ILS Care Library

Part 7 · The caregiver

There are other paths, supports, and rights

Content under professional review before publication.

1Supports exist, and they are a right

The problem

Many families believe that caregiving is something you do alone, in silence, on your own strength. And they burn out without knowing that, in many places, there are supports they are entitled to and that no one told them about.

What is happening underneath

Asking for help is not failing: it is caring better and lasting longer. The first step is not to solve everything, but to find out what exists in your place.

Step by step

  1. Find out what supports exist in your country or city. Depending on the place, there may be: home caregiver help, adult day centers, respite care (someone who relieves you for a while), technical aids (wheelchair, bed, grab bars), and subsidies or benefits.
  2. Look through several channels: the social worker at the clinic or the hospital, the office or agency for older adults or for disability in your area, and patient associations (Alzheimer's, Parkinson's, and others).
  3. Always ask "what supports exist for this situation?": many are not offered on their own, you have to request them.
  4. Write down what you find out and keep the contacts: these procedures take time and it helps to have everything together.
  5. Lean on other families who have already been through this: they often know shortcuts that no brochure explains.

What you must never do

  • Never take it for granted that "there is nothing": often there is, but it is not in plain sight.
  • Never settle for a single "no": ask elsewhere, the answers vary.
  • Never carry it all alone until you burn out: that ends up harming both of you.

When to ask for help

The social worker is the key person to guide you about supports and procedures. The supports and the requirements change a lot from one country to another: look up the ones for your place.

2The team of professionals you can add

The problem

Sometimes a single doctor is expected to solve everything. But caring well for an older person or one with reduced mobility usually needs several perspectives, each expert in something different.

What is happening underneath

Treating an illness is not the same as caring for the whole person: their body, their mind, their home, and their mood. A team covers what one person alone cannot.

Step by step

  1. The geriatrician is the doctor specialized in older people: they manage several illnesses at once, care for function and quality of life, and distinguish what is illness from what is part of aging.
  2. The occupational therapist helps make daily life easier and safer: how to bathe, dress, move around the home, and what to adapt.
  3. The physical therapist works on strength, balance, and walking, and helps prevent falls.
  4. The speech therapist works on speaking and, very importantly, on safe swallowing when difficulty eating appears.
  5. The social worker guides on supports, procedures, and resources; nursing teaches care and wound care at home.

What you must never do

  • Never think that asking for more perspectives is "being a nuisance": it is the care the person deserves.
  • Never set aside swallowing, mood, or the home by attending only to the illness.
  • Never go without asking which professional you can be referred to.

When to ask for help

If the person has several illnesses, many medicines, or has lost autonomy, ask for them to be seen by a geriatrician and build their team little by little. The primary care doctor can help you with referrals.

3Changing the path and the professional is your right

The problem

Many families stay with the first doctor, the first diagnosis, or the first answer, even when something does not quite work, out of fear of offending or looking bad.

What is happening underneath

Seeking another opinion or changing professional is not distrust: it is seeking the best care. It is a right of the person and their family.

Step by step

  1. If something does not convince you or does not improve, ask for a second opinion. A good professional does not take offense: they understand.
  2. For an older person, it is often worth moving from the family doctor to a geriatrician, who looks at the whole and not just one part.
  3. If a professional does not listen, rushes, or treats without respect, you have the right to change them.
  4. Bring to the appointments a list of questions and of the medicines being taken: it helps them understand you and decide better.
  5. Be the voice of the person when they cannot: asking, asking again, and requesting explanations is part of caring.

What you must never do

  • Never stay with care that does not work "to avoid making trouble."
  • Never change the medicines on your own when changing professional: have a doctor order it.
  • Never leave the person without a voice: accompanying them in deciding is respecting them.

When to ask for help

If you do not know whom to turn to or how to change, the social worker or a patient association can guide you. No one has to stay with the first path if there is a better one.

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