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If you're new to this blog and want some context for it, read this post from the day I announced my Alzheimer's disease and this post about the day I announced I had lost it. For more info, visit my website with my autobiography and all blog entries in chronological order for easier reading to catch up. There's also a sermon on the spiritual lessons I've learned through this journey through my damaged mind.

Thursday, October 03, 2013

Guest Post: The Journey of Caregiving

Kalispell MT

During the 1980s, Lois Wagner was my boss and colleague at Community of Hope Health Services, a small inner-city clinic that she had founded.  In 1990, she joined us at Joseph's House living with and caring for homeless men with AIDS.  We have remained close friends even as she moved to San Diego to become a professor of nursing at Point Loma University and then retired to Kalispell, MT where she has lived with and cared for her mother who has Alzheimer’s.


MOVING FROM COMPANION TO CAREGIVER


I am a 72-year-old living with and caring for my 95-year-old mother. I am also a nurse by profession and have spent many years caring for and teaching about caring for people at the end of life. As I’ve been reading David’s blog while mother’s cognitive abilities diminish, I have become more reflective on my journey.

I have now been with my mother for six years as companion/caregiver.   We have slowly moved from being primarily companions to my being her caregiver.  However, the caregiving has to be done with some finesse.  It truly is like a dance.  Sometimes I need to move in close and help her a lot and sometimes I need to back off and let her do things herself.  Which means sometimes it seems like I’m stepping on her toes because I moved in too closely and other times I pull away and she almost falls--either literally or figuratively.  The transition from companion to caregiver is not always clear or consistent.  


Not asking questions

The idea of not asking questions as mentioned in Contented Dementia has been a very helpful one for me.  I have found that mom gets very anxious if she is put on the spot with a question even about what to eat.  But if I muse out loud, for example, “I’m thinking about either soup or salad today; can’t quite decide; well, maybe we’ll have soup,” she will often either agree or say she’d rather have the salad.  It’s been really kind of fun to see if I can reduce the number of questions to as few as possible as a means of increasing her sense of well-being and decreasing times of “ill-being.”

Learning to wait and be late

I am learning to wait and to be late.  No matter how much time we plan, it seems that there are always last minute needs that arise and it does not work to try to rush or hurry. In the big scheme of things it’s not so important to always be on time.   

Reducing stress

If I get too busy or stressed, mom reflects that in both cognitive and physical symptoms.  She’s a gauge of my stress level.  

Routine and ritual

We have instituted a couple of daily routines that bookend our days.  In the morning I read out of a little meditation book and she reads corresponding Bible scriptures.  Her Sunday School training is still there and she can even find those obscure books in the Bible and seems quite pleased with herself when she does.  Often she will read a scripture that is a little more abstract and she will grin and say “Whatever that means,” and we will laugh and move on.   In the evening I was finding it difficult to get her to go to bed.  She would say she was going to bed but would just sit there.  So, I stand in front of her and put out my hands and say, “Let me help you get to the bed.”  She looks up at me with a smile and we walk down the hall hand in hand.  I put lotion on her feet and pull the covers up and we look each other in the eyes and say, “I love you.  Sleep well.  See you in the morning.”  I put on her music and leave her to sleep, which she does well.  

I continue to learn about change, acceptance, expectations, frustration, flexibility, silence but most of all about love as we make this journey together.

Lois Wagner

12 comments:

  1. Lois, wonderful post. Loving routine is what I used to call it. I worked as a nurse in a special care unit for quite some time. And it was always wonderful to see a resident sit and sing along with every verse of every hymn in Church, or use my nursing notes as music to play concertos on the piano. They have such wonderful gifts that do stay with them. I've had one lady resident that continually tried to teach us Dutch songs. While I usually tried to teach another resident how to Polka . It was usually quite boisterous at times. But when you know someone so well, its so easy to show loving and caring for your loved one. Your Mom is very lucky to have you there.

