Dear Mary,

I'm a big fan of your column and have a question for you. Two months ago my mother, who has Alzheimer's disease, quite suddenly began refusing to leave the dementia unit of the assisted living facility where she has lived for over a year. When the residents in the unit go to the "open" part of the building for entertainment or parties, she refuses to go. Before this, she was going out every day for a car ride and ice cream. We've tried increasing her dose of a medication that helps control delusions but it hasn't helped. She says she can't go anywhere because if she leaves "they" will move new people into the ward and she can't afford to feed them. What's the best way to handle this?

Dear Reader,

Sometimes there isn't an easy answer but constant reassurance and validation will help. For example, tell her that you, too, are concerned about how expensive it is to feed many people and offer to "help". This is not buying into her delusion but validating the anxiety she feels. Also ask her where she is and who "they" are. Does she think she's at home and responsible for them? What in her history would make her think this way? It may go back to early childhood and the depression era. If she absolutely refuses to go out, let her be. Forcing her will create more anxiety and behavior issues. Increasing her medication even more or changing it is of course an option, but she may have side effects like sedation and dizziness, setting her up for falls. The activity director should be able to suggest activities that will make her feel useful which she can do one-on-one with you or the staff.

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Dear Mary,

I have a mother with Alzheimer's disease and she is in the later stage. I guess she is about 1 ½ to 2 years of age cognitively. My husband and I moved in with her four years ago to keep her at home and I am her primary caregiver. She has been most pleasant to care for but I am exhausted and feel guilty because I get upset with repeating so many things like instructions for where the bathroom is and "yes it's OK to go". I guess I should be grateful she is still continent. To top it all off, my husband was diagnosed two years ago with the same thing!

Most days it's so hard to figure out which way to go. My husband has had to retire and doesn't know what to do with him self. He needs instructions for just about everything and I feel so overwhelmed. I am disabled my self and feel like I'm paddling against the tide, alone, with my responsibilities. Do you hear of many others in similar circumstances? I'm coping as best I know how but feel there must be a better way of doing things. Do you have any suggestions that may help? Thank you for your ear.

Dear Reader,

My heart goes out to you. If you haven't done so, please call your local Area Agency on Aging and inquire about services available not only to help you with caregiving responsibilities but also with your disability. There are programs that provide for home care and respite (time off). One of them is the National Family Caregiver's Support Program. Request a home evaluation, too, to help secure services and guide you with future planning.

It would also be helpful to share your problems with other caregivers. You can find a support group in your area by again calling the Area Agency on Aging or the Alzheimer's Association at 1-800-272-3900 or www.alz.org.

Dear Mary,

My mother is 81 and has been in a nursing home with advanced Alzheimer's disease for two years. I am an only child and have taken care of her most of my adult life. She has lived with me since my father died 17 years ago and it has been difficult. I am 52 and at the present time in my second marriage having just celebrated our second anniversary.

I am living with guilt because I hate to visit her in the nursing home. She was not an outwardly loving mother and never told me she loved me, but I gave her everything I had. Some days when I visit she knows me, on other days there is an empty look that just kills me. I was going daily but it was to taking a toll on me. I now go about two or three times a week but on those days I wake up with dread. Is this normal? Sometimes I wonder if she will out live me. Do you have any words of advice?

You have been through a lot and given your best. The last insult is that your mother doesn't recognize you and the little child in you is screaming for acknowledgement and love. Yet, the rational adult in you expects to be the dutiful loving daughter regardless of the past. So, yes, the turmoil you are feeling is normal but your emotional health is in trouble.

It is good that you have cut back on your visits but you must do more. I strongly encourage you get counseling. Caregiving for one person is a difficult task but you are caring for many - the little child, adult, and lost soul, as well as your husband and marriage. Counseling will give you an outlet for venting and help you heal. The past cannot be changed, but you can learn to live with it in peace.

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