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I read something very poignant today ...

4/29/2015

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Today I read something very poignant from Bob DeMarco and Alzheimer's Reading Room .... ”When Someone living with Dementia believes something to be true, it is in the Alzheimer’s world." This strikes me as one of the most difficult but important things to do, live in the moment with the person you love who lives in the Alzheimer’s world.

I found this especially true with my mom.  As some may know, but many may not, I was the full time caregiver for my mom, a wonderful, spirited, loving and dynamic woman who lived with me for 13 years, until she died at home, our home, in her sleep, at 93 years young.  For many years my mom lived with me because well, she couldn't really do it by herself after my dad died.  She was 80 years old, had lived as part of a family, as a daughter, then wife and mother her whole life. And now, after my father’s death, she was faced with something she never experienced, being alone. And she did not want to....live alone.... So, through the benefit of love, luck and advanced planning, mom came to live with me in NYC – and enjoyed her life very much.  



But as she passed from her 80s into her 90s, what was once forgetfulness and the desire to have me help her with daily activities became Dementia, Sundowning and the need for daily 24/7 care. And the necessity to accept HER reality, as opposed to attempting to bring her into MY reality, the one I thought was the true reality.  With the help of wonderful medical professionals and my own background in using the arts as a tool for therapy, I learned that what day or time it was did not matter.  What mattered was the comfort my mother felt in HER world.  

While always under superb medical care, while being in regular contact with all her doctors, and having made the decision well before hand that my mother wanted to be home, not in an institutionalized setting, I and my brother became her world.



 In what we knew were her final days,  mom began to talk, and talk, and talk ... for 48 hours straight, never wanting to rest, lay down, sleep.  So I stayed up with her and listened.  And when she called me by her eldest sisters’s name, Johanna, rather than argue and tell her, “It’s me mom … Maryellen”. I answered to Johanna.  That was HER truth in HER world.  And then, the most amazing thing happened.  My mom said to me, ”Johanna, there are people in the room.  You need to make coffee.  Mama will be very upset  there is no coffee on”.  Now,  it was 2:30am … she and I had been up for over 48 hours straight.  She was in her bedroom, the lights were dim, but not out.  But she wanted coffee to be brewed for the people she saw in the room.  She settled down once she smelled the coffee.  I got her settled in bed, smoothed the sheets, fluffed her pillow and she seemed to fall asleep.  Her breathing became calm and regular.  Her face peaceful.  I sat with her a while and when it was clear that she was sleeping and was calm, I withdrew from her bedroom.

My mother died that night.  In her sleep, in a bed and room that was hers and in a reality that was HERS. Had two people come to help her on her journey?  I don’t know.  But at least, for my mother, she was pleased because they had coffee.

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Giving Your Care Recipient a Feeling of Usefulness

7/15/2014

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"I don't know what to do with the parent/partner/friend/spouse I am caring for all day long. They are still cognizant enough to know what is going on, but I really can't just give them a job to do, one that has any importance, unsupervised. So by time I come up with something - I am exhausted and say forget it."

How well I know how that feels. And when friends would say, "Tell me what I can do to help" ... coming up with something other than "Come on over and bring a bottle of wine..." was tough.

But there are things that we can do to help care givers who have a parent or partner at home that they are caring for and run out of ideas for things to keep them busy. While my mom was alive and lived with me, I knew she always loved the garden. In her heyday, she would be out in the garden at 6AM - singing with the birds ...

When she was no longer able to do any gardening on her own, we started a new tradition. Mom was the official "garden waterer." I would take her outside, with her walker - the kind that had the little seat when you turn it around - and get her set, seated on the walker, lock the wheels and gave her the hose.  She was outside, got some fresh air, I could hear her singing ... and every 15 minutes or so, I would move her to a different spot in the garden, and set her up all over again. And the dog would become part of the act. It became her job ... and she took it seriously. When I would get ready to go outside to work, mom reminded me that she had to water... when she could not remember many other things,she remembered that - because it was something she loved doing and COULD do. She was so well known for her "watering skills" that neighbors knew something was wrong the first spring day came and Mom was not outside with her hose ...

