A day in the life of a caregiver: The Henleys

Follow the daily routine of an Alzheimer’s caregiver. In the span of her 17+ hour day, Karen Henley, 48, must juggle work, raising two teenage children and providing care for her husband Mike, 44, who is in the late stages of Alzheimer’s and cannot care for himself. (Note: The following timeline is an approximation and not necessarily reflective of their current routine).

6:00 a.m. - Karen and her two children, Courtney and Brandon, get up. Karen helps them with any last-minute homework and helps get them ready for school.

7:30 a.m. - As the kids leave for school, Karen prepares Mike’s breakfast and morning medicine. Breakfast consists of pureeing pancakes, oatmeal, or French toast with a banana. Then Karen makes Mike’s drink for the day: a bottle of Gatorade thickened with Thick-It so that he can swallow the liquid without aspirating.

8:30 a.m. - Mike’s home health aide arrives. If the aide is out sick, Karen must take a day off from work. The aide gives Mike a sponge bath, changes his adult diaper and gets him dressed.

9:00 a.m. - Karen and the aide transfer Mike from the bed to his geriatric chair. It is a two-person job: one person stays at Mike’s shoulders to push and support him, the other person must be at his legs to help pull him down and into a sitting position. Karen usually leaves for work sometime between 9-10 a.m., depending on when Mike is ready.

9:15 a.m. - Mike begins eating his breakfast and takes his medicine. It can take two hours for Mike to finish his food and the three glasses of his specially-mixed drink that he must consume in order to avoid dehydration.

12:00 p.m. - The aide shaves Mike.

12:30 p.m. - Mike is moved from the geriatric chair into a hospital bed in the living room via a hydraulic powered-sling called a Hoyer Lift. The aide cleans and changes Mike.

1:00 p.m.- 3:30 p.m. - Mike naps.

3:30 p.m. - The aide cleans and changes Mike and he is taken from the bed back to his geriatric chair via the Hoyer Lift.

4:00 p.m. - Mike begins eating dinner. His meal consists of pureed meat, potato and a vegetable. Karen purees all of his dinners on Sunday night, places them in individual containers and freezes them for the week, a process that takes nearly an hour and a half.

5:00 p.m.-5:30 p.m. - Karen comes home and begins preparing Mike’s nighttime medications. Mike drinks another three glasses of his specially-mixed drink.

5:30- 6:00 p.m. - The aides leaves for the night and Mike takes his medications.

6:00 p.m. - Karen starts dinner for her and the kids.

6:30 p.m.-7:30 p.m. - Karen and the kids eat their dinner in the living room, next to Mike. The family watches television and talks about the day.

7:30 p.m. - Karen and the kids wheel Mike back into the bedroom and lift him into bed.

8:00 p.m.-8:30 p.m. - Karen cleans and changes Mike and gets him into his pajamas. She puts on an oxygen mask and either one of the kids or Karen stays with him in bed until Mike falls asleep.

9:00 p.m.- 9:30 p.m. - Karen cleans up the kitchen, puts away wash and walks the dog.

9:30 p.m.- 11 p.m. - Karen and the kids talk and watch television. They check on Mike, every 15 minutes, to make sure he is OK. The began checking up on him more frequently the past couple of years, after an incident where Mike rolled over onto a down pillow and nearly suffocated to death.

11 p.m. - Karen goes to bed beside Mike. Karen rarely gets a full night of sleep. She will often get up several times during the night to change Mike, check his temperature and make sure he is comfortable.