What do I need to organize in the sudden need for care? How can I balance caring for a loved one with my job and family life? Can I care for myself at all?? Where can I learn practical nursing knowledge?? care.de takes caregivers by the hand and explains what’s important: from your own demands as a caregiver to relief offers for caregivers.
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An accident, a stroke or even a chronic illness like dementia – and suddenly a lot changes. Your parents, your partner or your grandparents can no longer manage their everyday life alone and need your help. You probably feel overwhelmed by all the information coming at you. After all, there are many aspects to consider when caring for loved ones. And at the same time you don’t want to neglect your own family and do justice to your life. CARE.de takes you by the hand and shows you step by step what to expect when a relative needs care, how you can meet the care requirements and what your own needs are.
Suddenly in need of care: How to organize care step by step
If one of your family members suddenly needs care, it is important to proceed step by step. You have probably not yet come into contact with the topic of care and must first familiarize yourself and inform yourself. What are the most important steps to take after a sudden care event? What forms of care are there? How do I learn to care for my loved one?? What is the medical service (short: MD, formerly known as: MDK) or MEDICPROOF and how do I apply for care services? And: How do I secure my own life and what are my legal rights as a caregiver when I take care of someone who needs care?? You will be informed about your individual options in a professional care consultation. You can also obtain initial information on care at a care support center.
care.de will guide you through the decision-making jungle and explain the most important issues in the event of a nursing case in the family.
Combining care and working life: How to protect yourself financially
Your relative suddenly needs care and you wonder how you can combine work, family& Be able to arrange care? Some employers may be generous at first and grant you short-term leave in the event of a sudden need for care. This allows you to take care of the most important things first and be there for your relative. However, at the latest when your leave entitlement is used up, you will need an alternative solution. There are various options for this, so that you can reconcile the care of your relative and your job without having to forego financial security:
- Short-term absence from work& Care support allowance
From the start of the care situation, you as a relative can apply for time off for up to ten days and are legally entitled to it. For this time, in which you can take care of the initial care and further planning of the care of your relative, you are entitled to the so-called care support allowance. This is equivalent to special paid leave for family caregivers.
- Caregiver leave
Under the Caregiver Leave Act, you as a caregiver are entitled to up to six months of caregiver leave, during which you can take a break from your job and enjoy special protection from termination of employment. As with parental leave for childcare, you can take part or all of this time off work to care for your relative. However, this entitlement only exists in companies with more than 15 employees. There is no money for caregiving relatives with this variant. If necessary, you can receive financial compensation from the person in need of care, for example through care allowance.
- Family care leave
If the need for care lasts longer than six months, you can take advantage of family caregiver leave for up to 24 months, which is regulated as financial support for family caregivers in the Family Caregiver Leave Act. However, you must work at least 15 hours per week for your employer. To cushion the loss of earnings, you are entitled to an interest-free, state loan. However, there is no legal entitlement for employers with 25 or fewer employees.
- Interest-free, state loan
During caregiver leave and family caregiver leave, you can take out an interest-free state loan from the Federal Office for Family and Civil Society Tasks to provide financial support.
- Contributions to pension insurance
As a family caregiver, you are covered by social security during the care period. The care insurance fund pays pension insurance contributions during the care period. They then receive so-called pension contribution payments. However, you must devote at least ten hours per week to caring for them. As a family caregiver, you earn pension points while caring for your family member in need of care.
- Subsidies for nursing care and health insurance
The nursing care insurance fund also provides subsidies for nursing care and health insurance for nursing relatives. You can take out voluntary unemployment insurance – but you have to pay the contributions yourself. As a family member providing care, you are covered by accident insurance free of charge.
Legal provision for the case of care: also possible retrospectively?
Ideally, you should take precautions at a young age and in a healthy condition and make arrangements for how to proceed in the event of an emergency. Legally one can secure oneself long before a possible need for care. The following legal forms of preventive care are available:
Regulation of desired and undesired medical measures that are decisive for the attending physician (for example, life-sustaining measures after serious accidents): Appointment of a person who can make decisions and conclude contracts on behalf of the person concerned if he or she is no longer able to do so him- or herself: Order to the competent court to appoint a specific person as legal guardian in the event of an emergency: Declaration of the will of a testator on what is to happen to his or her assets after his or her death
Care recipients can still decide
Provided your relative in need of care is still in good mental health, he or she can still make all these arrangements themselves despite the need for care and record them in an emergency passport and emergency folder. Provisions can also be made after the fact and should definitely be addressed at the time of the sudden need for care.
Financial provision for the case of care: Thinking now about later
You probably realize it yourself in the event of care for a close relative: The costs for care are enormous and the subsidies for the individual care degrees (formerly care levels) are usually not enough to cover the costs. In order to be able to provide for your own old age and to avoid burdening your relatives later on, you should start making financial provisions at an early stage. For example, supplementary nursing care insurance, daily nursing care allowance, private nursing care insurance (nursing care annuities), the state-subsidized "Pflege-Bahr" or private financial reserves are available for this purpose. Use this knowledge proactively for your parents or grandparents as well, and talk openly about reserves that can be used in the event of a care need.
Nursing knowledge for family caregivers: from personal hygiene to lifting techniques
If you have ever tried to lift an adult, you are probably familiar with the challenges of home care. Before you can take over the care of your relative on your own, you may need some nursing knowledge from a wide variety of areas, for example:
- Correct positioning and lifting of the patient (mobilization&) Kinesthetics) (washing, bathing, shaving)
- Oral care and dental care
- Intimate hygiene for people in need of care
- Assistance with bladder emptying and defecation
- Help with getting up, dressing and undressing, walking, as well as with transfer and positioning techniques
- Preparation of meals and help with food intake
- Household care (shopping, cleaning, laundry)
Depending on the situation, other issues may arise, such as how to deal properly with the pain (pain management) of the person concerned, the permanent bedriddenness of the person in need of care, or the sensitive handling of dementia patients.
