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Recognizing And Dealing With A Parent’s Dementia

When dementia comes. “Father of the Bride” and “Nashville” star Kimberly Williams-Paisley opens up about facing — dealing with — her mother’s dementia.

Kimberly and Ashley with their mother Lynn Williams in 2003. (Jonathan Skow / Corbis)

Kimberly and Ashley with their mother Lynn Williams in 2003. (Jonathan Skow / Corbis)

When a parent hits dementia, it’s a tough passage for any family.  Every family.  Actress Kimberly Williams-Paisley had, literally, a Hollywood life.  Starred young in “Father of the Bride.”  Starred in TV’s “Nashville.”  Married to country music superstar Brad Paisley.  But when her mom, Linda, was hit at 61 with early dementia, this daughter’s family was hit like anyone else’s.  She’s written movingly about the denial and confusion and decline.  About the emotions and upheaval and, finally, acceptance.  This hour On Point:  when dementia hits home, with Kimberly Williams-Paisley.

– Tom Ashbrook

Guests

Kimberly Williams-Paisley, actor and director. (@Kimwilliamspais)

Darby Morhardt, clinical social worker, associate professor at the Cognitive Neurology and Alzheimer’s Disease Center at Northwestern University’s Feinberg School of Medicine.

Gurney Williams, father of Kimberly Williams.

From Tom’s Reading List

Redbook: “How I Faced My Mother’s Dementia” — “Nine years ago, it was my mother’s turn for a horrifying, life-changing moment. She was diagnosed with primary progressive aphasia (PPA) at age 61. It’s a degenerative brain disease, a form of dementia with no treatment or cure. Since then, I’ve watched a passionately joyful woman, a devoted mother, an engaged listener and friend deteriorate and transform into someone almost unrecognizable. It’s been agonizing to slowly lose her.”

The Guardian: Dementia care: what should housing providers offer? — “One in three people aged over 65 will die with dementia, and it is thought that more than 60% of all care home residents aged over 65 have a form of the condition. Dementia is one of the main causes of disability later in life – ahead of cancer, cardiovascular disease and stroke.”

HBO: The Alzheimer’s Project — “There are currently 10 million Americans providing 8.5 billion hours of unpaid care to people with Alzheimer’s disease or otherdementias, according to an estimate from the Alzheimer’s Association. Seventy percent of people with Alzheimer’s live at home, cared for by family and friends.”

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  • geraldfnord

    It should be an option, but some people are not bothered by it that much—the old cliché of ‘second childhood’ has some validity in that case. Here, though early detection is extremely important, as there are ethical issues implicit in letting a severely impaired person choose death (what protections have the Belgians put in place for minors might be relevant), and as for letting guardians choose it…well, I don’t wish to be too cynical, it’s a mistake to think people worse than they are, but very often guardians are also potential inheritors. That presents both the obvious potential for crime, but also that of people so scrupulous that in trying to avoid even a whiff of such that they will let the patient languish too long.

    I have told my wife, who is the best, longest-standing, and most constant light in my life, that when ‘I’ can no longer recognise her, and especially if ‘I’ can’t be made happy by the introduction of a friendly cat, _someone_ in my body might well be alive, but she should at that point consider the current tenant dead. She ideally should maintain the premises for the next occupant—out of sentiment, and because who knows what the Holy Miraculous Nanobots might be able to do?—but if that meant penury for her…well, she should save me the bother of creating a time-machine, going forward into the future, and relieving her of the burden (either by bringing back advanced tech from ‘up the line’, or with a shotgun)..

  • geraldfnord

    A sign I didn’t recognise as such in a dear relative now dead was her taking any occasion to demonstrate how many numbers she could recite from memory…this particular faculty stayed well-developed as others degraded from various physical problems, sadness, depression (they are different), and a largely self-imposed isolation. I should have seen it for the whistling-past-the-graveyard it was, but closeness can inhibit vision, and I doubt that many of us feel that we’ve done an adequate job…not to excuse real laxity, which was and often is there too.

    The best advice I can give is to refer people to the experiment in which a mother was told to act sad as realistically as she could; their three-year-olds reacted generally either by trying to comfort her or by acting aggressively toward her, going so far as to punch or kick…presumably, the mother’s sadness induces such pain in the child that they [sic] may react by attacking its perceived source. Watch for that latter reaction, if only because (what is in effect) yelling ‘Stop being sad or I’ll hurt you!’ doesn’t work well for long.

