Better Alzheimer's Care Kansas City

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with memory loss, you worry.
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Better Alzheimer's Care Kansas City

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Alzheimer’s Basics

Thankful for Your Support – Let’s Find Some for YOU!

Dementia support groups are circles of caregivers working together to stay strong, searching for the resources to deal with devastating disease. Who's supporting you?Once a loved one settles into a Care Haven home, everyone breathes a sigh of relief. The family stops worrying that Mom will get lost, or that Dad will forget to take his meds.

So it’s surprising when new worries pop up. In this safe, calm environment, a caregiver’s brain has room for new concerns . . .

  • How can my loved one make the most of each day?
  • What expectations are reasonable?
  • What plans and decisions must be made?
  • How do caregivers cope with the stress of making these choices – the burdens of responsibility, anxiety, fear, anger, grief and guilt?

You’re a caregiver, so you’re used to being proactive. You seek a diagnosis and advice from experts. You learn about dementia, best care practices, medications, alternative treatments and current research studies. You update legal and financial plans – assemble a great medical team – find the care you dreamed of.

All of this eases the strain on a caregiver. But it doesn’t eliminate it.

How can you cope with the stress?

Generally, not alone.

Who will help you take care of YOU?

Consider joining a dementia support group for caregivers.

Organizations like the Alzheimer’s Association  and the National Parkinson’s Foundation arrange regularly scheduled, confidential meetings so caregivers for people diagnosed with dementia can gather for mutual support. Many find these dementia support groups a valuable coping tool. It’s a relief to find an empathetic community facing similar struggles.

Some people avoid support groups. They worry that the meetings will be whiny or depressing. They’re afraid of being surrounded by needy people who want to compare “war stories.”

Many newcomers to dementia support groups are surprised to find a circle of people working to be strong, searching for resources to deal with a devastating disease. These folks are trying to stay healthy and informed in order to take better care of their loved ones. They’re looking for ways to enjoy the moments they still share.

Keep looking for the right dementia support group.

Don’t settle for anything less than a place where people seem to understand what you’re going through – listen without judging – encourage you to find your own way. You should find empathy without the maddening platitudes. A support group can be a safe place to cry if you need to. It should help you find a reason to laugh again, too.

Many dementia support groups meet throughout the Kansas City area, monthly or biweekly. Trained professionals or former family caregivers lead them. (Courtney facilitates a monthly group in Lenexa.) Follow the links below to find the one most convenient for you. If you don’t like the first one you visit, try another. Each group has its own personality. Look for one that suits yours!

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Don’t forget – We’re here for you, too. Stay connected with us and other dementia caregivers. SUBSCRIBE to our blog and follow us on FacebookPinterestGoogle+ & LinkedIn.

Alzheimer’s Support Groups: The Alzheimer’s Association’s website features a national directory of support groups. Find one that’s convenient for you.

Parkinson’s Support Groups: The National Parkinson Foundation Heartland includes a List of Kansas and Missouri support groups (and exercise classes) on its website.

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3rd Step to Better Alzheimer’s Care: EMBRACE

The Big Picture

You can find the secret to better days with Alzheimer’s in just 5 steps: 1) Get Personal - through person-centered care. Even when it’s inconvenient. 2) Anticipate. Plan ahead to meet basic needs: water, snack, a trip to the bathroom. 3) Assess. Alzheimer’s is a progressive disease: ever-changing abilities, interests & needs. Watch for new signs and symptoms, especially behavioral changes that signal something’s wrong. Check in with your doctor if things suddenly change, you’re perplexed or you’re overwhelmed. 4) Adapt. Modify activities and physical surroundings to suit changing preferences and abilities. Be mindful of health and safety – enjoyable ways to spend the day – special moments in your relationship. Approach caregiving with sensitivity to individual choices, needs and abilities – and a sense of humor! 5) Include. Everyone feels less lonely and bored – more useful and valued – while actively joining in with family, friends and community. Plan for brief bursts of quality time. Forget about seeing things through – or getting things “right.” What’s important is staying connected. Avoid overstimulation. Find a time and a place for quiet rest and refreshment.

 

Our last post about person-centered care is one of our favorites. So is this week’s Big Picture info graphic.

We spend a lot of time talking about Alzheimer’s worries and concerns. It’s great to be able to deliver good news: Caregivers can dramatically improve the lives of people dealing with dementia.

We can’t stop or reverse Alzheimer’s. Yet.

We CAN help our loved ones live better days with Alzheimer’s. We can focus on our loved ones’ comfort and well being. We can make sure

  • They live in communities that treasure them.
  • They enjoy ongoing relationships with family and friends.
  • They’re treated kindly.
  • They’re recognized as individuals.
  • Their dignity and privacy are preserved.
  • They enjoy meaningful experiences each day.

Everyone who plays an important role in your loved one’s daily life should be committed to providing person-centered care. That’s especially true of those who create or oversee care plans.