The long-term care insurance companies are legally obligated to offer you free nursing courses for caregiving relatives. For example, these training sessions teach positioning and mobilization methods and provide information about possible assistive devices, legalities of caregiving and long-term care insurance. As a result, you will quickly gain more confidence in daily caregiving. In order to ensure the quality of home care, care consultations are also held, which in some cases are obligatory.
Providing relief for family caregivers
In practice, it often happens that caregiving relatives are so committed to their new tasks that they do not notice their own dwindling strength. The more severe the need for care is and the less help is provided by other family members or care services, the faster the stress becomes apparent. Even the most resistant person will sooner or later fall to his knees in the face of this burden if he does not take care of himself. So take advantage of respite opportunities for family caregivers whenever you can. Always remember: You have made a commitment not only to the person in need of care, but especially to yourself. You can find relief, for example, through the following offers:
- Vacation or cures for caring relativesEven if you are a carer, you will need leave sooner or later. Take advantage, for example, of the offer of preventive care, in which your relative is cared for as a substitute for the duration of your absence.
- Vacations with Caregivers: A vacation together with the person in need of care can also relax the care situation at home. However, it is very important that you can also relax and do something for yourself or with your own family. To ensure that your loved one is in good hands during this time, you can take a vacation in a so-called care hotel.
- Rehab for family caregiversYou are at the end of your tether and urgently need to recover? Then a cure for caring relatives can be a good choice for you. Talk to your family doctor. He will support you in making the necessary applications. Even small wellness treatments such as massages can reduce the stress level from time to time.
- Support groups for family caregiversIn most regions, there are self-help groups for caring relatives, where you can talk to others about the daily routine of home care and the psychological strain on relatives. Take this opportunity – here you will find like-minded people with whom you can exchange ideas about the challenges of caregiving and give each other tips for caregiving practice.
- Support in everyday life: Get help for everyday tasks so you can fully focus on caregiving. A household help, an everyday companion, a shopping help in the context of the hourly senior care or also a menu ring service can relieve you of a lot of work and thus perhaps even still make your own occupation or at least some spare time possible.
You can ask the experts your pressing questions in our free online events with experts from the caregiving world. From respite options for caregivers to legal issues, the live events have a variety of focuses.
You are responsible for your own health and relaxation – no one will be looking out for you in your place. There is no shame in seeking help, but rather a sign of strength in knowing and respecting one’s own limits.
When nothing works anymore: What to do against overload?
Family caregivers often struggle with stresses that can accumulate over time. Often you are so busy throughout the day with your caregiving duties that you not only neglect your own relaxation periods, but also your private life in particular. Difficulties in the partnership and a distancing from friends and acquaintances, even isolation, are often the result. Many caring relatives constantly live with the burden of serious feelings of guilt, on the one hand towards the neglected friends, on the other hand, however, also with regard to the person in need of care, if they do take time off. Often you are alone with all your worries and needs. This can lead to a burn-out or a serious depression.
Take advantage of psychological counseling in this situation. How to learn how to deal with your feelings properly. A longer break, for example in the form of rehab for family caregivers, can provide some distance. However, it is even more important that you restructure your everyday life in home care and get help when needed. Otherwise, the vicious cycle will soon catch up with you after you take time off.
After care: saying goodbye to a loved one
At some point, the final phase of your loved one’s life will dawn and you will have to deal with thoughts of saying goodbye in addition to caregiving. Especially in the case of serious illnesses, the imminent end is a great burden for all relatives. Within the scope of palliative care, you have the opportunity to make this last time as pleasant as possible for your relative, including medicinal pain therapy. This way, you can be sure that your loved one will not suffer and can enjoy your closeness once again in the last phase of his or her life. For you as a loved one and your family, there is the possibility of end-of-life care. Also for this you can perceive offers of support and learn to process your feelings and gradually "say goodbye".
Did you know that..?
So that you can make the last weeks or months of your loved one’s life as pleasant as possible, the Caregiver Leave Act assures you the right to further leave of absence. You can take up to three months off work to accompany the dying person on his or her journey.
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10 years pflege.en: Interview with founder Lars Kilchert
Lars Kilchert is founder and managing director of pflege.de – one of the leading portals around care with focus on care at home. His goal is to make it easier for people to care for themselves with.de to simplify the organization of care for those in need of care and family caregivers and to provide them with important care information.
In February 2021, care celebrated.de 10-year anniversary. What began with two people has now grown into a company with over 100 employees. Today care.de a leading portal on all aspects of care with a focus on home care, helping around 30.000 visitors to make everyday care at home easier with information and useful services. care.de founder and managing director Lars Kilchert looks back on ten turbulent years and gives an exclusive insight into the early days of the company.
10 formative years with care.de – an interview with Nils Tholen
Nils Tholen is the managing director of pflege.de – one of the leading portals for all aspects of care, with a focus on care at home. His concern is to help people with care.de to support both care recipients and caregiving relatives with sustainable assistance in their daily care routine.
After ten years of pflege.de, it’s time to take a look back with second managing director Nils Tholen. From the beginning, he built up the company together with founder and CEO Lars Kilchert and firmly believed in the idea of creating something meaningful. All developments in the field of care.Nils Tholen has been able to actively shape the company and try out new things. Always with a focus on the benefits for family caregivers and those in need of care, as he himself says. The entire organization of care should become simpler, more goal-oriented and less expensive.
