What Should I Know About Advocating for a Loved One with Parkinson’s Disease?

Unfortunately, recent studies have shown that three out of every four hospitalized Parkinson’s Disease patients didn’t get their regular home medications on time or had doses entirely skipped.

Proper medication management is the most critical part of a successful hospitalization for someone with Parkinson’s Disease.

Antiparkinsonian medications (levodopa or amantadine, for example) must be given correctly, at the right time and in the correct dose.

If regular home medications aren’t provided in the hospital, Parkinson’s Disease patients can develop mental disturbances, increased muscle rigidity, tremors and difficulty communicating. As a caretaker, you have a vital role in helping the transition from home to the hospital run smoothly.

Next Avenue’s recent article, “How to Advocate for Your Hospitalized Loved One with Parkinson’s Disease,” has some ways you can do this.

Make sure you have an up-to-date list of medications your loved one takes. The list should include the name, dose, when it was last taken and what pharmacy is used for prescriptions. Be prepared to give this to the hospital staff when requested.

You should also list drug or food allergies, including reactions. For example, did a particular drug cause severe irritability or a rash in the past?

It is important to remain with your loved one when they arrive at the hospital until the first dose of their regular medication is administered. Note that a first dose can usually be delayed by several hours if the nurse needs to input the medication list into the chart immediately or if the hospital pharmacy is delayed in verifying the orders. However, after the first dose, future quantities will likely be on schedule.

Cooperate with nursing staff to make sure that your loved one is comfortable. Be direct, yet kind, in asking when the patient might need personal hygiene supplies, a quieter environment, or on-time medication.

As a caretaker, your education and experience regarding Parkinson’s Disease are powerful tools.

Some things might fall through the cracks in a busy hospital– and you know the patient best. So don’t be afraid to speak up and express your needs as you advocate for your loved one.

Reference: Next Avenue (December 22, 2023) “How to Advocate for Your Hospitalized Loved One with Parkinson’s Disease”

What are Biggest Blunders with Health Care Proxies?

A health care proxy, also called a medical power of attorney, is a legal document in which you name a person to make medical decisions, in the event that you are unable to do so for yourself.

Forbes’ recent article entitled, “Health Care Proxies – 5 Biggest Mistakes,” lists the five biggest mistakes people make on this vital document.

No 1: Failing to have one. A study found that two-thirds of us don’t have a health care proxy. If you don’t have one, your doctor may be forced to make decisions in a vacuum. As a result, your wishes may not be respected. Even worse, a court might have to step in to make decisions requiring a guardian’s appointment.

No. 2: Not speaking to those you appoint as your health care agent. This conversation doesn’t have to be complicated or lengthy. However, it’s essential to give your agent some understanding of your feelings and wishes.

No. 3: Not addressing religion If you’ve changed faith , married someone of a different faith, or have children with differing religious views, addressing this in your health care documents and your discussions with your agent is critical. Don’t skip religious considerations because you aren’t religious—that’s also an essential part of this.

No. 4: Not having copies of the health care proxy available. You can put together an envelope and write your name, address, phone number and those of your agents on it. Place a copy of your health insurance info, drug cards and health care proxy in the envelope. If you created and signed a living will and/or a POLST (Physical Order for Life-Sustaining Treatment) that you signed with your doctor, add copies of those to the envelope and a HIPAA release.

No. 5: Failing to address financial matters. Your health care agent most likely won’t have legal rights to pay medical bills, caregiver costs, or other outstanding bills. You should sign a durable power of attorney, a financial document designating a person (called an agent) to handle financial matters for you. Provide your agent with the necessary information, like bank account information.

Reference: Forbes (March 21, 2023) “Health Care Proxies – 5 Biggest Mistakes”

Talk to Parents about Estate Planning without Making It Awkward

If you don’t have this conversation with parents when they are able to share information and provide you with instructions, helping with their care if they become incapacitated or dealing with their estate after they pass will be far more difficult. None of this is easy, but there are some practical strategies shared in the article “How to Talk to Your Parents About Estate Planning” from The Balance.

Parents worry about children fighting over estates after they pass, but not having a “family meeting” to speak about estate planning increases the chance of this happening. In many cases, family conflicts lead to litigation, and everyone loses.

Start by including siblings. Including everyone creates an awareness of fairness because no one is being left out. A frank, open conversation including all of the heirs with parents can prevent or at least lessen the chances for arguments over what parents would have wanted. Distrust grows with secrets, so get everything out in the open.

When is the right time to have the conversation? There is no time like the present. Don’t wait for an emergency to occur—what most people do—but by then, it’s too late.

