As a family caregiver, what is your plan for the future? Your future. Your loved one’s future. What does life look like 10 years or 20 years from now? Future Planning is one of, if not the most important thing family caregivers must do. We must plan ahead. Why? Simply, because we won’t live forever. Nobody lives forever. I know it is difficult to think about your child or sibling who has Down Syndrome, living in a world without you. All kind of thoughts race through your mind…who’s going to take care of them…who’s going to protect them?
But that’s the beauty about having a plan for the future…you get to test this plan while everybody is still here and any part of the plan that doesn’t work, you get to fix it. Isn’t that brilliant?! So why is it that most family caregivers still die without ever creating a plan? Because, it is honestly exhausting. On top of trying to survive each day, we now have to plan for the future…yeah, it can be quite overwhelming. That’s why HappyDowns has decided to start the conversation about this difficult topic in hopes that more families will be prepared for the inevitable.
Future Planning is Dynamic
It would be nice if it was just a “one and done” type of situation, but it’s not. As both you and your loved one age, your plan has to fit the different stages of life that you both experience. The plan for a teenager…school, social activities, etc. will look different from the plan for an adult…work, relationships, etc.
Therefore, your family must have regular conversations to discuss the different roles persons will play in the care of your loved one as time goes on. You may even have to solicit the help of friends, government facilities and various professionals such as lawyers, accountants, etc. to ensure that all bases are covered to ensure that your loved one lives their best life possible.
Future Planning Requires Organization
Paperwork is key. There is nothing like good old “black and white”, especially when it comes to things like finances, housing and any legal requirements. Let me say it loud for the people in the back: DOCUMENT EVERYTHING. Why? To ensure that there is no confusion as to what your wishes and the wishes of your loved one are. Please note that any plans pertaining to your loved one, must be discussed with them. Understandably, different persons will have different levels of understanding, thus, as much as is possible and as much as your loved one can understand, please include them and honor their wishes. I mean, it is their lives that we are planning.
Things like medical information, personal information, financial information, likes and dislikes, dos and don’ts, work information, social activities, etc. should be documented in what we call a Caregiver Guide. This guide lists all important information pertaining to your loved one with DS. This guide is passed down from one primary caregiver (the main person in charge of caring for your loved one who has Down Syndrome) to the next. So, for example, a mother would pass this guide on to the eldest sibling of her child with DS, so that the sibling can now take over as primary caregiver. Imagine having this responsibility handed down to you and you don’t even know what medications your brother or sister is supposed to be taking on a daily basis?
Another important document is what we like to call the Important Documents Checklist, which comes in really helpful if the primary caregiver passes away suddenly. Imagine your dad, who has been caring for your brother for that last 10years, suddenly passes away. Did he have a will? Where is the will located? Did he have any insurance policy? Where is that paperwork located? Did he leave anything to your brother? Did he leave any money to care for your brother?
The Important Documents Checklist would have all this information and more. I can tell you, it is just an awful experience to be hit with the shock of suddenly losing someone, trying to grieve, but then having to put on a brave face and run around arranging the funeral and trying to locate important paperwork. We have to be careful as family caregivers and try our best not to undergo unnecessary stress. Our lives are already stressful as it is. We have to try to do what we can to ease the stress. Therefore, HappyDowns is pleased to offer you the Important Documents Checklist FOR FREE. Sign up HERE. (Hint: Once you’ve signed up, check your email to get your free gift).
We really hope this will help your family get started in terms of documenting the important information necessary to ensure the continued proper care of your loved one.
Future Planning is A Lot
When planning for your loved one’s future, there is a lot to consider:
- Who will be the next primary caregiver?
- What legal right will the caregiver have over your loved one? Guardianship? Power of Attorney?
- Where will your loved one live? Group home? With family? Alone?
- How will your loved one’s life be financed? Will you leave an inheritance? Government funding? A Trust?
That is why the planning must start now. Please do not delay any longer. If you fail to plan, your loved one and the person forced to take over as caregiver will both have a hard road ahead of them…something I am sure you do not want.
What is Your Plan for the Future?
Please, do not let the year end and you are still without a plan. Start the conversations with family and friends. Hard work is always made simpler when you have good support. Together, we can make the load lighter.
If you have already started planning for the future, what tips would you give to our caregiver community?