Tag Archives: Alzheimers

How to Care For Yourself When Caring For Someone With Alzheimer’s


The first step in caring for someone with Alzheimer’s is caring for yourself. After all, you can only give away something you already possess. Yet taking care of a person facing cognitive decline can tax the abilities of even the most devoted among us.

We can’t wave a magic wand and make the issues you’re facing disappear. But we can offer some tips to help you bear up, even when the burden seems unbearable. So let’s look at ways to care for yourself while you’re caring for another.

Step One: Know the Risks

No soldier goes into battle without knowing the hazards ahead of time. This is just as true for those who fight on the frontlines of human need. So let’s look at the challenges you’re likely to face during times to come:

  • Irregular sleep patterns or insufficient rest. Caregivers must respond to situations as they present themselves, whether that’s in the light of day or the middle of the night.
  • Missed meals or unhealthy foods. You may get so wrapped up in the other person’s needs that you forget to eat. Or you may find yourself pressed for time and eating whatever is at hand, which isn’t always the healthiest option.
  • Chronic mental or physical health issues. Caregivers are at elevated risk for problems like clinical depression, according to the National Caregivers Alliance (NCA).

We mention these facts, not to discourage you, but to help you to prepare for the challenges ahead. Now let’s look at how to equip yourself for the task.

Step Two: Educate Yourself

Most people are better able to deal with challenges when they know a little about what they’re facing. So begin by learning about Alzheimer’s: its causes, its symptoms, and how it affects patients over the course of time. This will help you to marshal your resources when you need them the most.

Step Three: Ask for Help in the Right Way

By this we mean asking for help with specific duties like preparing foods, washing clothes, giving medications, and tending to the patient’s personal needs. This will help to avoid miscommunications and enable others to know how best they can support your efforts.

Do you own a dog? Pets provide comfort and companionship when you need them most. They can lift your spirits and relieve symptoms of depression and anxiety. But sometimes it’s best to let someone else handle your pup’s needs, at least on occasion. For example, letting a dog walker take your pooch for a stroll can save you from having to multitask at the worst possible time.

Step Four: Take Time Out, Even If It’s Only a Few Minutes

Taking a timeout is essential for performing any task well, according to HuffPost. So give yourself permission to step away for a while and get your head together. This will help you to help the person for whom you’re caring.

Step Five: Remember You’re Not Alone

More than 5,000,000 Americans suffer from Alzheimer’s, according to the Alzheimer’s Association. For each of those people, there’s someone else whose job is to provide the best possible care the situation allows. This means there are hundreds of thousands of people going through trials similar to yours. Many of these folks meet together, either online or in person, to offer support and a sympathetic ear. Reach out to one of these groups if you can. You may find the help you need to keep going. You might even form treasured friendships that last the rest of your life.

Being a caregiver is never easy. It will test your limits at times. But it can also reveal to you strengths and abilities you never knew you had. We wish you all the best as you travel with your loved one through the days to come.

June is the co-creator of Rise Up for Caregivers, which offers support for family members and friends who have taken on the responsibility of caring for their loved ones. She is author of the upcoming book, The Complete Guide to Caregiving: A Daily Companion for New Senior Caregivers.  June can be reached at June Duncan <june@riseupforcaregivers.org>

 

 

 

 

 

 

 

 

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How to Best Communicate With Someone Who Has Alzheimer’s


If someone you know or care about has been diagnosed with Alzheimer’s, you are probably already preparing for the ways your relationship will change. Alzheimer’s disease, as defined by Psychology Today, is a progressive, neurocognitive disease characterized by memory loss, language deterioration, impaired ability to mentally manipulate visual information, poor judgment, confusion, restlessness, and mood swings. It is the leading cause of dementia in the elderly.

With these symptoms impacting your relationship with the person afflicted, you will benefit to know how to best communicate with someone who has Alzheimer’s.

Effects on Communication at Different Stages

The stage at which someone’s illness has progressed may impact your best tactic for communication. Alzheimer’s disease facts outline the stages by which communication is affected.

In the early onset of the disease, the person may find it difficult to say the right words and will use familiar words repeatedly, even describing objects because they cannot recall the words they aim to speak. Speech challenge progressions will include losing train of thought easily and difficulty forming a coherent sentence.

If the patient is multi-lingual, they may also start speaking their birth language. An Alzheimer’s disease fact is that the patient may speak less often and rely on gestures instead of speech. One of the perplexing attributes of the disease is how differently it affects each person.

