Thursday, December 3, 2015

Loving Till It Hurts: Women, Dementia, & Caregiving

During what turned out to be our last phone conversation, my Guideposts editor, Phyllis Hobe, talked about a book that she wanted to write: it was going to be based on her own experience as a caregiver to her stepfather, and she wanted to call it Loving Till It Hurts. She died before she had a chance to write a single word. That title haunted me, however. This is my small tribute to one of the best editors I ever worked with.

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Dementia, my oldest brother once said, robs you of your personality. We had ample proof of that in the three-and-a-half years that the disease sucked away our mother’s personality, leaving her a stranger both to us and to herself. The most poignant image I have is of Mom sitting in her chair during her last holiday with us, holding gifts that she ordinarily would’ve delighted in – a pretty pink-and-white afghan, a stained-glass bluebird – and just staring us, her beautiful brown eyes completely blank.

For Rebecca Penarroya Blanchette, her mother’s dementia meant trading places with her. “I was feeding her,” she says. “I was changing her diaper. It was like a 48-hour work day.” When Blanchette came home from work, she would change her mom and brush her teeth before she even thought about starting supper.

Then there was the financial burden. “You’re not prepared for it,” Blanchette says. “They can live one year to twenty years. Every person is different.” The only silver – well, pewter – lining in the scenario was that her mother knew her most of the time. “I adored my mom. I am an only child. To see her slip away into dementia was devastating. She was good at everything.”

“The truth is, there is no knowing,” observes Carol Child, who writes under the pseudonym Samantha Mozart. “Every situation is different, and every moment within that situation is different: expect the unexpected.”

There’s a reason I start with three stories/quotes from a female perspective. Caregiving is, of course, largely a women’s issue, though some men do take on the role. “Yes, it’s a cultural thing,” agrees Patty O’Brian, the North Central Regional Director of the Alzheimer’s Association, Connecticut Chapter. “It goes back to roles in the family, roles in the community. Specifically in the Latino culture, it’s the female that takes on the role – it could be a daughter, a daughter-in-law, or a granddaughter.”

Most of the caregivers I’ve known over the years have been female. In fact, three out of five unpaid caregivers are women; 2.5 more women than men provide 24-hour care for someone with Alzheimer’s. And 20 per cent of the women caregivers with jobs have gone from working full-time to working part-time because of those caregiving duties.

“Within our complex system of long-term care, women’s caregiving is essential in providing a backbone of support,” maintains the Family Caregiver Alliance. “In fact, the value of the informal care that women provide ranges from $148 billion to $188 billion annually. Women provide the majority of informal care to spouses, parents, parents-in-law, friends and neighbors, and they play many roles while caregiving—hands-on health provider, care manager, friend, companion, surrogate decision-maker and advocate.”

In other words, we’re playing that same caretaker role that women played in earlier times. And the cost is very high, as the Alliance points out. Aside from the physical and emotional toll, caregiving “places a further strain on the precarious nature of many women’s retirement income, particularly since time out of the workforce does not only have short-term financial consequences. For most women, fewer contributions to pensions, Social Security and other retirement savings vehicles are the result of reduced hours on the job or fewer years in the workforce.”

“Anyone who has been a caregiver knows that no matter how much help you have, when you are in the middle of it, you are alone,” writes Mozart/Child in Begins the Night Music: A Dementia Caregiver’s Journal; “you feel guilty for not doing better – and you wonder if this moment, this hour, these hours will ever end, if you’ll ever get out; and when you do, then what?” Mozart’s book – and its sequel, To What Green Altar – should be required reading for all caregivers. She writes about a world peopled by health aides who don’t show up on time and doctors, hospice workers, and agencies with red tape coming out their ears, the better not to hear you with. About what it’s like watching her mother “gradually shutting down” and how she feels as though she’s “shooting in the dark, often blindsided and with the strength of a jellyfish.”

“One of the things we always repeat during our caregiving seminars and support group is that it’s O.K. to ask for help,” says Elizabeth Marquis, the director of marketing at McLean in Simsbury.

It’s important, too, she adds, to acknowledge that a loss has occurred, even though your loved one is still physically present. “With that dynamic, you can feel sad. You can feel the loss of that relationship. It’s O. K. to pause and notice how this change has impacted your life.”

It’s easy to forget all that when you’re in the trenches. And it’s even easier to let go of friends and activities you enjoy. But they’re precisely what caregivers need to hold on to most.

“It’s those relationships and those things you like to do that sustain you through the process of caregiving and beyond,” Marquis insists. “They sustain and support you and can provide balance and well-being.”

Connecticut now has a statewide respite care program, courtesy of O’Brian’s organization, the Area Agencies on Aging, and the Connecticut State Department on Aging. This program “offers relief to stressed caregivers by providing information, support, the development of an appropriate plan of care, and services for the individual with Alzheimer’s disease or related dementias.” (Remember, dementia is, as the Alzheimer’s Society in the United Kingdom points out, “an umbrella term....[and t]here are many different types of dementia although some are far more common than others.”)

Under the Connecticut program’s guidelines, you, the caregiver, can go the traditional route and obtain said services through agencies. Or you may hire a companion/aide of your own choosing. Either way, there is a maximum of $7,500 in services available on a yearly basis, subject to an Agency on Aging Care Manager’s approval. The individual you’re caring for may also receive a yearly maximum of 30 days of out-of-home respite care services. (This does not, however, include adult day care, which is a godsend to many caregivers.)