  • keltcrusader

    My spouse’s mother was diagnosed with Alzheimers, but long after we began to notice issues with her memory and decision making abilities.
    What we didn’t know was how much my father-in-law was keeping from us about their day-to-day lives, which included her filling the trunk with belongings and insisting she be driven “home” (her childhood home) on a daily basis or that she was becoming combative and verbally abusive with him.
    Her husband thought he was protecting her by keeping these things private, but because she was never treated properly, when the final break came, it was a bit of a shock for everyone in the family. Very sad!
    This is a talk everyone should have as soon as or before it becomes a family issue.

  • Emily4HL

    In my family, the person with dementia is someone I don’t have a good relationship with: my estranged father. Many of these stories are about losing a precious loved one. In my case, early-onset dementia explained some of the abuse that broke my relationship in the first place.

    • A Michael Bloom

      Emily, so sorry to hear that. You are not alone. I have met and supported a number of adult children who have withstood challenging parental relationships. Best to you.

  • Scott B

    Both my parents had dementia, first my father, them Mom a decade later. The worst thing you can do is deny. I was “lucky” in that I had once had a job taking care of dementia and Alzheimers patients, so I learned that, pride be damned, telling those with curious glances that they have dementia, and we’re trying to give everyone a nice change, you get knowing nods of understanding and often much needed help.

    It is hard, watching them go through it, and seeing the child/parent dynamic reverse. You do switch to plastic cups, but take the laughs when you can too. My mom, at the end, didn’t know us, but she loved watching her granddaughter toddle around her room at the home, and getting hugs.

    • sickofthechit

      My father loved Reece Cups and used to call them “cookies”. He would ask me, “Any more cookies?” I still chuckle to think of it. charles a. bowsher

    • http://www.bloomforcoach.com A Michael Bloom

      Bless you, Scott. I could not imagine travelling the road of dementia care twice. Humor is such a key to surviving the journey.

      • Scott B

        Humor is the other side of having to be the “bad guy”, which also happens. Like having to remind Mom that no one stole her [whatever], that it was the dementia, in (hopefully) a tactful way. But Mom had her moments, even when deep into the disease, and she’s look at me and say something like, “I am still in here, somewhere.” Sometimes I’d remind her she didn’t have to do something anymore, like take care of the cat, and she’d say, “I know. But I’m going to do it anyway.”

        The funniest thing Dad said was when he was still at home and I saw him watching something intently outside the window. I asked him what he was watching and he said. ” A blue cat.” Then he added, “I know there’s no such thing as blue cats, but I’m gonna watch this one anyway.”

        • http://www.bloomforcoach.com A Michael Bloom

          There were many humorous moments that took place during the journey of caring for my Dad. He got to the point that he refused to come and eat (join my mother) at mealtimes. To make sure he had access to food, I kept a number of clear containers of snacks (cookies, nuts, crackers, candy) and a bowl of fruit on the counter. He would happily graze throughout the day. One day, after returning to the kitchen from helping my mother in the bathroom, I noticed he made himself a sandwich. He had taken a container of chicken salad out of the fridge and made a sandwich with two chocolate chip cookies (thinking the cookies were slices of bread). Instead of correcting him, I asked him how his sandwich was and he responded, “TERRIFIC!” He enjoyed every last bite as I silently laughed. Later that day, I called one of my friends and told her the story. It then became a joke that I was running the “dementia diner” a place where new culinary discoveries are made. Enjoy your day!

  • sickofthechit

    My father’s last years were a fog from the alzheimers. The best advice I can offer is to let go of your past with the patient and focus instead on that day. What are their basic needs that you can meet?

    When my father would ask where my mother was (she was deceased) we simply told him she was not here now, she’ll be here later and then we directed the conversation somewhere else. My brother used to try to explain to him that she had died and I saw the pain my father felt again at “learning” again that she had died. I vowed then and there that none of us should remind him of her death ever again. It was only our ego or our need that would drive us to try to get him to recognize that she was dead. It served no positive purpose for him to learn again that she had died. So why put him through it? Let him believe that she was still alive. What harm in that? charles a. bowsher

    • http://www.bloomforcoach.com A Michael Bloom

      Great advice you provided, Charles. Sometimes we need to just roll with the fantasy to keep the calm. Not easy but necessary. Thanks for sharing!

    • Pat Merrell

      Great advice – as my Mother lost her ability to communicate as her Parkinson’s got worse. I was there one evening when my Dad could not understand what she was saying – I said “it does not matter…” , he replied, almost in tears, “it does matter.” I realized then that it certainly did matter. He was losing his beloved life partner and many of the “problems” we saw in him were obviously caused by the great grief he was suffering as he saw her go through this. We were so concerned with their physical needs that we really never dealt with his emotional needs properly. We should have. After she passed away, his doctor finally got him to take an anti-depressant. I wish we had pushed that ten years earlier. The last six months of his own life were very much improved even though he was in deep grief over the loss of our Mother.