Survey: Expectations for digital support in care
care.In cooperation with the University of Tubingen, Department of Nursing Science, focus on care research, de conducted a survey among caregivers to find out what expectations are placed on digital support services.
The shortage of caregivers in Germany is a well-known problem and is being exacerbated by the Corona crisis. Many people in need of care belong to the risk group and do not allow anyone else into their home – not even the outpatient care service – for fear of infection. Digital support services could provide relief and help stabilize family care situations in the long term – even after Corona.
A survey on expectations of the sog. telenursing (tele = from a distance; nursing = Pflege) has now revealed that many of those affected are open to digital care-related offers.
People in need of care and their relatives were asked in which areas they use e-health offerings and technical support options and where they would like to see expanded digital offerings.
Survey: Expectations of telenursing
The survey should show
(a) which counseling services are already known& be used
(b) which access routes to counseling services exist, and
(c) how helpful they are for the respondents. In addition,
(d) in which areas of care the respondents would like more support.
Personal support most helpful, digital offerings
"second best way"
When asked how helpful the respondents rated the various consulting services for individualized and rapid assistance with practical care, most indicated a clear preference for on-site support from care experts.
Who was surveyed?
Surveyed 415 randomly selected subscribers to the nurturing.de-Newsletters. 45 percent resp. 187 of the participants have completely filled in the questionnaire. Of these, 32 percent were people in need of care and assistance themselves and 57 percent were relatives (z. B. life partner or relatives). The most frequent users were people between 51 and 70 years of age, mainly women (60 percent).
However, the response behavior also signals an openness to modern, digital support offers, so to speak as the "second-best" way: 44 percent would find a care app and 42 percent a care expert via video helpful as care-related support. Just under a third of respondents imagine online learning opportunities such as z. B. would find an online lecture helpful.
Offers in care that are rated as helpful.
More support with questions about financing care
It was also determined for which content participants would like to see better counseling support. Result: Help is needed above all in financing the provision of care. Greater support is also needed with regard to relief through technical aids. 60 percent would also like help in situations where they are overwhelmed by the need for care, 46 percent in dealing with illnesses (z. B. dementia, chronic wounds, Parkinson’s disease).
Caregivers want more support in these areas.
Internet is used, many digital offers are not
The survey also asked which counseling services and sources of information on care are known and how they are used. It was found that most of them used the Internet (see notes at the bottom of the text) several times a week to get information about care. In this respect, the Internet has established itself as a source of information on care needs, alongside "classic" advisory bodies, i.e. doctors and nursing staff, as well as friends or acquaintances. In contrast, podcasts or more comprehensive e-learning offerings receive little attention.
Frequency of use of support services in care.
Here, a disproportion becomes particularly clear: Although the vast majority of respondents regularly use the Internet to obtain information for nursing (82%), only a few respondents use the existing digital offerings such as online nursing courses or other eLearning formats.
Internet is used, digital offers are not.
Conclusion: Need for development of digital offerings
The need for support in home care is generally very high. The survey makes it clear that most caregivers prefer personal support from care experts. However, the Internet has now established itself as a source of information: Numerous digital care offerings are rated as helpful. The target group is open to more digital offerings to support and relieve their private care situation. However, existing offers that can meet this need are still too little known or. not helpful enough and are therefore hardly used. In particular with regard to the development and use of digital support offers, a great need is consequently apparent.
Another stumbling block is the unclear legal situation, e.g., "I always treat others the same way. The question of whether the costs are covered by the health insurance funds. Germany clearly has a lot of catching up to do in this area, according to the survey’s authors. Quality-assured use of digital support services would greatly benefit those in need of care and their families, as well as the system of general health care, z. B. Through preventive measures, relieve the burden considerably. It is high time that this is started across the board.
Communication tips for the care organization: 14 tips for official conversations with care insurers& Co.
Tatjana Bruckner knows care from a variety of perspectives: From the perspective of a family caregiver and caregiver, a health care and nursing professional, a chronically ill patient, and a person formerly in need of care.
As a companion, she currently works intensively with caring and nursing relatives. Your aim is to strengthen the caregiver so that he or she feels able to cope with the hurdles and challenges of everyday care. In addition, it consolidates interpersonal skills.
Tatjana Bruckner is a committed member of the pflege relatives’ advisory board.en.
If you organize care at home, you have to organize, clarify and agree on a lot. Whether care service, care insurance, doctor, physiotherapist or medical supply store: many people and institutions are involved in ensuring the care and provision of a person in need of care. Proper communication is the basis for this. Tatjana Brucker is a member of the relatives’ advisory board of pflege.de and gives you 14 practical tips that can help you to proceed systematically in official conversation situations and to clarify your concerns as quickly and effectively as possible.
14 tips for official conversations
Through my experience as a caring family member, as a professional, as a chronically ill patient and also as a person formerly in need of care, I know from the various perspectives how important it is to treat my counterpart with respect and appreciation. Care is always interactive. What we send out comes back to us. I always treat others the way I would like to be treated myself. Based on my own experience, I have put together 14 tips that can help you master the organization of care in a communicative way.
One organizational tip in advance: Before you go into a conversation, for example with the nursing care insurance company, because perhaps you have not yet received an answer to an application, take a close look at your relative’s home. Possibly the letter arrived and got lost among other letters.
To make it easier for other family members to keep documents in order, it’s worth having a system that everyone can access. For example, create a folder with an index so that it is easy to follow, even for other family members who are part of the care help network, where things are and where they can also look things up. This organization helps to be better prepared for the interview.
1. Prioritize pending conversations
List conversations you need to have. Prioritize which conversations are a priority and which can wait a bit longer.
Make a note of the status of the conversation and the date, preferably on the letter itself. For example, if the call is a return call or if you are responding to a letter?
