A diagnosis of dementia is always upsetting.
The person who has been diagnosed might be in denial or totally devastated that they could become a burden to their relatives. Their family is worried about how they will balance being a caregiver with other demands, and what it might be like to see a loved one’s personality slip away. The truth is, they should be worried not just about how the dementia will progress, but how it will affect the entire family dynamic.
If you ask most (mentally competent) seniors what they want, it is to be independent. They want to make their own decisions, live at home for as long as possible and do things for themselves. Unfortunately, dementia can take away someone’s ability to make sound decisions. And yet, they don’t plan for exactly how their wishes can be upheld as the dementia gets worse.
Here are 3 things people should be doing as soon as a relative is diagnosed with dementia.
1. Have a Family Meeting – and Talk About the Future
Too often, “one day” seems far away. A person with early dementia may plan to speak with his or her family once the disease is a bit further along. But as they get worse, they may forget they ever planned to hold such a meeting.“I’ll do it later, I’m still fine”. But this is a dangerous path. A person with dementia should call a family meeting while they are still mentally capable of making their own decisions and telling everyone – at the same time – what their wishes are. Then, at a later date, the family should be able to implement the plan rather than fighting over whether mom should be in long-term care, or whether dad should get a feeding tube put in when he stops being able to swallow.
2. Sign the Legal Documents
Once future wishes are known, it makes sense to put them in writing. In Ontario, this is usually in the form of a Power of Attorney for Property and a Power of Attorney for Personal Care. In these documents a person is appointed as the “attorney”, and they will take over decision-making when the person with dementia can no longer act for themselves. Importantly, powers of attorney can also state when they come into force. In an effort to protect autonomy, some people actually – unbeknownst to them at the time - make it very difficult for their family to step in and help when the time comes.
For people with decent size estates, it is also worthwhile to speak with financial and legal professionals who can help with wills, tax planning and perhaps even setting up trusts to minimize paying the tax man at the end of life.
As a person’s dementia progresses, they might lose the mental capacity to sign legal documents so it’s important this planning happens very early (ideally after the family meeting, so that the legal documents mirror what was said and there are no surprises). Without powers of attorney, sometimes it becomes necessary to apply for adult guardianship. While we are happy to help clients take this step, the reality is that it’s entirely avoidable in most cases.
3. Your Siblings Are Suspicious of You
Whether or not you’re a live-in caregiver, a health care or financial professional, or the person acting under powers of attorney or guardianship – there is a good chance your siblings are questioning your motives. After all, you’re questioning them, aren’t you?
People with dementia are vulnerable to financial abuse. People who stand to inherit money want to protect their inheritance. That’s only natural, but the combination can get ugly. Sometimes it ends up in lawsuits. You probably don’t want to be in litigation with your siblings. And you definitely don’t want to pay the legal fees!
We’ve come to learn that it pays dividends to get legal advice early on if you’re managing someone else’s money. Or if your sibling is managing the money and you want to ensure they don’t squander it, since mom or dad need that money to live on (hopefully for many more years).
Finally, since your siblings are suspicious of you, you should be weary of doing anything that could be perceived as coercive or manipulative (even if you actually have good intentions). If you end up having to go to court, it can come back to haunt you later - especially when you have to pay for everyone else’s lawyers if you lose. It’s better to be a little paranoid and very knowledgeable at the beginning, and do things right from the start. Your family - and your bank account - will thank you.
If your parent has dementia, give us a call today. We can help you understand and comply with the law if you're acting under a Power of Attorney, or we can help you apply for guardianship if it's too late for your parent to make a POA. Either way, we've got your back.
Prefer to text? You can reach us at 416-937-8768.
Prefer email? Email Lisa directly at lisa@lisafeldstein.ca.
through a difficult time?
