Living with Alzheimer's: When YOU Are the Statistic

LIVING WITH ALZHEIMER’S: WHEN YOU ARE THE STATISTIC


Tucsonan Kathleen McCormack, an accomplished woman with a long and varied career in health policy, gerontology and career coaching, now has a diagnosis of Alzheimer’s disease.  

For a health professional like her, the irony of living with Alzheimer’s disease is particularly poignant.

Having known Kathleen for 22 years, I recognized that she was showing some signs of cognitive decline. Greeting cards started coming a month or more before my birthday.  She began missing birthday lunch gatherings (including her own) because she couldn’t find the restaurant.

Terry, her husband of 50 years, noticed something as well. 

“When I had my first inklings that Kathleen was having short-term memory problems, I waited for awhile and also consulted with other family members to make sure before I sat down with her to discuss it.  Although she was resistant, Kathleen allowed me to be present during her next consult with her doctor (an internal medicine specialist). Well, not only did Kathleen resist (at first) but so did her PCP.  This surprised me.”

Eight months and several appointments later, Kathleen got her referral—and diagnosis.  How is she dealing with it?

“It’s a long and winding road that plays out differently for everyone,” she notes, and there are emotional ups and downs from day to day.  “This is not like surgery or an illness, when you expect to get better and to recover.  In our culture, people expect to get better.”

The first step is deciding what to say—and when. “For all of us, the question is, ‘Whom do you talk to?  Whom do you tell?’”

Managing the family’s response is another important consideration.  “They’re going through their own feelings of anger, sorrow and denial,” she says.

Now, she wants to help others facing a similar diagnosis.

Two of her siblings also have begun to exhibit signs of memory loss. Urging them to be proactive, Kathleen has taken on the delicate and difficult task of encouraging them to have a neurological assessment.

Because of her health industry background, Kathleen understands the importance of research.  She is participating in a worldwide study of individuals with early Alzheimer’s disease on gantenerumab, a prospective drug developed by Hoffmann LaRoche and Genentech.  She does not know if she has the placebo or the drug.  

When the study concludes in two years, all randomized participants will have access to the drug, if it proves safe and effective.

In the meantime, she has found an unexpected upside. “I’ve started writing rhyming poetry, something I’ve never done before.”   

Terry also is upbeat about his wife’s journey.

“Right now, Kathleen is doing well, and I see small improvements in her ability to remember things. This may be because of the behavioral modifications that she has made herself, after doing her own research on short-term memory improvement. It could also be from the positive effect of the study drug, or maybe just a placebo effect. Regardless, I am hoping that this will continue.”

---by Jodi Goalstone.  She serves on the Regional Leadership Committee of the Alzheimer Association’s Desert Southwest Chapter in Southern Arizona.  https://www.alz.org/dsw

5 Tips That May Prevent Alzheimer's Disease

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5 Tips That May Prevent Alzheimer’s

Today, one in eight Americans over the age of 65 live with Alzheimer’s disease.

This progressive brain disorder causes brain cells to degenerate and die, which results in a continuing decline in memory and other mental functions. Alzheimer’s literally shrinks the brain. Each year, Alzheimer’s costs 79,000 people their lives, making it the sixth leading cause of death. It also costs American society – $200 billion this year alone, according to the Alzheimer’s Association‘s projection.

Scientists haven’t yet discovered a proven way to cure or prevent the disorder, but recent research connects certain lifestyle changes with decreased chances of developing Alzheimer’s. Considering that these lifestyle changes will improve your physical health or mental function even if Alzheimer’s weren’t a concern, you have little to lose…

§  Exercise your brain.

Two studies published last week by the American Academy of Neurology support existing evidence of a connection between your mental activity now and your mental acuity later in life. In other words, keeping mentally active appears to preserve your mental skills, which may otherwise weaken with time. Examples of ways to challenge your brain include reading, playing board games, and doing crossword puzzles.

§  Exercise your body.

