You likely have concerns about keeping them safe and healthy or what it will take from you when they are in significant decline. Or maybe you have a hint of the loss of connection that is inevitable. These thoughts about what the future will bring may be the impetus to action. What action are taken depends on where your relationship with your parent’s stands. However that relationship is, if you start with your anxieties about their aging, you will be seeking their help in solving your problem. What is needed is your help supporting them.
Don’t wait until there is a major issue to discuss or a crisis to deal with. Beginning a dialog about aging and their needs and wishes is important so that you have some idea as to how to support them in a crisis. It also helps them to begin accepting the reality of their age and accepting support. If you begin too early or to heavy handed, it is easy to alienate the parents and they may feel your involvement is inappropriate, currently unnecessary, and self-interested. If you begin too late, uninformed decisions may have already been made and resources squandered. In addition, their cognitive capacity may not allow a fully reasoned exploration of their needs and wishes as they move through significant aging.
In the end, there are several difficult to discuss topics that you will need to understand including, driving, living situation, finances, moving, loss of spouse, terminal status, and their wishes after death. I strongly advise against using this as a checklist. Rather, following their lead and responding to events in their lives regarding friends that are going through any of these will be an easier entry.
Advanced Care Directives
One subject I often recommend as a starting point for your initiation is with the issue of having an AHCD (Advanced Health Care Directive). They should also have, and you should discuss durable power of attorney for health care (DPoAHC) and a physician ordered life sustaining treatment (POLST).
The AHCD is a legal document, also known as a living will, that details what health actions should be taken for someone when they cannot speak for themselves. The power of attorney specifies someone to speak for them on health care matters when they can’t speak for themselves. A POLST documents the wishes of a patient for medical crisis treatment and is created by a physician after discussion with their patient. The POLST is very important for emergency medical services to provide the treatment the patient wants.
Some Good Forms to Use
The State of California, where I live, has basic info on end-of-life planning including Advanced health Care Directive forms. Be sure to check with a legal adviser who is familiar with he laws and practices in your state. I also like the Five Wishes advanced directive because it begins a conversation and walks those involved through:
1) Who will make decisions
2) The when and how of life support
3) Comfort Care
4) Spiritual care
5) Forgiveness, remembrance, funeral and memorial plans
The Five Wishes Site can be found here.
These legal documents are needed because doctors, hospitals, and health care providers need direction from their patient and they can’t discuss a patient’s condition, let alone take direction from family members or others, without a power of attorney for health care. Too many times, I have witnessed clients cut out and frustrated with questions that the doctors won’t respond to because of confidentiality and a desire to stay out of family affairs. It can be a sad experience when a parent who didn’t want it so, ends life in the hospital rather than their home or is on prolonged life support because no one was authorized to say no.
The reason I suggest starting the dialog here is it is contained. It touches on the intimate and sensitive matters of possible health crises and mortality, but it is contained in a single action. It also provides a legitimate and rational reason for children to be involved. You need to know what to do.
Now, they might think they are supposed to choose someone who can make smart or informed decisions about health matters, but what is best is to choose someone they can trust to execute their desires. One doesn’t choose a doctor, lawyer or priest to make medical decisions. A friend or family member is chosen because they can tell the doctor, lawyer or priest what is wanted. What is needed is someone who can take the position of champion for the senior according to their wishes. And to do that that person needs to be informed.
It’s an Open Conversation
Remember, the conversation is not “we need to fill out this form” it is “have you thought about what YOU (your parent) want?” Parents sometimes rebuff the child’s advances with I don’t want to talk about that, you just want something from me or even, I’ve already taken care of all of that. Regardless of the response, gentle persistence is appropriate until you have clear understanding of their wishes.
Sometimes a senior will designate someone and not tell them. Sometimes they don’t express their wishes to the designated. Sometimes, their wishes change and no one knows until a doctor, nurse or social worker asks the in the ER. At 90 yr. old my mother changed her POLST, one she had had for 20 years.
I hope you can see that the adult children don’t need the form as much as they need the conversations about their views regarding the issues the form raises. The goal is ongoing participation with the senior’s exploration of their wishes for treatment. It is ongoing because conditions and attitudes and change over time. It approaches participation because it may come to the adult child to make decisions when the senior can’t.
About Sensitivities
Discussing cremation or burial and heroic measures to sustain life will bring up sensitivities. The whole matter may be sensitive with unconscious emotional reactivity. Breaking through and having conversations about situations where they can’t decide for themselves may reveal a terror about being alone attached to machines unable to communicate or a fierce stance that dementia is a burden on others not to be allowed. This kind of insight takes time to reach because it can be masked with avoidance and anger. Try to understand the reactivity is not about you but their situation and you are the one bringing that situation into view.
As you may already have experienced, these matters will likely reveal your own sensitivities and concerns. It is important to note them (and create your own AHCD and POLST) but to try to stay clear about what is yours and what is theirs. When you can put you concerns and opinions aside for a moment, you can be more open to what their concerns are. This openness can be felt, and it is part of building trust.
© 2018 Rob Fellows, Parent Care Consulting
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