You need a doctor’s written statement that yes, said individual does have dementia. And then there are the finances. You have to show that the applicant/patient has income of $44,591 or less and liquid assets of $118,549 or less. Income includes Social Security (minus the Medicare Part B premiums); Supplemental security income; Railroad retirement Income; veterans’ benefits; and any other one-time or recurring payments. Liquid assets include checking and savings accounts; stocks and bonds; IRAS and certificates of deposit; and any other holdings that you can convert into cash.

Last, but not least, a co-payment of 20% of the cost of services is required unless the Care Manager decides to waive it on account of financial hardship. So, this is not necessarily “easy money.”

Caregiving may be a women’s issue, but so, unfortunately, is dementia. Nearly two-thirds of the 3.2 million people suffering from Alzheimer’s are female. Women in their 60s are twice as likely to develop Alzheimer’s as they are breast cancer. “Once a woman hits 60, the figures really change in regard to breast cancer and dementia,” observes O’Brian. “At age 65, women without Alzheimer’s have a one-in-six chance of developing Alzheimer’s; for men, it’s one in eleven.”

Alzheimer’s is considered the sixth leading cause of death in this country, ”but we should be higher,” she adds. “We still have a lot of questions and not a lot of answers. We still have a long ways to go.” For instance, nearly of quarter of men and women mistakenly believe that “Alzheimer’s must run in your family. But everyone is at risk. This is not a disease that discriminates.” And yet Alzheimer’s research is significantly underfunded compared to other diseases.

So caregivers slog on the best they can. On a personal level, you can’t help wondering where the person is that you knew so well. Occasionally, you see firefly glimmers of that old self.  "It is difficult to watch a loved one’s life slowly slipping away,” observes Mozart/Child. “[I]t is hard to know what goes on in the mind of a dementia patient – other than ‘movie trailers’ of seeking lost loves, of being lost and trying to find the subway and the way home.”

Blanchette has her own response to what has been called “the Alzheimer’s crisis”: a silver bracelet that she has designed in her mother’s memory. Twenty per cent of the proceeds go toward Alzheimer’s research. It’s a very simple bracelet with a single rectangular charm that reads, “Dementia, find a cure one bracelet at a time.”



-- Alzheimer’s Helpline. (Lines are open 24/7). 1-800-272-3900.

-- For more information on the Connecticut Statewide Respite Program, call 1-800-994-9422 to be connected with the Area Agency on Aging representative nearest to you.

-- Rebecca Penarroya Blanchette’s bracelets can be purchased at http://www.puramente.jewelry.com.

-- Samantha Mozart’s books can be purchased on Amazon.com.

6 comments:

Susan Scott said...

Thank you TJ for this post and the experiences of three women. It must take an emotional toll on the caregiver ...There is much ongoing research into Alzheimers/Dementia .. I heard that some sort of sonar therapy was underway in Australia? I've heard that music may be enjoyable for the person with Alzheimer?

T. J. Banks said...

Thanks, Susan. I do think that most caregivers tend to be women, although I have known men who've acted as caregivers. I don't know anything about sonar therapy, but I can see how musical therapy would work wonders: music, like smell, is capable of evoking many memories.

Samantha Mozart said...

First, thank you, Susan, for reminding me (in an email copy I received) to read this story, via your asking T.J. to repost the link to it.

Ironic, T.J., that Phyllis Hobe should pass on before writing of her caregiving experiences.

Thank you for writing this story. It should be published everywhere. I wonder if the Huffington Post would republish it. I would hope. Please submit it if you can. I will post a link on my Facebook page. Your story is well-researched, comprehensive and well-presented, not to mention beautifully and sensitively written, as always.

I am so glad you have written this (I can't say it enough); women caregiving -- and especially for dementia -- is ongoing. It doesn't change. Your story is timely. New developments in increased levels of aid -- financial and informational -- lag far behind the immersive experience. As you once said (in a review of my first book), if you are not now a caregiver, chances are you will be. (I paraphrase.)

And, yes, music IS important. We had a hospice music therapist, and our chaplain also played music for my mother on my mother's electronic organ. My mother loved music. She played the piano and the organ. Music was the last thing my mother heard -- she reacted -- minutes before she passed on.

You deserve a literary prize for this one, T.J. Many thanks.

T. J. Banks said...

Thank you, Samantha. I'm glad that more effort is being made to help caregivers; but, as you say, those efforts are lagging "far behind the immersive experience." So much of that, I believe, has to do with the fact that caregivers are largely female: women's issues generally get pushed to the proverbial back burner. And since women have been playing the caregiver role for centuries, many accept it as the norm and don't think about the toll it takes.

Gwynn Rogers said...

Thanks TJ. for your excellent post. I watched my grandmother and her daughter, my aunt, die of Alzheimer's and it is a horrifying experience. My aunt became violent and was drugged and strapped down. She was a VERY loving person so to watch her changes ripped my heart out.

I agree with your comment that it seems to be the woman's role to care for these cases. Some women can handle the stress as Ms. Mozart/Child did. My mother could not deal with watching her mother-in-law decline and ended up putting her in a Medicaid home. I don't know what was worse watching my grandmother decline of watching her lack of care in the Medicaid nursing home.

This is an issue that truly needs to be examined and dealt with so that families can receive more help. Thank you for starting the process by educating people.

T. J. Banks said...

Thanks, Gwynn! Talking about these things in our on-line group...hearing each other's stories...heightened my awareness of how critical an issue it really is. Before I knew all of you Roos, I only knew how it had affected my brothers and me -- now I understand how many of us are struggling with it.