This tip is also backed by numerous studies – of mice and humans. The Mayo Clinic has even called exercise the “best bet” for preventing Alzheimer’s. Note, though, that “exercise” in this case means getting your heart rate up for at least 30 minutes several times a week.

§  Protect your health.

A study published by the American Academy of Neurology last year found that seniors who rated their health as poor had greater chances of developing Alzheimer’s or another form of dementia. A second study published last year found that even a modest reduction of certain medical risk factors – smoking, obesity, sedentary lifestyles, midlife high blood pressure, diabetes, and depression – could prevent 3 million cases of Alzheimer’s worldwide.

§  Protect your mental health.

A 10-year study published in the Archives of Internal Medicine in November connected poor psychological health (specifically depression and anxiety) to a greater chance of dying from Alzheimer’s Disease.

As if you needed another reason to relieve stress, “One possibility, the researchers propose, is that chronic levels of psychological distress may raise levels of the stress hormone cortisol. Persistently high levels of cortisol, in turn, may have toxic effects on the hippocampus, a part of the brain that is critical for memory.”

§  Learn a foreign language.

An article about the benefits of being bilingual, published in The New York Times last month, cited a recent University of California-San Diego study. It found that people with a higher degree of bilingualism were more resistant to Alzheimer’s disease and other forms of dementia. In other words, the more proficient you are at a second language, the later the disease onset.

Visit us online @ www.gomastercare.com

Home Instead Senior Care Addresses: "How To Deal with Family Conflict Caused by Alzheimer's"

How to Deal with Family Conflict Caused by Alzheimer’s

Only when families work together as a team can their loved ones with Alzheimer's receive the best love and care possible.   

Shortly after her father passed away, Valerie's mother was diagnosed with Alzheimer's disease.

“When it became apparent that there was something wrong with my mother, my brother told me, ‘I’m sorry, but I’m done with her.’

I don’t know what happened between them, but he was true to his word. He was really scarce with his visits. I guess since I am her caregiver, I’m out too. He has no contact with me. I am really alone in this endeavor to take care of Mom. Alzheimer’s has broken up my family.”

Sadly, an ill loved one is the number one trigger for family conflict, according to a study conducted by the Home Instead Senior Care^® network. Coping with the reality of a loved one’s Alzheimer’s not only has its emotional difficulties, but logistical ones as well, especially in terms of decision-making and bearing the responsibility of caregiving. Despite these challenges, the following tips may help you unite your family around your loved one with Alzheimer’s when that person needs family support the most.

·         Communicate Regularly. Don’t allow weeks to turn into months and years of not communicating with family members you feel should take a vested interest in your parents’ condition and care. If you’ve fallen out of touch with a member of your family, reach out through a phone call, email, card or letter.

·         Empathize. Difficult situations affect everyone differently, so try to understand your sibling’s point of view before getting angry or upset. Approaching the issue this way will help you suggest an appropriate solution. Maybe your brother can’t emotionally deal with Mom “losing her mind.” If that’s the case, maybe he can help you by contributing financially to her care instead. Empathy was one main factor that helped keep the Hamilton sisters united. The stress of their mother’s illness affected every person in the family differently, but as you’ll learn from their family’s story, they persevered through the challenges to provide the loving care they felt their mother deserved.

·         Ask for Help. If you feel over-burdened by the responsibility of caregiving, inform the rest of your family (without complaining or blaming others). Your sibling(s) may assume you’re doing just fine handling everything on your own unless you tell them what challenges you’re facing and specific ways they can help. As the maxim goes, “a burden shared is a burden halved.”

·         Make Decisions Together. Even if you serve as the primary caregiver of your parents, involve your sibling(s) when you need to make a major care decision. Maybe you feel Dad’s Alzheimer’s has progressed to a point where he needs additional assistance, and you’re looking into hiring a professional in-home caregiver for him. Talk through the pros, cons, financial considerations and possible alternatives with your siblings before you make a decision. Taking their thoughts and opinions into account will help to eliminate any hard feelings, grudges or resentments.

