Caregiving Challenges, Future Care and Planning

Helpful Highlights

• It may be difficult for you and your loved one to discuss their plans and desires for the future because it means talking about disability and death.

• It is imperative, however, to have these crucial conversations now rather than at the point of crisis, when immediate decisions and actions are required.

• This article offers scripting for approaching these conversations with your loved one, as well as a checklist to help guide you and keep you both on track.

When your loved one lives alone

Parent(s), or other loved ones, can live alone and thrive, remaining active and mentally alert, with or without chronic medical diagnoses. This is an ideal time to start discussing future planning and the care they want to receive as they continue aging.

Having this discussion when your loved one is well and independent helps to set a positive and reassuring tone rather than one of gloom and doom.  Remember this should be a two-way conversation, with more listening than talking on your part, and understand that it may become emotional and even difficult. Compassion and patience are key, as is sticking to one topic at a time.  You may be able to accomplish this over one weekend, though it might take several visits and conversations that happen over time.

Tips for taking on these difficult discussions

• Limit participation for the first discussion to just you and your loved one.

• Sit with your loved one, speak evenly and lovingly, write everything down, and then be their advocate with other family members.

• Include other caregivers and family members later, as needed. Understand that a group discussion can lead to high emotions, differences of opinion, and even arguments, which is not the goal.

• Most importantly remember... It’s not what you want, it’s what your loved one wants, even if you do not agree. However, if what they want places an undue burden on you, then openly discuss that. (Undue burden is actual physical or financial strain, not emotional upset due to disagreement.)

Checklist

Use this checklist to help you organize your conversations and track completion of essential items.

Discuss with your loved one:

□  Legal documents

□  Advanced Directives

□  Will or Trust

□  Living Will

□  Healthcare Surrogate

□  Power of Attorney (Durable and Medical)

□  Documents Location (fill in):

□  Executors have Copies

□  Living Arrangements

□  End-of-Life Care

□  Funeral Arrangements/Burial Wishes

Discussing life and care wishes early is much easier than waiting until a crisis occurs.

Start by discussing if there is anything now that they wish they had help doing, even though they are successfully living independently. Yard work, housekeeping, grocery shopping, transportation. Things they may think to themselves, "I just wish I had someone to help me with this," whenever they have to do it. Then discuss options for getting them help. Getting help with harder tasks helps them continue living independently, as there is less risk of exhaustion and injury.

Talk about what would happen if they couldn’t live in their home alone.

• Under what circumstances do they feel they could no longer live alone? (Try to get them to be specific.)

• Under those circumstances, would they want to move or would they want to hire in-home help?

• If they were to move, would they want to move in with family? Into a senior community? Into assisted living? Into a nursing home or other long-term care?

• Consider visiting area independent living facilities (ILF)/senior communities, assisted living facilities (ALF), and nursing homes/long-term care facilities.

  • Do a cost analysis of hiring help at home vs. moving in with a loved one or into a facility.

  • Identify the pros and cons of each living arrangement.

  • Decide which facilities are acceptable, and those that are not.

Talk about the care they want as they continue aging.

• Do they want to assign someone to make healthcare decisions should they become unable to do so? Financial and property decisions?

  • Research incapacitation criteria in your state. Your loved one's primary care provider or attorney can help.

• Do they want to initiate a do-not-resuscitate (DNR) order at some point, and if so - when?

• In the event of a health crisis, do they want life-sustaining measures taken (i.e., ventilator, feeding tube)?

• Would they be interested in hospice care at the end of life?

Discuss what they want for funeral arrangements and/or burial plans, if those haven't been established already.

• Do they have a mortuary they prefer to use?

• Do they want a funeral service?

• How do they want to be laid to rest and where? (Casket burial in a cemetery, cremation to ashes, or something else.)

Discuss the finalization of legal documents (see Checklist above).

1. Are the documents completed?

2. Where are the documents located? 

3. Do all appropriate people have copies of all appropriate documents (i.e., those with power of attorney, executors, healthcare providers, attorneys)?

Regarding legal documents, it is best to engage an elder care attorney for advice. An elder care attorney, versus other types of attorneys, keeps current on state laws and regulations that impact older adults. They have this Checklist in their head. Utilizing an elder care attorney not only ensures that all your loved one's wishes are made official but also that everything is kept in order and completed.

When a parent or loved one reaches a stage of needing assistance or even supervision, it is a hard transition for both of you. Those changes usually happen slowly, but not always.  Sometimes a health crisis will dictate immediate changes, changes for which no one is prepared. Accomplishing these tasks, especially before a crisis occurs, helps tremendously in all aspects of care.

No content in this app, regardless of date, should ever be used as a substitute for direct medical advice from your doctor or other qualified clinician.