Since unforeseen events can also intervene, it is important to have an overview in order to stay on top of things. You can cross completed conversations off your "to do" list.
2. Go into the conversation prepared
Write down what important questions you have for your conversation partner. Have the necessary documents, pen and paper at hand. Even before the conversation, find out, for example, your policy number, customer number, or the letter to which you are referring. In the conversation itself, it is disturbing if you have to look for something first. It is also quicker for something to be forgotten in this way.
3. Describe your concerns briefly and concisely
Communicate clearly and comprehensibly what exactly your concern is. Keep your focus on the important information and do not digress. Insignificant information firstly holds up and secondly can distract your conversation partner from your real concern. Keep in mind that a goal-oriented conversation is not impolite, but leads more quickly to the desired action. Nevertheless, you may ask your own needs, wishes and also open questions and express ambiguities. Make your request as concrete as possible, for example: "Can you please advise me on measures to improve the living environment??"
In order to be as brief and concise as possible, it is helpful in many situations to get information in advance, for example, about specific care services. This will allow you to be specific with your questions and get to your goal faster. In addition, you may already know who you can contact for which request.
4. Make a note of important information during the conversation
Do not enter the conversation without paper and pen! Write down the most important information. At the beginning, find out the name of the person you are talking to and make a note of their extension number. Important notes also include, for example, further action steps. What do you need to do next, who do you need to contact to achieve your goal??
Ask for confirmation when you feel it is necessary, such as when you have requested something. This will allow you to add to your own notes.
5. Clarify the availability of your contact person and the desired communication channel
Ask how you can best reach your responsible doctor, case manager or similar person so that your request can be dealt with promptly.
If necessary, it may be important for you to convey information or applications for which there are specific regulations. Therefore, additionally clarify which communication channel you should use to get in touch – by phone, fax, email, app or in writing by mail.
6. Ask about anything that is unclear
Dare to ask questions if you have not yet understood something or if individual parts of the conversation remain unclear to you. Be specific: What did you not understand exactly?? This is the only way your contact can answer accurately, repeat the information or explain it in more detail.
Prevent misunderstandings by making short summaries
At the end of the conversation, you can read out your most important notes (Tip 4) once again. Your conversation partner can then confirm your summary, add to it or correct misunderstandings.
7. Have important conversations calmly
Create a time and place where you have the opportunity to talk undisturbed and quietly. Allow sufficient time for this so that you can complete the conversation in peace and quiet. Keep in mind that you may not be able to reach the person you are talking to by phone right away, so it is important to plan a time buffer.
8. Pay attention to your feelings that resonate with you
If you feel very tense before the call, take a little time out to breathe deeply. You may find it helpful to make yourself a cup of tea or coffee, which will create a comfortable atmosphere during the conversation. A relaxed conversation allows both sides to have a peaceful, appreciative communication environment. Keep in mind that the person you are talking to is tense and also unhappy several times a day. Do not dump your pressure and negative feelings on the person who is there to help you.
9. Let your counterpart finish
Many people tend to complete each other’s sentences. Let your counterpart speak.. You yourself may also say what you have to say. This is how you maintain respectful cooperation.
If you have a question of understanding in between, you can also briefly interrupt with "Excuse me, did I understand correctly that ..?". This way you enable yourself to follow what is being said at all. Your counterpart does not have to completely repeat what you have said afterwards. Use conversational interruptions as infrequently as possible so as not to completely stall the flow of the conversation and also so as not to catch your counterpart off guard. It is important that you only interrupt the conversation if it makes sense and positively influences the further course of the conversation.
You can also make a note of your unanswered questions for later. Often ambiguities are resolved by the further course of the conversation.
10. Listen actively and confirm what has been said
Reduce distractions as much as you can – radio, TV or even food on the stove. During important conversations, it is important that you actively focus your attention on the conversation. Convey the fact that you are actively listening to the person you are talking to by making eye contact, occasionally nodding or even briefly acknowledging what is being said. During telephone calls, confirm with an "Okay", "Aha", "Yes", "I see".
Allow pauses and ask follow-up questions. At this point, you may summarize what has been said again in your own words and elicit requests or even possible options. This way you can check whether you have understood the answers correctly – and also whether your counterpart has understood you.
11. Deal calmly with unfriendliness and remain positive
Sometimes you will catch people on the wrong foot and encounter unfriendly behavior: Stay calm and be understanding. Maybe your counterpart is having a bad day? You will then be the first friendly customer that day. Your conversation partner may realize after the telephone call that he was not as friendly to you as he usually is. Stay with yourself and treat others the way you would like to be treated yourself.
12. Say "please" and "thank you"
Saying "please" and "thank you" sounds natural – but unfortunately it is not.
Showing appreciation for your conversation partner is still important! You can only expect your counterpart to behave in an appreciative manner if you yourself behave in an appreciative manner. At the end of the conversation, thank your interlocutor for helpful advice or for taking the time to address your concerns.
13. Give feedback
You may tell your counterpart how you felt about his message and also how you now feel about this information. You may also share whether the information you were given was helpful to you or if there are any other questions that need to be clarified. Be honest in doing so. After all, if everyone said "Yes, thank you" after a conversation and no one said, "That doesn’t really help me yet, I still feel overwhelmed with it" – how is the customer service representative, for example, supposed to know that he or she needs to elaborate further? Feedback allows both sides to reflect on the conversation and thus also opportunities for improvement.
14. Seek and accept help
You feel quite powerless to hold a conversation, as it demands a lot of your strength? You would like to manage all the organizational matters on your own, but you already feel overwhelmed with all the applications and forms? This is not uncommon and can be understood very well.
