When caregiving disrupts the family balance

There may also be tensions between you and the person you are caring for, especially when the illness changes their behaviour or they refuse help. In all cases, the situation can become stressful and even lead to exhaustion.

To help us understand, we submitted three examples of conflict situations to Charlotte Beaudet, clinical coordinator at Caregiver support Helpline. She offers concrete advice and invites you to communicate, recognize your needs and set your limits.

Example #1: some of the behaviors of the person you are dealing with lead to an argument

You are the spouse of a person living with Alzheimer’s disease.

You notice that the cognitive symptoms of the person you are caring for are getting worse. Some of their behaviours are leading to arguments: they follow you around the house, they are not able to perform tasks that seem simple to you, you are compelled to repeat the same instructions over and over. You get the impression that they are not listening, or even that they are doing it on purpose.

You feel stressed, helpless, even nagged, and that’s when the tension starts. Charlotte Beaudet reminds us that “even if you have a lot of patience, being confronted with the disease, realizing that your spouse is living with a degenerative disease and that they are never going to return to their former abilities is very challenging.”

Charlotte offers some helpful suggestions:

• If the person you are caring for is following you around, they may be anxious and unable to express it. It’s not always clear which behaviours are caused by the disease and which are not. Become informed about the disease. This will help you gain perspective and a better understanding of how the disease is progressing and how it is affecting you both. By learning about the next steps, you will know what to expect and be better prepared.

At the Caregiver Support Helpline, we listen to you and invite you to participate in our training sessions.* We help you find useful tips. We also refer you to organizations that specialize in neurocognitive disorders, which can provide you with a follow-up and advice that is tailored to your situation.

• Determine your limits and don’t be afraid to reassess them. You are only human, your energy fluctuates, and so do your abilities. What you felt capable of doing six months or a year ago may now seem impossible. This feeling is perfectly normal. Remember that you are doing the best you can within your abilities and limitations. You don’t have to feel guilty about setting limits.

Example #2: you disagree with your family members about how to care for your parent

You are a daughter caring for a parent with a neurocognitive disorder.

When families can’t agree on what decisions to make for a sick relative, it can be a real headache. Can they stay at home or would assisted living be a good idea? Who is responsible for their care? Finances? Should a protective power of attorney be established?

Judgments can be a source of conflict within a family. On the one hand, you feel that your siblings are relying on you too much because “you’re a girl,” “you have more time, you don’t work,” “you know the medical system better,” “you don’t have children at home anymore,” etc. On the other hand, you feel that your sister could be a little more involved because, as you see it, she has more time or ability than you to care for your family member.

Sometimes unresolved issues from the past resurface and prevent us from making progress peacefully.

Charlotte offers some helpful suggestions:

• Determine your own needs. You have control over what you can offer, not what others can do or what your ill parent wants.
• Try to put yourself in your siblings’ place. You don’t know all of their constraints and limitations. Maybe your sister doesn’t feel able to do more right now, maybe your brother can’t accept your parent’s illness.
• Communicate and make your expectations clear to those around you. Communication is the first step in easing tensions. By voicing your needs, your siblings will better understand what you are going through and will be more inclined to help you.
• Get support! If you don’t know how to proceed or if the disagreements are too significant, you can get help from organizations that offer mediation or from the Public Curator for matters concerning the protection mandate. You don’t know all of their constraints and limitations. Maybe your sister doesn’t feel able to do more right now, maybe your brother can’t accept your parent’s illness.

Example #3: your child refuses to receive help

You are the parent of a young adult with an intellectual disability.

You do the best you can, but you are still overwhelmed. Your child does not feel they need outside help. The tension becomes noticeable.

If your adult child refuses this support, the CLSC will not provide any services to them, as they are considered the client.

Charlotte offers some helpful suggestions:

• Explain to your child why you want help. They may be sensitive to the fact that it’s not for them, but for you, because you’re managing so many tasks. Not to mention that this help would allow you to spend more quality time together. Some services, such as household chores, are easier to accept.
• Try to find compromises based on their abilities and your limitations. For example, you continue to bathe them, but they agree to take care of their own clothing.
• Set your own limits, try to respect them and have them respected. This is a big challenge, but it can be a safeguard against burnout.
• Talk to your child about your fears. Accepting help, for both of you, can prevent or delay their being placed in residence. This is a powerful argument.

Help to regain your balance

Managing family conflict is a complex process. If you feel like you’re at a dead end, don’t hesitate to seek help, for example, from the Caregiver Support Helpline. Who knows? If the situation improves, the ties that bind you may grow stronger. You might even reconnect with each other. The important thing to remember is that everyone wants what’s best for the person being helped.

Resources—like the Caregiver Support Helpline—provide a caring, non-judgmental environment. They are there to help you take the steps, one at a time, to help you strike a good balance, while always respecting your own limits.