A support system, according to Merriam-Webster, is “a network of people who provide an individual with practical or emotional support“. By that definition, it is clear that a support system is something that is needed by all family caregivers. But, let’s get real…the sad truth is that many caregivers have no support system. Zilch. Zero. Nada.
We all know of that parent with their child who has Down Syndrome and the other parent is nowhere to be found. Or the sibling who is unmarried and has no children, or the one sibling out of a group of three or more who gets no help from the others. Whether you find these situations surprising or not, whether you believe it should be this way or not, the reality is that thousands of family caregivers are essentially on their own.
So, is that it? If you fall into this category, should you just give up? Definitely not! We at HappyDowns believe in finding a way…and sometimes this means creating your own way. So, let’s look at where we can start to address this issue.
Start With You
Who can you control? You (although, based on some of the decisions we make (like that last Ex), the jury may still be out on this on). Nevertheless, the fact remains, you definitely cannot control others, so your best bet still lies with you. You have to learn to be your strongest support and this is only possible if you take the time to care for yourself.
You must cut yourself some slack and be kind to yourself. I know as family caregivers we can be very judgmental of ourselves. We easily point out all we do wrong…all the bad decisions, what we should have done way back when, etc. I am not knocking accountability and being honest with yourself, but do not forget to be honest about the fact that you are doing the best that you can. You have done some things right…yes, you have…remind yourself of these things.
Whenever negative thoughts come, confront them! Break that negative cycle. Yes, I may have made a bad decision here, but right now, this is what I am doing to help make things better. You are a human being, there is no way you will get everything right and always make the best decisions…this is absolutely ridiculous…nobody does this, so why should you?
You also need to end all negative relationships. If a relationship is not helping you grow, walk away. You have enough dealing with. You need support, not things that are sucking the life out of you.
I Have No Family
So, you are in the situation where you have no family member to help you with your loved one who has Down Syndrome. Ok, let’s look at your friends and neighbors. Who do you have a good relationship with? Who do you trust? Identify these persons and ask for what you need. No matter how much people love and care about you, they cannot read your mind. And let’s be honest… a lot of us caregivers walk around like we are big, bad and strong, 24/7, and we need no help whatsoever because we got this.
We need to stop this mess! We all need help. This is not a sign of weakness, it’s a sign that you are from planet Earth.
Approach your friends and neighbors and ask for help. Learn how to start the conversation here. Be specific about what you need (most persons suck at guessing games). If you need your neighbor to help you with the laundry this weekend, say so. If you need your friend to pick up some groceries for you, say that. Many friends and neighbors actually want to help you, but have no clue how to do so. Most persons will not be available every day or week, but will gladly jump in to help when they are available. Give them a chance to help.
I Have No Friends
Your situation may be one where you have no family nor friends and neighbors to help. I must admit, this one is tough, BUT there is hope. If this is you, you have no choice but to become verse in every and all programs available to you through:
- The government
- Disability foundations
- Religious groups, e.g., churches
- Professionals, e.g., counselors, estate planners, insurance companies
Maybe, it is best to start with your local Down Syndrome or disability foundation. These organizations usually have a contact list of government institutions, medical and other professionals that will assist families like ours. These foundations also normally provide grants for different things like eye testing for your loved one, school fees, entrepreneurship, etc. Thus, they are very useful. You also get the chance to meet people…persons who understand how hard caregiving can be and thus, this is a great place to make friends and build relationships.
Join your local disability and Down Syndrome foundations today! Let your issues be known and get the help you need.
In relation to government institutions, ask yourself:
- Do they provide respite care?
- Do they provide grants to persons with Down Syndrome who have their own business?
- Do they provide housing or employment opportunities?
- Is there some kind of welfare benefit that you qualify for?
- Will they pay you to be a caregiver?
Yes, the government oftentimes moves at the pace of molasses and the amount of red tape present can strangle an elephant, but do not let that deter you. Get the information that you need.
Other areas to consider:
- Does your local church or religious group provide any type of support for families like yours? Maybe you have to be the one to start such a program.
- Is there a local Meals-on-Wheels program?
- Can you afford to hire an in-person caregiver to help you on a daily of weekly basis?
- Is there something new that you want to learn, e.g., painting? Is there a local art class nearby? Guess what…going to classes and volunteering at community groups is a sure way to meet new people and make friends. Do not be afraid to put yourself out there…that is how you will build your support network.
Why is Social Support Important for Family Caregivers?
Two words: mental health. You must protect your sanity. There is no way caregiving can be a one man show. It is unhealthy to pour your entire self into the care of someone else, whilst neglecting your own care. There is no faster way to reach the destination of Caregiver Resentment or Compassion Fatigue…neither of which is prime real estate.
So, whilst you may not have any support in terms of family and current friends, it is possible for you to make new friends and use the resources available from various institutions and professionals to build a support network for your family.
We at HappyDowns wish you all the best. Let us know what resources you have found to be helpful in your neck of the woods.