What could be more beautiful and satisfying than informal care out of love? And what could be more difficult than informal care out of a sense of duty? Some informal caregivers feel like Chinese volunteers: they are charged by their environment or by their conscience with caring for parents, parents-in-law or other family members. And they suffer from feelings of guilt because, despite their love for their loved ones, they hate this caring work and find no satisfaction in it. Those emotions are most difficult when the person who needs care is grateful for all the help given. And moreover, if those around you think that your ‘loved one’ should be very happy that he or she has you to take care of him or her. The situation is even more difficult if the relationship with the person in need of help was previously or currently distant or even bad. What does informal care mean for the person who provides help to someone who is dependent on it?
Caring out of love
If you have a cordial relationship with the person who needs support, you provide care out of love, and you may be rewarded with kind words or a loving hand on your arm or other small forms of appreciation. Your care then gives personal satisfaction and meaningful meaning to your life.
The fact that you occasionally have to deal with symptoms of exhaustion, anger and resentment is just part of it. When you weigh everything up, you are happy that you can do this work of love.
Caring out of a sense of duty
However, if you assist someone in need not out of love, but out of a sense of duty, the care will be a greater burden. This makes it considerably more difficult to maintain for a longer period of time. You usually provide care because there is no one else who can or wants to take care of it or because you have not learned to say no.
When it comes to caring for one or both parents, that sense of duty is related to the fact that your parents took care of you when you needed it and that it is now your turn to help your father or mother now that he or she is in need of help. . You then have the feeling that you are paying off a debt.
Fatigue, little free time and little income
Doing the shopping or financial administration, taking and/or picking up appointments with the doctor or hospital or helping with physical care are all part of life when one of your loved ones has become in need of help due to illness or old age.
One activity is less physically and emotionally demanding than the other, but all together it often means that your free time is reduced to a minimum.
This can be extra painful if you were hoping that you would finally get some time for yourself when you got home from work in the evening, now that the children no longer require much attention. Or if you have to quit a nice and well-paying job because you are already too tired of combining work and care. Still, you are willing to make that sacrifice for a loved one.
But nowadays, the current government increasingly expects family members to take on the personal care of someone who is not happy with that or with whom they had or have a distant or downright bad relationship. What does that mean for the involuntary informal caregiver?
Is informal care a privilege?
How do you feel when friends and acquaintances who also provide informal care experience this as a privilege?
What if you yourself are plagued by the feeling that informal care is dulling you, that your chances of a promotion at work are lost in this way? Simply because you don’t exactly arrive at the office feeling refreshed and rested in the morning. Because everyone can see from your gray and stiff face that you don’t get enough sleep and that you are actually tired before you have to start your working day. And because you already wonder in the morning how things will go that evening for the person who depends on your help. And because you cannot recharge your battery on the weekends, but are expected to provide care, so that those who do that during the day during the week also have some time off.
And what if the person who needs your help constantly criticizes your way of caring. When whatever you do, it’s never right. If you keep getting a stink in your gratitude, even though you do your utmost to please the person in need?
In essence, you feel like you are being preyed upon. And you wonder how long you can keep up this hard and thankless job.
In those cases, it is hard to imagine that other people see informal care as a privilege. A comment like How nice that you can do this for your own father or mother feels like a slap in the face.
Feeling guilty about informal care
People who provide informal care out of a sense of duty sometimes feel inadequate because they feel little or no warmth for the person who depends on them. Or because they would actually prefer to spend their time in a different way. Then a feeling of guilt often arises.
If you recognize yourself in this image and someone tells you that your father or mother who needs help is lucky to have you, you may not know what to say and you may feel embarrassed.
Instead of wrongly feeling guilty , it is better to realize how wonderful it is that your sense of responsibility is so great. After all, a sense of responsibility is an admirable quality that you can certainly be proud of.
