Yesterday afternoon, I received a call from a potential client (Susan). She lives on the west coast, works full time and has two teenage children. Her mom was hospitalized recently, here in Boston.
The hospital-based case manager was pressuring Susan to make a decision about transferring her mom to a skilled nursing facility for short-term rehab. In the meantime, her mom had been experiencing significant cognitive decline for some time. Other family members had refused to acknowledge this and her mom had no insight.
Of course, this was difficult. Not only was Susan thinking about the imminent transfer of her mother to an unknown skilled nursing facility, she was also concerned that her mom would never again be able to care for herself at home. “What happens after that?!,” she asked.
Susan was in crisis, and so as we talked through the necessary immediate decisions, we also made a list of longer-term considerations that would require a great deal of work on her part. Her next call was to make flight arrangements to Boston.
This unfortunate scenario led me to think about things you might do if you find yourself in a similar situation, one in which you notice cognitive changes in a loved one but no one else is willing to address them.
Before the Crisis Arrives
If you begin to notice changes in a loved one – and that loved one is dismissive or refuses to acknowledge the situation when you address it directly – there are productive actions that you can take. You may not be successful with all (or any) of them, but you should keep trying. And while of course you must be respectful of wishes and privacy, by the same token, you cannot allow a situation to go unaddressed, particularly if you have safety concerns. It is a grey area that requires judgment.
Here, then, are some examples of things you can do:
- Convene a family meeting. Take the lead to talk about your observations, to align yourselves and to outline a strategy and action items. Try to establish regular meetings to review what needs to be done and actions already taken (even if the family does not agree on everything).
- Recruit the help of a professional. At the risk of appearing self-serving, an experienced professional can guide you and your family through the process. I have numerous clients for whom I act as “behind-the-scenes consultant” to a family member taking the lead. If I encounter a family situation that is especially challenging, I’ve recruited assistance from an Elder Mediation Firm that I’ve worked with in the past.
- Embark on Alzheimer’s coaching for the family. Basic education about the disease, how it manifests and how the family support system can alter its behavior, can go a long way. I’ve participated with a coach from StilMee™, and highly recommend the experience.
- Assign responsibilities. Identify things that need to be accomplished and, if possible, recruit other family members (e.g., the other parent, a child, siblings). Tasks may include communicating with a doctor, talking with neighbors, researching services in the area, etc.
- Talk with others. Solicit the input of neighbors, friends, pastors, etc. You can say something like:”I’ve noticed some changes in my mom’s ability to remember things, or care for herself, and I’m concerned. She is hesitant to address the issue with me, so I was wondering if you’ve noticed anything of concern and, if so, would you be willing to share your observations?”
- Contact the physician’s office. Ask for a meeting with the primary care physician and/or his/her surrogate and offer to pay for their time. While they may not be able to share any information if your loved one has not signed a consent form, they can certainly listen. If you have trouble getting through, send a letter/fax outlining your concerns in writing.If you are successful at scheduling a meeting, create a written agenda and share it ahead of time, so the physician will know what to expect. Ask if a quantitative assessment can be done of cognitive abilities and, if concerns arise, ask the physician if he/she can request another appointment to talk this over with a family member/Care Partner present. If your loved one has a relationship with the physician based on openness and trust, the physician’s suggestion that a family member be present for a future appointment might be influential.
If you are aligned as a family, you may want to include the person of concern in the next meeting. Your loved one may see that you are all in agreement and allow you to help. Remember, the fear of losing control is very powerful and often underlies resistance; a great deal of acknowledgement, care, support and patience must be demonstrated.
The Crisis Of Hospitalization
A typical crisis that can precipitate change is a trip to the emergency department of a hospital for a medical reason, such as a fall and a broken bone, or a bout of pneumonia that may require an acute inpatient stay, followed by transfer to a skilled nursing facility.
Another reason for hospitalization is a psychiatric issue related to cognitive decline. Although such situations can be terribly painful for both the loved one and the family, it sometimes affords the opportunity to make necessary changes in living arrangements, by either hiring assistance at home, or transitioning to a facility that specializes in the care of people with memory issues.
Here are some things you can do proactively to be prepared for a looming hospitalization:
- Research skilled nursing facilities in your loved one’s community. Identify quality options so that you will feel confident in the event a transition is necessary.
- Research emergency psychiatric services. Learn how they are employed in your local hospital (not all hospitals are well equipped to deal with such crises). Ask how they handle the need for an inpatient Geriatric Psychiatric Care admission and research the centers to which they suggest your loved one could be transferred.
- Research Assisted Living and Long Term Care facilities that have a Memory Care Unit.Look for those in the community in which your loved one lives or in a community near you or a family member. Having a list of preferred facilities ahead of time may come in handy as most of the high quality ones have waiting lists. You may even want to be placed on the list now (you can always decline later if your name comes up sooner than needed).
- Research Adult Day Centers. These can be a helpful alternative if you are in a position to bring your loved one home. This type of care can be combined with some private care in the home, so knowing about a reputable Home Health Care Company that you can afford (it’s not covered by insurance), is also worth researching.
As you can see, the key word here is “research!” The more you do now – before the crisis – the better a decision you’ll be able to make if the time comes.
The Problem With Waiting
In my experience, families that don’t do anything (because they’ve met resistance) are faced with a crisis for which they are unprepared and decisions that must be made in haste. If your state’s Protective Services Program becomes involved, for example (typically when someone reports a situation in which an older adult is unsafe and appears to be unmanaged), your life and that of your loved one will quickly get much more complicated.
Instead, it is my hope that after reading this newsletter, you will not be deterred if you notice cognitive changes in a loved one that neither the loved one nor anyone else in the family will acknowledge. Actions taken and homework begun today can place you in a keen position to act quickly and thoughtfully should the need arise.