Do not be afraid to accept help. I advise you to provide relief from the very beginning. Have the person who takes some activities off your hands still keep you up to date so you don’t lose track of what’s going on. In addition, you still have the possibility to be involved in decisions.
You can also delegate tasks. There are organizations that will take care of the communication for you regarding health insurance, nursing care insurance or the like. The nearest care support center, the specialist center for family caregivers or the outpatient care service in your area can help you with this. There are free, voluntary and, of course, fee-based offers.
You may also have a relative or acquaintance who is happy to help – especially if you feel you can’t cope with the information overload. If you find that every phone call is too much for you, get help, through your support network or through a caregiver who will then take over these matters for you.
In the second part of the communication series with Tatjana Bruckner, you will learn more about communication in your own support network. Communicating rather than complicating shows you how to communicate your needs and build and keep a functioning help network going.
Communicate instead of complicating: This is how you build a care support network
Tatjana Bruckner knows care from many different perspectives: From the point of view of a caring and nurturing relative, a health care and nursing professional, a chronically ill patient, as well as a person formerly in need of care.
As a companion, she is currently working intensively with caring and caring relatives. Your aspiration is to empower caregivers so that they feel up to the hurdles and challenges of everyday caregiving. In addition, it solidifies interpersonal skills.
Tatjana Bruckner is a dedicated member of pflege’s relatives’ advisory board.en.
Your relative’s need for help can increase gradually or unexpectedly from one day to the next. You feel left alone as the main caregiver and would like more support from family and friends? Build a support network for your caregiving situation. Because there is a lot to organize, to restructure and to orchestrate helping hands.
Tatjana Bruckner is very familiar with care situations and knows that challenges and tensions can arise within families when information is unclearly expressed or not sufficiently communicated. She knows the importance of self-care for family caregivers and gives useful tips on how to succeed in appreciative and constructive interaction within the support network thanks to peaceful and open communication.
Care and dying of my mother at home – This is how I experienced it
My mother died on 2. November 2014 at the age of 76 in her living room, in my father’s arms. The fact that we were able to make this wish possible for her was a very peaceful feeling despite all the sadness, although the preceding weeks were of course accompanied by many emotional ups and downs. In the following, I would like to share my experience, as a daughter, of my mother’s last two months at home, and I would like to encourage you with it.
First, briefly about our family: at 45, I am the youngest of three daughters and the one who lives in the same town as our parents. My sisters live 60 km and 120 km away, so they can’t drop by home as spontaneously as I can. I myself am married, work independently from home and have two children who were 10 and 12 years old at the time. My father is 79 years old and still manages very well.
"Pain has always been a big part of her life"
I have actually known my mother for most of my life with chronic pain and moderate to severe illnesses. Very often it was a matter of pain, which could not really be clarified. However, life-threatening situations such as an inflammation in the brain or intestinal obstruction also accompanied my mother, so that frequent visits to the doctor, hospital stays and, above all, physical impairment due to recurring bad pains were a big part of her life and suppressed much of her actual nature.
In July 2014, the strange pains, the intestinal problems and the cardiac arrhythmias increased and my mother was repeatedly admitted to the hospital, partly operated on and then discharged again. It was an eternal up and down between fear and hope; relaxed and confident phases with many plans for the future were replaced by terrible pain in the middle of the night. Sometimes it was the intestines, sometimes the heart, then the pain seemed to come from the spine, but no one really knew what was going on. In an emergency operation my mother got an artificial intestinal outlet, a little later a pacemaker. She was then transferred to a special clinic for rehabilitation and at first things looked good.
"I see it right that my mother will die in the foreseeable future, or?"
But quite quickly I realized that her will to live was now simply less and she no longer wanted examinations, physiotherapy, special food etc. she only wanted to go home. In early September, I asked to speak with the attending physician, who then told me that there was nothing more she could do for my mother and that we now had to decide what to do with her. As is my way, I asked straightforwardly: "I see it right that my mother will die in the foreseeable future, don’t you??". The doctor leaned back, visibly relieved, and replied: "I’m glad that you see it so realistically, I very rarely experience this with relatives."In the meantime my mother weighed 40 kg at a height of 1.68 m and it was clear that this emaciated body would not survive another operation – even if the doctors had known what to operate on. Thus, my mother was discharged as multimorbid. My father was of the firm opinion that my mother would recover completely in her familiar surroundings and reacted very gruffly to all statements to the contrary.
"My father made every effort to cook for her and ‘get her back on her feet’"
Now there was a nursing bed in the living room and my mother was happy to be at home again. In the first days she even managed to take a few steps on the terrace and enjoyed the autumn sun rays. My father tried his best to cook for her and to get her back on her feet, while an ambulatory nursing service came in the morning and evening to take care of the stoma bag and to wash and change my mother for the day or night.
Since my mother was mostly pain-free, her humorous and relaxed attitude slowly returned and she often seemed happy with the situation. Her brother and sister-in-law from Stuttgart came to visit, of course we sisters, friends called and my father also took touching care of my mother. But little by little she became weaker, she didn’t want to get up or walk a few steps, she didn’t want physiotherapy anymore and lying down was increasingly difficult for her despite the soft bedding mattress. She also slept a lot more and it stressed her out when too many people were in the room or talking.
My father still tried hard to get her to eat regularly, there were special high calorie sip foods that he kept offering her. This made my mom really angry at one point and I tried to point out to dad again that mom just ‘wouldn’t be anymore’. But he still refused and said that she just had to do the exercises and eat and drink well, then everything would be fine again.
