Families and caregivers

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Living with kidney disease is not something you should go through alone. Nevertheless, family dynamics often change when one member has a chronic illness. The people closest to the patient are often emotionally affected, but it doesn’t have to be a negative experience. In fact, living with kidney disease can, and often does, bring the family closer together. Over time family life can reach a new norm, different than before, but just as valid.

There are many people who form part of a support system, from family and friends, to healthcare professionals. Remember, you are not alone. Your social worker can guide, advise and support you in many areas, particularly regarding social services and financial resources.

The impact on family life

The impact on the family life

Time management

A patient who needs dialysis for three days or nights a week in a center, needs good time management to balance their dialysis schedule with other activities, and needs as well. That time-balancing-act may well take a few weeks to adjust and figure out a new schedule that works for you and your family.

Nutrition

As limits on the intake of potassium, phosphorus, salt and fluids are often recommended for people with kidney disease, meal preparation has to be adjusted for the patient and their family. For more information, please consult your doctor, nurses or dietician.

The impact on the patient

The impact on the patient

How kidney disease feels physically

The symptoms of kidney disease may physically include the feeling of having a flu all the time. For example, the person with kidney disease may feel:

Tiredness and weakness

They may feel tired and weakmaking it hard to manage walking up a flight of stairs or taking a walk around the block. They may feel the need to sleep more than they usually do.

Coldness and temperature

Feeling cold all of the time, as if they have a fever.

Lack of concentration and forgetfulness

They may have trouble concentrating or may forget things more than is usual for them.. These symptoms are most often due to anemia - a shortage of red blood cells - which can be treated.

Other symptoms which sometimes occur

Swelling

A person with kidney disease has kidneys that aren’t removing fluid. Subsequently, swelling may occur in the feet, ankles, hands or face. So that sometimes they can’t put shoes on. Extra fluid in the lungs can make it hard for them to breath. And that difficult breathing may sometimes be mistaken for asthma or pneumonia. Having too much fluid can also strain the heart, particularly for someone whose heart is already weak due to congestive heart failure or other problems.

Restless legs, insomnia and phosphorous itching

Many symptoms are often treatable – consult the patient’s doctor for guidance.