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Support possibilities

How can I support my loved one?

In addition to emotional support, there are many ways to support your loved ones in everyday life. We listed some options for you. However, remember that there is no perfect way to support. Try to find a healthy balance for yourself and your loved ones that allows you all to live as fulfilling of a life as possible. Also, pay attention to your yourself and your needs.

Self-help groups

Here, you can openly exchange information about your situation with other patients or simply talk to people who are experiencing similar things as you. The emotional cohesion that comes from such groups can be invaluable.

Emergency numbers

Make sure that all relevant people have access to emergency numbers and know what to do in case of an emergency. This creates security for all involved if something should happen.

Learning together

Offer to be involved in the learning process about dialysis as much as you can. The more you know, the better you can support and understand their situation.

Appointments

It can be helpful to accompany the patient to important medical consultations, especially if your relative’s / friend’s mental capacity is impaired. In particular, the decision for a suitable form of therapy should ideally be supported by the patient’s family and friends.

Medication plan

Make sure that your relative / friend adheres to their medication plan that was set up by the attending physician. Medication therapy is designed to relieve symptoms of kidney disease and to preserve any residual kidney function for as long as possible. Failure to follow the medication regimen can lead to serious complications.

Diet

Encourage your relative / friend to follow dietary guidelines given by the healthcare team, as this can have a significant impact on the success of the treatment. You may enjoy trying out new recipes together.

Hygiene

Especially when choosing a home therapy method, it is very important to carry out the treatment steps in a sterile way and to observe hygiene measures. For your loved one it is important to take care of the catheter exit site or the shunt to avoid infections and complications.

Being a partner during dialysis

For some patients, a trained partner is needed to carry out the treatment. If the decision is made for home therapy, you can be trained in the use of the necessary materials as well as the correct implementation of the treatment. You can learn together and support each other. In an emergency, it can also be helpful to have another person who is familiar with the details of the treatment.

Suddenly finding yourself in the role of the caring partner in dialysis can be scary. You may wonder if you can obtain the necessary knowledge to help your loved one. You may also wonder if you can take on this role in the long run.

Open communication is essential! Remember that you are not only assisting with the treatment, but also maintaining a relationship alongside dialysis. For your long-term mental health, it is important to know your own stress limits and to communicate these. Only if you take good care of yourself will you have the strength to help. If your assistance is based solely on a sense of obligation to your relative and you ignore your own needs, you risk burning and becoming overwhelmed. Likewise, you may develop an unconscious aversion to the treatment, which could be perceived by you as a strong obligation and burden.

Try to see your relative and yourself as a team. Together, you can tackle the treatment and live the longest and fullest life possible.

Your loved one and you should carefully consider how you will support your loved one during treatment.

Talk openly with your relative / friend about how you both can imagine possible assistance with dialysis. If you find that you cannot assist with treatment in the long term, there are still other ways to support.

Where can I seek for help?

Dealing with chronic kidney disease is a challenge not only for the person affected. It is understandable that you are concerned about the well-being of your family member or friend and want to support them as well as possible.

However, it is also understandable if you feel overwhelmed by the situation, especially in the beginning stages. It is important to take small steps for everyone involved during these early stages, for example, your loved one can focus on one physician's appointment at a time or keep a patient diary.

You will notice that over time a new daily routine will establish itself and all of you will find it easier to deal with the disease and related necessary changes. Nevertheless, take good care of yourself. Your physical and mental health are equally important. If you feel that you cannot cope with emotions such as pressure, responsibility, worries, and fears (any longer), seek advice!

You can find support from many people: From your loved one’s healthcare team, to your own family and circle of friends, to professional carers and organizations that specialize in working with people who have kidney disease.

Nursing services may be able to assist with your relative’s / friend’s care in different ways. From paramedic services to complete dialysis treatment in the home environment (assisted peritoneal dialysis), a wide range of support options may be found in your area to support you.
Social workers can help in many areas, especially when it comes to benefits, financial support, and existing entitlements.

Seeking therapeutic help does not mean failure, nor is it a reason to be ashamed. Confronting a chronic disease poses challenges to the soul that may require a professional approach to overcome them.

Always be aware: neither you nor your loved one need to walk this path alone!