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Planning Caregiving for the Future

23 Nov 2017

While short-term caregiving usually doesn’t lead to increased demands on you and your time, long-term caregiving or caregiving for someone who has a terminal illness does. As your family member or friend experiences further decline in their abilities, you will likely experience increased caregiving demands and related stress. Planning for this is essential in managing stress, preventing burnout and achieving wellness.

Caregiving Input from Your Loved One

The first step in planning for future caregiving is understanding and considering your family member or friend’s thoughts and feelings before deciding what must be done. Talk to them. Check in on how they are feeling, what they are thinking about and how they want to be cared for as time goes on. If they are still capable of making decisions on their own behalf, ask them what their health care choices are and how they want their finances to be managed. At this point, it would be wise to establish powers of attorney, whether it be with yourself or with someone else that your family member or friend chooses. If they are not capable, you may want to consult the Office of the Public Guardian and Trustee on how to ensure that your family member or friend’s wishes will be respected.

Monitor and Adjust Your Caregiving Plan

You probably already know how well your family member or friend functions in daily activities such as cooking, cleaning, bathing and managing finances. Pay attention to any changes and to the bigger pictures of their personal, social and financial resources from which to build a caregiving plan that is responsive to their needs. Re-assess this picture on an ongoing basis. Observe and note the following:

  • How well do they complete their daily tasks?

  • Who are their closest and most available family members, friends, and neighbours?

  • Who are their current health care providers such as doctors, nurses, personal support workers?

  • What are the businesses where they shop or that provide deliveries?

  • Do they need help with meal preparation and grocery shopping?

  • How safe is their home (or your home if they live with you)? Will it still be safe for them in the future or will modifications be necessary? Are there mental and physical changes that could create safety concerns?

  • In knowing this information, you will have an indication of what kind of additional help might be needed in the future. Being prepared and making these plans in advance makes difficult caregiving choices easier in the long run. It’ll also decrease confusion and arguments between you, your family member or friend, and other family members.

Capacity vs. Incapacity as a Caregiving Consideration

If possible and appropriate, the whole family should be involved in planning for your family member or friend’s future caregiving. If the person is capable, they must be involved in the planning process. Your family member or friend’s involvement is critical to respecting and upholding their autonomy and right to self-determination, when culturally desirable. An important note here is to always assume that your loved one is capable, unless they have been deemed incapable by a capacity assessor.

Power of Attorney for Personal Care

Power of Attorney for Personal Care is a document. The person that is appointed is called an attorney for personal care. This person will make health care decisions on your family member or friend’s behalf, in the event that they are incapable of doing so for themselves. More than one person can be appointed as attorney for personal care. For example, you can give joint decision-making responsibility so that both parties have to agree on the decision or you can give one person responsibility for housing, nutrition and medical treatments and another person responsibility for physical therapy and other rehabilitative treatments. How your family member or friend arranges Power of Attorney for Personal Care will depend on his or her individual situation and preferences. But, it needs to be done while they are still capable of making their own decisions. If your family member or friend is incapable and no attorney for personal care has been appointed, consult the Office of the Public Guardian and Trustee at 1-800-366-0335 for a hierarchy of substitute-decision makers.

General Power of Attorney for Property

General Power of Attorney for Property is a document that is used if a mentally capable person wants to appoint someone to act on their behalf for a specific period of time or for a specific task. This type of power of attorney ends if the person becomes incapable.

Continuing Power of Attorney for Property

Continuing Power of Attorney for Property is a document that gives someone the authority to make decisions about finances, home and possessions. This power of attorney continues in the event of mental incapacity.

The nature of property and personal care decisions is very different and the rules governing these decisions are also very different. This is why it is necessary to have different documents for each.

Mental Incapacity

Mental incapacity can happen to any of us at any time in our lives. It’s not easy to think about, but it is important to plan for, especially when you’re caring for a family member or friend who may be capable now, but may not be in the future. If you have questions surrounding capacity assessment, contact the Office of the Public Guardian and Trustee at 1-800-366-0335. If your family member or friend has already been assessed and you are concerned about the finding, or you have concerns about your family member or friend’s substitute decision-maker’s compliance with the rules for decision-making, contact the Consent and Capacity Board of Ontario at 1-866-777-7391 or 416-327-4142.

For Power of Attorney kits and information, contact the Office of the Public Guardian and Trustee at 1-800-366-0335.

Dying, Death and Bereavement

Of all human experiences, death is among the most difficult to face. This perspective varies with different cultural beliefs and traditions. Some view death as a very positive and natural part of life. Whereas others fear death and view it as something that can and should be deferred indefinitely. Especially in Western society, people choose not to talk about it - death is hidden and people are often left looking for guidance on the “appropriate” way to grieve. There is no right way to grieve. Everyone is unique in their experience and expression of loss.
Death’s closest companion is grief. When caregiving for a family member or friend who is dying, your experience will likely have begun before they have passed on. This is anticipatory grief – the normal mourning that occurs when you are expecting a death. Anticipatory grief can give families and friends an opportunity to get used to the reality of the loss. You can use it as an opportunity to say good-bye, I love you or I forgive you.

When faced with mortality, we all react in very different ways. Most people hope for a “good death”. A “good death” is one in which the person who is dying is enabled to define dying and death as they wish to experience it. Many people who are facing death and their families access hospice and home-based palliative care that preserves the highest possible quality of life for as long as life remains. There are many resources out there for patients and families who are facing and dealing with death. Ask us for information!