Keeping one’s illness, when it involved mental or emotional conditions, “in the closet” was common when I was growing up.  You only whispered about someone’s mental disorders.  Families tried to keep that person at home, while not literally “in a closet,” figuratively so.

You tried not to talk about Aunt Mollie who laughed at inappropriate times, wore her clothes backward, took walks in the middle of the night, or held conversations with people of the past.  Perhaps she even had to spend some time in a mental institution and have “shock” treatment, the common way of dealing with mental and emotional conditions then.

Is Alzheimer’s in “the closet?”

Although we’re able to talk more openly about dementia and Alzheimer’s nowadays, it wasn’t always so.  In the early 1990s, soon after my dad’s death, realized my mom was developing the same symptoms as her sister, who had been diagnosed with Alzheimer’s.  However, when I mentioned this to family and friends, many didn’t want to face it and didn’t want to talk about it.

Yet, if Mother had developed a physical illness, there would have been no problem.Yes, we would have had to arrange care, but there would have been more family involvement and communication. 

Many families still don’t want to admit a member has Alzheimer’s.  They find some stigma attached.  Since it’s nothing they have done to cause it, nor the person who had developed it, why not associate with that family member?  In spite of frustrations and disappointments, you actually can enjoy them and bring them pleasure.

Carol Bradley Bursack has more to say on this topic at Minding Our Elders and Our Alzheimer’s.com. 

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Is Alzheimer’s a “Closet” Disease?

Check out Carol Bradley Bursack’s blog and learn how to enter a drawing for her book, Minding Our Elders: Caregivers Share Their Personal Stories.  You’ll need to take a survey about caregiving, but it’s easy and quick. 

Then your name will be entered into the random drawing for one of ten copies of Carol’s book.

(c)2008 Mary Emma Allen

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A Drawing & a Survey for Minding Our Elders

Jugging caregiving of an Alzheimer’s family member with working at a job outside the home becomes a great challenge to many. 

 The income is needed while the care for one’s parent or spouse increases.  What are we to do?

Carol Bradley Bursack mentions The Employed Caregiver on her blog, Minding Our Elders and refers us to a very informative article on this topic, Caregiving Issues and the Workplace at AgingCare.com .

Caregivers are the most effective and efficient [at home and in the workplace] when they arm themselves with as much information as possible about their aging loved one’s current situation- both financial and medical.

At the above resources you’ll find specific information that should inform and help you.  I wish I’d had easy access to the assistance we now find on the Internet and in support groups (both online and off) when Mother and Auntie experienced this illness.  I had a considerable juggling act with my outside-the-home work along with my husband’s and my business.

Do you have suggestions for managing caregiving and your job?

(c)2008 Mary Emma Allen

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Balancing Alzheimer’s Caregiving & Your Job

 Caring for Alzheimer’s patients often involves lifting, holding someone who can’t walk well, moving someone.  Much of this activity often results in back injuries.

Carol Bradley Bursack has an informative article, Caregiver Injuries: Avoid Them, at her Minding Our Elders site. 

Caregivers often need to learn how to lift and do many other things for those they care for. Sometimes, we can do it alone, sometimes we can’t.

She also refers to an article by Denise Clark, Preventing Injuries Among Caregivers.

I was fortunate that I didn’t experience injuries when caring for Mother and Auntie.  But there were instances when this might have occurred if they had fallen, stumbled when I was assisting them, or needed lifting from bed to chair.

Check out some preventative measures in these two posts by Carol and Denise.

(c)2008 Mary Emma Allen

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Alzheimer’s Caregivers – Tips on Avoiding Injuries

 One of my fears, as my mom became less capable of making decisions and more susceptible to suggestions of strangers, was the possibility of her getting caught in contractor or other type of fraud.  For some reason, at a certain age or stage of Alzheimer’s, parents often resent taking suggestions from their children, especially advice concerning financial and health matters.

My husband Jim, who was a contractor, began making needed repairs to Mother’s house and put new shingles on the roof.  She didn’t understand why she needed a new roof even though the old was leaking into the attic space. 

We lived 275 miles away and couldn’t be with her all the time.  After the roof was repaired, she told us a man stopped by and said those weren’t the right shingles for the roof.  He had better ones.  She wondered if she should have him do the roof.  (She would never have considered this in former years.)

I explained that Jim had taken care of it and this stranger wasn’t telling her the truth.  I was concerned we’d arrive one day and find someone reroofing it. However, I apparently circumvented that.  Mother’s roof remained in tact.