·         Leave Childhood Rivalries Behind. Easier said than done, of course, but try to approach the issue as the adult you are now, not as the younger person your siblings may still see you as. Stepping back and realizing how unresolved issues from long ago influence your present relationships may put a helpful new perspective on your current situation.

·         Enlist the Help of a Mediator. Sometimes family issues become too complicated or emotionally charged to solve on your own. A third-party resource, particularly a professional such as a counselor, mediator or even a doctor or geriatric care manager, can provide an impartial voice of reason.

Only when families work together as a team can their loved ones with Alzheimer’s receive the best love and care possible. Remember that regardless of your past history or current situation, all relationships are a work-in-progress. Envisioning how efforts to make amends will ultimately benefit everyone and can help steer you and your family members on a path toward reconciliation.

For additional support managing family relationships and resolving family conflict, explore the resources in our 50-50 Rule® program.

Visit us online @ http://www.caregiverstress.com/dementia-alzheimers-disease/elder-care/family-conflict-caused-by-alzheimers/

BrightStar Care ~ I Have Alzheimer's, Now What?

I HAVE ALZHEIMER’S, NOW WHAT?

If you been diagnosed with Alzheimer’s Disease, don’t worry, you are not alone. There are people who understand what you are going through, and help is available. There is much you can do in the early stage to cope with the changes ahead. According to the Alzheimer’s Association, it’s normal to experience a range of emotions upon receiving a diagnosis of Alzheimer’s.

Emotions you may have

You may be grieving over the present losses you are experiencing, or the expectation of future changes as the disease progresses. It can be helpful to identify and understand some of the emotions you may experience after receiving your diagnosis.

• Anger: Your life is taking a different course than the one you and your family had planned. You cannot control the course of the disease.
• Relief: The changes you were experiencing were cause for concern. A diagnosis validated these concerns by assigning a name to your symptoms.
• Denial: The diagnosis seems impossible to believe. You may feel overwhelmed by how your life will change as a result of Alzheimer’s.
• Depression: You may feel sad or hopeless about the way your life is changing.
• Resentment: You may be asking yourself what you did to deserve your diagnosis or why this is happening to you and not someone else.
• Fear: You may be fearful of the future and how your family will be affected.
• Isolation: You may feel as if no one understands  what you’re going through or lose interest in maintaining relationships with others.
• Sense of loss: It may be difficult to accept changes in your abilities.

Taking care of your emotional needs

Coming to terms with your diagnosis and the emotions you are feeling will help you accept your diagnosis, move forward and discover new ways to live a positive and fulfilling life. When working through your feelings, try a combination of approaches. Try the following tips:

1. Write down your thoughts and feelings about your diagnosis in a journal.
2. You may find your friends and family struggling with your diagnosis and their feelings. Learn more about how you can help family and friends.
3. Share your feelings with close family and friends. Speak open and honestly about your feelings.
4. Surround yourself with a good support system that includes individuals who are also living in the early stage of the disease and understand what you’re going through.
5. Join an early-stage support group. It can provide you with a safe and supportive environment of peers. To find a support group in your area, check with your local Alzheimer’s Association chapter.
6. Talk to your doctor if you or others are concerned about your emotional well-being. Your doctor can determine the most appropriate treatment plan to address your concerns.
7. Seek help from a counselor or clergy member. He or she can help you to see things in a new way and help you understand more fully what you are feeling.
8. If you are feeling misunderstood or stereotyped because of your diagnosis, learn what you can do to overcome stigma.
9. Stay engaged. Continue to do the activities you enjoy for as long as you are able.
10. Take the time your need to feel sad, mourn and grieve.

If you have any questions about getting support for Alzheimer’s at home or need additional resources, contact our local office. We are here for you.

Visit us online @  www.BrightStarCare.com