Having Those “Serious Conversations” Early
Last updated: February 2023
When is the last time you thought about the number of decisions you make each day? As a caregiver, you know it's a lot.
At the start of your Alzheimer's journey, you and your loved one may be able to work through things together. You can both figure out where you want to go to dinner or what movie to watch on a Friday night.
Making the case
Down the line, as the disease progresses, your loved one is less likely to be able to participate in decision-making. It's around this time your responsibilities start to increase.
You'll be thinking about the day-to-day, making sure your loved one is safe, and starting to really feel that caregiver fatigue.
All of a sudden you have to make some BIG decisions. It may be to your benefit as a caregiver to have some "serious conversations" early on.
These conversations are probably going to be hard. One of the earliest discussions you may want to have and a decision they may want to make is related to end-of-life care.
Asking, "What do you want?"
I never thought, at 28, that I would be talking with my Dad about what measures he would want to be taken at the end of his life. As a speech therapist, my suggestion would be to ask them about whether or not they would want a feeding tube placed.
Knowing that swallowing would become challenging and unsafe in the late stages of Alzheimer's, it's a topic I had to bring up with my Dad.
Another thing to consider is whether or not your loved one wants to be ventilated if necessary when they become ill. Lastly, a significant decision to make is whether or not the individual you are caring for would want to be resuscitated during a medical emergency.
Again, these topics are unpleasant but knowing ahead of time could save you a very stressful headache.
Talking about future Alzheimer's care
Understanding what kind of health-related care my Dad wanted before he progressed made it easier to discuss what kind of living-related care he preferred. My Dad knew as we all do at this point, that being a caregiver is a taxing job.
His request was for us to "not to wait too long" to place him in a memory care facility. Those were his wishes but maybe your loved ones are different.
They may want to remain in their home and have home health care visits. They may feel the safest moving in with you. Like my Dad, your loved one may want to move into memory care or a skilled nursing facility.
By having this conversation early, they can actively participate in the selection process. Together you can tour the facilities and meet with staff and residents in each place.
The benefit of having these "serious" conversations early
It may seem intimidating to bring up these topics with your loved one, be it a spouse or parent. At the moment, you may dread it and wish you didn't have to. When the time comes, and that burnout really starts to hit, you will be glad you did.
As a caregiver, you can take comfort in knowing that this was a discussion you both had and a decision made early on. Ultimately, you are doing what they wanted. These topics are unpleasant but having the answer ahead of time will help to reduce any feelings of guilt you may experience as your situation evolves.
What are some early conversations and decisions you made with the individual you are caring for? Tell us about your experience in the comments below, or share your story with the community.
Have you or your loved one been diagnosed with Mild cognitive impairment?