Estate planning includes preparing for issues of aging as well as property distribution after death. Health care power of attorney and financial power of attorney need to be prepared, so family members can be involved when a parent is incapacitated. An estate planning attorney will draft these documents as part of creating an estate plan.

The unpredictable events of 2020 and 2021 have made life’s fragile nature clear. Now is the time to sit down with family members and talk about the plans for the future. Do your parents have an estate plan? Are there plans for incapacity, including Long-Term Care insurance? If they needed to be moved to a long-term facility, how would the cost be covered?

Another reason to have this conversation with family now is your own retirement planning. The cost of caring for an ailing parent can derail even the best retirement plan in a matter of months.

Define roles among siblings. Who will serve as power of attorney and manage mom’s finances? Who will be the executor after death? Where are all of the necessary documents? If the last will and testament is locked in a safe deposit box and no one can gain access to it, how will the family manage to follow their parent’s wishes?

Find any old wills and see If trusts were established when children were young. If an estate plan was created years ago and the children are now adults, it’s likely all of the documents need to be revised. Review any trusts with an estate planning attorney. Those children who were protected by trusts so many years ago may now be ready to serve as executor, trustees, power of attorney or health care surrogate.

Usually, a complete understanding of the parent’s wishes and reasons behind their estate plan takes more than a single conversation. Some of the issues may require detailed discussion, or family members may need time to process the information. However, as long as the parents are living, the conversation should continue. Scheduling an annual family meeting, often with the family’s estate planning attorney present, can help everyone set long-term goals and foster healthy family relationships for multiple generations.

Reference: The Balance (Oct. 15, 2021) “How to Talk to Your Parents About Estate Planning”

Do I Need to Update My Estate Plan?

Given a choice, most people will opt to do almost anything rather than talk about death and life for others after they are gone. However, estate planning is essential to ensure that your life and life’s work will be cared for correctly after you’ve passed, advises the article “Is Your Estate Plan Up to Date?” from NASDAQ.com. If you own any assets, have a family, loved ones, pets or belongings you’d like to give to certain people or organizations, you need an estate plan.

Estate planning is not a set-it-and-forget it process. Every few years, your estate plan needs to be reviewed to be sure the information is accurate. Big life changes, from birth and death to marriage and divorce—and everything in between—usually also indicate it’s time for an update. Changes in tax laws also require adjustments to an estate plan, and this is something your estate planning attorney will keep you apprised of.

Reviewing and updating an estate plan is a straightforward process, once your estate planning attorney has created an initial plan. Keeping it updated protects your wishes and your loved ones’ futures. Here are some things to keep in mind when reviewing your estate plan:

Have you moved? Changes in residence require an update, since estate laws vary by state. You also should keep your advisors, including estate planning attorney, financial advisor and tax professional, informed about any changes of residence. You’d be surprised how many people move and neglect to inform their professional advisors.

Changes in tax law. The last five years have seen big changes in tax laws. Estate plans created years ago may no longer work as originally intended.

Power of Attorney documents. A Power of Attorney authorizes a person to act on your behalf to make business, personal, legal and financial decisions. If this document is old, or no longer complies with your state’s laws, it may not be accepted by banks, investment companies, etc. If the person you designed as your POA decades ago can’t or won’t serve, you need to choose another person. If you need to revoke a power of attorney, speak with your estate planning attorney to do this effectively.

Health Care Power of Attorney and HIPAA Releases. Laws concerning who may speak with treating physicians and health care providers have become increasingly restrictive. Even spouses do not have automatic rights when it comes to health care. You’ll also want to put your wishes about being resuscitated or placed on artificial life support in writing.

Do you have an updated last will and testament? Review all the details, from executor to guardian named for minor children, the allocation of assets and your estate tax costs.

What about a trust? If you have minor children, you need to ensure their financial future with a trust. Your estate planning attorney will know which type of trust is best for your situation.

A regular check-up for your estate plan helps avoid unnecessary expenses, delays and costs for your loved ones. Don’t delay taking care of this very important matter. You can then return to selecting a color for the nursery or planning your next exciting adventure. However, do this first.

Reference: NASDAQ.com (July 28, 2021) “Is Your Estate Plan Up to Date?”

Suggested Key Terms: Estate Planning Attorney, Minor Children, Guardian, Last Will and Testament, Executor, Power of Attorney, Health Care, POA, Assets, Trust, HIPAA Release

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What Should I Know About Advocating for a Loved One with Parkinson’s Disease?

What are Biggest Blunders with Health Care Proxies?

Talk to Parents about Estate Planning without Making It Awkward

Do I Need to Update My Estate Plan?

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