Be Patient

In most early stage patients with Alzheimer’s, they will have the ability to communicate with others. You should make every attempt to maintain conversation, just with more patience. Still look at your friend or family member directly and in the eye when speaking to them, and wait for their response. Try to refrain from jumping in while they are talking as they may take longer to form and articulate their thought and you could throw off their answer. Make your conversation reciprocal, asking questions to continue the dialogue.

As their Alzheimer’s disease progresses, it is possible that with the aforementioned changes in speech, their stories may present as incoherent or unlikely to be realistic. It is still best that you help them to continue the conversation. Don’t be argumentative, even if you know the story they are sharing isn’t theirs, they are calling you by the wrong name, or other common communication challenges.

Alzheimer’s disease facts outline that the patient may develop delusions (false beliefs despite a lack of evidence of truth) and hallucinations (like a waking dream without outward stimuli) in their current or recall. Caring.com outlines that the patient doesn’t realize that the memories or stories they are sharing aren’t true. They are not lying, they are victim to the effects of their disease.

Ask How the Person Prefers to Communicate

The experts at Alzheimers.org suggest learning how the patient prefers to communicate. As they may themselves grow frustrated with the challenges of speech, they may prefer to talk over the phone rather than in person, or be most at ease communicating via text or email.

It is beneficial to the patient to continue to communicate in any form. By trying to speak, recall words and stories, their brains are remaining active.

Triumphs in speech can also have a positive emotional response for the patient. Reports have shown that remaining socially and cognitively active may help build the cognitive reserve of a patient with Alzheimer’s. While it cannot cure or reverse the effects of Alzheimer’s, it can help to reduce depression, apathy, sleeplessness and other side effects such as challenges swallowing.

It may be difficult for you to watch your friend or loved one change through the disease, but your presence and efforts are essential to their treatment and care.

Keep Questions and Task Instructions Simple

In opening dialogue with an Alzheimer’s patient, it may be helpful to ask simple yes or no questions. By removing the more complicated open-ended thoughts, the patient may be more at ease in evaluating the question and associating their answer.

So rather than asking, “What would you like for a snack?” ask a series of questions and be patient for each answer. For example, “Would you like a snack?” To a yes, you might follow by asking – even showing – the options, “Would you like a piece of cheese?” If the answer is no, offer and show another option.

This slower step-by-step thought process can help in communicating. If physical examples aren’t on hand such as you’re ordering or going to another location to pick up food, you can try to write down options, or use flash cards.

Likewise, if providing task instructions, offer steps slowly and articulately, one at a time. Saying to a patient that it is “time to go” could lead to confusion or lack of direction. Instead, taking them through the task list can lead to results and understanding.

Ask if they have their shoes on? If they don’t, talk them through locating and putting on their shoes. Do they have a sweater or coat? Do they have their keys, wallet or purse? The same mental checklist that you might go through before preparing to leave or a similar task list will be helpful to an Alzheimer’s patient when presented slowly, clearly, and patiently.

Connect Directly

In the mid- and late-stages of Alzheimer’s, a patient may need your further reassurances. It is likely that to engage you will need to reintroduce yourself upon each visit, even when speaking to a close relative or lifelong friend. Be patient but respectful – remember, it’s the disease and out of their control. Maintain eye contact after your re-introduction and assist in communication with verbal and visual clues. You may also need to engage all senses – sight, sound, touch, taste and/or smell, to be sure they are understanding you.

Listen Carefully

As it is an incurable, progressive disease, Alzheimer’s disease facts state that it will become more challenging to communicate with a patient. Even as you ask shorter yes/no questions, use visual aids and other clues, responses to questions or stories shared may be harder to understand. Try to listen to the sentiment of what the patient is telling you, not only the words.

It’s possible that they will mix up words but the context of their story is where you can engage. Or you can read their happiness, sadness, or other emotions. Sometimes, a caregiver who is with the patient regularly can also help you to communicate. And most of all, being there to lend your continued support and care are what is most important to helping them through this difficult disease.

 

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Dementia Care: Filling the Role of Spouse and Caregiver


The Purple Jacket is pleased to welcome back guest writer, Samantha Stein from ALTCP.org. 