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  2. That's love. I hope I can be that way if and when the time comes. I always have fantasies that I am selfless, loving and kind. But then I find myself snapping at my family members for really small issues. The mental image I got when I picture a woman tucking her mother into bed melted my heart. It reminded me of a book my mother used to read to me. I think it's called "I'll Love You Forever" Anyway thank you all for sharing your life experience.

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    Replies
    1. Anonymous10/04/2013

      Thank you for this post, Lois. I am 75 years old, taking care of my husband who is 77. We are married for 54 years now and we are lucky to enjoy a passion for music which is very soothing when he has anxiety.

      My most fervent prayer is for patience with this wonderful man who has not once in 54 years ever been impatient with me.

      This blog is terrific and I am grateful for all of its recommendations.

      Gerry in LA

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    2. Anonymous10/04/2013

      I also enjoy your posts, Lee Ann. Nurses are the backbone of the medical profession and I salute all nurses. I had two operations this past month, so I am recuperating. My son has taken over the care talking here and it has been joyful.

      Like you, I have always looked at the positive side of life, and life has been an amazing experience for me and my family.

      Gerry in LA

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  3. I sometimes have trouble taking care of myself and I'm only 63. (on disability) How do you do it?

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  4. The relationship between the two individuals, whether it is husband/wife or parent/child is truly like a dance. I would recommend to readers an excellent book by Christine Bryden called Dancing with Dementia: My Story of Living Positively with Dementia (2205). It is written from the point of view of the person with memory loss, but it is helpful to both partners

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  5. Anonymous10/04/2013

    This reflective piece provides excellent guideposts. Caregiving for my 65-year-old wife with younger onset AD, I have been learning these type of strategies, which are absolutely on target. It's a practice, this caregiving thing, and techniques like those mentioned here are so important. The emotional and psychological give-and-take is enormous, and that territory has to be navigated with gentleness and patience - the latter in enormous measure. Would I choose this, or would my wife choose this, if given an option? Probably not. But given that we can't change the diagnosis nor the progression of the disease that we've both seen over four years, we know that acceptance has to be with grace and understanding, and we try for both.

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  6. God bless you Lois. Believe me, you won't regret a minute of this loving care.

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  7. Anonymous10/04/2013

    Thank you, Lois for sharing. I too am caring for my mother as well as working full time. Yes, you have to take it as it comes & not get in any hurry that's for sure! I enjoyed reading your post.

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  8. As a Hospice volunteer, many of the people I visit have dementia and I've found that music does bring a smile to their faces and the words to the songs come out clearly.....it's amazing.......but fulfilling to see them react in a positive way..........

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  9. My mom has Alzheimer's and is living in a nursing home now. I learned a long time ago the benefits of good chocolate when wooing Mom to bed, or to the shower, or out of a cranky fit. Good chocolate also has a wonderful effect of the aides... and her roommate, now that I think of it.

    Lovely post.

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  10. I Still Can't Email You , So I Will Leave It Here If I May !!

    I just Wanted To Thank You For Writing Your Journey With Alzheimers !

    My Dad Is In A Later Stage Of Alzheimers , And My Mamma Is Amazing In How She Takes Care Of Him !!

    I Wanted And Did Share An Incredible Experience With Dad With You In Comment Form On The Hiatis Blog , But I decided To Delete It , Cause I Didn't Want To Seem Disrespectful For This Is YOUR Journey. I Was Hoping For Your Perspective , But . . . Anyway If You Would Like To Hear About It , I Can Send It Too You .

    I Always Try To Figure Out What Dad Is Actually Thinking , Cause Others Say They Dont Know What There Thinking Or Unaware .

    I Personally , DON'T Believe That , For Whatever Reason .

    { Really Only The Alzheimers Patient Knows The Experience , In My Mind }

    So I Am THANKFUL For Finding This Out Through , Your Journey !!

    Thank You

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