I am new here. I am in need of someone to talk to. I am a guardian to my cousin with down's syndrome. She requires 24 hour care and I work full time to support us. The stress is killing me.
Her parents have passed away. My parents have passed away. Our grandparents have passed away. I am almost all alone in my care for her and I need strength to continue.
Hi Granola, I think that you are such an amazing person and so strong for caring for your cousin full-time. Do you have any family or friends nearby who can give you any assistance? As well, is it possible for you to seek a part-time caregiver at the very least? My aunt has been a caregiver to my grandmother full-time for the past couple of years and I understand how difficult it can be at times. Therefore, she is now considering hiring a part-time nurse to help her.
Thank you for your positive vibes.
I have a sister who watches my cousin while I work, but she will not continue much longer.
I can’t afford a caregiver and can’t get anywhere with assistance programs. She is too old for some programs, too young for others. She is too sick for some programs and too healthy for others. She is falling through the cracks of the system and I am exhausted from the battles.
I can’t support her alone and I don’t know what will happen with my sister so I stay worried all the time.
Anyway, thanks for letting me share.
Have a great day.
Hi Granola, I am so sorry to hear that you are having such a tough time with finding her an appropriate program. Is there anyone else in your family who can help you through this? Can you sister assist you in finding a program that can work? I know how exhausting this must all be, but I think that you are so strong for making it through all of this and I know that you will continue to do so. You are truly an angel. Please let me know if there's anything I can do to help you, even researching different opportunities.
Sadly, no. I have no other family. They have all passed away.I had a meeting with a caseworker yesterday and it seems my only option is to put her in a home. I promised my grandmother I would never do that and it kills me. In the long run I think that she would thrive more around people she can relate to, but it feels like I have given so much of myself to this endeavor all for nothing. my last chance will be to write my congressman and state representatives.
Granola, I can understand why you are feeling the way that you are feeling because of a promise to your grandmother, though please know that you have done absolutely everything to give your cousin a very good life. If you know that she will be happy in the home and thrive around others whom she can relate to, then why not give it a try. You can visit her often. I am sure that your grandmother just wanted to make sure that she was always in a happy and peaceful place, that's all, and she could have associated the home as something negative. I am sure that if your grandmother knew that she would be happy there and thrive more, then she would totally be for it.
Thanks. I'm sure you're right. But the blues are really keeping me down. I've made so many hard decisions these past two years. From putting my grandmother in a nursing home when it was time, to deciding to care for Michelle. My whole life turned around and has been centered around her. I finally got to a place where I thought I could take care of her. Although it involved a ton of sacrifice, it felt like the right thing to do and I had begun to settle into the idea. Now I'm back at square one.I don't know up from down anymore. Depression is taking over. I just can't help feeling like i've failed.
Granola, If you don't want a residential placement, then what exactly are you looking for? Day time supports only? Please know that 'putting her in a home' is not a death sentence. As you mention, most folks thrive in these settings these days as they are stimulated by staff hired to care for them. And remember they are HOMES. Therefore residents will learn to help with meals, personal care, and have a social life. Sounds like you've done so much, but don't consider making such a placement, a let down or giving up. You can still be active in her life. Let me know if you have more questions. Thea
Granola, you absolutely have not failed, you have succeeded. What you have done and continue to do takes the strength of an entire team, and you have done it on your own. Please know that you are doing the right things and you are on the right track. Stay strong and know that we are here for you. You are in my thoughts and prayers.
Granola, I am a caregiver to my elderly terminally Ill Mom. Caregiving is so tiresome and full of worries. Your cousin is lucky to have you. I worked for Goodwill for 8 years running a day program for older folks with develop ental disabilities. They spent 8 hours a day and had their choice of 3 different outings or staying at rec center for activities. I don't know what state you are in, but are you working with department t of MR? Group Homes are in most cases warm loving places with trained staff. I have been a guest at many of these Homes for parties, dinner or to visit. Most folks consider this their family and home. Your cousin should qualify for SS disability income and other support. Actually, your cousin may have had a fuller life if she had been placed in a group Home at a earlier age. She may have been able to reach a different set of skills with qualified staff. Your grandmother probably thought of a "Home". As the large institutions prior to the 70's. They were awful places, I have a cousin who was sent away and it was bad. After deinstitutionalzation a new system such as today was put into place. I am sure your grandmother didn't realize that things are different when she asked you to promise. If all else fails call your town's social services for a referral to appropriate help. Keep your chin up and know others on this site really do "get it". Thoughts and prayers are coming your way. KLB