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What Steps to Take when Dementia Begins

Holiday season is often a time when out-of-town children visit their parents for the first time in a while and notice that one of their parents has declined since they last saw them.
Pittsburgh Alzheimer's & Dementia Care Planning

Covid-19 has made travelling more difficult, so holiday visits this year may not be the same triggering event they were in the past. However, even an online holiday visit can reveal a great deal of change, reports a recent article “Elder Care: When the children don’t notice” from The Sentinel.

An elderly spouse caring for another elderly spouse may not notice that their loved one’s needs have increased. Caregiving may have started as the spouse needing a reminder to take a shower on a regular basis. As dementia progresses, the spouse may not be able to shower by themselves.

This quickly becomes exhausting and unsafe. If one spouse suddenly does not recognize the other and perceives their spouse as an intruder, a dangerous situation may occur, repeatedly. It’s time to discuss this with the children, if they are not available to notice this decline in person.

People are often reluctant to tell out-of-town children about this problem because they don’t want the added stress of having the children come to the rescue and making decisions that may be overwhelming. The children may also think they can come out for a visit and fix everything in the space of a few days. It’s not an easy situation for anyone.

A starting point, especially when early-stage dementia has been diagnosed, is to get an estate plan in place immediately, while the person still has the capacity to sign legal documents. Anyone who is old enough for Medicare (and anyone else, for that matter) needs to have an updated last will and testament, durable financial power of attorney for financial matters and a health care power of attorney, including a living will.

The financial power of attorney document will be the most practical because the family will be able to access financial accounts and make decisions without having to petition the court to appoint a guardian. A professional guardian might be appointed, which is extremely expensive and there have been situations where the professional guardian makes decisions the family does not want. A family member who can act under the power of attorney may be a much better solution for all concerned.

Speak with your estate planning attorney to be sure the POA permits wealth preservation. If it contains the phrase “limited gifting,” you want to discuss this and likely change it. You should also be sure that there is a secondary and even a third backup agent, in case there are any issues with the people named as POA.

Spouses typically have wills that leave everything to their spouse, and then equally among their children, if the spouse dies first. However, what if your spouse is in a nursing home when you die? The cost of nursing home care can quickly exhaust all funds. If any family member is receiving government benefits and then inherits directly, they could lose important government benefits. These are all matters to discuss with your estate planning attorney.

Have a conversation with your children about your healthcare advance directive. It’s not an easy conversation, but when the children know what their parents want concerning end-of-life care decisions, it relieves an enormous burden for all. Get specific—do you want a feeding tube to keep you alive? What about if the only thing keeping them alive is a heart-lung machine? Better to have these conversations now, than in the hospital when emotions are running high.

Another important document today is the HIPAA release. This permits healthcare providers to discuss and share information about your loved one’s medical care. Without it, even close family members are not legally permitted to be part of the conversation about health care, lab test results, etc.

Reference: The Sentinel (Dec. 11, 2020) “Elder Care: When the children don’t notice”

 

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