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 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
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.
ReplyDeleteThat'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.
ReplyDeleteThank 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.
DeleteMy 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
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.
DeleteLike 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
I sometimes have trouble taking care of myself and I'm only 63. (on disability) How do you do it?
ReplyDeleteThe 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
ReplyDeleteThis 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.
ReplyDeleteGod bless you Lois. Believe me, you won't regret a minute of this loving care.
ReplyDeleteThank 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.
ReplyDeleteAs 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..........
ReplyDeleteMy 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.
ReplyDeleteLovely post.
I Still Can't Email You , So I Will Leave It Here If I May !!
ReplyDeleteI 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