"It was a mostly peaceful and loving atmosphere in the house"
Since my father had regular events in the shooting club and also belonged one evening a week for years to a Doppelkopf group, I came at these times regularly to be with my mother. One of my sisters also took over some of these "mommy-sitting" hours and we both found that they were very nice times. Often my mother would be asleep, then wake up and ask a question, after answering which she would doze off again. But she also enjoyed foot massages, liked to be combed or creamed and just thought it was nice to talk a bit. With a few exceptions – uncomfortable position, beginning decubitus, slight cramps or cold feet – she was also free of any pain and so it was a predominantly peaceful and loving atmosphere in the house. From time to time there were discussions with my father about the amount of what she ate or drank, because there he remained very stubborn.
In the middle of October, my mother’s family doctor called, who came regularly for blood tests. My father was not at home, and since the doctor has known me since I was a child, he talked to me about the fact that my mother’s kidney values had worsened a lot. There would now be two options: She would have to go to the hospital several times a week for dialysis or have a port placed, through which she could then be on a drip at home for several hours at a time. Again, I said what I thought: "My mother doesn’t want to go to the hospital anymore. And it’s like she’s going to die in the foreseeable future, isn’t it?"He was also very relieved and said that as a doctor he would of course have to present all the possibilities. I asked him what the consequences would be if there was no dialysis and he explained to me that the kidneys would then fail quickly, which would manifest itself in increasing fatigue, possible cramps, which could be treated well with medication, and finally in a failure of the cardiovascular system. I replied that of course I would have to leave that decision to my father, who would get back to him.
"From then on, it was only a matter of making the remaining time as pleasant as possible"
When my father came home, it was one of the hardest conversations of my life. Suddenly everything fell away from him and I could clearly see that he had also known for some time that Mom would die, but simply did not want to admit it. After his phone call with the doctor, it was like a jolt went through his body and the first thing he did was pack away all the astronaut food and other powders and took all pressure out of my mother’s care and maintenance. From then on, it was only a matter of making the remaining time as pleasant as possible and he was completely guided by what Mom wanted. She slept a lot, but there were still many wonderful moments, up to the evening ‘watching TV together’, where my father explained the movies to her, which she mostly watched half asleep.
This time, very peaceful for all of us in the first place, then lasted another 14 days until one Sunday morning when she was very restless. I was with her, as I do every Sunday, and was busy caring for her for over two hours. Her toes cramped and needed to be massaged, then she felt sick and needed a bowl, then her back itched … her whole behavior was very different from usual and I had a very strong feeling that it would not last much longer now. Shortly after she had fallen asleep, my father came home and I reported my observations. He was upset but very composed, let her sleep and sent me home. No sooner had I arrived home than the phone rang and my crying father was on the line, my mother had pulled through. So I went straight back and we comforted each other as much as we could.
"This opportunity to spend time with her even in death was worth a lot"
Of course, there were now a few phone calls to make, but after calling the family doctor and the funeral director, we first sat back on the sofa and spent some more time with mom, who now – even if it may be cliche – looked very relaxed and peaceful. That opportunity to spend time with her even in death was worth a lot. My father agreed with the funeral home that she would not be picked up until the next evening and probably experienced these last hours with her very consciously in order to say goodbye once again in peace and quiet.
All in all, the time we had my mother at home for care and dying was, of course, emotionally upsetting, and my father once said he didn’t know how long he could have kept it up. It was just over two months from hospital discharge to death, and that was a time that was doable. In addition, mom was predominantly mentally lucid, even if she occasionally confused dates or events. In addition, she was no longer able to get out of bed – we cannot imagine what it would be like to care for a confused relative who leaves the bed or even the house on her own. For us it was a good decision and we all also had many positive experiences and spent precious hours together, the memories of which helped us a lot even in our grief.
Image: © DREIDREIEINS Photo / Fotolia.com
care.de survey shows: caregiving relatives often feel left alone
pflege.de, in collaboration with the University of Witten/Herdecke (Department of Nursing Science), conducted an online survey with family caregivers to find out whether they feel valued and what improvements they would like to see in politics.
Bureaucratic hurdles, few relief options and lack of appreciation are the core problems of home care. These are the results of a survey with caregivers and those in need of care, who care for.de with the University of Witten/Herdecke in the summer of 2020. In an anonymous online survey of 486 people, it quickly became apparent where and how home care needs to be improved.
How can care succeed at home – a survey
Around 3.2 million people in need of long-term care are cared for at home by relatives either alone or in combination with an outpatient care service. That’s 80 percent of a total of 4.1 million care recipients in 2019. (#*magazine_60f7e322dff6b*#) With an increasing number of people receiving care at home, the question of how care can succeed is pressing. Do family caregivers receive enough appreciation and what concrete requests for improvement do they have for the policy?
In an online survey conducted by pflege.de and accompanied by the Department of Nursing Science at Witten/Herdecke University, these questions were to be answered. participants were asked 25 questions designed to provide insights into their situation. Of 486 people who took part in the survey, 366 participants completed the survey. Only fully completed questionnaires were included in the results.
There is a lack of appreciation in home care
One thing the survey clearly shows is that caregivers have a variety of reasons for caring for a relative at home. However, it is clear what the central motivations are. About half of the respondents chose to provide care at home because of emotional attachment, closeness to each other, or because they felt a sense of family obligation. However, positive aspects such as gratitude and recognition for their care services are largely lacking – only 20 percent of respondents said they were valued for their services. A sad result, because they master great things: just under a third of respondents spend more than 40 hours a week on caregiving. Many of them allow themselves little and place the person in need of care at the center of their everyday life.
