There are points in life when everything changes. Milestones where you can look back and say, “Here is when life was never the same again.”
A diagnosis of dementia can be like that.
Probably there were months and even years leading up to that moment when you wondered, suspected or even knew, but it wasn’t official. Even when there is no doubt in your mind, hearing the words from a doctor can take your breath away. Everything changes.
Many people come to this point and ask, what now? Now that we know, what should we be doing?
You may have all or part of this in place already, but here are some suggestions as you begin this journey.
1. Make sure the powers of attorney are in place. Talk to your elder and discern their wishes. Do they want the family member who lives closest to have POA, or each of the children? With Skype, social media and email, families can connect immediately to discuss problems, but what if someone is needed to physically visit? All this should be considered. Do they want to set it up so anyone of the POAs could make a decision, or that they all have to agree? If there are no children, is there a niece, a close friend or someone else who will assume these responsibilities? Some people have a trusted lawyer make both financial and care decisions. Whoever it is, this should be put in place immediately.
2. If your elder is still driving, the doctor who made the diagnosis will be contacting the Ministry of Transportation, revoking their license. However, you will be left with some difficult conversations.
I recently went through a month without a car after mine died. Due to a busy schedule and vacation, it was four weeks before I was able to purchase a new (to me) vehicle. I got dropped off at the grocery store and had to wait to be picked up. I missed church one week because I couldn’t get a ride. I felt awkward and embarrassed asking for help in the form of rides. I hated it. It gave me compassion for our seniors who can no longer drive. Independence is tied to a set of wheels, and conversely, no car means a lessening of independence.
When this happens, talk together about a plan. Will they take taxis? The bus? Learn to use Uber? How often will the family be able to help? A plan brings some independence back to the situation.
3. What kind of supports are needed? As part of the assessment to make a diagnosis, the doctor would probably have done a mini-mental status exam (MMSE.) This is scored out of 30, and the score gives a baseline for how your elder is functioning, and some indication of how much support they will need. At a certain score, the doctor will deem that they cannot make decisions for themselves, and that is when the power of attorney is put in place. Another score indicates your loved one can’t safely live independently. It may be, with the right supports (such as someone coming in to give medications, or do light housekeeping) independence can be maintained. Find out what’s available, how to access government-funded programs, and look into the cost of accessing those that aren’t subsidized. Look into things you don’t need presently, so if there is a rapid change, which often happens, you are ready.
4. There will come a day when supports in the home won’t be enough. You may be months or even years from that day, but you will be better prepared for it if you start thinking now. What kind of place would your loved one be happiest at? What qualities are the most important to them? What is the process for admission? What do they cost? What is available? Start your research now, before there is a crisis. Have conversations and discover what matters.
5. Read, read, read. Learn about the difference between Alzheimer’s and other dementias, what kind of drugs are typically given for dementia and how they work. Ask your doctor to recommend some websites and attend classes with the Alzheimer Society. There is a wealth of information out there, and knowledge helps you ask informed questions and know better what to expect.
You are embarking on a journey. Make sure you have the vehicle you need before turning onto the highway.
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This list is by no means exhaustive. What information or tools did you find valuable after a diagnosis of dementia?