Alzheimer’s chips away at your peace of mind. You fear for your loved one. You worry that you won’t be a good enough caregiver. You dread a future you can’t begin to imagine.
You fixate on symptoms: on what used to be and never will be again.
Your loved one senses your worries and responds with anxiety, anger or panic.
In our last post, we noted that we’re all better caregivers when we take a deep breath and relax. When we embrace the moment, focusing on the person in front of us and making the best of their day.
How can you embrace a moment you share with Alzheimer’s?
1 – Get Personal
Search the web for “best Alzheimer’s caregiving practices,” and you’ll find references to personalized, or person-centered, care. Person-centered caregivers make a point of learning about – and honoring – each individual’s abilities, interests and preferences. Even when it’s inconvenient.
Person-centered care recognizes that everyone’s life has a different rhythm and melody. Some people are early risers, while others are night owls. Some eat big meals at 8, noon and 6; others graze all day long. Some crave casseroles or dessert, and others relish a great salad.
Caregivers use schedules and routines to give life structure. People with Alzheimer’s prefer predictability. Surprises can be upsetting. But, while routines create order, you should reconsider any that seem to cause stress and discomfort.
Alzheimer’s doesn’t change the fact that we’re all different, and it shouldn’t take away a person’s right to personal choice.
2 – Anticipate
The best caregivers anticipate basic needs.
It’s difficult for someone with Alzheimer’s to keep track of the body’s signals and demands, much less than to communicate them. It’s tough to remember when you last ate or drank – and then, suddenly, you’re desperately hungry, dehydrated or weak. You overlook the body’s warning to find a bathroom – until it’s too late. People with dementia rely on caregivers to offer water, a snack or a reminder before disaster strikes.
Your loved one needs extra help managing more complex needs. Help control pain before it gets out of hand. Find a time and place to rest before fatigue and confusion set in. Arrange pleasant, meaningful activities to avoid boredom and loneliness.
When providing comfort care, one size does not fit all. Consider yourself an attentive personal assistant. You’re more likely to convince someone to eat if you offer a favorite food. Your loved one will find activities more interesting if they awaken happy memories of the past.
We find that everyone’s most basic need is to be treated kindly, gently and with dignity. Person-centered caregivers don’t rush through a busy activities calendar; they gradually build close relationships based on respect.
Match your loved one’s leisurely pace. Focus on understanding and comforting.
- Approach from the front, to avoid startling.
- As you reach out to get attention, use a soft touch.
- Remember to smile and make eye contact.
- Listen carefully.
- Speak respectfully, using short phrases, friendly gestures and helpful visual cues.
- Offer two choices – not ten.
- Provide reassurance – or a welcome diversion.
3 – Assess
Alzheimer’s is a progressive disease. Your loved ones’ abilities and preferences change. Regularly reassess them, so you can anticipate his or her needs.
Our Care Haven homes provide each resident a full clinical assessment before move-in. We see it as a critical step in tailoring a person-centered care plan. We have to understand someone’s capabilities, background and interests. We need to be familiar with ALL health issues – whether associated with dementia or to other medical conditions.
Whenever a challenging behavior arises, it’s time to reassess. Your loved one feels distress. An important need isn’t being met. Alzheimer’s makes it difficult to communicate that need, and frustration aggravates the distress.
An uncomfortable urinary tract infection suddenly reduces bladder control. Arthritis’ flare makes dressing painful.
Maybe there’s been an environmental change. An unexpected guest or confusing news bulletin upsets the familiar routine.
Your loved one may be upset by the tricks Alzheimer’s sometimes plays on the sensory system: heightened sensitivity, distortion, hallucinations.
Person-centered comfort care requires us to be on the lookout for clues to behavioral change. As we’ve said earlier in this series, good caregivers play detective – but they should never play doctor. People with Alzheimer’s need regular medical checkups to monitor their health. You should contact your doctor, nurse or other health care provider after ANY sudden change.
With fresh eyes, your provider can explain behaviors that perplex you. An expert can help you tell the difference between symptoms of dementia and signs of untreated medical conditions. A thorough exam could uncover an infection, poor circulation, heartburn or even depression.
Your provider should help you understand your loved one’s changing needs. He or she can help you recognize swallowing difficulties that require different food preparation – prevent skin ulcers with frequent repositioning – relieve dry mouth with a saliva spray. They can spot changes in balance and prescribe physical therapy to reduce the risk of a fall.
Do you avoid checking in? Don’t want to be a bother? Convinced that everything would go smoothly if you just tried harder?
