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Caregiver Burnout

Never did I think I would be posting my story online. But I am in need of support.

 

Let me briefly tell my story. My name is Scott and I am 24 years old. On November 22nd, 2015, my dad had a drunken fall and compressed his spinal cord, leaving him a quadriplegic incomplete. After a few months in inpatient rehab, he was sent home to me. I am an only child, without any other family support. It is just my dad and me. I had to give up finishing my degree in my final semester and leave my job to take on the full time responsibilities of caring for my dad. 

 

Since that time, I have learned how much work being a sole caregiver can be. But my biggest concern is my long term future. After discussions with my father’s medical team privately, it’s pretty clear that my dad will never be able to live on his own ever again. And since my dad needs so much care and help, I don’t have any opportunities to work and begin my own life.

 

I receive a small compensation from my local county for my caregiving services, but my dad and I have both been told he needs more help than just one person can provide. But they are all private pay options which neither I nor my dad can afford with our very low monthly income. 

 

My father, however, has become increasingly difficult to care for and the constant stress of the situation has put a strain on our relationship. I am under incredible stress and, quick frankly, I am ready to be done with this situation. I can no longer do all that is necessary to care for my dad, but he will not accept any outside help or nursing home options. 

 

I just dont know what to do anymore. While caring for my dad has been important, I need to look out for myself too and my future as well. 

AARP Expert

@ScottT326859 Hi Scott! My heart goes out to you...

 

You are so young. I was 21 when I first started caring for my grandparents but from a distance and I didn't provide much of the hands on care (because of the distance). But I somewhat understand the feeling that this huge thing in your life isn't what other people your age seem to be doing. It feels like you should be moving forward in other ways, and you're right on many levels. The trick is to find the right formula for your dad to be cared for, for you to have input and control and provide maybe some of the care, to feel good about what you are doing, and still address your own needs and dreams - even if it is at a different level or way than you had been prior to the big fall. 

 

I've been caregiving for various family members ever since my grandparents when I was 21 - so more than 35 years. I've had many different roles as a caregiver and now my Dad lives with me and has Alzheimer's and I provide a great deal of his hands on care. But he had long-term care insurance and he's a Veteran so we have that added income in addition to his Social Security and pensions. So I hire other caregivers to help. 

 

As Jane said, if your Dad is on Medicaid in some states you can get assistance to keep him in the home (he may already be if you said you do receive a small payment to provide his care that may be a Medicaid "cash & carry" program). Have you contacted your local area agency on aging to ask about other low cost, sliding fee scale or free programs to help? Find it at the Eldercare Locator at www.eldercare.gov. 

 

I thought you might also like to be in touch with other younger caregivers - there is an organization called the American Association of Caregiving Youth that has resources and supports for younger caregivers (their site says 18 and younger, but I know they are responsive to young adults like you as well). 

 

Another resource that might be helpful as you look ahead is AARP's free Prepare to Care Guide - download it from HERE.  It helps walk you through the steps as you put together a plan for the future.

 

A caregiver support group might be very helpful too! They often have educational offerings as well as opportunity to talk and learn and get support from other caregivers. HERE is an AARP article about how to find a support group. 

 

Sending you support and a virtual warm hug! You are AMAZING! 

 

Take care,

Amy Goyer, AARP Family & Caregiving Expert

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AARP Expert

Hey Scott,

Miss Aerosmith is right: you do need to finish your degree. But first, yes she's right, there's other work to do. If you and your dad have a low income ( you have NO income, right?) then he's probably eligible for Medicaid, and once he has Medicaid, many states have a program that provides home care INSTEAD of nursing home care. Getting long term care medicaid, and then getting into the program for home care, is going to take time, but this is the path you can take. Who can help you with this? The staff social workers at the area agency on aging, and you can find the one that covers your area at www.eldercare.gov. Meet with them. Get a plan together. It's a total pain in the tuchus. And it must be done.

     I'm sorry but your dad does not get to dictate who cares for him, especially if you keep him home. Sorry pops. Your dad doesn't believe it now, but he'll actually enjoy the company of the people who will care for him. He fell off his high horse. The older generation does not have the right to completely derail the development and flourishing of the younger generation. Once he's had the glorious experience of sitting in his own **bleep** for a bit, maybe he'll realize that he loves his son enough to let him have a life, besides caring for him.

     I can be blunt. 

So. Does your dad have any siblings? Are there any cousins? Any other family near you? I do hope that he too is not an only child. His sister or brother does not necessarily have to change his diaper, but a little morale support? A visit now and again? Help with the paperwork? You are not an island and neither is he. 

    Tell us more, Scott. Please get some help by calling the agency, by being firm AND loving with your unfortunate father, by seeing if there is anyone in the extended family who can help in some way. By taking care of yourself. 

    And please write more.

 

Jane

Honored Social Butterfly


@ScottT326859wrote:

Never did I think I would be posting my story online. But I am in need of support.

 

Let me briefly tell my story. My name is Scott and I am 24 years old. On November 22nd, 2015, my dad had a drunken fall and compressed his spinal cord, leaving him a quadriplegic incomplete. After a few months in inpatient rehab, he was sent home to me. I am an only child, without any other family support. It is just my dad and me. I had to give up finishing my degree in my final semester and leave my job to take on the full time responsibilities of caring for my dad. 

 

Since that time, I have learned how much work being a sole caregiver can be. But my biggest concern is my long term future. After discussions with my father’s medical team privately, it’s pretty clear that my dad will never be able to live on his own ever again. And since my dad needs so much care and help, I don’t have any opportunities to work and begin my own life.

 

I receive a small compensation from my local county for my caregiving services, but my dad and I have both been told he needs more help than just one person can provide. But they are all private pay options which neither I nor my dad can afford with our very low monthly income. 

 

My father, however, has become increasingly difficult to care for and the constant stress of the situation has put a strain on our relationship. I am under incredible stress and, quick frankly, I am ready to be done with this situation. I can no longer do all that is necessary to care for my dad, but he will not accept any outside help or nursing home options. 

 

I just dont know what to do anymore. While caring for my dad has been important, I need to look out for myself too and my future as well. 


I am so sorry Scott.  You are in a very difficult position.  You might feel better if you take some action.  I would start with compiling all the info you are going to need.  List of assests that are his that can be used for care and support.  Consult an attorney if you need to.  A list of options for short and long term care housing etc.   A list of support services available in your area both free services and cost for care services.  Then you need to sit down and have a conversation with you dad and you need to make some decisions.  Are you willing to assume this care?  Regardless of the legal and financial responsibilites, you have to do what is right for both of you.  

ps  you need to finish that degree!

Life's a Journey, not a Destination" Aerosmith