Solicitation from Individuals

Another time, a young woman in the neighborhood convinced Mother to give her money for college.  (Mother, a former teacher, encouraged young people to get a college education.)  I made inquiries and discovered the girl had dropped out of college, but was telling Mother she wanted to go back and needed money. 

(Perhaps she did, but Mother didn’t have the money at that time to finance a college education.  The first money Mother gave her, before I learned of it, obviously wasn’t used for college, unless to repay a loan.)

I was reminded of these concerns and others when I read Carol Bradley Bursack’s, Protecting Seniors from Contractor Fraud and Rip Offs.  (Carol writes Minding Our Elders.)

Here’s an excerpt:

 Most of you readers know that I hold Barbara Mascio, of Senior Approved Services, in the highest regard. Her company strives to make sure that seniors are treated well by every company that serves them.

What challenges have you encountered along these lines and how have you handled them?

(c)2008 Mary Emma Allen

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Protecting Alzheimer’s Patients from Contractor Fraud

 At some point as Alzheimer’s disease progresses, the victim no longer can take care of finances, personal, and medical needs.  Even if family members can care for them, a caregiver often needs to have this made official.

Depending on individual circumstances, family and patient cooperation, as well as legal requirements in specific states, the degree to which you’ll need to go to manage patient care will vary.  For instance, my mom gave me power of attorney for her affairs.  That was all I needed, in our situation, while I was responsible for her care.  However, the power of attorney was requested on many occasions in order for me to manage her affairs while I was caring for her.

A cousin has become court appointed conservator for her mom and has power of attorney, too.  This isn’t so inclusive as guardianship, but is sufficient in this case.  The judge decided the mother didn’t need a guardian at this point, but will review the situation at a later date if guardianship is deemed necessary.

Carol Bradley Bursack, at Minding Our Elders, discusses the situation, Elder Guardianship – Some Tips.  She also points us to Petitioning for Guardianship at OurAlzheimer’s.com.

These articles will give you an introduction to the issue.  Each state generally will have its variations.

Have you had to acquire guardianship or something similar?  How has it worked out?

(c)2008 Mary Emma Allen 

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Guardianship, Conservatorship & Power of Attorney for Alzheimer’s Patients

  Do you wonder sometimes what you can do to help a friend or family member caregiver as they care for the person with Alzheimer’s?  You sense they need help, but you’re uncertain what to ask or how to go about it.

Carol Bradley Bursack, at Minding Our Elders, recommends Because You Care by Kathryn Kilpatrick and Joanna Chernauskas.

 Because You Care is packed with simple ideas that can take a load off a caregiving friend. Things you may not think of on your own, because of their very simplicity.

Do you have suggestions for helping caregivers?

What do you find helpful from friends and family?

(c)2008 Mary Emma Allen

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What Can I Do to Help?

We often refer to caregivers as “parenting their parents” and my book, written several years ago, is titled, When We Become the Parent to Our Parents.  This refers to the reversal in caregiving roles, when parents now need their adult children to be responsible for them or at least to assist them.

Carol Bradley Bursack, author of Minding Our Elders, has an interesting take on this concept in her article, Why “Role Reversal” and Other Catch Phrases Can Skew a Caregiver’s Thinking.  The love and respect for her parents shines through the words.

I strongly believe that no matter how many losses our elders suffer from the cruel decline of body and brain, they deserve to be considered adults.

It depends on how we consider our role as caregiver in relation to our parents and whether we continue to give them respect and allow them dignity in spite of the frustrations we encounter.  My dad was able to make his own decisions at age 92 until he went into a coma in the hospital.  He needed our help for physical tasks.

My mother developed Alzheimer’s and became helpless in caring for herself and her business affairs.  If you look at it biologically, I wasn’t her parent.  However, I cared for her as I had our daughter when she was small. 

However, through this caring, I developed a greater appreciation for Mother.  My love for her was different, but no less than when I was child.  In fact, it grew greater during my caregiver years.  Our roles were reversed…she had cared for me when I was young.  I now cared for her when she no longer could.

However, this constitutes a season of life when children can repay their parents, so to speak, for their years of caregiving, whether we consider our roles reversed or simply exploration of a somewhat different path to reach the same destination.

(c)2008 Mary Emma Allen    

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Are Caregivers the Parent to Their Parents?