at themselves and their needs, and live for the person they care for. If so, how can caregivers feel good, if so often the time they have for themselves is forgotten, put in the background or even ceases to exist? Caring for a person with dementia brings with it fear. The fear of not doing the best for the family member, the fear of not providing the best care, the fear of failing, the fear of what the future may hold. Often, these less pleasant emotions and behaviors can also be associated with a feeling of guilt. Guilt is often present, either for the way they feel they behaved in the past with their family member, or for not understanding many of the signs and symptoms associated with dementia, for losing their patience on certain occasions, for at certain times they wish they did not have the responsibility of caring for and considering institutionalizing their relative, because they think and need to have time to be with themselves or with friends, among other reasons, which end up having an impact on the way caregivers feel and how they make decisions. Caring for someone can also be associated with feeling lonely, but feeling lonely doesn't mean you're lonely. There are several reasons that can contribute to this feeling - either because of a change in roles, because they left their job, because they do not have family support or because the person with whom they used to share what they lived and felt is the Person with Dementia. Caring for a person with Dementia implies facing a path of changes and small losses that happen over time, not only on a physical level but also on an emotional and relational level - greater difficulties in day-to-day tasks, such as food, dressing, preparing meals, among others, but also difficulties in terms of verbal communication, reasoning, social skills and sometimes even personality, which occur in a gradual and progressive way, and make them more "present" and visible the perception of these small losses by Caregivers, who experience an anticipatory grieving process, while their family member is still alive. If it is essential that Caregivers prepare for changes in life, it is also important to think about the next moment, when the person with Dementia they care for will no longer be here. For a long time, you will assume and play the role of caregiver, but if this role brought with it many challenges, the reverse will too. Grief is, most of the time, a natural process associated with the loss of something or someone, which brings with it different emotional, psychological and physical reactions. In addition, the caregiver may have left his job, the life he knew before the dementia will also have changed and, therefore, leaving his role of caregiver and at the same time dealing with the death of his family member will also be a challenging phase. . It is also common to experience manifestations of grief that may seem somewhat contradictory - on the one hand shock, despair, sadness and at another moment relief and calm. What is important to emphasize is that all this is a profoundly idiosyncratic, variable, but natural process. Although dementia brings with it a huge set of challenges, in fact, this does not mean that caregivers cannot feel positive emotions and feelings, and that they maintain the ability to laugh. Taking care of someone can also bring pleasant feelings, such as the gratification of taking care of someone who needs you, love, joy, feeling useful. Caring is in fact an ambivalent process and it is common to have contradictory feelings: being able to love and not like at the same time, wanting the person to stay at home, but on the other hand wanting to institutionalize, feeling anger, but on the other hand compassion. There is no correct way to deal with emotions, but it is important to recognize how you feel and what you feel, as well as to have some understanding of these dimensions - why this happens and why you feel that way. Remember, the well-being of the Person with Dementia depends directly on their well-being, and it is very important to preserve their own psychological, emotional and physical resources. In this act of caring, he very often ends up leaving his needs for rest, leisure and alone time aside, in the background. However, it is essential to find ways to take care of yourself! The question you will be asking at this moment will certainly be: but how? How, if I'm overwhelmed with responsibilities? How, if all the time I have is spent with the Person with Dementia? How, if there are so many tasks? Well, there are no magic formulas or strategies to take care of yourself, but there are some guidelines that can help you improve your well-being and your perception of quality of life: - First of all, we would say that the first essential aspect is to recognize what you feel and how you feel and keep in mind that one day you may feel more hopeless, feel more sad and distressed (more unpleasant feelings and emotions), and that in a at another time, more pleasant feelings may prevail. - Taking care of yourself also means taking care of your physical health, being aware of your diet, physical symptoms and signs (such as increased blood pressure, gastrointestinal problems, sleep-related problems, etc.), staying physically active, through sports, for example, and, very importantly, finding moments to relax. - It is absolutely necessary, both for you and for the Person with Dementia, that there are times when you are away from providing care, so that you can rest, sleep, do something that you really enjoy and that is good for you. This can mean leaving the house once a week, 1 hour a day, being alone or with people who are significant to you. It does not matter how many times or how long you take each "break", but what you can do on a day- to-day basis, with the support network you can find. Sometimes finding a way to meet your own needs takes effort, organization and creativity, but it is possible, and it is essential to do so! - Give yourself a gift. Some people can buy something they like and that is useful to them, or a new experience, for example, watching a show, enjoying dinner, watching the sunset. - When the stress level is at its highest, it may be helpful to use relaxation and breathing techniques (perhaps include an example of a breathing exercise). It can also help to get away for a moment, take short walks or something that is special to you. - Remember: you are not alone and you do not need to do everything yourself. Ask family, friends, neighbors or people you know for help. There are also associations, institutions and professionals trained to help, whether in caring for the Person with Dementia or in their own care. Seeking support doesn't mean you're not a good caregiver, that you're not doing your best. It means that you care, that you want to do your best and take the best care of your family member. Looking for your support network, for moments of leisure and conviviality, is also essential to feel accompanied, to rest and, consequently, to increase your well-being. - It is also important to be tolerant of yourself. Self-compassion is essential for self-care, and it implies that you value your work, your effort and dedication to the Person with Dementia and, at the same time, remove the critical voice that we have within us. - It is natural that this whole process brings with it doubts and fears - there are support lines and professionals available to help you throughout this process, and who have training and information, not only regarding dementia and care, but also information about helping external resources, resources available in your area of residence and specialized institutions. - Another strategy that can help is sharing. There are support and/or support groups that aim to share experiences and difficulties, but also strategies and mutual support. They are good places to ask questions and share how you feel. It should be noted that each caregiver knows their own context, their possibilities and the way in which care is organized. Sometimes it will be possible to put these suggestions into practice, but other times it may be more difficult to do so. What is important to reinforce is the need to pay attention to what you feel, physically and emotionally, and seek help whenever you feel that your needs are greater than the resources you have to face them. We hope that the chapter has been useful to you, and also hoping that these tips can help you cope and get the support you need. If you are interested in obtaining more information, you can consult our project website at: http://demcare.hcilab.es/ . Until the next episode!