The person in your care refuses outside services

Subject Protecting yourself so that you can better help

The person I am caring for refuses outside services.

Is it the fear of losing you? Fear of abuse? Distrust? Pride? Shame? The situation is worrisome: the person you are caring for refuses to use outside services and support. You have questions.

Underlying this refusal of outside help, something is being expressed by the person being cared for. There are sensitive issues at stake: trust, consent, dignity, independence.

The person being cared for resists, despite the discussions you try to initiate. Faced with this situation, you must deal with this person who refuses outside services, try to negotiate, dialogue and understand.

What are the cases that can arise and what are the consequences for you? How can you work together to find home care services when you now have to prepare meals and buy groceries for the week?

Play Video

Dr. Alain Bestavros is a hemato-oncologist at the Cité-de-la-Santé Hospital. In the video, he stresses the importance of time: there is sometimes a gap between what the doctor understands, what the patient deciphers and what the family and friends grasp.

Case study

Examples

Feeling of invasion of privacy

A sick person wants only his brother to take care of him at home. The caregiver, initially flattered, becomes increasingly exhausted.

Risk of disruptive behaviour

The caregiver knows that if an outsider helps, the person may become agitated. The caregiver wonders what to do

Dementia, neurodegenerative diseases

The person with cognitive disorders refuses any outside assistance except that of the caregiver. The caregiver feels in an uncomfortable and delicate position.

Denial of the disease

The spouse of a caregiver does not want her spouse to receive help with housekeeping. She says she can do it herself. The caregiver knows this is unrealistic and wonders how to deal with this situation.

Fear of loss of independence and autonomy

The husband has cancer that affects his motor skills. The home must be adapted. He does not want to see the rooms he has so carefully designed changed by someone he does not know. The caregiver has run out of ways to convince him.

Not asking for help

The person flatly refuses any form of help at home. The caregiver is also pressured not to ask for any kind of services for themself.

Dr. Alain Bestavros

Hemato-oncologist at the Cité-de-la-Santé Hospital of the CISSS de Laval

When we realize that our health condition will deteriorate, that we will need help from all kinds of people around us, perhaps the reason behind this refusal of help is more a denial of the situation itself.

Does the person I am caring for have the right to refuse services?

You cannot force the person you are caring for to set up home support services, move or even consent to health and social services. They must give their free and informed consent, which means they must do so voluntarily and with all the information they need to make their decision.

The only exceptions to compelling a person to consent to care or services include:

Emergency situations;
Immediate danger to life (integrity threatened);
Consent cannot be obtained in a timely manner;
The person is declared incompetent.

Ten tips for transitioning to home care

Start gradually with a few hours a week, with basic services;
Present the service to the person as a trial rather than a commitment;
Listen to what is behind their resistance: fear of lodging, lack of confidence, modesty, pride? Reassure the person about what they are afraid of;
Present the help as being for you rather than for them: “I worry less about you when you are not home alone;
Let them know that home help will reduce your level of exhaustion and that you will be better able to care for them longer;
If applicable, remind the person that home help is a recommendation from the doctor, nurse or social worker;
Try to reassure the person being cared for of their own identity, to recognize them as a capable individual with control in which they feel a part of the request for help;
There may be cultural barriers for the person you are caring for, but perhaps for yourself as well. You could discuss this with a Caregiver Support counselor, or play the Proches Aidants! game [in French].
Set your own boundaries. This is a safeguard against burnout;
Explain the benefits of home care services (e.g., safety)

Questions and possible solutions

After talking to my family and friends, I decided to stop doing certain tasks. I couldn’t take it anymore. I feel so guilty sometimes…

As a caregiver, it is normal to feel guilty at times. This feeling generally arises when there is an imbalance between our values and our behaviours. This feeling is often unpleasant, painful, constraining or invasive, and can lead to exhaustion and even depression. It is important to unload the burden of guilt in order to feel better about ourselves and our role as caregivers. Don’t hesitate to seek support for any feelings of guilt you may have.

Is there financial assistance for home care services?

Yes! The CLSC’s service employment paycheque enables the person you are caring for to choose a caregiver in exchange for a financial stipend.

What exactly does a home care aide do? I need details to discuss this again with my elderly mother who is ill…

Home care includes personal assistance (bathing, dressing), domestic help (housework, meal preparation, grocery shopping, laundry) or medical care. You and your mom can watch this episode of the Caregiver Podcast hosted by Marina Orsini [in French] on home care. You’ll discover the story of Lyne and her mother, for whom the Home Care Cooperative Les Moulins makes daily life easier.

I tried everything to convince my husband. He doesn’t want to hear about it. I am discouraged and tired. What are my options?

It is important that you express this discouragement and fatigue to your spouse. Why not make a complete list of all your tasks and responsibilities to make them aware; this may help them understand the scope of your role as caregiver. Look at how you can free yourself from certain tasks (spacing out the frequency of certain tasks, prioritizing those that are more important). Finally, you could ask for support from those around you to share the tasks and responsibilities.

We had a negative experience with a home care worker. Now my sister doesn’t want to hear about it! How can I change her mind?

Encourage her to try again. The experience will likely be different with a new agency, new professionals, perhaps also with a different type of service.

It’s really hard to find outside services! Is there a framework to assist us?

Your CLSC offers home support services. A resource directory allows you to find services in your area. You can contact a domestic help social economy business (EÉSAD) or contact our counselors at the Caregiver Support Helpline: they are there to listen to you and direct you to the resources and services near you.

In the case study list, my situation is very similar to that of not wanting to get help. I really need help.

Sometimes it’s important to let go, especially if your own health is affected by the demands of the situation. Why not make a list of existing resources and give it to the person you are caring for? Also, don’t be left alone. We suggest the contacts listed below. You will find that there are people who care about your situation.