Dementia care is difficult because of all the changes the care recipient goes through. No amount of money or precaution can fully prepare families for when dementia strikes a loved one, and this reality is even more devastating for many couples. To illustrate, here is a video we came across online of Bob Treanor and his wife, Ruth. Bob provides valuable insight on what it is like for individuals to become dementia caregivers to their spouses.

https://www.youtube.com/watch?v=OEcgUNwwFto

Dementia affects the lives of many individuals. And as the video shows, it certainly does not only take its toll on the diagnosed. It also alters the lives of the people closest to the patient.

For this week’s post, let us discuss all of the intricacies of dementia and what caregivers go through for their family members and loved ones going through it.

Dementia Explained

Before anything else, let us clarify one common misconception: dementia is not a disease. It is the term used to refer to the severe decline in memory or thinking ability that it hinders a person from accomplishing everyday tasks. These signs and symptoms vary, but the most common ones are as follows:

  • Memory Loss
  • Difficulty in language and communication
  • Change in Attention Span
  • Reasoning and Judgment
  • Visual Perception
  • Behavioral Changes

Another misconception that people have is that dementia and Alzheimer’s disease are the same. However, the latter is, in fact, a type of dementia. The other types are listed below:

  • Vascular dementia
  • Dementia with Lewy bodies
  • Mixed dementia
  • Frontotemporal dementia
  • Creutzfeldt-Jakob disease
  • Normal pressure hydrocephalus
  • Huntington’s disease
  • Wernicke-Karsakoff Syndrome

Dementia Caregiving Statistics

While it may depend on the type of care that they provide, caregivers often put themselves at a great risk by taking on the responsibility of supporting their loved ones. We have all heard the stories about it; co-workers barely meeting deadlines because of caregiving duties, people have even left their jobs to fulfill the role full-time, or neighbors leaving their homes to move in with loved ones. It is not an easy feat and it requires more dedication than anyone can ever really understand.

Dementia caregivers are no stranger to this circumstance. In a study released by the Alzheimer’s Association, more than 15 million family members and friends have provided 18.1 billion hours of unpaid care to loved ones with Alzheimer’s and other dementia in 2015. The economic value of all this was worth over $221 billion. Moreover, 38-percent of dementia caregivers have shared that they have been doing the work for six years or more. When a person takes on a responsibility this big and it lasts this long, it is bound to have negative effects on his or her well-being.

As cited in the same study, caregivers to dementia care recipients are 3.5 times more likely to say that the greatest consequence of the task is that it creates or aggravates their own health problems. Inevitably, these caregivers do not get to walk away from the experience unscathed. Physically, emotionally, financially, socially, or mentally, dementia caregivers will have to face some type of health problem during or after the care.

Lastly, and perhaps the most devastating discovery is that people caring for their loved ones hospitalized for dementia are more likely to pass away the following year, even after accounting for the spousal caregiver’s age.

Gender Differences in Caregiving to a Spouse with Dementia

Traditionally, caregiving is perceived by the majority as a woman’s task. This may be because of her nurturing nature or because of the traditional gender roles in society. However, the perception and behavior of society is rapidly changing. As seen in Bob and Ruth’s story, men are also becoming increasingly open to caregiving.

Gender Differences in Caregiving among Family – Caregivers of People with Mental Illness, a study published last year, attributes the growing change to longer life spans, more women taking on jobs outside the home, and smaller families. Similar to the reasons that women have in assuming the role of caregivers, men are driven to assume the responsibility by a sense of affection, commitment, and family responsibility.

Unfortunately, research that focuses on this subject is still quite limited. Most studies still pay little attention to male caregivers and maintain focus their female counterparts.

couple(Photo Credit: Pixabay)

Redefining Marriage

Marriages take the biggest hit when it comes to dementia. Perhaps, this is might be one of the biggest tests to “in sickness and in health.” Imagine slowly watching partner forget about a life that you had built together over the decades. Not only that, imagine feeling angry at the whole situation and wishing it was all over, then immediately being consumed by the overwhelming guilt of even entertaining the thought. This is the reality that many dementia caregivers face on a regular basis.

Physically present, but psychologically absent—this is how Pauline Boss Ph.D. describes how spouses can change when dementia takes over in her NextAvenue article entitled, For Caregivers of Spouse with Dementia, a Redefinition of Marriage. For many spousal caregivers, dementia has turned their married lives into an abstract relationship that feels like “living with a stranger” or “loving half a person.” It is no longer about building and maintaining a perfect relationship. As Boss puts it, it becomes pushing to make the relationship good enough.

