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I can't find any support, whether formal or informal. Anyone else in my "boat"? She was diagnosed at age 55; is now 58. She had been an independent, never-married career woman. Very, very sad. Our parents passed away years ago and I promised them I would always take care of the "baby", who is 9 years younger than me.

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Caring for someone with AD, or early onset AD in your sister's case, is not a job for a sole caregiver. You don't mention what state you're in or if you live in an urban or rural area. Regardless, every state has at least one, usually several, Area Agency on Agency. They are a great resource for caregivers and can provide you with helpful information on programs, homecare agencies, and other information that can offer you support. Google the Area Agency on Aging for your state or city to get a phone number.

Promising to care for your sister does not mean putting your health at risk. If her care goes beyond your capacity to care for her, begin to look for care facilities where she will be given the care that you can no longer provide. If your sister has no or little assets, start to apply for Medicaid for her. Medicaid will open up some options for you.
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"Taking care" of someone does NOT mean you have to personally care for her.
"Taking care" of someone means that you are entrusted with making sure that they get the best care that they can get in a safe environment . This can mean that you become her ADVOCATE not "just" a caregiver. If she requires 24/7/365 care you alone can not do that. And if your house is not set up for her continued decline it is important that you seek out a place where she will be safe.
Look into Adult Day Care most places that have ADC have Support Groups that family or loved ones can attend meetings while the person is in the program. Most Memory Care Facilities also have Support Groups and there are usually no restrictions on having to be a resident or family member of a resident to attend.
You can also contact the Alzheimer's Association for groups in your area. They also have a Support Phone Line that is answered 24/7 by trained counselors.
The other person yo9u have to take care of is YOU and you have to understand that you can not do this alone and that you need help. Caregivers that come in and help are an option. Placing someone in Memory Care is an option your job is to determine what is the safest option for both you and your sister.
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Hi everyone,

Thanks for your informative and kind responses. My sister has spent 6 out of the last 8 weeks in the hospital...both admissions the result of very bad reactions to anti-psychotic drugs. After the first admission, we decided that our home wasn't safe for her anymore (she broke a rib pacing all night and falling b/c the meds made her dizzy) and placed her in a memory care home. Exactly two weeks after, she was re-admitted b/c of adverse effects of the new drug she was put on during her earlier hospital stay. She laid in a hospital bed for 4 weeks; when PT asked if she wanted to get up, she said NO and they walked away! This past week she has been in acute rehab - they had her sitting in a chair and walking within 6 days! She was just discharged today and I took her back to the memory home. It breaks my heart to leave her there, but I know that she is just as happy with the staff there as she is with me - maybe even happier given that I'm an emotional mess. I'm just so sad about her, although I have finally moved on from the anger stage of grief.
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Susan, where do you live? And what kind if support are you looking for?

Alz.org has great on-line resources and support groups I'm told.

Have you hired in-home help (using your sister's resources) so that you have time to do "me" stuff?
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I am going on year 7 with my husband , things have gotten extremely worse and I am looking at memory care facilities I did try to find in-home care but was told they did not have enough staff (plus he is somewhat abusive now ) so I was worried he would hurt the staff I hired. It is only unfortunately going to get worse for you at this stage he has broken all the cabinets , put holes in the walls, broke the faucets in the bathrooms and is now peeing on the floor , yesterday it took me 3 hours to get pants on him. I hate to paint and awful picture , hang in there I hope you get the help you need , it is extremely exhausting
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JoAnn29 Aug 2021
You need to see an elder lawyer who is well versed in Medicaid. You can have your assets split. His split will be spent down for his care in a NH, and then u can apply for Medicaid for him. You remain in the home and have a car. Your monthly income of SS and any pension, you may receive partial or all of it to pay for your living expenses. Check with you State Medicaid to find out if they pay for MC.
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Oh Susan, placing a loved one in a care facilty is the hardest thing we will ever have to do, in my opinion.

When my grandmother and grannie were in NHs, both with Alzheimers, just being there and trying to bring joy was the most important thing that I felt like I could do.

My grannie was much easier, more playful personality, we would take walks, share a coke, play catch with a stuffed animal, take care of her baby. Every activity was short lived, her attention span was pretty short, so everything could be accomplished in an hour. So that's what I planned for.

You have to find that sweet spot for you and your sister, find activities that you two can do together, keep a smile on your face and leave when her patience or attention is gone for that visit.

It is a sad situation but, it doesn't have to be sad visits and all tears. Of course that will happen, you just have to find and create whatever joy she is able to experience and even if she is struggling, you can still find joy for yourself in being there for her.

I pray that they get her stabilized soon.

Remember to take care of you during the transition and settling in.
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