The professional staff at the Alzheimer’s Association who take helpline calls answer questions on a wide range of topics. Below are some of the most common caregiver questions.
Q: I can’t get any rest! My mom is up all night, active and alert and ready to go. Then she sleeps all day. What should I do?
A: Any time you see a dramatic change in behavior, a doctor visit is probably in order. Maybe her medication needs adjusting, or perhaps there is something else going on that her doctor can address.
Otherwise, try ensuring she has more activity during the day – something physical that will tire her out. Mental stimulation can be helpful too, but be sure it is not too taxing, so as not to unnecessarily frustrate her. Try a simple puzzle or interactive game.
Put a bedtime routine in place. Restricting liquids after dinner time will minimize bathroom trips during the night. One or two hours before bedtime, establish regular habits like putting on soothing music, and changing into cozy pajamas. Be sure the mood in the house is calm during this period – eliminate loud TVs and other stimulation.
Consider whether your mom is experiencing sundowning. Sundowning is a phenomenon characterized by increased confusion, anxiety and agitation that begins late in the day, and it affects as many as 20% of people with Alzheimer’s. To combat it, try shutting the blinds and turning on lights. This will eliminate the external cues that trigger confusion. Schedule an enjoyable activity 30 minutes before she usually starts to get agitated; for example, if you notice your mom tends to sundown around 6 p.m., put on music she loves to dance to at 5:30 p.m.
Q: My husband refuses to take a bath. It’s getting to be a problem, and I’m tired of battling him. Any advice?
A: Resistance to bathing is a common issue for people living with Alzheimer’s. There are no easy answers, but start by relaxing the routine a bit. Evaluate whether daily showers are necessary; perhaps a sponge bath can be a useful substitute at times. One of our favorite conference speakers, Anna Ortigara, MSN, said at a workshop on bathing, “We didn’t bathe for the whole middle ages”¦ what makes us think someone has to bathe every day or every other day? A touch-up here and there can go a long way toward cleanliness and makes life easier on everyone.”
Resistance is often due to a person’s inability to understand that they need help. Your husband might feel that you are treating him like a child. Give him choices so he feels some sense of control. For example, ask if he would prefer a bath or shower. Does he want to take it before breakfast, or after?
Being nude might be making him feel vulnerable, and his skin might be more sensitive to touch and to cold. Heat up the bathroom to make it comfortable. Shower chairs and handheld nozzles might make him more secure. Maybe he’d like to keep a towel around one part of his body while you help him wash the other part. Be gentle, play soothing music, speak in a soothing way, and tell them what’s coming next: “I’m going to take the washcloth and wash your back now.”
Lastly, it can help to make the bath about going someplace. “We have fun lunch plans today. Let’s get ready and take a shower” may be an easier message for him to accept than “You are dirty and need a bath.”
Q: My wife of 30 years has Alzheimer’s, and I am her full time caregiver. She can’t be left alone in our home, which means I never get a break. I feel like I need help.
A: It sounds like you need respite care. People often are confused by the term, but respite is simply defined as “a short period of rest or relief from something difficult.” Rest is critical to your well-being and your ability to care for your wife. You need to plan for the fact that you’re going to get tired, you’re going to need help, and you’re going to need a break.
Respite comes in many forms, such as in-home care, short-term facilities, or other family members providing temporary care. Adult day care can be a great respite service too, if your wife is fairly mobile. It has the advantages of providing social activity, and allows you to rest in the comfort of your own home. It is also a good economical choice.
If you want to travel, or are in need of a hospital stay yourself, a short-term care facility might be needed. In this case it is particularly important to plan ahead, since your wife might need a TB test, and it might be difficult to find an opening.
Lastly, if financial issues are preventing you from getting rest, the Alzheimer’s Association, the VA, California Caregiver Resource Centers and other local agencies offer a variety of respite grants and services.
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