We get a further look into this through John R. Smith’s How to Care for a Spouse with Early-Onset Alzheimer’s. Just in his early 40s, he has become the primary caregiver of his wife whose health condition is so advanced that she has lost the ability to brush her teeth, bathe, or even remember his name.

One striking point in his account is how spousal caregivers will feel a unique kind of isolation. When your spouse could barely remember your name, how can he or she truly give consent to intimacy? Despite it being a taboo in some social circles, sex is one of the most basic needs of a human being. Dementia can and will take that away in marriages because, as Smith’s therapist puts it, it will start to feel like date rape.

The Importance of Self-Care

In the chaos, success, and emotional turmoil that come with caregiving for a spouse with dementia, caregivers can easily neglect their own lives. In their minds, their spouse’s needs become the primary concern. However, prioritizing their own care concerns and needs is and will always be important, and they should not feel guilty for it.

Spousal caregivers, especially those handling cases as consuming as dementia in their own homes, can feel as if anything that takes their time and attention away from their spouse is not worth the thought. In some cases, taking a break could even feel as if their being selfish and spending the money on anything that they want feels like a substantial waste of limited resources.

But taking care of themselves does matter immensely. In Smith’s case, he stopped eating properly because he dedicated most of his time and their resources caring for his wife. He ended up losing weight, and every time his wife would stumble and fall, he would have trouble picking her up.

Your Concerns and Emotions are Valid

It has been said countless times before, but let’s reiterate: the quality of your care depends on how much you care for yourself. To the caregiver reading this, your health matter just as much as your spouse’s, so take the time to safeguard it.

As stated above, most caregivers learn later on that their own health concerns are aggravated by the responsibility of caring for their spouses. Stop, and reevaluate if you have enough saved away for that. The different types of long term care facilities may vary in prices, but none of them come cheap. Bear in mind that preparing yourself for the long term care costs you might have to face is all right.

Also, taking the time to continue doing what you love to do is not just acceptable but necessary. Maintaining good health by eating right (even if it is a little more expensive) and exercising can help you handle caregiving so much easier. Keeping your mind and your body in shape will make you a more effective caregiver. A strong body will help you handle the physical demands of caregiving, whether it is heavy lifting or working longer hours. A sound mind will help you handle the emotional roller coaster that come with it.

Lastly, but just as vital, remember that it is okay to ask for help. You are human. Exhaustion and frustration will come, and there will be times when you feel like you are filled to the brim. When this happens, know that those emotions are valid and that they do not make you a horrible spouse. Just ask for help from the people you trust the most. It may be from your children, other family members or even your neighbors. If budget permits it, the help might even come from a hired extra pair of hands.

Author Bio:

Samantha Stein is an online content manager for ALTCP.org. Her works focus on key information on long term care insurance, finance, elder care, and retirement. In line with the organization’s goal, Samantha creates content that helps raise awareness on the importance of having a comprehensive long-term care insurance plan not just for the good of the individual but for the safety of the entire family.

 

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Author’s Spotlight: Mama Peaches and Me.


All that I am, or hope to be, I owe to my angel mother. Abraham Lincoln

kl-portfolio-1Combining his personal stories and no-nonsense advice with a healthy dose of humor,Christopher Chaney writes about what it means to love and care for an aging parent in his book Mama Peaches and Me. This book is the first of the Mama Peaches Caregiving Reading Series.

With a mixture of humor, scripture and timely caregiving tips, Mama Peaches and Me is like having a close friend to support those caring for an aging parent, disabled spouse and other loved ones.  As I read through Christopher’s book, I felt like I was part of the family.  Christopher’s nine caregiving tips are essential for all caregivers. A must-read for anyone who is a caregiver or anyone who just loves old-school humor.

Don’t just take it from me; Listen in and learn how Christopher Chaney is creating Healing Ties all around us!

287855_bd19c93bb5f2408da345c5485e2e963d-mv2_d_1672_2316_s_2In celebration of National Caregivers Day (Feb. 17th)  Christopher is offering the e-book version of my Mama Peaches and Me book absolutely free for two days only (Feb 17 and 18).  This book was named as one of the eight best caregiving books of 2017 by the editor of care.com . Getting your Free e-Book is easy and quick when you visit my website at http://www.authorchristopher.com./    Use promo code: Bowtie for your free book! 

Christopher-Charles Chaney is a caregiving advocate, published author, award-winning public speaking champion and CEO of Kingdom Majesty International Ministries.

