In this Edition:

Dementia is Tragic, but Sometimes Also Miraculous
Communicating With Someone Suffering from Dementia


Since this is both National Caregivers’ Month and Alzheimer’s Month, we salute all those who are family caregivers no matter for whom you are caring. Grandparents caring for grandchildren need support as much as adult children who are caring for aging parents need support. Those caring for a spouse, a child or another loved one need to know that they are not alone and that they have the support of family, friends and community in their role as a caregiver. We hope that some of the ideas, suggestions and tips in this month’s newsletter will help you in your caregiving journey and enable you to feel some connection to others during this season of Thanksgiving.

Dementia is Tragic, but Sometimes Also Miraculous
by Rona S. Bartelstone, LCSW, BCD, CMC, C-ASWCM

As my mother’s dementia becomes more apparent, a miracle is happening! 

It is sad to watch my smart mother become less capable of managing her own life and more confused about things that used to be automatic.  Each time there is a major decline in her ability to function or express herself, I feel a sickness in my stomach and I sometimes want to cry for the part of her that is lost.

On the other hand, there is a transformation occurring that is simply remarkable.  My mother, who used to be very reserved and quiet, is now more talkative and open.  For a time, this just felt like she was making up for all the years that my father was the “voice” of the family.  Her stories took the most improbable turns and her ramblings went on and on.  It was hard to pay attention and even show interest. 

Recently, however, there is a new element to her sharing.  My stoic mother is actually sharing her emotions, her feelings, her fears and even her anxieties. 

Now, this new behavior of sharing could feel like a burden.  But remarkably it doesn’t.  Instead it feels like the innocent, honest sharing of someone who is trusting enough to tell me how she is really doing.  This is new and in a way it is delightful.  Now when she tells a story, she doesn’t just tell me about events, but she actually let’s me know how she feels about those events.  I am learning about her inner life in a way that was never accessible before. 

Another thing that is remarkable about this change is that my mother is learning to nurture me back.  I experienced this with my father in the later stages of his struggle with cancer, but it is different with a person with dementia because it seems somehow more natural and not because the person is conscious of coming to the end of life and needing to come to terms. 

In the past, if I dared to tell my mother that I loved her, she would respond with something like, “I could say the same thing.”  Recently, at the end of a phone conversation when I finished with “I love you,” the response back was an emphatic, “well, I adore you!”  It was such a surprise that I giggled and thanked her.  This came from a mother who once signed a greeting card to me with “Fondly, Mom & Dad (Hazel & Herb)” – as if I wouldn’t know who mom and dad were?

Recently, we were at a family wedding and my job was to help my mother get dressed, including helping with her make-up (in addition to the dementia she is partially blind).  She came to my room at the appointed time (her sister sent her), but she didn’t bring her make-up or the top part of her outfit.  In her frustration, she stated that she was “loosing herself.” I took her in my arms and promised that we would always be there to keep her from getting really lost.  She smiled, seemed reassured and was ready to get on with the business of dressing. 

In my mother’s experience of “loosing herself,” she and I are finding a new and more joyful way to find one another in a manner that was impossible in the past.  We are able to speak more honestly about feelings.  My mother has a quicker, more relaxed sense of humor now.  The critical edge and the judgment are gone.  There is more true delight in an event, a joke, a song or a dance. She is more open to hearing from me, as well.  I can be more open with her without fear that she will be critical or dismissive. 

This is a painful and bittersweet process.  I miss the person she was.  I grieve that she has lost intellect, judgment, reason and even the ability to sign her name.  I fret about her shrinking, her hygiene and confusion about medications.  The sweet part is that we have come to an acceptance of one another, as we are…warts and all.  The sweet part is that we can talk and hug and be finally at ease with one another.  There is trust and honesty after 56 years and it finally feels like home.

Tips for caregivers of persons with dementing illnesses:

• Enter their world and accept their reality, even if it is not real.
• Don’t just listen to the words, listen and respond to the feelings behind the words.
• Provide comfort instead of confrontation.
• Work at being less self conscious of behaviors that can be uncomfortable.
• Since everything takes twice as long as it takes, give yourself and your loved one twice as much time to accomplish each task.
• Don’t criticize the person for their losses, instead reassure him/her that things are being taken care of and are under control.
• Accept humor, music, nature as reassuring and familiar ways of connecting with the past and the larger world.
• Leave when you run out of patience.
• Be sure to spend time with people who love you and fill you up instead of just taking from you.
• Express love and gratitude, it helps to get over the hard spots, of which there are way too many.

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Communicating With Someone Suffering from Dementia
by Sandy Dunlap RN, LCSW

• Someone suffering from dementia might be feeling confused, anxious, or depressed and should be spoken to in a tone that is calm and reassuring. Use simple words and speak slowly and distinctly.
• Approach from the front as unexpected touching or approaching from behind may startle or upset the dementia person.
• Address the person by name to get attention and maintain eye contact while speaking.
• Ask one question at a time and allow time for an answer. Repeat the question if it is not understood. If you still do not receive a response, rephrase the question.
• Rushing can increase confusion. Thus allow time for the individual to respond in conversation or activity.
• If the individual repeatedly asks the same question, they do not remember your response. After your third or fourth response to the question, tell her/him that you will help, everything is fine, or in some way provide reassurance.
• When talking to the person, eliminate the T.V., radio, or other distractions.
• Avoid negative statements and focus of the positive. Say “Stay inside” not “Don’t go outside”.
• Use humor whenever possible.
• Break down all tasks into simple steps and tell the individual one step at a time what to do. Too many directions and too quickly will increase confusion.

I hope these tips are helpful.  Remember body language, voice tone, facial expressions and other forms of non verbal communication can also provide support with the impaired individual.

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