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susieandmedays

Dementia, with Alzheimer’s being its most common form, is the one disease everyone fears. It is an illness that is ravaging the senior population and places an enormous burden on our present and future generations. It exacts a terrible toll on everyone involved.

As our life spans grow longer and diagnoses of occurrence increases, no family will be untouched by this dreaded illness. While many people are aware of the devastating negative physical, emotional, and psychological ramifications that dementia brings, Susie and Me Days brings to light another dimension of this disease—a more positive one.

Most people don’t think of joy when they hear the word Alzheimer’s. I didn’t either. How can anyone find joy within a progressive degenerative neurological disease that robs people of the very essence of who they are? After I was entrenched in the drama of this tragic disease I began to think differently. If we as caregivers have the capacity to let go of any negative thinking about what once was, or what could have been, in order to embrace what is happening right now “in the moment”, we can approach this disease in a whole new light. When I learned to enter my Dad’s world and stop dragging him into mine, our time together became much more meaningful and rewarding for both of us.

I take the reader from the heart-stopping diagnosis through the uncomfortable realities and consequences of the disease, to end-of-life choices. My book is both an account of my personal journey and the distilled wisdom gained as I accompanied my father through vascular dementia and Alzheimer’s, all the while emphasizing the unexpected gifts we shared along the way.

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Prologue

Among my most cherished childhood memories are my Saturday walks with Dad. I always looked forward to Saturday and my own special ritual with my father. For me, nothing seemed as special as our leisurely strolls down Liberty Heights Avenue to the playground at Howard Park School #218. We always took the same route. We passed the Gywnn and Ambassador Theaters, the Ben Franklin 5 & 10, Read’s Drugstore, and Toots Barger’s Duckpin Bowling Alley. We passed Betty Lou’s Dance Studio where I took ballet and the Union Trust Bank where I had my Hopalong Cassidy savings account. How I loved pausing to look in the shop windows and watching people as they got on and off the streetcars. I can almost hear the clang of the bell, see the sparks on the wires above, and feel the “payment” (Baltimore slang for pavement) vibrating under my feet as the streetcars passed by.

We would walk hand in hand, my tiny, pink-nailed fingers wrapped around his long, hairy ones. My little legs tried to keep up with his quick, long energetic strides. My neck strained to look up at his handsome face and his thick, black pompadour as he told me tales from his childhood on North Oliver Street and Belle Avenue, and of his growing up with my grandparents, aunts and uncles. He told of boyhood antics and adolescent dreams, of working at Hutzler’s Department Store, of hard times during the Depression, and tragic ones from World War II. He was the master storyteller with a seemingly limitless memory for anecdotes, stories, and jokes. He talked to me. He made me laugh. He listened to me. He made me feel special. He swung me higher than my mother would have ever approved. What wonderful times they were! I hated for the day to end. Yet, I knew we would end our outing by stopping by Silber’s Bakery for a free chocolate-top cookie. Life was good. Life was sweet.

Fifty years have passed. We don’t leave from the same house anymore. I pick him up now. He no longer drives. Our special day has also changed; it’s no longer a Saturday. I call several times to remind him of our next “Susie and Me Day.” I have to talk much louder. A great deal has changed, but we still enjoy our walks.

Warm weather takes us to parks, to the Inner Harbor, to Fells Point, and to Canton. The cold weather limits our excursions to shopping malls. Dad loves to visit the play area at the malls, content to just sit and watch the children, delighting in their endless energy and uninhibited behavior. I often take his hand to give added support. I wrap my hand around his swollen, arthritic-bent fingers, between his permanently crippled, L-shaped thumb. Our pace is slower; he walks slightly bent over. He seems more fragile. We stop more often to rest. I look down to talk to him now. His snow white hair is brittle and thinning. His sweet, gentle face is aged and wrinkled. He still tells me stories about his childhood, about my childhood, and the times with his fraternity and war buddies. He recalls and retraces past moments with astonishing clarity. I listen to his stories over and over, as if they are new. His repetition challenges my patience. He gets a little agitated when his short-term memory fails and the reality of aging surfaces. Sometimes I fill in the blanks. He still listens intently, wanting to know about me and his grandsons. He has a joke for everything. He still makes me laugh, and I’m still Daddy’s little girl. Our walks are still wonderful, just very different. Now it’s Dad who wants the cookie.

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Chapter One

Several more years passed. I gave Dad the date of our next “Susie and Me Day” on large day-glow yellow paper. He put it on top of his huge calendar on his untidy desk as a reminder. I knew he would still call, often several times a day, to find out when our next day together was scheduled. That was all right, but sometimes I cringed when I saw his number come up on our caller ID.

I took the elevator up to Dad and Shirley’s condo. Dad no longer met me downstairs. It was better that way, because some days his balance wasn’t good, and his sense of time was somewhat diminished. One time Shirley, my stepmom, received a call from the night doorman telling her that Dad was downstairs in the lobby. It was 4:00 A.M. He was waiting for me to pick him up for “Susie and Me Day.” He didn’t want to be late.

