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Questions & Answers - December 2003



Mary C. Fridley, RN,C is a registered nurse certified in gerontology with more than twenty years in the geriatric health field. She is the owner of Gero-Resources specializing in caregiver, eldercare, and successful aging education and advocacy. Mary is also an author of two caregiver advice columns and contributes articles to various websites. She is available for speaking engagements and would be happy to answer your questions or concerns while maintaining your anonymity.

About Mary
Mary's Column Archives: Caregivers'
Questions & Answers

Dear Mary,

Would you be kind enough to give me some pointers for dealing with a loved one with Alzheimer's disease during the holidays?

People with Alzheimer's disease can have strong reactions to the hectic pace and excitement around them. To minimize unwanted behaviors it's important to maintain daily routines as much as possible - avoid dragging mother out in the evening if she's normally asleep by 9 o'clock. It's more practical to hire someone to stay with her at home so you can enjoy yourself.

It's also important that your loved one feel included in the festivities. Leaving her out creates anxiety and boredom and she may start packing to "go home". Encourage her to help with preparations but keep in mind that the amount of participation is based on her level of understanding and physical ability. Assume a "so what?" attitude by keeping tasks simple and outcomes unimportant. For example, invite her to help bake cookies and let her cut them out with a cookie cutter. If some are lost to the floor, so what? Many times it's easier and faster to do it your self, but witnessing the satisfaction she gets from feeling needed is worth it.

Whether at home or at another's, make sure there is a quiet room for her to retreat to. Put a sign on the door that says it is off limits to others. Encourage family members, especially grandchildren, to spend time with her reminiscing about childhood holidays. You can even recreate a tradition from the past that she would enjoy.

Maintaining structure and involvement will go a long way in relieving stress for both of you. It's also beneficial to hire someone to stay with her or use the services of an Adult Day Center. Don't forget to carve out time each day for you to relax and catch your breath.

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Dear Mary,

I recently lost my husband. He had been ill for several years, so it was no surprise when he died. I was relieved for him because he had suffered so much, but I was also relieved for myself. This makes me feel selfish and guilty. On the other hand there are days I can't stop crying because I miss him so much. I need to know if what I'm feeling is normal.

Dear Reader,

I'm sorry for your loss. Yes, your feelings are normal, however it is not selfish to feel relief for your self. Whenever a "burden" is lifted, there is a sense of relief. To consider care giving a burden is socially unacceptable but it is a heavy load and release from its weight is welcome.

The relief you feel is coupled with the reality that he is gone forever and have lost your role and identity as caregiver and wife. The challenge is to reorganize your life and embrace the future without him. This will take time. Grieving is cathartic and has no time limit and those days of crying are healing. Slowly you will emerge from the darkness to seek the joys of life and allow each day to unfold with hopeful expectation. Grief counseling or a support group can help you through this difficult time.

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Dear Mary,

My father has come to live with me because he is no longer able to care for himself. Personally, I think he's just being lazy and can really do more than he lets on. He has emphysema and uses oxygen, but other than that he's in good health. He's always complaining about being tired and gets upset easily. He also takes forever to get dressed and eat. I didn't realize how much his attitude would bother me until he moved in. I want to help him, but don't want him to become dependent. Am I expecting too much of him?

Dear Reader,

Probably. Fatigue and anxiety are classic symptoms of emphysema. Due to air hunger – feeling short of breath all the time – anxiety is a constant companion. Fatigue is a consequence of poor lung capacity and air exchange and he can become exhausted from doing simple tasks.

Be patient, don't rush him, and allow enough time for him to complete his activities of daily living without criticism. Eating is difficult because it's hard for him to chew, swallow, and breath at the same time. Filling the stomach with a large amount of food puts pressure on the diaphragm making it more difficult to breathe, so present him with small frequent meals. Be sure his food is soft enough and cut into bite size pieces to avoid fatigue from chewing

Patience and understanding won't make him dependent but treating him like a child will. Don't fall into the trap of doing everything for him to save time.

I encourage you to get more information about emphysema by contacting the American Lung Association at: 1-800-586-4872 or www.lungusa.org.

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