Your loved one has just been diagnosed with Alzheimer’s Disease (AD) – a devastating diagnosis. This person may be as young 40 or as old as 90. No one wants to imagine what this will look like in the coming years, but it is important to plan ahead.
Admit it, we’ve all said, at least a few times in our lives, “Shoot me before I end up in a home!” You may have even promised a loved one that you would care for them as long as you could, that you would never place them in a home.
It’s not very difficult to care for a loved one during the early stages of Alzheimer’s Disease. Some handy cues, like reminders and post-it notes throughout the house do the trick! You can still leave them alone. You can still go out with friends. It all seems to be going very well.
We never know how long it will remain manageable. In the early stages, when you have the calm space to do so, you need to plan for the future. Where do you begin? Who can help you navigate the system of elder care? The world of Elder/AD Care is a very unique world unto itself. It is riddled with potholes and confusion. You need a guide. A Senior Care consultant/Geriatric Care Manager can be that person for you.
Waiting until the situation becomes a crisis will not serve anyone. Before you get there, it is important to have a few things in place. First, you want to be certain you engage an elder care attorney. This is important because your loved one needs to be cognitively intact sufficiently to sign a Health Care Proxy and Power of Attorney. Your elder care attorney can help determine the overall financial status, which is a major factor in what will be available to care for your loved one, and how best to apply the funds. Your elder care attorney can also determine if you need to apply for Medicaid.
Next step, it is important to have a medical team working with you. It can include any of the following:
PCP, neurologist, geriatric psychiatrist, nurse practitioner, psychotherapist,
social worker/ Geriatric Care Manager.
Once you assemble your team, work with your Geriatric Care Manager (GCM) to help map out your long-term plans. Having one plan, however, is not enough. It’s important to have at least a Plan A and a Plan B.
I have well founded beliefs that might contradict what you believe is best for your loved one.
Most of us declare that we only want to be wheeled out of our homes on a gurney, when it’s time. I have told my own grown children this, I must admit! The truth, however, is that leaving an elderly loved one home alone, with caregivers, is not the healthiest solution. In a few cases it may work out. More often than not, it is less than optimal. Let me explain why.
Socialization, stimulation, 24-hour professional care, and, I can’t say it enough, socialization are essential in creating a successful residential setting. Assisted living communities are a gift to those with Alzheimer’s Disease. Choosing one with stimulating programming, a welcoming and calming environment, and well-trained staff will help your loved one maintain a higher functioning level for longer. Decline is inevitable, but can we help our loved one remain as we know them a bit longer? Yes! Certainly!
It has been proven time and again, that keeping a person with AD at home, isolated, bored, out of touch with the outside world, will most often result in challenging behaviors, rapid decline, frustration and depression. Many families & friends including numerous dedicated visitors & caregivers, but they tire, visits diminish and direct caregivers get worn out by the stress . . . then what? Another solution is hiring caregivers from an agency or privately. I can attest that this is not THE solution.
My perspective is realistic and empirical, having been the Executive Director of a Home Care Agency, managed hundreds of Certified Nursing Aides, and dealt with private caregivers. It is difficult for one caregiver to entertain a person with AD successfully for hours. An assisted living or Nursing facility, however, can do that. Oftentimes, the caregiver & client have nothing in common. As a result, conversation, entertaining and engaging in games or puzzles may all fall short. The result is boredom, frustration, decline & depression.
I have witnessed firsthand, a caregiver choose to put a highly intelligent elder in front of cartoons for hours, or in front of news that makes no sense to the elder, while the caregiver sits on their cell phone, or entertains their own friends/family. This is not stimulation, socialization or advantageous for your loved one.
So, with that said, next step should be: start looking at Assisted Livings with dedicated neighborhoods for AD. If more physically or medically compromised, a high quality skilled nursing facility is required. By now you should have engaged a Geriatric Care Manager who can assess your loved ones needs & determine the best setting.
Tour these facilities. Put your name on a wait list and hold onto the information. It is time to move your loved one into the chosen residence before they are found walking the streets in the middle of the night in their bathrobe. Making the move into assisted living is a big step, but is the only way to avoid the eventual crisis.
When you wait for the crisis, you invite a very difficult situation, obviously. Without preparation, you end up unable to place him/her in the community of your choice. Now it is broken hip, a lost loved one (the most frightening situation imaginable) or family caregiver hospitalization due to stress. Please do not let this happen! Take the time and thought to act, avoiding the desperate crisis!
Stay tuned for additional blogs detailing many of the steps mentioned above. I will outline the crises, the pitfalls, all that can go wrong when we procrastinate, and all that can go right when we battle our own inertia and make Plan A & Plan B and act!
Betsy Ross, MA, LICSW, NHA, Owner of Boundless Options LLC
Senior Care Consultant, Educator, Trainer & Public Speaker