So, if you can find a task that the person you are caring for can do regularly, inside or outside, with some supervision, it can give them a feeling of usefulness. Polish the silver, fold the lines napkins, sort socks - these are not things that are essential tasks, but can provide the opportunity for you to work together, OR... this is the time to tell the friends who ask "What can I do?" ... THIS IS WHAT YOU CAN DO. I need someone to "caregiver-sit" for an hour today or a half and hour every Thursday (so I can get a manicure - because as a CAREGIVER - YOU DESERVE IT) or spend that half an hour with someone else in your household that looks to you for love, or who's love you need to recharge your battery. And they can help sort the socks, fold the linens.

And remember, every small step is a victory, and in this world of care-giving, it is the small victories that we celebrate.  

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Saving Time by Shopping On-line

3/15/2014

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March 14th was officially "International Ask a Question Day", so with that in mind i wanted to ask the question ... are you using your time as well as you could?

Do you have the days when you pull into the driveway and think - "Oh darn, I forgot mom's prescriptions. I also didn't get the bed liners - and Oh NO! I forgot the Depends!"

You are tired, so tired. You make your lists, but you have to rush because you only have a short amount of time to leave your loved one in the care of someone, perhaps a generous neighbor while you run errands or sometimes even leave them by themselves while you are out, with one part of your mind on what you need to get and the other part of your mind thinking "I hope they are OK".

I pose this question, because if you are reading this blog, then you can learn how to save yourself time and money. I will share with you such a simple idea I provide my clients ... shopping online. Before you say "I can't do it," "there are all those sites, I don't want to bother" ... just stay with me for a few moments.

I helped put together a list for my clients - things we just discussed ... things like

  1. get the prescriptions filled on line and get them delivered
  2. purchase safety handle for the bathroom and a larger non-slip tub liner
  3. order baby wipes and Depends (or any other brand of "adult protection")
  4. order skin lotion - we don't want any cracked skin - especially in this cold weather 
  5. purchase liquid meal supplements for the days someone you care for just doesn't feel like eating, but you know they need something - and sometimes it is easier to drink something than chew and swallow food.

Nowadays there are hundred of on line sites that can give you one stop shopping, from Drugstore.com to Amazon.com to your favorite grocery chain.  ALMOST everything can be delivered, and the point is that you CAN save time and money by shopping online. If you go to a site, you can often compare prices and find the product best for you, or the one that offers free delivery, or the one that can get you what you need by tomorrow.

For example, I found that one problem that some caregivers came to me with is “the person I care for has to take so many pills – and when it comes to the vitamins –they just can’t take more pills.  What should I do?”  First of course is to talk with your health care provider.  But I found that there are wonderful vitamins that come in powder form and need only to be mixed with a bit of water and helped solve the problem taking more pills!  And I found I starting taking the vitamins too, it was so easy.  And it became something I did with my loved one, my mom, every morning.
The point is that – during the “ask yourself a question day”  – ask yourself what can you do to make your caregiving a little bit easier?  Maybe it is actually possible to use this darn computer for something that will help you and save you time. 

And NO – I don’t get paid by the stores … I just want to make things easier for us caregivers.  Because I remember the nights I got home and realized I forgot the major thing I needed.  Or went to the store and could not remember what I was there to buy!

So try on line shopping and let me know what you think.  I can recommend all kinds of products I know work and have made a difference to other caregivers.  But always, always check with your doctor first....they can help you with prescription medicine ordering and home delivery as well as about anything else, including meal supplements and vitamins. 

So … as the old saying used to go … try it, you’ll like it!   Try on line shopping and put your feet up and have some coffee or tea while you are shopping.  Please let me know if I can help you.  Try on line shopping and I hope the sites you find can help you as much as it has helped others – and saves you time and energy.  Something caregivers desperately need!

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Someone asked me what I do ...

11/6/2013

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Someone recently asked me what I do. I thought for a moment and answered “I am an elder-care coach”. Puzzled, they asked, “What is THAT”? “Someone”, I answered, “who works with the elderly, their family and their caregivers to help provide a network of support so the elderly can each live with dignity and happiness in the home of their choice for as long as they are medically able”. And the person looked at me and at first said, “Why?”…I did not bother to answer that question, since the more important question should have been “HOW?” The how is one person, one patient, one caregiver, and one heath care professional at a time.

