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Alzheimer's Caregiver Diary: Tips from the Trenches (Part 1)

Friday, May 8, 2015

Let’s face it, no website, book, pamphlet, or blog (including this one) can fully prepare you to be an Alzheimer’s Caregiver for a spouse or loved one. While you might learn about the disease from the internet or a brochure, nothing is as enlightening – and overwhelming – as first hand experience as a caregiver. However, understanding that you are not alone and that millions of families share some of the same experiences may provide you consolation, and possibly inspiration.

The Alzheimer’s Association describes Alzheimer’s Disease as the most common form of dementia, accounting for more than 5 million cases in the United States, a number likely to increase as baby boomers reach the age of 65 where Alzheimer’s typically begins to take its toll. There is no cure for Alzheimer’s Disease, and the steady decline in a patient’s cognitive ability requires deep resources of compassion and patience within a caregiver. (learn about the 4 A’s of Alzheimer’s)

At Hill Country Care Providers, often we are brought into the lives of a family when a spouse or other family member has done all he or she can, has reached a breaking point and needs 24/7 professional home care. We offer tips and resources to these families, but we ourselves also learn from the many experiences these families bring to us. We are amazed and inspired by the family caregivers who have themselves battled in the trenches for years.

One such extraordinary person, Mr. Curtis Grove, went from knowing nothing about the disease to being a 24/7 caregiver of his wife, Martha, his friend and life partner of more than 50 years. We had the distinct pleasure of receiving some helpful tips and experiences from Mr. Grove that you won’t likely find in a textbook or brochure. His insights are numerous, specific, sometimes sad, sometimes funny, and always practical.

Altogether, Mr. Grove’s Alzheimer’s Caregiver Diary tells a story of love, compassion, patience and an ongoing change in the relationship between caregiver and patient. We’d like to share these incredible tips and insights through a series of blogs, and we hope you’ll share these with friends and family.

(UPDATE: Read additional blogs in this series, including Part 2 and Part 3.)

‘Be right back!’

That’s one of the important things I’ve learned as the 24/7 caregiver for my wife, Martha, who suffers from late-stage dementia. One effect of her damaged memory is a great feeling of insecurity with a fear of being left alone. Thus, she follows me from room to room (“Can I come with you?”). Or if that’s inconvenient, such as while toweling off after her bath, I can leave the room with the now familiar assurance that I’ll “be right back.”

Caregiver Challenge

Caregiver Tip / Insight

“Can I come with you?”

  • Insecurity
  • Fear of being left alone
  • Constant following

“I’ll be right back!”

  • Constant reassurance
  • Take life in 5-min intervals

 

Scavenger hunts

A new pastime is collecting articles from around the house and bringing them to me, usually standing still while looking directly at me, seeming to expect some approving comment [see "Tasks"]. Often such items are fragile or otherwise inappropriate for such treatment. When I ask her to put them back, she has no idea of where "back" might be - information only a minute or less old. When the kids were toddlers, we were determined successfully not to childproof our coffee table and other no-touch places. No such luck in this case, and I finally resorted to taking everything away for storage, leaving a barren household landscape. There are some unknown items she has put in places not yet discovered.

Caregiver Challenge

Caregiver Tip / Insight

'Scavenger hunts'

  • Boredom-driven moving of things
  • Needing to do tasks
  • Needing approval

Be Prepared, Be Patient

  • Don't scold
  • Don't ask to put back (can't remember where)
  • Scavenger-proof fragile or valuable items

 

Tasks

One way to relieve the boredom is to assign tasks, asking her to participate in little things. Previously she could empty the dishwasher without help. Now, she hands each plate or glass to me to put in its proper place. Rather than walk to the curb alone for the mail, I invite her to go with me and ask her to get the mail from the box (a year ago, she could fetch the mail alone). At the grocery, her task is to push the shopping cart - with me at the front end guiding us around other shoppers. When she finishes her morning latte, she always brings the empty cup to the sink with an offer to wash it. Only a complete dummy would criticize her, if it were not perfectly washed.

Caregiver Challenge

Caregiver Tip / Insight

Boredom

  • Needing to do things
  • Needing approval

Give small tasks

  • Ask for help with simple things
  • Tag-team setting table, unloading dishwasher, getting  mail
  • Push grocery cart at store

 

Small Stuff

Several years ago Richard Carlson wrote a book with the descriptive title, "Don't Sweat the Small Stuff…and it's all small stuff." Recently at lunch, Martha was having trouble picking up a hot dog. With a little help, she got both hands on it and took a bite out of the middle! Everyone knows you're supposed to eat a hot dog from the end. I started to correct her hot dog style, then stopped with the silent reminder, "talk about small stuff!" Can't tie her shoelaces the right way? Be glad that she can still tie them any way. She often gets a paper napkin mixed up at meals, using it for a Kleenex; more small stuff.

Caregiver Challenge

Caregiver Tip / Insight

Lots of 'small stuff'

  • Eating differently
  • Using untensils, napkins wrongly
  • Dressing, tying shoes wrongly

Don't sweat the small stuff

  • Etiquette is not that important
  • Appreciate/acknowledge the things being done right
  • It's all small stuff

 

Look for more insights from a family caregiver over the next few months in our series: Alzheimer's Caregiver Diary: Tips from the Trenches.

For more tips for Alzheimer’s Caregivers, try these 30 simple activities that can be done in 30 seconds.

Areas We Serve

Based on where we have caregivers, we serve the following areas. 

Here they are sorted by name: Anderson Mill, Austin, Barton Creek, Bee Cave, Briarcliff, Buda, Garfield, Hudson Bend, Jollyville, Jonestown, Lago Vista, Lakeway, Lost Creek, Oak Hill, Onion Creek, Pflugerville, Point Venture, Rollingwood, Round Rock, San Leanna, Shady Hollow, Sun City (Georgetown), The Hills, Volente, Webberville, West Lake Hills

Here they are sorted by zip code: 78610, 78613, 78641, 78652, 78664, 78681, 78701, 78702, 78703, 78704, 78705, 78712, 78717, 78721, 78722, 78723, 78726, 78727, 78728, 78729, 78730, 78731, 78732, 78733, 78734, 78735, 78736, 78737, 78738, 78739, 78741, 78742, 78744, 78745, 78746, 78747, 78748, 78749, 78750, 78751, 78752, 78753, 78754, 78756, 78757, 78758, 78759.