This is hard....

LondonSave1

Hello all....I'm new here and I am feeling so overwhelmed. I am the caregiver for my sister who has Alzheimer's and the things I have gone through over the past year has been exhausting. I have no other help and her Medicare has been cancelled, so I'm kind of on my own until after January when I can apply to have it reinstated again. She has become so mean to me and I am only trying to help her everyday to make life as comfortable for her as possible, but in the interim I feel as though I have lost myself. I've had to move in with her to keep an eye on her as she's at the stage where she has to be watched all day, everyday and she's constantly moving things throughout the house and forgets where rooms are and her sentences are no longer complete sentences. She's very easily agitated. I honestly don't know what to do at this point. It's so hard seeing someone that was so full of life and just a caring person become this shell and the drain of it all has me in tears daily! I have looked into memory care/AL facilities for her, so that maybe after Medicare is reinstated I can be ready to make some hard life changing decisions, but honestly there is a part of me that knows that is what she needs (and me too), but the other part of me feels guilty for even looking into facilities. Has anyone else experienced this feeling of guilt?

forbarbara

Welcome. I’m glad you found us, sorry for what you’ve been going through. You ask if anyone else experiences the guilt you’re feeling — all of us. This journey you and your sister are on is a roller coaster at best and a sh-t show at worst. But you can find a lot on this discussion: hints, advice, wisdom and LOTS of empathy. I’m sure others will weigh in and offer much help. So hang in there and keep in touch.

cdgbdr

I'm sorry this has happened. I hope you can sort the Medicare coverage out. If she had an advantage plan, she may still have traditional coverage until you can get that back.

Jo C.

Yes, absolutely - sky high guilt until a friend re-framed my thinking. It really, for me and many of us, was/is not true guilt, but instead, is deep, deep heartfelt regret and grief when matters reach such a dire point. Realizing that helped my emotions a lot to realize and understand the differences. Still painful and exhausting, but far better understood which was helpful for me.

I am so very sorry for what is happening and I can well imagine how difficult this situation is for you. Your Post does though, leave me wondering why Medicare cancelled regular medical coverage since regular Medicare does not usually comport themselves in that way. Did she use up and run out of benefits? Since regular Medicare does not cover residential care without special medically documented need for a limited period of time, does she have a special Medicare plan? Or, is it Medicaid that she has which does cover custodial care long term if criteria is met? If so, of course it will be a great help when it is restored. If her Medicare was "cancelled," was it because all covered days were used up including the Lifetime Days? Sorry to ask, but I am a little puzzled.

Medicare would not be a benefit for ongoing long term coverage of custodial care; Medicaid would be. Of course, one must meet qualifications for Medicaid benefits; much of it meeting financial qualifications. If that is not met, one must "spend down" one's own finances paying for one's own care until qualification amounts are met, or if income is too high, one uses some of their income to meet "share of cost" criteria. One need not sell one's house to qualify, so that is good news. Double check that for ease of mind if it is a concern in your situation. The state will most often not pick up coverage costs or full coverage costs if one has savings and/or income of their own that can be used to assist in coverage costs. If one has some income to help pay, then Medicaid, if criteria is met, can pick up the shortfall. If on Medicaid and receiving Social Security, some of that income is usually taken for, "share of costs."

I definitely recall how awful and severely difficult this all was when dealing with it for my Loved One (LO). Some initial confusion and challenges for sure. However; once all was finally in place, it was a huge relief not only physically, but emotionally. You will work through this and it will get settled; it is time and effort to get it where it needs to be.

If you can speak with a Social Worker either in a care facility, or at any other place working with such persons/patients, that could be very helpful for moving things forward as best can and at least help to provide information to assist you in putting all requirements in place. You may also want to contact the Alzheimer's Assn. Helpline at (800) 272-3900 - ask to speak to a Care Consultant (social worker), where you can more than likely find more information.

Let us know how it is going, I send warmest and best wishes your way for all to go well,

J.

SDianeL

So sorry you are going through this with your sister. Ditto what Jo C posted. Medicare will not pay. See if she qualifies for Medicaid. Ask her doctor for a Social Worker. Also read the book “The 36 Hour Day” which helped me after my husband’s diagnosis.