Please note during this blog, I will use the term “family” very consistently. Family in my terminology is defined as a group of people who are either biologically related or chosen by an individual to be inside the personal circle of that individual.

It has been interesting over the course of my professional career watching other families respond to crisis’s centered around an aging parent. Keep in mind, in the hospital setting, it was rare to see a family that had it all together and had a plan in place before the crisis took hold. What was normal, was to see families taken off guard by how bad things were at home and that their family member was unable to return home after a hospital stay. When families are in crisis mode, good decisions are hard to come by. Over the years, I have had friends who have asked for my assistance with helping their family prepare for crisis. The focus of this blog is to share what I feel are good steps toward managing an inevitable crisis down the road.  I will be very generic in my discussion and my suggestions may not apply to your case but reach out to me and I can help guide you. Not every family is created equal.  My knowledge comes from both professional and personal experience.

Scenario: Two older people living together. They have 4 children, 3 live close, 1 lives out of state.  Two of the children are noticing some signs that things are not going so well at the home of the older couple. These may be subtle signs such as lack of good meals, repeating stories, a home that was once clean, is no longer tidy and neat. Increased bickering between the couple, one person withholding information from a child, yet the significant other tells the child the information. A dent in the car, overpayment/underpayment of bills, just to name a few. At this point, often a child will notice these issues but may not say much or if they do, their siblings may not agree, and they silence the other sibling.

What needs to happen to avoid crisis mode?

1. Call a family meeting with your family. I think it’s important to start out with siblings and their significant others, but you could also include anyone that you feel has an active role in the care of the couple. Sit down and discuss what you are seeing and observing. Ask others if they are seeing the same thing. You may get mixed feedback as each person may have a different relationship with the couple. Emotions may run a bit high at this meeting. Fear will motivate people to respond in a protective manner. You may need to have a few meetings so that the designated members can observe what you have observed and have time to process their own emotions around this information.
2. After the family is on board, and everyone seems to be on the same page, you should discuss roles that each member feels they can take on. There should be a caption of the ship, meaning one person that drives the boat and keeps things organized.
3. Medical evaluation. This is an area that I have observed that seems to be a big obstacle for many people. How does one convince the older person to visit the doctor to discuss the cognitive decline? And not only that, how does the individual convince the doctor that there is something going on at home. This is where a role of advocate is needed. If there is a family member that isn’t afraid to push back, this should be their role.  Primary Care Physicians (PCP) are wonderful! But if an individual is having cognitive issues at home, the PCP should refer them to a gerontologist. A gerontologist typically works in an environment with other providers such as nurses, social worker, psychologist and neurologist who specialize in the disease process of older individuals. This team can evaluate an individual from a holistic point of care and provide a solid diagnosis of what is going on with the individual. In order to see a gerontologist, a person will need a referral from the PCP. The gerontology team will pull in the family as part of the support system.
4. Advance Care Planning.  I am a big supporter of early advance care planning. And when I say early, I mean young adult early. We live in a death-defying country, so as a result, we don’t like to talk about how we want to die. But talking about how we want to die is important on so many levels. When you can sit down and talk about how you want to die with your family, you give them a gift. A gift in the form of not having to guess if you would want a feeding tube, or CPR or other forms of life sustaining treatments. I would encourage you to start these conversations now. I will give you resources on how to get started.
5. Have another family meeting and if able, include the older couple. You need to learn to be open and honest with your older family members and if they can control what happens as process’ move forward, that will be helpful for a buy in. This is also the time where you must NOT make promises you may not be able to keep. Often, an older person will ask you to promise not to place them in a nursing home. I have sat with more individuals than I want to count who grieve over not being able to keep that promise. This is the time that you formulate how to support at home and for how long. This is the time you begin to research home care options and long-term care options.
6. Begin to understand the financial outlook of the older couple. Someone in the family will need to evaluate where the couple is financially and what they can afford moving forward. You may need to schedule an appointment with a lawyer so that Power of Attorney (POA) documents can be started.  This needs to happen before the individual is no longer able to cognitively understand what is happening. A POA is very different than a will. Again, an attorney will be able to discuss all those options with you and your family.  Just a very quick note here (my thoughts ONLY), you don’t need an elder care attorney unless there are major financial dividends and/or trust funds or business that need to be protected. A family attorney will do a fine job and you won’t have to pay a large sum up front that some elder attorneys might charge. Again, know your options, do your research.  
7. Start looking at long term care options. Educate yourself on the differences between personal care homes, boarding homes, assisted livings, long term care, continuing care facilities.  Go and visit, ask what happens when/if money runs out. Don’t assume anything until you educate yourself.  If you have an older family member who has been diagnosed with dementia or Alzheimer’s disease, look for facilities that have secured units. Not only are those units locked, but they offer special programing centered around individuals with cognitive decline disorders. Many facilities require that all their staff are specially certified as well. This is beneficial to the individual with a cognitive decline disorder.

Not to overwhelm you, I am going to stop here, and I will discuss each of these points in upcoming blogs. I know each situation is different and my hope is that this blog will give you a starting point and some ideas as you begin this journey with the person you are caring for. Jump on over to my resource page for information about advance care planning and facility searches. I’ll add more as able.