Desire of caregivers: More time for themselves and less bureaucracy
With an average of 40 hours of care per week, the stress factors in the everyday lives of caregivers are high. Many family caregivers feel very stressed and react with mental and physical illnesses. More than 90 percent of those surveyed would like to have more time for themselves, and almost 90 percent would like to take a vacation or go to a spa to relax. More than two-thirds of caregivers would also need psychological support to better cope with stress. But practical help in everyday life with shopping or household chores, for example, from a support person, would also provide useful relief, according to around 70 percent of respondents.
In addition to the emotional and psychological burden, family caregivers also have to deal with forms and a complicated care system. So it’s hardly surprising if the desire for more support when applying for grants or degrees of care, for example, is also one of the most important requests for relief – over 85 percent of respondents would find this helpful. Striking: Only 18.5 percent see potential for relief in digital offerings in this regard. This relatively low willingness to embrace digital solutions may be explained by the age distribution of respondents: 55 percent of participants are between 51 and 70 years old.
Financial burdens in home care are high
But there should also be more support in financial terms, according to more than 80 percent of those affected. All too often, those in need of care and family care find themselves in financial hardship due to various co-payments or work reductions. In 2019, 301.547 people called help for care. (#*magazine_60f7e322e939b*#) This refers to a social benefit aimed at people in need of care who are unable to meet their care costs from their own resources. The number of people who do not claim social assistance but still get into financial difficulties is high. This tense situation is still one of the biggest concerns of those affected, despite past attempts at improvement through care policy. If you nurse up to 40 hours a week, you are hardly able to work a full time job.
Caregivers feel left alone by care policies
In response to the question of who appreciates the care provided by family caregivers, around 65 percent said they were recognized by those in need of care themselves. 60 percent also felt valued by family and friends. Nevertheless, there is a lack of support in the private environment. Because 41 percent said that as family caregivers, they are often left alone with the challenges of private caregiving.
The same applies to politics: high financial burdens, little appreciation and perceived ignorance on the part of politicians mean that over 90 percent of respondents feel let down by German care policy. They feel little or no representation. Because family caregivers do not have a lobby that draws more attention to the issue and is loud enough to be heard. They themselves simply lack the time for this. If one considers the average care time, which amounts to 6.7 years (#*magazine_60f7e322e939b*#) , it becomes fast clear that most caring relatives do not have capacities during the care and need first a break after such a long-lasting care. They are exhausted and in urgent need of rest. No wonder, then, that only a few stakeholders, 18 percent of those surveyed, would be willing to get involved at the crucial points. In addition, many of those affected, namely 77 percent of those surveyed, are not even aware of the existing associations and initiatives.
Outlook: Politics must become active
The survey confirms what many family caregivers have been complaining about for a long time: they are overworked and experience too little appreciation and support – both in their private environment and from politicians. From the respondents’ point of view, their own recreational opportunities, psychological support, improvements around bureaucratic care organization and financing are necessary to improve relative care in a meaningful way and to relieve caregivers. Politics is needed here. According to survey participants, the app does not take enough account of the care provided at home by family members and hardly takes their interests into consideration. In addition, the majority of respondents do not know of any organization that advocates for the interests of family caregivers. This is an important indication for advocacy groups to review how well known they actually are among family caregivers, and it suggests that existing advocacy groups need to become even better known.
While on the one hand it is the task of advocacy groups to make care at home more visible and to carry it further into the political arena, on the other hand there are many issues that are already well known. It is now up to the politicians to take these aspects into account in the new laws, such as the Supply and Care Modernization Act (DVPMG).
This is how I organize grandma’s care from a distance
Kathrin Sievert is 34 years old, lives in Hamburg and takes care of her grandma, who lives in a nursing home in Hanover. In nursing.de magazine, she shares her experiences organizing care from afar and reports on the challenges she faces.
Kathrin Sievert has been coordinating her grandma’s care remotely since 2011. She herself lives in Hamburg, her grandmother is cared for in a nursing home in Hannover. When she officially took over care for her grandma, she thought to herself, "this can’t be that hard". But again and again unexpected difficulties arose, which she did not expect at all: How do I find out what the doctor’s diagnosis is if I can’t be there at the appointment? When we have to get new clothes? Who can I send to buy new toothpaste? In the meantime, she has found her own method and knows how to get missing information. A very personal experience report from a relative who organizes the care of her grandma over a hundred kilometers away.
When my grandma needed care, I was studying in Gottingen, about two hours away from her home by train. I thought that with a little structured order management, I would be able to cope with the care. I made regular visits anyway and the right care was taken care of in the nursing home where she lived since a fall on her hip.
What does "management granny" mean??
I imagined coordinating their care and maintenance to be more like an administrative job. What this really all means, I thought little about it. I think that’s usually the case: you don’t become a care case gradually, but i. d. R. All of a sudden. Then, when you have to react quickly, you don’t have time to weigh the pros and cons. Then you just do. And because there was no one else in my family who would organize to the extent that I thought was right, I then took over the "management grandma".
I naturally had respect for the task of organizing care remotely. After all, you somehow take responsibility for someone’s well-being. But if I’m honest, I had the idea in my head of having to make a phone call to the caregivers or the health insurance company every once in a while and make a few referrals. However, I quickly noticed that the list of tasks became a novel. The more dependent someone becomes, the more you have to take from them. A person is not only made up of his or her basic care. Bills still have to be paid and the sister’s visit to Dresden has to be organized. In addition, a new coat for the winter must her. Oh yes, we’re out of deodorant and toothpaste, and next week we have to see the neurologist. To control that remotely is really difficult without reliable communication. At some point, I could no longer rely on what my grandmother told me. More and more often she forgot things or did not remember what she wanted yesterday. The diagnosis of dementia followed after two years in the nursing home. So I was dependent on the reliability of third parties.