We’ll discuss your relationships with care providers in our upcoming post. Subscribe and check back for Step 4: Partner.

 

3rd Step to Better Alzheimer’s Care: EMBRACE

5 Things You Need to Know About Alzheimer'sAlzheimer’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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Keep Learning!

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.”

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2nd Step to Better Alzheimer’s Care: EMPATHIZE

In our last post, I noted that the biggest misconception about Alzheimer’s disease is that it’s all about memory loss.

Alzheimer’s is about connections and short circuits. It’s about tangling and fraying in the wiring of the brain, the central nervous system and the rest of the body’s systems.

As this info graphic shows, symptoms of Alzheimer’s affect much more than our memories.

 

5 Things You Need to Know About Alzheimer's

No one has discovered how to stop or repair Alzheimer’s damage to the brain and body.

We have, however, made major breakthroughs in understanding how Alzheimer’s distorts a person’s experience of the world. Every day we learn a little more about how to better

  • Comfort our loved ones, protecting them from unnecessary fear or discomfort, and
  • Preserve their vital social connections.

Most importantly, we’ve learned that we provide better care when WE forget about judging abilities or behaviors and cherish our loved ones for being who they are today, in this moment: important members of our family and community.

Understanding more about Alzheimer’s short circuits can help you rewire your relationship with your loved one. We can provide the diagram and the tools – if you continue to follow this series. Subscribe so you won’t miss our next post: Step 4 – Embrace.

2nd STEP TO BETTER ALZHEIMER’S CARE: EMPATHIZE

Alzheimer's short circuits connections within the brain, the body's systems and social relationships. Learn how you can "rewire" your bonds with loved ones living with Alzheimer's.

Alzheimer’s short circuits connections within the brain, the body’s systems and social relationships. Learn how you can “rewire” your bonds with loved ones living with Alzheimer’s.

  • Mom can’t bear to wear her lace nightgown.
  • Dad wanders off in the middle of the night.
  • Aunt Sue won’t use the wallpapered bathroom.
  • Grandma doesn’t eat.

Why is Everything SO Hard?

1 – Alzheimer’s Is About Connections – and Short Circuits.

Connections determine how we experience the environment:

  • Connections to and within the brain.
  • Sensory connections linked to sight, hearing, taste, smell, touch and balance.
  • Connections within and among the body’s systems.
  • Connections to other people.

Alzheimer’s short-circuits connections, beginning with the body’s electrical panel: the brain. It tangles and frays the wiring of the central nervous system. It blows fuses in the digestive and neuromuscular systems.  In time, it can disconnect a person from everyday routines and relationships.

As caregivers, we can’t stop or reverse short circuits. But we can “rewire” our relationship with a loved one, attempting to

  • Understand how Alzheimer’s distorts his or her perception of the world,
  • Realize how frightening that is,
  • Comfort and protect against real and imagined threats,
  • Prevent isolation and loneliness by preserving important social connections.

(For a closer look at how disconnections cause Alzheimer’s symptoms, check out the Alzheimer’s Association’s Brain Tour.)

2 – Alzheimer’s Is Not Just Memory Loss.

Alzheimer’s strikes the wrinkled outer layer of the brain – our “gray matter” – called the cortex. It spreads in a fairly predictable pattern.

First it strikes at areas that control learning and memory. With Alzheimer’s, the earliest symptom may be forgetting recent events. Not just the details, either. You don’t remember a conversation you had just 20 minutes ago.

Damage spreads to areas of the brain responsible for thinking, planning and problem solving, or “executive function.” A telltale symptom of Alzheimer’s is new trouble handling finances.

Symptoms continue intruding on daily life during Alzheimer’s’ middle stages. Plaques and tangles spread to affect

  • Speech – the ability to speak and understand the spoken word, and
  • A sense of where you are in relation to the environment – or where other objects are in relation to each other (visuospatial dysgnosia). That makes it challenging to
    • Copy a drawing,
    • Find your way home,
    • Reach for and grasp a glass of water,
    • Follow a moving object with your eyes without turning your head, or
    • Figure out how to fit clothing over body parts while dressing.

Struggling to follow conversations and find the words to join in, many people living with Alzheimer’s avoid social gatherings. They might seem to change personalities. As reasoning and understanding the environment become more difficult, most need help with basic, daily activities. It’s no longer safe for them to live alone.

The brain’s cortex suffers increasing damage in later stages. Strange symptoms pop up. The room seems too hot or too cold. Imaginary strangers visit. Your loved one avoids the swirling pattern of the rug, fearful of “snakes.” Sometimes he or she has problems distinguishing food from the plate.

The symptoms of Alzheimer’s aren’t quite so bizarre if you know something about the brain’s cortex. Plaques and tangles reach areas that process messages from the sensory system. A broken “receiver” distorts what we see, hear, smell, taste and feel. A broken “speaker” makes it hard to explain what’s going on.

3 – Alzheimer’s Is Hard to Swallow.

Early symptoms of Alzheimer’s show at the tip of the tongue – with trouble finding the right word.

