It's so depressing to see my grandmother deal with Alzheimer's. How long can it go on like this?

A fellow caregiver asked...

My aunt is 94 years with Alzheimer's. She now lives in a nursing home as she needs complete care. I do not know when she was diagnosed with Alzheimer's, but know that there was a decline over the past year. The only thing I know is that she has high blood pressure, but is otherwise healthy. She has no idea who I am and speaks only words or short phrases. How long can she possibly go on like this? I try to summon the courage to see her, but can't get myself to go see her...it is so depressing. this is not the person I remember. The nursing home is not helpful and will not give me information, as her daughter has the family lawyer in charge of her care. I am at my wits end and hate to see her like this. Thank you for letting me vent, but, I am so tired of this emotional rollercoaster.

Expert Answer

Ron Kauffman is a certified senior advisor (CSA), senior lifestyle radio host, syndicated newspaper columnist, and the author of Caring for a Loved One With Alzheimer's Disease. In addition, Kauffman is also the primary caregiver for his mother, who has Alzheimer's.

I understand your emotional roller coaster regarding your aunt, and the feelings of powerlessness and sadness you feel as you witness her decline.

Your question as to how long your aunt's situation will continue is a frequent one, as the same concerns arise with families of patients in comas, suffering terribly debilitating diseases like terminal cancer and so many other problems associated with life and health. Only God can answer that question for you and others, but I can give you some guidance and suggestions regarding your visit and emotions that should be helpful for you.

First, you can take some comfort knowing that your aunt is receiving precisely the type of care required of many very elderly and particularly those patients nearing or at the end stages of Alzheimer's disease and life in general.

At 94, your aunt, regardless of her memory loss, is nearing the end a very long lifetime, having lived well beyond the averages, and apparently for most of those years, had done so outside of a nursing home. Therefore, you can take solace in the fact that you may have had a lifetime of wonderful visits and memories. The fact that your aunt is no longer the person of years ago doesn't diminish the love you had for each other. Your role has changed, and you can still make a positive difference in your aunt's life.

One of the things you can do is to continue your visits. People with memory loss continue to enjoy the love and attention of visitors. You might search for some photos of you and your aunt from as far back as you have them, and ask her if she recognizes the people in the photos. It might surprise you to know that while today she may no longer remember you, she might recognize you and herself from decades ago. Regardless, hold her hand and talk to her about the wonderful times you had together and recount some of the memories from years ago.

As for summoning the courage to visit your aunt, understand that she suffers from an illness that is stealing her memory and everything you remember about her. Do your best to remind yourself that you're visit is about her, and that your sadness is a normal reaction and emotion, but not seeing her would be even more hurtful.

Concerning your desire for more information, neither the facility nor the attorney is permitted, under HIPPA laws of privacy, to give you information about your aunt that is considered confidential. But don't despair. Knowing the medical details won't change a thing, and no rational person would be so unwise as to offer a predicted date of death. You might ask the facility, the attorney or other family members to notify you if and when your aunt's condition changes to where she is considered to be actively dying, a stage just prior to imminent death.

None of this is pleasant, but on some level, even without recognition by your aunt, she'll know that you're there out of love and concern, and you can sustain your feelings for her based, not on her current condition, but on the years of shared experiences. It will do both of you a world of good, and you can feel good knowing that you, among all the members of the family showed the true meaning of the words "love and family" even in the most difficult of times.

Thank you for being there, for caring, and for showing exceptional courage in the face of emotional adversity.