  • http://www.bloomforcoach.com A Michael Bloom

    This is a very powerful episode. Thank you, Kimberly, for sharing so candidly. So important for caregivers to come out of the caregiving closet and to share to get support. My Dad had a catastrophic heart failure event in 2009. He ended up with vascular dementia and was never the same. He had served as the primary caregiver for my mother so I needed to step in to care for them both. Seeing my father dramatically change was so sad as my major partner in support through my mother’s battle with cancer was no longer there. On the positive side, my journey of caregiving was transformational and served as the impetus to publish my first book last year. My book is titled, “The Accidental Caregiver’s Survival Guide: Your Roadmap to Caregiving Without Regret.” I am on a mission to support fellow caregivers with practical coping strategies to avoid burnout so they can support their loved ones for the long-term and have a little life for themselves. Best wishes to all!

    • brettearle

      How can you be reached?

      I have some important things to mention/ask.

  • sickofthechit

    The driving question. I think we came up with a great solution. Shortly after dad got “lost” on his own street (a loop) we “lost” all the car keys and made ourselves available for transport wherever he wanted to go. He never called a locksmith, and we never “found” the keys. charles a. bowsher

  • Kevin

    I am listening at work and I am moved to tears by the eloquence of Gurney Williams.

  • Alanoncaretaker

    It’s a very one-sided view. What about the caretakers of parents/spouses who were not loving people earlier in life? Dealing with addiction in a family member in the past is practice for caring for them with dementia now. It makes one wonder about life purpose.

    • Beth Orchard

      i have the same fear with my parents, esp my father who suffered from bipolar. If he were to need this care he would be unbearable to be around, he was difficult enough when he was younger.

  • Pat Merrell

    Walking into dementia – at 67 I am very sure I am walking into this. I am trying to be very intentional – documenting my changes and talking to family, doctors and friends. So far, no one really wants to hear it. They either say they would not want do know – do not want to know – or reply with various ways of not-agreeing that this is happening. Being a former psychologist myself – many years ago – I can easily pass the screening test at my annual physical. My internist is more concerned with cardiac treatment and getting me on statins which I will not do. I really am not interested in extending my normal life span if this is in my future. I am at least 3rd generation of women and men who developed dementia in their 60s. This has been a very helpful program today.

    • brettearle

      I identify with your plight, generally.

      My source of identification, with your plight, comes from other kinds of medical challenges and other kinds of medical family challenges–than dementia.

      Your desire to avert trappings–with regard to future medical challenges, generally, and future medical challenges in the medical system–is something I, and my family, am grappling with.

      MDs and Hospitals may not necessarily be sympathetic to your wishes and needs.

      A Living Will/Health Care Proxy document, placed with a Health Care lawyer, might preserve your rights, for the future.

  • disqus_yEGntbySOZ

    As always, thank you for the program. However, I was only able to listen to bits and pieces as it made me too upset. I wish I could handle my dad’s alzheimers as well as Kim.

  • censeo

    I listened to this program with growing irritation; decided to suspend any judgement until I could read Paisley’s Redbook article. Dementia is no stranger to me; my step-mother is in her tenth year since diagnosis with Alzheimer’s. While Kim’s depictions capture some of the confusion and powerlessness experienced by both victim and the family, she presents a sanitized version of the derailment that occurs for everyone. Any connection made, however delusional, is a comfort, but a fleeting one. Listeners and reader need a much more accurate picture than the forgetfulness cliche.

    • AmyD7

      You are absolutely right. I think, though, that the picture Kimberly and Gurney paint is from a point of reflexion, having already dealt successfully (as much as humanly possible, of course) with the emotional turmoil and the derailment of which you speak.

      I was thinking of my grandmother as I listened. She developed severe dementia toward the end of her life, and the effects on my father and aunt were on the border of traumatic. Now, just a few years later, they speak with a lot of emotional control about their experience. The discussion today reminded me of just this.

  • eat_swim_read

    …well, we encouraged my mom to try a seniors apt. complex (nope) then assisted living (no) and then *another* assisted living complex.
    Where she made friends, fell in love and spent four happy years before dying of cancer, facilities intact.
    Loneliness in the elderly is rampant. The ‘live-at-home’ as long as you can crowd misses this point. People need people, not the same old dining room, etc.
    Even those with some memory or mental impairments improve with social contact.
    Best to you and your family -

  • howwegothere

    Do not give up, I am a senior who has seen so very strong reversals of this illness from a nutritional approach.

    http://malalzheimer.blogspot.com/2014/01/help-early-onset-alzheimers-what-to-do.html

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