Dear Mary,

I’m responding to the letter from the person who was not fortunate enough to be a caregiver and wants to scream when she hears people talk about the burdens of caregiving. You were right to tell her not to pass judgement until she walks in my shoes.

I’ve experienced both physical and emotional illness from stress as well as joy during the many years I took care of my husband. I loved him very much, but if I had to do it all over again I’d seek help with his care in the beginning. Like you say, we have to take care of ourselves first before we can take care of someone else. Thank you for setting the record straight.

You’re welcome. Your experience and hindsight are invaluable. I hope you are sharing them with others who are walking the caregiver path.

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Dear Mary,

I have two sisters who live out of state that visit our mother about twice a year. I am the main caregiver for her and bend over backwards to keep her safe and healthy. She lives alone and lately has been falling a lot and calling me during the night. These nightly calls come at all hours, it’s like she doesn’t know what time it is. I think safer housing is needed, someplace where she is supervised and help is available. However, when I called my sisters to discuss it, they don’t believe me. They say I’m blowing things out of proportion. They aren’t here to witness the decline and Mother sounds pretty normal on the phone. I’m suffering from lack of sleep and am afraid for her safety. What can I do to make my sister’s see that she needs a more supervised environment?

It is very difficult for children to accept the decline of an aging parent and talking on the phone can give no indication of the problems. The best course of action is to get your mother evaluated by an independent source, like the Area Agency on Aging or a private geriatric agency. They will give you an objective opinion of your mother’s functional and cognitive abilities, and make recommendations for safety. If alternative housing is recommended they can direct you to those resources, too. Get a copy of the evaluation and send it to your sisters then have a family meeting.

The most important issue is her safety. Seeing safety as the number one priority makes the decision process a little easier. No one is ever ready to move a loved one from her home, but knowing that she will be safe and her needs met, makes it more acceptable.

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Dear Mary,

I’m being driven to the brink of insanity by my mother’s incessant repetitions. No matter what I tell her to do she asks, “why?” over and over again. If I tell her to brush her hair she asks, why? If I tell her to take a shower she asks, why? Each time I answer her she responds with, why? Some days I feel like I’m going to lose it and explode. I know it’s part of dementia but how can I stop it?

It’s a memory thing - by the time you are done explaining she has forgotten the answer. Because she lacks insight she can not understand the need for personal hygiene, but has enough understanding to know she is being treated like a child. It takes a tremendous amount of patience to keep your cool in this situation. Instead of telling her what to do, guide her to the mirror and suggest she comb her hair while you comb yours. Lead her to the bathroom and help her undress and bathe while distracting her with pleasant conversation. If she persists with “why?” answer calmly and reassuringly. The “why?” may just be her way of responding to what you’ve said and it may not be necessary to answer each repetition.

Remember all behaviors are self-limiting and eventually this too will pass.

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Dear Mary,

Summer is coming and I’m planning to fly to visit my son. My husband has early Alzheimer’s disease and I want him to come along. How should I prepare for the trip to make it less stressful for him and me?

Changes in the environment can cause anxiety in a dementia-affected person, so it’s important to maintain routine as much as possible. Call the airline and let them know that your husband is disabled. Schedule the flight with as few layovers as possible and request transportation in the terminal and aisle seating on the plane. Always stay in physical contact with him. If you don’t trust him in the restroom alone, go with him to a family designated one in the airport. Bring plenty of water, snacks, and easy games like cards for the plane. When you arrive at your designation plan to spend the next day or two quietly, giving him time to settle in and get his bearings. Maintain the same routine as home for waking, eating, and sleeping. If he becomes anxious from too much stimulation have a quiet room available for him to retreat to. Be sure your son and his family are aware of your husband’s limitations so unreasonable expectations aren’t made of him. Have fun.

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