Suzanne Mintz, co-founder and president of the National Family Caregivers Association (NFCA) says 80 percent of long-term care in this country is done by family and friends. She puts it pretty bluntly: “We are the care system.”

  • Are you confused about how to help your aging parents?
  • Are you struggling with siblings over care of your parents?
  • Are you torn between caring for aging parents, your family & yourself?

You are feeling overwhelmed and guilty. You may even be losing sleep over your situation…
You are not alone. There are wonderful people that can help you decide what is best for you and your loved ones. There are people and places dedicated to providing safe, home-like environment supported by caring, compassionate staff who embrace your loved ones individual’s needs and worth. Every person has a right to autonomy, freedom of choice, dignity and respect, and being in an environment where their right to privacy is acknowledged and fostered.

How will this happen? As I started to say, one person, one patient, and one caregiver, one heath care professional at a time. And by revolutionizing and radically improving the long-term care landscape by developing communities where all residents have equal access to care that maximizes independence and function, allowing each resident to age in place with dignity and grace.

This plan of care is called “Relationship Based Care” and is something worth fighting for. This embraces the employee, resident, and family member by focusing the need and desire of all to be involved in the process of aging and the care of the individual. Isn't this be a system you would want to look forward to participating in? I sure do.

Remember, one person, one patient, and one caregiver, one heath care professional at a time. And believe me, one by one, we are the tip of a huge movement in our country to change what aging is and how it is perceived. Do not be afraid to be a part of this movement. For your loved ones, for your partner, for yourself. We ARE the future. And the future is NOW.


There are many organizations to offer guidance.  After you have read this, take your computer, search best practices in home health care or caring for my aging loved one and look at the list. Start to read.  Education is our best tool and brings the best care available to your fingertips. Always ask for references.  Don't be afraid to ask for names of people organizations or individuals say they have aided.  If you have specific questions, or just need a place to start, just ask me.  I will pass on the wisdom I have gained in helping caregivers and being a caregiver myself.

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How the Past Can Help the Present

10/11/2012

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There is a wonderful video called "Care home turns back the clock on dementia." You can find it at www.bbc.uk and search under "health." I highly suggest seeking it out. It talks about using the past to calm dementia patients in the present. How often have any of us, as caregivers, been frustrated or even frightened by our inability to reach our loved ones when they seem lost in the fog of forgetfulness, of dementia?

In my own experience as a caregiver, it was recalling the past that best engaged my 93 year old mother in articulate conversation   When engaged in conversation about the now, she would ask a question about her current state, such as "Where is the dog? ..." every 2 minutes, even when answered every time. It was not out of spite that she would repeat and repeat these questions, she simply could not retain the information. But when she spoke of her youth, when asked about her job at Lord and Taylor's in NYC when she was in her 20s, she could describe the exact dress she bought with a matching coat and hat when dating my father, and how much he liked that particular ensemble ... and could carry on that conversation in a linear way for MUCH longer than she could remember the answer to "Where is the dog?" ... even when the dog was sitting at her feet! Or, when played a song from the 1930s, could tell you exactly where she was when she first heard that song, and perhaps, how she and her sisters would dance together to the music on Saturday morning, when helping with the housekeeping with her own mother, Mama ...

When ArtsCare ( www.artscareus.org ) visits a facility, we use the arts as a vehicle to engage the elderly in activities that can increase their motor and social skills, or reduce their level of anxiety. Music is a great resource - William Congreve is credited with having said "Music hath charms to soothe a savage beast, to soften rocks, or bend a knotted oak." We need to be credited with USING this blessed tool.

Ask questions about the past and listen.  Play music from the past and watch.  Participate in bring the past alive to someone living with Dementia and Alzheimer's and observe how articulate and lucid they can become.  It is not easy, it doesn't always work, but when it does, there can me more than just moments of shared joy and participation between the generations.

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    Maryellen Kernaghan

    Maryellen has written for many websites concerning healthcare including her own, ArtsCare. She is the recipient of the Best Blog Award in her category.

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Maryellen Kernaghan, Artistic Director
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