 

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5 Tips for Talking With a Person Who Has Alzheimer’s


“Adopt the pace of nature: her secret is patience.” Ralph Waldo Emerson

Today we welcome award winning author Marie Marley to The Purple Jacket.

Yesterday afternoon I walked into Mary’s spacious room. Mary is a woman who has few visitors and who I’ve volunteered to spend a little time with every week. I greeted her, complimented her on her beautiful turquoise sweater and shook her hand.

Then I sat down at her little table that was overflowing with books, photographs, the newspaper and other items she wants to keep close at hand. I started off by picking up a small framed photo of Mary with her husband and three children — two sons and a daughter.

“Tell me about your daughter,” I said, using an open-ended question because they have no right or wrong answers. That’s a tip I picked up from The Best Friends Approach to Alzheimer’s Care by Virginia Bell and David Troxell.

“Oh, her name is Connie,” she told me. “She has four children — two boys and two girls.”

She continued by giving me several details about Connie and her family. I then picked up a photograph of Mary and her twin sister, Bernice, and she told me about how they took piano lessons together when they were children. After a few minutes, I asked her if her daughter ever played a musical instrument.

“I don’t have a daughter,” she said matter-of-factly.

“Oh,” I countered, picking up the family photo again and holding it out for her to see. “You just told me you have a daughter. Here she is.”

Mary’s face fell and she said very quietly, “I guess I do have a daughter.”

I immediately felt sorry for her embarrassment and was disgusted with myself for having pointed out her mistake. I realized I’d just broken one of the cardinal rules for interacting with a person who has dementia. I’d just read it in The Best Friend’s Approach that very morning: “Let the person save face.”

When relating to a person with Alzheimer’s there are many guidelines to follow. I’m going to discuss five basic ones here: 1) Don’t tell them they are wrong about something, 2) Don’t argue with them, 3) Don’t ask if they remember something, 4) Don’t remind them that their spouse, parent or other loved one is dead and 5) Don’t bring up topics that may upset them.

Don’t Tell Them They’re Wrong About Something: To let the person save face, it’s best not to contradict or correct them if they say something wrong. There’s usually no good reason to do that. If they’re alert enough, they’ll realize they made a mistake and feel bad about it. Even if they don’t understand their error, correcting them may embarrass or otherwise be unpleasant for them.

Don’t Argue With the Person: It’s never a good idea to argue with a person who has dementia. First of all, you can’t win. And second, it will probably upset them or even make them angry. I learned a long time ago, when caring for my beloved Romanian soul mate, Ed, the best thing to do is simply change the subject — preferably to something pleasant that will immediately catch their attention.

Don’t Ask if They Remember Something: When talking with a person who has Alzheimer’s, it’s so tempting to ask them if they remember some person or event. “What did you have for lunch?” “What did you do this morning?” “Do you remember that we had candy bars when I visited last week?” “This is David. Do you remember him?” Of course they may not remember. Otherwise, they wouldn’t have a diagnosis of dementia. It could embarrass or frustrate them if they don’t remember. It’s better to say, “I remember that we had candy the last time I was here. It was delicious.”

Don’t Remind the Person that a Loved One Is Dead: It’s not uncommon for people with dementia to believe their deceased spouse, parent or other loved one is still alive. They may be confused or feel hurt that the person doesn’t come to visit. If you inform them that the person is dead, they might not believe it and become angry with you. If they do believe you, they’ll probably be very upset by the news. What’s more, they’re likely to soon forget what you said and go back to believing their loved one is still alive. An exception to this guideline is if they ask you if the person is gone. Then it’s wise to give them an honest answer, even if they will soon forget it, and then go on to some other topic.

Don’t Bring up Other Topics That May Upset Them: There’s no reason to bring up topics you know may upset your loved one. If you don’t see eye-to eye on politics, for example, don’t even bring it up. It may just start an argument, which goes against the second guideline above. You won’t prevail and it’s just likely to cause them anger and/or frustration.

So there you go. A few guidelines for visiting. I hope these will be helpful to you in visiting your loved one and enriching the time you have together.

unnamedMarie Marley is the award-winning author of Come Back Early Today: A Memoir of Love, Alzheimer’s and Joy and co-author (with Daniel C. Potts, MD, FAAN) of Finding Joy in Alzheimer’s: New Hope for Caregivers. Her website (ComeBackEarlyToday.com) contains a wealth of information for Alzheimer’s caregivers.

 

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