Members of the AARP Caregiving Advisory Panel answer your questions about care transitions, hospice care, palliative care and assisted living. Bookmark this page and come back to read new questions and answers that will be added on a regular basis. Have a question? Send it to us.
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We would like my mother-in-law, who has dementia, to go into assisted living or to have someone come into her home to help, but she adamantly refuses either. How can we make this painful transition easier for her?
Frame a move to assisted living not as a way to lose independence, but rather as a way to get a whole building filled with new friends and lots of activities just down the hallway. Tell her how much you worry about her and how accepting some help would be a gift she would be giving to you. Don't approach it as a permanent change. Ask her to try it out. Ask her doctor to give her a "prescription" for getting some help. It is amazing how much authority the doctor's orders carries.
Take her to visit someone in an assisted living residence. Talk about how nice the place is and then get her to tell you what she liked about the person's living arrangement. Then use her examples as support for a possible move. Ease into the transition by introducing help in the home as a friend of yours stopping by to say hello occasionally.
My sister-in-law is terminally ill. Her husband (my brother) has been providing all her care, with some help from the rest of the family. I'm wondering what else we can do. What can you tell me about palliative care and hospice care?
Hospice and palliative care are exactly what would help your sister-in-law and the whole family. It provides a complete circle of care and comfort to the patient and the family, including nursing care, personal care, emotional support and spiritual help (if requested). Talk to her doctors and other health care providers to get a referral to a hospice and palliative care group near you. Medicare coverage includes hospice benefits. Hospice and palliative care are all about controlling pain and discomfort, while providing a supportive environment to the patient and family.
My parents lead very active lives, but both recently have been diagnosed with Alzheimer's. Their doctor told my brother that they are incapable of taking care of each other and are unsafe. My parents do not want to go to an assisted living facility and will not consider in-home help. My brothers want to force them to look at a facility. What are our options?
It is always disturbing for families when parents receive a diagnosis of Alzheimer's or another dementia. It is also very important to understand the disease, including the progression of it. Not everyone with a diagnosis needs to be removed from his home or to stop driving. The Hartford insurance company has a terrific booklet, "At the Crossroads," (PDF) about dementia and driving.
It sounds like the doctors might not have a complete picture of how your parents are functioning in their home. An assessment by a professional geriatric care manager might be valuable. They can evaluate your parents' situation and make some recommendations about what is needed. They might suggest a move or identify community resources that could provide needed assistance. To find a geriatric care manager nearby, go to the National Association of Professional Geriatric Care Managers.
Finally, remember that our parents have the same rights that all adults in our society have. Unless the courts have determined that they are so compromised they can no longer make decisions for themselves and are in need of court-appointed guardianship, at all times we need to respect them and support their desire to remain in control of their own lives.
Elinor Ginzler, former AARP staffer, is currently the senior director of the Center for Supportive Services at the Jewish Council for the Aging (JCA) in Rockville, Md.
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