Tag Archives: Alzheimers

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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