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Everyone on this site is a god send to me. It's helpful to have others' stories to help get through caring for an Alz patient. If you are new to this, here's my advice, as a daughter caring for an early-onset Alz patient: (1) take care of your own mental health; you didn't cause this disease in your loved one and you can't fix it; be compassionate but set boundaries and stick to them. This means taking time for yourself and not feeling guilty if you have screaming moments or if you hire a caregiver or if you move mom into a crappy nursing home; you are doing the best you can do in a very difficult circumstance. (2) consider that some of those moments when you feel "guilty" may instead just be feelings of grief or simple humanity; you have nothing to feel guilty about, and the negative feelings inside you may just be borne from being a human being and having natural sadness at watching a fellow human being suffer with this disease. (3) As early as possible, get your loved on to talk to you about end of life care; figure out how it will be paid for and who will do it; get all the legal documents in place like a DNR, living will, health care surrogate and power of attorney. You can't get power of attorney after the person becomes incapacitated, and at that point, you will be required to get court appointed guardianship instead, which is VERY expensive. If your loved one refuses to talk about it (mine did) then do the best you can and don't beat yourself up for their lack of preparing for the future. Medicare does not cover Alzheimer's care; you will need tens of thousands of dollars a year to pay for this person's care or you will need Medicaid, so find out early how Medicaid works in your state. (4) Realize that Alz. patients require a whole army of nurses and aides at the final stages. You can't do it alone. Get help! (5) If they get mean, nasty, and aggressive and you just can't take it anymore, ask your doc about medications; if it's after hours, check them into the emergency room and tell the hospital staff they are an advanced Alz patient and they are beating you up and you can't do it anymore; I had to do this with my mom, and they kept her for 3 days then sent her to a psych. hospital for another 3 weeks to get her meds "right." (5) Carry a little piece of paper that says something like "My mom has severe Alzheimer's. Please excuse her behavior. And please watch out, she may haul off and hit you." (6) Use this site again and again and again. The community of people who know what you are going through will be tremendously helpful! I'm sure many others on here would offer other bits of advice, or may disagree with mine, so at the end of the day, trust your own heart and do what you feel is BEST for YOU in your individual circumstance.

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Agree!!!
And when someone asks..."How can I help?"
Give them a task.
People want to help they just don't know what to do.
Say
"can you sit with Mom on Thursday from 1 to 3 I have a Doctor appointment".
"can you pick up a loaf of bread and a gallon of milk next time you are at the store?"
Do not hesitate to ask. If someone can not do a favor for you they will let you know. Friends want to help you they just don't know what to do.
Take care of yourself as well.
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Thank you, your kind words of advice about self forgiveness have greatly helped me in a time of need.
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Very well said!
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