Guest Contribution from a Relative: The Healthcare and Nursing System

 

Navigating the health and care system is not always easy, especially when a loved one suddenly requires care. What happens now? What do I need to do? Who do I contact? Stefan S. faced these and many other questions when his mother suddenly received a cancer diagnosis. His mother's health rapidly deteriorated, and from one day to the next, not only her life but also his own was turned upside down.

Experiences with the Health and Care System

Over the past few months, I have had close-up experiences with the health and care system. My mother's health deteriorated rapidly within half a year. In a very short time, she lost her independence and became reliant on the constant help of others. I accompanied her on her journey from an independent woman with her own household to a terminally ill resident of a hospice.

My mother already struggled with several pre-existing conditions at the beginning, such as very high blood pressure, knee joint problems, and fluctuating blood sugar levels. One night she woke up to go to the bathroom and fell, without being able to say why. Shortly before, I became aware of the Gardia emergency wristband and, after her first fall, seized the opportunity to register her for the testing phase. We were selected and had the chance to use the wristband. This was followed by two more falls within a few weeks, which could be detected by the automatic fall detection of the Gardia emergency wristband.

Unfortunately, my mother's health continued to worsen during this time, and she developed additional circulatory problems, especially while showering. Moving around the house became increasingly difficult for her. The falls had made her very insecure, and she barely dared to navigate the stairs alone anymore. In addition to these limitations, her mental state also deteriorated. The loss of her mobility greatly affected her, and she began to change mentally. After the limitations had so severely impacted her daily life that her routines had to change significantly, frequent visits to the emergency room followed.

The transformation from an independent woman who led her own life to a helpless elderly lady within a few weeks could hardly be explained by signs of aging. I took her to emergency rooms multiple times and called emergency services when she fell at home. However, my mother was always discharged after brief examinations, and no one carefully investigated her symptoms. At this point, she was no longer able to clearly and understandably describe her symptoms independently. As soon as a patient loses this ability to explain their suffering, relatives must take over, otherwise the patient will not be adequately treated and the situation will not be understood by the doctors.

After numerous contacts with emergency services and futile visits to emergency rooms, I became increasingly desperate. In my helplessness, I spoke with many friends and acquaintances. Through doctor friends, I was made aware that after a fall followed by a seizure, an MRI of the head must be performed. So I called emergency services and said that my mother had fallen and had a seizure on the floor. Through this white lie, she was finally properly examined. That evening she received the terrible diagnosis: brain tumor. This was followed by a rapid operation, which entailed life-threatening risks.

In the hospital, my mother could only sign the power of attorney for healthcare; it was barely possible to discuss a detailed living will with her, as she was already struggling with cognitive impairments. At that moment, I wished for better preparation and can only recommend to everyone to create these two important documents with their relatives.

After the operation, several weeks in an induced coma followed. During this time, it became apparent that nursing care would be necessary, at least temporarily.

Private Health Insurance: Pros and Cons

I quickly realized that private insurance offers advantages for getting appointments for preventative check-ups, but after a serious diagnosis, it is a much greater bureaucratic effort to pay all bills from the policyholder's account and submit them to both the private health insurance company and the state aid office for reimbursement. The first challenge here for relatives of privately insured individuals is gaining access to the care recipient's account to pay the bills. The bank requires an account authorization signed by the account holder. It can be helpful to have this already on file for emergencies. In my case, I was able to get tips from her former teacher colleagues to understand how these bureaucratic processes work.

 

You should take preventive medical check-ups seriously!

Looking back, I also wonder if the situation with my mother could have been improved through regular preventive check-ups. Think of your loved ones and take preventive check-ups seriously for their sake too. Not only do you lose quality of life due to illness, but your relatives also have to take care of you, if necessary, should you become seriously ill.

Hospital Stays

After the serious operation, she spent several months in the hospital. While my mother was in a coma, I received the incidental information that not only did she have to recover from the consequences of the operation, but she also had advanced lung cancer that had already metastasized. We received the diagnosis that the cancer was no longer curable and could only be treated palliatively. First, she recovered in the intensive care unit of the hospital where the operation took place, and then she was transferred to another hospital for further treatment.

 

Care options after hospitalization

The hospital's social service department contacted me as a relative and explained the options for further care. Here, relatives and their commitment are crucial for the person in need of care. As soon as it becomes apparent that care is required, the health insurance company should be contacted and an application for care benefits should be submitted. I was able to download this application from the health insurance company's website. In the course of submitting the application, it is asked whether further care should be provided at home or in a care facility. After submitting the application, an assessment follows, in the form of a visit, of the person who is to receive care benefits. This assessment is carried out by an assessor from Medicproof, who gets an impression of the health condition of the person to be cared for and asks some questions about independence.

