Skip to Main Content (717) 697-3223

Caregiving Stress: When the Children Don’t Notice

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, and caregiving stress is improving. COVID-19 has made traveling more difficult for some families, so holiday visits might not be the triggering event that they have been in the past.

Perhaps you have been taking care of your spouse, whose needs have been increasing.   This often happens with dementia.   At first, caregiving might be as simple as gently reminding your spouse to shower.   As dementia progresses, you might need to be constantly vigilant if your spouse is still able to get around, and has a level of energy and curiosity that leads to mischief.

What can be amusing at first quickly becomes exhausting and unsafe.  It can be frightening if your spouse does not recognize you and treats you as an intruder in your own home.  Maybe it is time to tell your children, since they cannot be around to notice your spouse’s decline for themselves, as you would have hoped.  

Sometimes our clients hesitate to involve their out-of-town children because they do not want the added stress of having the child who is the family’s compulsive problem-fixer to come to the rescue suddenly and dramatically, unrealistically determined to make everything right during a long holiday weekend.  We understand.  Often our role is to buffer that level of unwanted interference from happening.

It can be frightening when a caregiving spouse senses that the out-of-town children seem determined to take over, perhaps by suggesting that the parents should sell the home immediately and move to a facility.  Relocating from the family home sometimes eventually becomes necessary, but rarely is that where the conversation should begin.

When one spouse realizes that the other is in a state of decline, there are a few first steps that should be considered.  Since our motto is that we “Honor Dignity and Independence, and Preserve Home and Wealth,” we understand what comes first.  Everyone has an understandable need to focus first on preserving independence, and dignity is a consideration in relation to that.

Sometimes we help people to understand that a wise person knows when to sacrifice a little bit of independence to preserve the rest of their independence and their dignity.  It is hard for some folks to know where to start.

One good starting point is to have a checkup of foundational estate planning documents.  Especially when early-stage dementia is involved, it is important to do this sooner than later.  Everyone who is Medicare-aged should have an updated last will and testament, durable financial power of attorney for business matters, and a health care power of attorney that includes a living will.

The financial power of attorney document might be the most important because, without it, your family might eventually need to petition the court for a determination of incapacity so a guardian can be appointed to access your money and be accountable to the court.  That is unnecessarily expensive and intrusive.  If you already have a financial power of attorney document, make sure it permits wealth preservation.  If the term “limited gifting” is within your document, then you need to see an elder law attorney because “limited gifting” language is probably not really what you want.  Does your power of attorney document name a backup agent in case your primary agent is unable to act for you?

It is common to have an “I love you Will,” which leaves everything to your spouse, and then equally among all your children if your spouse predeceases you.  What if your spouse is in a nursing home when you die?  Do you want the cost of nursing care to consume all the money?  Or if your child or grandchild is receiving government benefits that could be lost if they would receive money directly, don’t you want to prevent that?  You may revise your Will to include a testamentary trust to avoid those problems.

Your healthcare advance directive is important, but the discussion that happens in the presence of your children during the creation of it is more important, and at times can seem priceless.  We like to facilitate those family meetings by getting our clients and local children in our office, and using Zoom for the out-of-towners.  For many older persons, discussing specific situations which affect end-of-life wishes can seem as difficult as the birds and bees discussion they had with their children decades ago.

Sometimes, as we are helping our clients to execute estate planning documents, it can be a good time to discuss how a home care service can be an affordable tool to give the caregiving spouse an occasional break.  The most tragic cases that we see occur are when the caregiving spouse unwisely takes on too much responsibility and becomes hospitalized as a result.  When the other spouse cannot function independently at home,  the children suddenly have two parents in a crisis at the same time.  Such a failure of the parents to plan, and get a little bit of help at an early stage, can lead to a loss of more independence than otherwise would have been necessary.

Whenever we execute an estate plan with our clients, we explain the benefits of the client giving us a HIPPA release.  Since our elder law practice is uniquely holistic and includes the services of a care coordinator, we encourage our clients to call us as soon as one of them has been admitted to a hospital so that we can offer advice about the best discharge plan and follow-up care

If you were hoping to see your children this holiday season so that you could enlist their support to obtain your spouse’s cooperation to take steps to get your affairs in order, please do not delay.   Allow us to help you get started now and to involve your children either in person or virtually with Zoom.

Dave Nesbit, Attorney