Furthermore, you can see informal care for a parent who did not give you a happy childhood, or who, in fact, abused you, as an opportunity to grow and find peace with a situation that used to cause you great sadness or despair. Worried.
The importance of setting limits on your availability for informal care
In the interest of your own health and well-being and that of your partner and any young children, it is necessary to set limits on your availability, especially if informal care is expected to last a longer period of time.
When you are exhausted by informal care
Regardless of whether you provide informal care out of love or a sense of duty, there is a chance that at some point you will be completely exhausted and no longer know what to do next, because you are already exhausted when you get up and wonder how you will get through the long day. .
At that point, you have probably ignored your own boundaries for a long time and said no enough to requests for help that could also be offered by other people in the social network of the person in need of help .
Sometimes the people around you have already noticed that you were not doing well, but sometimes not. In a number of cases, people do not want to see that you are doing poorly, because this means that they will then be placed more heavily on themselves to provide care to someone in need of help.
If you have decided to stop providing informal care temporarily or otherwise because you can no longer cope and you are completely at the end of your rope, you must take into account critical questions and comments from family and acquaintances, but also from healthcare authorities. .
Relieving the pressure of informal care
You may find personal support in special meetings for informal caregivers. Or perhaps you can outsource part of the burden, such as setting the table, day programs or volunteer organizations, if no other family members or friends of the person in need are available.
And if you feel that you cannot provide the necessary care for much longer and there are no or insufficient other helping hands available within the social network or from other volunteers, you may be able to help in looking for the best professional care for the person in need of care in a care home or nursing home or hospice.
Informal care and the distribution of help within the family
If your reduced availability or complete lack of availability means that other family members have to spend more hours on care, this can cause emotional tension in the family. Especially if you were the one who offered by far the most help until then, because the family believed that you were the best person to do so and you had difficulty saying no.
Before you decide that you are less available or not available at all as an informal caregiver , it is wise to discuss your problems with that care within the family and see whether solutions can be found to improve the situation for everyone involved, i.e. for both to keep informal caregivers and those in need of care manageable.
Sometimes this means that home care by the family is no longer possible and that a solution must be found in the form of a care home, nursing home or hospice. Keep in mind that you will then be blamed for putting away the person in need of help. However unjustified this may be.
Informal care and the healthcare authorities
Bear in mind that one of the tasks of healthcare authorities is to involve the social network of the person in need of help as much as possible, so that the limited help available is used as much as possible for people without an adequate social network.
You may hear comments about abandoning those in need. It is possible that the contact person at the healthcare institution experiences this as such. It may also be that this is one of the well-known tricks to get someone to continue providing informal care, even if it is at the expense of the caregiver’s own health.
Unlike the so-called ‘usual care’ for other household members, informal care is not an obligation. As far as personal care is concerned, it is only mandatory for the partner of the person who is ill or needs help. And that obligation only lasts a maximum of 3 months. If the burden is too heavy, the person who needs help may in principle be eligible for ‘respite care’. This is to give the informal caregiver some relief if they are in danger of becoming overloaded or are already overloaded.
Tip against pressure from others to continue with informal care
Keep in mind that you will be put under a lot of pressure from different sides if you want to reduce or stop informal care, even if it is clear to the outside world that your health is suffering as a result. Take into account comments, whether genuinely indignant or not, such as: ‘But it’s about your own father! Or That’s what you would do for your own mother, right?
If you don’t know what to say to people who criticize you because you want to stop providing informal care, you can resort to the so-called ‘scratchy gramophone record’.
To every comment made to you, you say the same sentence over and over again. For example: ‘That may be true, but I’m at the end of my rope.’ That is an effective strategy to eventually stop the whining.
Above all, do not respond to questions from the healthcare agency’s contact person about the details of ‘being at the end of your rope’. Because the answers to those questions will be used against you to persuade you to continue with informal care.
For example, say kindly but firmly that you will keep the details about your health to yourself. And you conclude with ‘thank you for your understanding’.