Be prepared. It’s going to happen fast.
Be prepared. It’s going to come when you least expect it.
Be prepared. It’s going to interrupt your life.
However, it doesn’t have to be a shock to your system.
But how? But how do you prepare for the unknown?
And that’s exactly what caregiving is…the unknown. Especially for a loved one with Alzheimer’s or related dementia.
I came into this caregiving situation completely clueless and unprepared with no plan. Like many people I’ve had family members and friends with dementia. But I wasn’t their primary (and only) caregiver. And until you are a caregiver completely responsible for the safety and well-being of another adult who can’t always communicate their needs, who may or may not have behavior challenges, who definitely has cognitive ISSUES….it’s all unknown.
We don’t have medical degrees. We don’t have any letters behind our names. Many of us have never done this before. There is no freshman orientation. All we have is love, a spirit of determination and a commitment to figuring “it” out as we go. Whatever “it” is.
Most experts suggest a 40/70 rule. By the time you are age 40 or your loved one is age 70 you should begin to plan. As a young(er) caregiver in my late 30s, with a mother in her 60s, my experience dictates that you can start even earlier. Few people are able to make sound and rational decisions when a crisis is underway and having a plan in place will help make things less difficult. I can only speak from my experience but there are definitely things I could have done to be better prepared for this role.
Based on my own personal experience and conversations I’ve had with other caregivers over the last 4 years, here are 6 things I could have done to better prepare myself to be a caregiver:
Talk about it.
It may not be easy, but start with a conversation with your loved one. Ideally, the conversation will take place before a crisis occurs. Discuss your loved ones health needs and their desires. Ask open ended questions. Start slow. Be open to their thoughts and feelings. Remember this is their life. You are here to help. Explain your fears and concerns in detail and encourage them to do the same. The caregiver conversation is ongoing. You don’t have to make all decisions at once. You might start the conversation by mentioning an article you read or a situation with a friend who is taking care of a parent.
Form your team.
This is the one thing I did not do. Talk to your siblings, family members and close friends about responsibilities. One person’s strength might be finances. Another person might be good with technology and can set up apps and systems to stay organized. Another person might be a good cook. Everyone can have a role. At the end of the day, everyone might not follow through, everyone won’t follow through, but being proactive about forming a team helps to keep people accountable.
Get to know your doctors.
I could not stand my grandmother’s neurologist. He had no bedside manner and seemed to brush off any of our questions. I came into the picture when my grandmother was further along on the journey, so by that point the neurologist wasn’t the most important person on her care team. We focused more on her primary care physician. However, I learned my lesson. We went through 2 neurologist and 2 primary care physicians before I finally got my mom’s care team together. Speak up. Ask questions. Get to know your care team. You are your loved one’s advocate.
Get legal affairs in order.
The best way to accomplish this is to enlist the assistance of an elder law attorney. Power of attorney, medical directives, a living will, a will and a living trust are all documents to establish while your loved one can still make decisions for themselves. You can find some of these documents online, but a lawyer who specializes in elder care is your best bet. There are also social service agencies such as the Area Agency on Aging who offer free legal assistance.
Get financial affairs in order.
Financial planning starts with a look at all assets and debts along with income and expenses. Find out where your loved one keeps important documents such as insurance policies, statements for investments and/or banking accounts, as well as legal documents. If your loved one insists on handling their finances (and most will), please stay involved as best you can. Seek the assistance of a financial planner who is experienced in elder care planning. A professional can help you navigate the system and implement strategies to best prepare for long-term care.
Learn as much as you can about your loved one’s condition. There are classes that will teach you the basics of the disease along with what to expect and how best to prepare for the journey ahead. Tips about communication strategies, dealing with difficult behaviors, coping with stress, etc. will prove valuable in the long run. The Alzheimer’s Association offers several education programs for new and experienced caregivers. Local caregiver conferences are a great way to learn more and become prepared to take the journey of caregiving. They often cover financial and legal planning, senior housing, caregiver stress, home safety, quality of life and more.
There’s no way to fully prepare for the journey of caregiving and the responsibilities that come along with it. However, you should begin to have the conversations early with family, friends, about doctors about what lies ahead. Being prepared will help ensure that you are not caught off guard.