Good health care providers realize that caregiving is one of the toughest and most complicated jobs on the planet. They think of themselves as your partners. They provide information and support that makes caregiving a little easier and a lot more effective. If that doesn’t sound like your provider, then consider finding a new partner – one you trust enough to be completely honest as the two of you care for your loved one.
4 – Adapt
Have you noticed that caregivers always are on the lookout?
We keep a careful eye on our loved ones. We watch out for their health and safety – look for changes in their preferences and abilities – search for enjoyable ways to spend the day.
People with Alzheimer’s don’t fully understand or adapt to changes in their world. So we adapt for them.
In person-centered comfort care, we tailor activities and the environment – as best we can – to suit our loved one. That requires us to do a little research – and to be brutally honest with ourselves.
It’s hard to accept that Mom is changing. It’s tough to consider changing her beloved home, too – putting away bowls of potpourri, removing footstools and area rugs, installing grab bars, replacing unstable chairs, rearranging furniture to create pathways. It’s harder still to figure out what really needs to be done – and when.
As you begin the journey of reassessment and adaptation, we highly recommend that you review the Alzheimer’s Association Dementia Care Practice Recommendations. Print it out or bookmark it on your computer. Refer to it often, particularly after regular updates with your health care provider.
Written for professionals who work in home settings, the Recommendations provide a wealth of practical advice for adapting to your loved one’s changing abilities – particularly in the Personal Care and Safety sections. More importantly, it approaches caregiving with true sensitivity to individual choices, needs and abilities – to preserving comfort, dignity and self worth.
Of course, we’d recommend you preserve your sense of humor, too. It may be your most effective caregiving tool. Here’s just one “case study,” from Chicken Soup for the Soul: Living with Alzheimer’s & Other Dementias:
Linda Rose Etter’s mother was suffering from dementia and wasting away, but she refused to eat. Even when Linda prepared the one food her mom still wanted — a baked potato with butter and cheese — she refused it. So Linda took a different route: humor. She made the potato “talk,” and used a different voice for Mr. Potato, who encouraged her mom to eat him. That got her mom’s attention. But she still refused until the potato “said” it would cry if Linda’s mom didn’t eat it. At this, her mom cracked a smile, looked at her daughter and said, “‘Tell him I’ll eat him!’ And she did!” Linda writes. “Even with dementia she knew there was something funny about a talking potato.”
5 – Include
We all feel better when we sense that we’re part of something bigger than ourselves. Alzheimer’s doesn’t change that. Your loved one feels more useful – more valued – less lonely and bored – when he or she plays an active role in a community.
The days of organizing a neighborhood garage sale, playing bridge or joining a knitting circle may be past. But there are plenty of other alternatives for joining in with friends and family. Putting out the placemats for dinner. Tossing the salad. Attending an informal concert in the park. Going along for a short trip to the grocery store. Filling treat bags for a children’s Sunday School party.
If a faith community was an important part of your loved one’s life, help him or her stay connected. Encourage clergy or trained lay people to visit and assist with important spiritual practices, such as prayer and communion. Read selections from monthly newsletters or sermons. Point out old friends in a pictorial directory. Play familiar hymns. Show photos of their sanctuary, decorated for the season.
You can use similar strategies to stay in touch with old friends, extended family or favorite organizations. Just remember to adapt:
- Forget any rules about seeing things through to the end. It’s enough to be a part of something meaningful. If you attend a grandchild’s play, sit near the aisle and be prepared to leave after the first act. If you plant a garden, expect to finish things up on your own later.
- Plan for a shorter attention span. Count on no more that thirty minutes of quality time per project.
- Encourage activity, but avoid overstimulation. Too much noise and commotion can be frightening and confusing.
- Make time to pause and rest. Make sure there’s comfortable seating – in an area with a safe temperature, where water and snacks are permitted. (You’ve packed them, of course!)
There will be times that you’ll have to show others how to include your loved one. Build an arsenal of pamphlets, books, websites and local resources to educate family, friends, clergy and other professionals or service providers. Your local chapter of the Alzheimer’s Association can be particularly helpful – as can a link to our blog!
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You may have noticed that we’re big fans of the Alzheimer’s Association – particularly its online guides. These are terrific resources, easily accessed at little or no cost. When it comes to comfort care, we recommend the Alzheimer’s Association – Greater Illinois Chapter’s “Encouraging Comfort Care.”
Of course, we also recommend continuing to follow this series. Make it easy on yourself by subscribing.
And be sure to check back for our info graphic – “Better Days With Alzheimer’s.”