It is of course important to clearly state the extent of the restrictions in daily life. This procedure can take several months until a final confirmation for the care level is received. Since my mother, as a former teacher, was privately insured, I was also able to contact Compass Care Consulting to obtain information about the measures available to me. Parallel to the application for a care level, the hospital's social service department submitted an application for the granting of a provisional care level. In this case, a decision is made based on the existing records. This provisional care level is an accelerated procedure that can provide access to provisional benefits within a few weeks. Care level 2 is now required for admission to a nursing home.

Full-time caregiver or nursing home?

During this hospital stay, I discussed the long-term options with my mother. Either care at home with a full-time caregiver or placement in a nursing home. My mother, of course, wanted to live at home in her familiar surroundings for as long as possible. It was clear to me early on that it would be very difficult to care for her at home if she really couldn't walk alone anymore. However, if her mobility returned, I would do everything to ensure she could be well accommodated at home.

Rehabilitation Measures

After weighing the options, we initially decided to apply for rehabilitation measures. This application was also submitted by the social service. Since my mother could no longer walk, neurological rehabilitation was unfortunately not an option, and an application for geriatric rehabilitation with physiotherapy was submitted. The geriatric rehabilitation again took place in a different hospital and included about 2 ½ weeks of daily physiotherapy. During this rehabilitation measure, it became clear that her mobility would not be restored by the end of the measure.

Short-Term Care

For individuals who are not yet able to manage their daily lives alone after a hospital stay, there is the option of short-term care. This involves care in a nursing home or senior residence. Depending on the care level, this can extend up to 28 days. Here, the hospital's social service can be asked to look for a suitable vacant care place, or a relative can call nursing facilities and inquire about available places. After consulting with my mother, the placement should be close to home. I independently found a nursing place and inquired with acquaintances whether the nursing home was recommendable.

In the course of this, I had numerous legal questions and, fortunately, the opportunity to address them to lawyer friends. Additional legal security for open questions regarding care can provide significant relief.

The time in the nursing home was difficult for my mother, even though the facility and its staff did their best. As a seriously ill person, she had different needs than the other very old and often demented residents of the nursing home. Since her mobility had not returned, even after weeks of physiotherapy, it became clear to me that accommodating her at home would be very difficult. In general, her health and emotional state deteriorated rapidly during this time. She found it increasingly difficult to find joy in her life situation. The situation also placed a significant emotional burden on me as a relative. Here is an overview of counseling centers for caring relatives – don't hesitate to get information there.

Hospice

During this time, her friends brought up the topic of hospice, as intensive care for terminally ill people can be provided there. First, I searched the internet for contacts and hospices in the region.

I quickly became aware that placement in a hospice after the start of long-term care in a nursing home is only possible if the care of a person in the nursing home no longer seems feasible. At the end of short-term care, terminally ill people must decide whether placement in a nursing home or a hospice is more comfortable for them. When someone chooses the path to a hospice, they forgo comprehensive further treatment of the illness. Only the symptoms are treated, and the remaining time of life is made as pleasant as possible.

It is important to note that hospices maintain waiting lists, and it is common to be on several waiting lists simultaneously to increase the chance of getting a place. Since I was prepared for a long wait, I immediately put my mother on several waiting lists after the idea arose. At this point, my mother had already expressed the wish to spend her remaining days in peace and without further chemotherapy. The suggestion to go to a hospice was therefore not far-fetched. Addressing the topic and making a decision about it is, of course, emotionally heavy and highlights the finality of life's end. By the end of short-term care, my mother was still waiting for a hospice place and therefore underwent a final examination in the hospital to assess her health. The conversation there with the doctors, whom I informed that my mother did not want further treatment and wanted to go to a hospice, was accordingly unpleasant.

The Decision

The doctors wanted to continue treatment, even though no cure was possible. They advised me to seek further counseling and questioned the decision. I didn't want any doubt to arise that my mother truly wanted to make this decision and referred the doctors to speak with her themselves. Such a decision must be made independently and from one's own initiative, without regard for others. After a delegation of doctors, psychologists, and social workers had spoken with my mother and she remained firm in her decision, the hospital's social service also set about finding a hospice place for her.

Two days later, I received two calls in the morning from hospices that would admit my mother. The first confirmation came from a more distant hospice that I had not yet visited and where construction work was taking place, accompanied by noise. Initially, I accepted this offer, but half an hour later, I received a second call from a nearby hospice that I had already visited. Having seen the hospice before gave me greater reassurance that my mother would be well cared for there, and after consulting, I revoked the acceptance of the first offer. My mother was to move into the hospice the very next day. The following morning, I was there when she was transported by ambulance from the hospital to the hospice. The path to the hospice was a difficult one, making it even more real that my mother would soon die. On the other hand, I am really glad that she got a place there and is being cared for as well as possible during her remaining time. I visit her daily now and can simply be a son and make her time as pleasant as possible, without having to worry about her care 24/7.

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At this point, we would like to sincerely thank Stefan S. for this guest contribution and wish him and his family all the best. If you would also like to share your story with us and other relatives, please feel free to send us an email to support@gardia.net.