The limits of nursing and care
It was no problem to get the powers of attorney and dispositions, i.e. legal representation. The "paperwork" with the nursing care insurance company and the Medical Service of the Health Insurance (MDK) was also easy to manage. The support of the nursing staff in the nursing home helped me a lot in this respect. The classification in care level 3 (Note. d. Red.: today care degree 4 or care degree 5) went off without a hitch. Everything seemed to go well for the time being.
Over time, I learned about the real challenges of coordinating care from a distance: even though part of basic care is "activating people communicatively," that doesn’t mean a caregiver can take the time to go for a walk with grandma and chat a bit. There are always situations in which it was difficult for me as a family member to find out what the nursing home does and where I have to become active myself. It starts with the question when to buy new shampoo or toothpaste and ends with the decision when grandma needs new underwear or pants. The Internet can only help to a limited extent. I remember once ordering undershirts from an online store and sending them to the address of the nursing home. They were stupidly too big and had to be sent back again. This is difficult when there is no one on site to take care of the return shipping.
More and more, I found myself asking: how much "care" can I expect from a nursing home? If I wasn’t there for three weeks, I had to put up with the stress. B. I noticed that the flowers in the room had dried out. Once she got a new walker. Nobody was informed about this, the nursing care insurance simply sent the rollator to the nursing home. The problem was that this huge package with the walker was standing in the middle of the 12 square meter room and nobody opened it. Data protection, as it was explained to me. Why does no one tell us that the room has been blocked for two weeks?? You don’t need instructions for that.
When Grandma had been living in her room in the nursing home for a few months, we talked about how nice it would be to have our own little refrigerator in the room. "That’s no problem, grandma, we’ll get you a mini fridge for the corner." Grandma seemed thrilled. But two weeks after the refrigerator was delivered, connected and filled, I had to find out that the contents were moldy: The power cable was pulled out because the device was too loud at night. But no one in the nursing home seemed to think that the refrigerator would have to be emptied as well. Of course, it’s not the job of a caregiver to empty grandma’s refrigerator. But the fact that even the smell didn’t elicit a reaction from anyone stunned me. An info to me would have been helpful.
Sometimes I have the feeling that informing the relatives in the nursing home is not taken very seriously. And somehow this is also understandable. Caregivers are already overburdened with their actual duties. I would also reduce communication with the relatives to the bare minimum if I were in her place. After all, the nurses alone lack the time for their practical care and support. Something urgently needs to be done in nursing.
Being present as a mouthpiece
The experience that information is sometimes difficult to obtain, I have also had to make with the family doctors, specialists, the hospitals and physiotherapists. And this problem is aggravated by the shortage of skilled workers, at least in our region: not only nurses for the elderly are lacking, but also physiotherapists have become a rare commodity. Physiotherapy units must be prescribed, but getting a prescription is – at least for those with statutory insurance – very difficult. One knows about the increased need, but there are simply not enough physiotherapists. What helps: not to be deterred by supposed capacity limits. In such cases, I try to get people on the phone personally and explain the urgency to them. It doesn’t always work, but my odds are getting better.
What surprised me a lot was the fact that there seems to be a huge conflict between inpatient physicians and outpatient practitioners. My grandmother’s family doctor relatively often doubts the credibility of hospital diagnoses. As far as I know, there is no such thing as a consultation system. It sometimes seems to me as if disagreeable patients are shunted from outpatient to inpatient treatment and back again from there. A bit like no one really wants to deal with it conclusively. I find it all the more important to never leave the grandma, who simply can no longer express herself properly and defend herself, alone when it comes to medical care. This was also suggested to me by the nursing staff: People suffering from dementia actually always get a raw deal when it comes to nursing care in hospital. As the "care coordinator" of a dementia patient, I now increasingly see it as my duty to be present as a mouthpiece. Especially during doctor and hospital stays, it is important to help out personally and not to rely on the system of general care.
"In order to really achieve something, I sometimes annoy people"
I am always annoyed that certain information is not given to me, neither by the family doctor nor by the nurses in the home. Then I wonder why digitization in the area of nursing communication is not finally catching on. How easy it would be if doctors, therapists, caregivers and family members with appropriate powers of attorney could share information via a website or app? That would simplify a lot.
I have found a way for myself that works quite well, but is by no means the best: I discuss certain things with a nurse, for example., that I need to get something or that I have an important doctor’s appointment, by WhatsApp. So via their private cell phone number. That means that the line between me as a "customer" and the nurse as a private person is blurred. Sometimes she writes to me late after she has finished work. Actually an absurdity, because the professional burden increases even more in this way. But for them it is all right. And this way the processes just work better for me as well. A commitment is made that doesn’t work when calling the ward: First of all, I never know who is talking to me. Secondly, I can’t be sure whether the information is being passed on. Thirdly, the nurses themselves sometimes have different levels of knowledge and are therefore unable to provide reliable information.
It sounds outrageous, but what has worked for me is to simply give people a deadline, z. B. "I expect to be called back by 5:00 p.m.".
Having a regular person at the nursing home to talk to is worth its weight in gold. Otherwise, unfortunately, the only thing that helps is to remain persistent and to annoy people a bit. It sounds outrageous, but what worked for me was to also just give people a deadline, z. B. "I expect to be called back by 5:00 p.m." It does make you feel a bit like those special mothers at school, trailing behind the teachers and questioning their pedagogical approach. But ultimately you achieve so simply more.
I advise everyone who organizes care from a distance not only to clarify exactly the responsibilities of the caregiver, but also to play through the possibility of health deterioration. Call regularly and ask if there is a need for support. Ask for the names of the people you have spoken to. When visiting your loved one at the nursing facility, always speak briefly with the nursing staff as well. Get if necessary. Get help from a senior assistant who can help you organize and take care of your needs.