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My Father is 82 with Alzheimers and my Mother is 79 and showing signs of memory loss. We recently went to the movie and neither my mother nor father could recall anything about the movie immediately afterwards. Sometimes they are short tempered and my Dad may be getting a little paranoid. My mother continues to take a pain medication that makes her nauseus because she forgets and then becomes lethargic and calls the doctor to request anti nausea meds. I have written DO NOT TAKE on the bottle, but still she does. My Dad freaks out and wants to take her to the ER. Rinse and repeat.

They are not eating well and are often confused and repeat themselves. They are extremely dependent upon my sister who lives nearby, but accuse her of not caring or visiting when she has them over 3 times a week.

They are low income and I am paying what they cannot, but I can not maintain the expense. I know they will start needing a little help, whether transportation or meals brought to the house or a little financial assistance with their bills. Also, they need to socialize, but disagree about going to church and are growing more reclusive and isolated. I am not sure where to begin to help them or find help for them. They live in NW Houston and I live in Chicago.

Any suggestions are most appreciated.

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A million thanks Jeanne! I will check into Social Services. God Bless you.
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Ah, this is so sad, so common, and so hard for you to deal with half-way across the country.

Where to begin ...

When my husband had sudden-onset dementia with severe symptoms (due to inflamation in the brain, which we didn't know at the time), I didn't know where to begin, either. I don't remember who urged me to call Social Services, and I know it was very hard -- we are not "welfare people" -- but I was desperate, and I did it. The kind social worker who came out had lots of brochures and papers with information about local resources. She knew which programs I should apply for. She strongly advised me to see an Elder Law attorney. I did and I began the process of applying for Medicaid. We had assets to spend down, there would be a community spouse (me) and the whole process took a long time. As it turned out, my husband's brain inflamation cleared up and he settled into early stage dementia. He has remained at home. The Elderly Waiver program he is in has provided many services. We have a high monthly deductible, fitting our income situation.

When it became clear that my mother needed help to remain in her little apartment, my sisters and I knew what to do ... contact Social Services in her county. She is a widow with no assets and very limited income. The application process went quickly, she didn't need an attorney, and she began receiving services immediately with no monthly deductible. The services have increased over time. She gets Meals on Wheels, a visiting nurse to help with medications, a homemaker once a week, products like a wheelchair, a walker, and a recliner with a lift mechanism. She has a medic-alert button, which she used when she fell last week. We are currently requesting a home health aid for help showering and other activities of daily living. If she ever needs to go into a nursing home the finanical aid will be in place, but the in-home services she recieves may be enough to prevent that. (Cheaper for the state and better for her.)

I don't know what the long-term solution is for your parents, but I suggest that where you begin is with the Social Services office in their county in Houston. Perhaps initially your sister should handle this, but once it is set up and your parents have a case worker assigned it might be possible for you to take on the main contact role.

Advice about the intake interview: Don't let your parents handle this alone. Those in need of help are notoriously reluctant to admit need! When the worker asked my mother if she needed help cutting her toenails she said, "Oh, no. My daughters can do that!" It is a good thing a daughter was there to say, no, we don't have the equipment or the skill or the desire to do that task! According to my mother she doesn't need help with anything, but we have given social services a clearer picture of her needs. I think the elderly might be afriad that they'll be carted off to a nursing home if they admit their limitations, but, realistically, the state would prefer to keep them home as long as safely possible.

Next, if I may go beyond your "where to begin" question, it is extremely helpful to have medical providers knowledgable about the special conditions of old age and of dementia. Being able to work with your parents' doctors is extremely helpful. I hope your parents will sign the hippa waivers to allow their doctors to talk to you and your sister. And if the two of you think a change of doctors is in order, I suggest looking for a geriatrician to beome the PCP. There is no cure for dementia, but some of the symptoms, such as anxiety that leads to paranoia, can often be addressed.

And then ... you and sister have lots of heart-to-heart talks about how you can work together to support your parents. As the geographically-close one, your sister has huge burdens. First and foremost, support her emotionally. To be accused of neglect when she is working so hard is painful. Make sure she knows that you know that your parents are not acting in their right minds, that their disease is driving these behaviors. Let her know that you appreciate her. Send her a little card once in a while. Have flowers delivered occasionally. Send a gift card for a nice Houston restaurant. Show her the appreciation she is missing from Mom and Dad.

Also see what caregiving duties you can take on long distance. Between you, figure out what things you can do over the phone or research on the Internet. How can you help without being physically present. I know that you have been helping financially, but after your parents are on appropriate aid programs, work with Sis to take on other duties. Also plan your visits to give her a break.

Your parents are very lucky to have two children willing to work on their behalf, even if they are no longer capable of knowing this. Bless you for caring!
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