Family members caring for a loved one with dementia will eventually become overwhelmed; it’s unavoidable. As the disease progresses, there will be more challenges to keep the person safe, nourished, and comfortable. What can you, as the primary caregiver do to help yourself and the person in your care?
The number 1 tip on the list is that you must be flexible and creative in your approach. For many years the medical community believed that reorientation was a primary method to manage dementia’s confusion and distress. In the early stages of the disease, it may work.
- “You’re at home in your bedroom. I am here with you, and you’re safe.”
- “It’s Tuesday morning. We are going shopping today.”
- “Your shirts are hanging in your closet, would you like to choose one?”
- “This is Moose, your Labrador retriever. Remember how much he loves to play ball?”
- “I made your favorite sandwich, grilled cheese. Do you remember teaching me how to make one?”
- “Let’s look at this photo--it’s you and your children at a picnic at the beach.”
Conversations like these can help reorient, are a pleasurable memory exercise, and give people a sense of normalcy. Providing choices allows them some control when perhaps they can’t control anything else.
Tip number 2 refers to the the fact that severely impaired people will not reorient and may resist. If grandma is worried that her mother will be upset if she doesn’t go home, it is up to you to find a way to soothe her.
- “Mom knows you’re with me.”
- “It’s late right now, let’s wait until morning.”
- “The bus won’t be here for another hour.”
Perhaps going for a walk will be a useful distraction. If all else fails, try playing a simple card game or enjoy some tea and time.
Tip number 3: We all like the opportunity to select our dinner, shoes, activities, or even a TV show. We wish to be the captains of our ship. Allow the person to maintain that control as much as it is practical. There will be moments when there is no choice available, and this is when you must come up with a simple statement.
- “It’s time for your bath (lunch, medication, to get dressed, to get in the car).”
Depending on the person and their level of cognition and mood, you’ll probably need to adjust your approach.
Tip number 4: Familiar surroundings and objects are comforting to a person who is distressed by their confusion. That yucky old La-Z-Boy that you would like to set on fire may be your dad’s one source of solace in a terrifying world. A favorite coffee mug or scarf can reconnect someone to an enjoyable time in their lives. Provide photos, a favorite book or newspaper, play videos of family life, visit places that the person enjoys. Every patient is different, and as the person’s caregiver, you’re in a position to know what they find pleasurable.
Tip number 5: If your parents have been helping you since birth, they won’t just stop because they have dementia. They have always worked, either in the home or at an outside job. They know how to do things around the house, even if they have forgotten minor elements. Even in later stages of dementia, if you give someone a toothbrush or a facecloth, they will know what to do with it.
Let your loved one help you. If you don’t need help, devise ways to make them feel like they’re essential.
- “Can you help me fold these clothes?”
Grab a laundry basket and place in a large pile of cloth napkins and tea towels you can pick up at a thrift store. When people become restless, usually before suppertime, break out the “laundry” that needs folding.
- “Can you crochet me some doilies?”
- “Let’s frost these cupcakes.” (because cupcakes!)
- “Would you mind sweeping the floor?” (familiar activity)
- “Would you please get me a cold drink?” (hot drinks aren’t as safe)
The activity doesn’t need to be vital or overly complicated. Indeed, simple, one-step directions are best. Feeling essential and involved are what make us human. Being accepted and having others meet us where we are is vital to remaining engaged.
Nutrition and hydration
Tip number 6: People with dementia are often tricky at mealtimes. In general, elders enjoy food less because of alterations in taste, and medications can worsen. If your dad will eat nothing but mashed potatoes and gravy, keep serving it, but continue offering other nutritious foods on the same plate. Offer healthy snacks. Try to give a multivitamin if possible. Finger foods may be better than knife and fork meals. Offer nutritional support in the form of Ensure or other similar drinks.
Monitor diabetes as ordered by the physician. Fluids are critical, but older people don’t always get the signals from their bodies that they are thirsty. Dehydration promotes infection, especially in the urinary tract, because naturally present bacteria won’t flush out in the urine. Both infection and disorientation are associated with dehydration. Inadequate fluid intake can also worsen constipation.
Dementia also causes problems with swallowing, which increases the risk of choking or aspirating food or liquids. Inhaling food into the lungs will cause pneumonia, which is potentially life-threatening. Textures of foods and liquids are often altered for patients in nursing home memory care units: chopped food, purees, and liquids thickened to ease swallowing.
Problems with eating can arise from other conditions as well: oral pain or sores, sometimes due to poorly fitted dentures or loose or broken teeth. Dry mouth can make for difficulty eating. Encourage sitting up straight at the table, rather than in that yucky La-Z-Boy, to promote safety. Eliminate distractions during mealtimes. Oral care remains vital for elders, so assist as needed with tooth brushing.
Tip number 7: In nursing homes, Nurses and CNA skilled nursing staff help people with incontinence by using “timed toileting,” by bringing the person to the bathroom upon waking, after meals, before bath time, before bed, and during the night. Incontinence products (disposable briefs) are great if they allow them and if they will permit skincare and assistance with hygiene.
Time for you
Tip number 8: The last tip, which will allow you to implement the previous seven tips is that caregiving is exhausting, and if you aren’t taking care of yourself, you’ll be no good for your loved one. Find the kind of self-care that works for you, even if only for an afternoon a month. Consider respite care at a facility if it gets to be too much. Even better: take a vacation, eat well, get enough sleep, and keep on keeping on.