Eventually, damage to the brain affects the mouth’s other important functions: tasting and swallowing.

Everyone’s taste buds dull as we age. They don’t detect subtle flavors, so foods don’t taste the same. That’s why so many seniors prefer sugary dishes.

People with dementia also seem to have trouble identifying flavors. They may not recognize favorite foods on their plate. They might forget how those foods are supposed to taste.

Some drastically change food preferences – or lose interest in eating. A fading sense of smell makes meals less appealing. So does the struggle to raise food and drink to the lips. It may be hard to chew.

You might notice that your loved one drools and coughs or clears the throat. Is Dad plagued by hoarseness or shortness of breath? Does Mom complain that food sticks in her throat or chest – or is coming back up? He or she may be having trouble swallowing.

Swallowing problems are dangerous. They can

  • Lead to poor nutrition and weight loss – aggravating confusion or weakness and increasing risk of infection.
  • Cause choking.
  • Result in aspiration pneumonia. (Caused by food or liquid entering the windpipe instead of the esophagus. This is the most common cause of death among people with Alzheimer’s disease.)

Make mealtime easier (and safer) by taking it easy:

  • Allow plenty of time – an hour or more – and go slow.
  • Avoid noise and distractions that make it difficult to concentrate on eating.
  • Simplify the table setting. Serve just one or two foods at a time.
  • Serve old favorites – but be flexible as food preferences change.
  • Prepare foods that are easy to eat. Choose finger foods to avoid struggles with silverware.
  • Gently remind your loved one to chew and swallow.
  • Be certain he or she is sitting up straight, chin tucked slightly to assist swallowing.
  • Be alert to signs of choking.

(For more advice about the dinner hour, visit the Alzheimer’s Association’s Caregiver Center.)

4 – Alzheimer’s Is Not Just in Your Head.

Long before Alzheimer’s’ forgetfulness appears, a person’s muscles start to weaken. Scientists aren’t sure how or why. They believe a single degenerative process attacks cognitive function AND muscle strength.

People with Alzheimer’s may shuffle or easily lose their balance. Eventually, they may not be able to walk. Some experience uncontrolled muscle movements, such as rigidity or spasms. Some find it difficult to sit up in a chair, hold up their heads or smile.

There are bowel and bladder issues, too. In the beginning, accidents and toileting problems are not caused directly by Alzheimer’s, but by

  • Other medical conditions
  • Medication side effects
  • Mobility issues, or physical obstacles that slow the trip to the bathroom
  • Difficulty removing clothing
  • Confusion about where the toilet is, or how to use it
  • Distraction – or depression and apathy
  • Poor communication skills
  • Embarrassment at needing help

Caregivers use continence management strategies to address these problems.

In the very late stages of Alzheimer’s, plaques and tangles spread to areas that control the bowel and bladder. The brain no longer relays signals that regulate continence. Caregivers then must rely heavily on the use of disposable garments.

5 – With Alzheimer’s, Life Is Best Lived in the Moment.

Our loved ones with Alzheimer’s increasingly live in the moment.

We grow frustrated and fearful as they lose the memories of a past we once shared, the abilities we once took for granted. We try to prod them back to their old selves.

  • “Look at the picture and think hard. You can’t forget your best friend!”
  • “I’ve answered that question a million times, Mom. This time, listen more carefully.”
  • “I won’t help you make that sandwich. Practice doing it yourself. Use It or Lose It!”

Is this the best approach?

Alzheimer’s is a progressive disease. We can’t stop its forward march with correction or criticism.

We can, however, join our loved ones in their moment.

We do that with mindfulness – concentrating on the here and now, accepting circumstances for what they are, without judging them. We’re better caregivers when we respond to confusion, stress and pain by carefully focusing our resources – attention, compassion, patience and kindness – on the person and situation in front of us.

Mindfulness makes the moment safe and comforting if we

  • See difficult behavior as a response to dementia’s symptoms.
  • Remain calm, refusing to take things personally.
  • Look past our loved ones’ actions to their feelings.
  • Keep everything simple, quiet and relaxed (explanations, routines, activities, dress, etc.)
  • Acknowledge small successes and simple pleasures.
  • Join our loved ones in their current reality – even if today they seem to be living in the distant past.

Most importantly, we can forget about judging abilities or behaviors and value our loved ones for being who they are – cherished members of our family.

Keep Learning!

Of course, there’s much more to learn about the stages and symptoms of Alzheimer’s. With luck, and continued research, there will be more every day.

Many online resources can keep you abreast of current findings and practices. (That includes many of the links above, to this article’s sources.) We especially recommend the National Institute on Aging’s Education and Referral Center for information that’s thorough, concise and easy to understand.

Don’t forget to look for updates to our Beginner’s Guide to Alzheimer’s series – via email if you subscribe.

Check back for our next “Big Picture” post, with its summary info graphic: “5 Things You Need to Know About Alzheimer’s.”

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