Before we left, he asked me to pay some bills for him. I kept his checkbooks with me because he continuously misplaced them and got things confused. He was ready for me that day, with his red folder we made together marked “Bills to Pay.” I wrote the checks for him and he signed them hesitatingly. His signature was often shaky, unevenly formed, and spaced. We went over each check several times. He continuously asked about the check that was just completed. He asked me repeatedly if we had included his account number on the check. I tried to reassure him. I heard my voice getting louder. I took a deep breath and softened my tone. I looked away for a moment and noticed he had taken the check out of the envelope. I took another deep breath. An hour and a half had passed, since I came over. We had written three checks and they were ready for mailing. Finally, we could begin our day…

Chapter Two

The light on the kitchen phone was flashing red. I dialed the number to retrieve my messages. The first one was a reminder about my dentist appointment on Monday. The second was to call my cousin Carole back. The third began with incoherent meanderings. I strained to hear and understand. I realized it was my dad. He was upset and crying.
In a desperate voice he pleaded, “Susie, please call me as soon as you get in! I think something has happened to Shirley! I can’t find her anywhere! I’ve looked all over! She’s not here!”

Sobbing, he cried, “I’m really worried! I don’t know what to do! Please, please call me!”
The next message was Dad again, rambling, panic-stricken, repeating the same scenario that he’d left before. I took a deep breath, and dialed his number. The line was busy. I waited a few minutes and tried again—another busy signal. Dad probably hadn’t hung up the phone properly.

This happened often lately. Despite my efforts to help him by putting red and blue circles on both the handset and the base so he could place the phone back on its cradle by matching the colors, he still had difficulty. He usually didn’t hear the loud, annoying, raucous signal that the telephone company puts on the line to indicate the phone was left off the hook.
I waited ten minutes and called back. To my relief, it rang. Eight rings. Fifteen rings. Still no answer. Now I had two missing people to look for!

I grabbed my keys and then decided to call the desk at their condo building. Identifying myself, I asked Lynn if anyone had seen my father or Shirley. She replied, “Your father was in the lobby earlier, very distraught, looking for Shirley. He wanted to go outside to look for her, but the doorman and I convinced him to go back to his condo in case she calls.”
“Thanks so much, Lynn, for your help and understanding,” I said. “Please thank Lenny for me also.”

Praying that Dad would find his way back to their unit, I tried his number once again. Dad usually remembered he lived on the seventh floor and the fact that when the elevator opened, the hall carpeting should be blue. I was so glad that this was an older building and the hallway carpeting on each floor was a different color. Seven rings. I was getting a bit nervous. Finally, Dad answered.

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Reviews

Susie and Me Days beautifully recounts a story of love and pathos, one that reverberates in the deepest centers of human emotion as the reader vicariously lives this gripping saga of a journey through the ever-darkening forest of Alzheimer’s disease, a journey relevant to the life of every American as the world faces the reality of the demographics of aging…
Alva S. Baker, MD
Former Director
The Copper Ridge Institute

Susie and Me Days is an authentic, honest, moving portrayal of the journey the author took with her father as he lived with dementia. The book provides facts and practical information, along with heartfelt reactions and responses to what was happening with the family throughout the ordeal. It offers hope for continued connections and engagement with the person with dementia by using what remains, by going to where the person is, and by sharing time, attention, and love. Susie and Me Days is truly a great read, but it’s also an impressive guide to others dealing with the illness.
Teepa Snow MS, ORT/L, FAOTA
Dementia Care Training Specialist

In Susie and Me Days, Susan Garbett has captured the joy and satisfaction of providing care to a loved one with dementia. Her book distills what I have heard from hundreds of caregivers in my thirty years as a geriatrician and gives a loving and accurate portrait of her father. She provides insight into the vagaries of caring for a person with dementia from the perspective of someone who has experienced the full range of human emotions ‘in the trenches’. This book is an invaluable addition to the literature chronicling the progress of memory loss and there is no doubt that many caregivers will gain strength and comfort from the author’s hard-won wisdom.
Nancy Jane C. Friedley, MD, CMD
Former Chief of Geriatrics
Good Samaritan Hospital/MedStar Health

Written as seen and experienced through the eyes of Susan Garbett, who cared for her father diagnosed with both Alzheimer’s and vascular dementia, her story takes you from the earliest signs through the full journey, complete with the pitfalls, obstacles, stresses, challenges, joys and upsets that any caregiver can expect and should anticipate. Learn from her experiences and gain insight from the solutions. Listen for the questions you need to ask, and appreciate your family member for who they still are. Susie and Me Days is as much a personal story of love, tradition and honor as it is a textbook and guide for all caregivers.
The Alzheimer’s Store

Susan so clearly and concisely captures what so many families experience when dealing with a loved one’s diagnosis – the questions, the losses and grief, the obstacles faced in navigating the medical community, the internal familial challenges, and finally, creating new special memories. Her book is written with such an extraordinary amount of passion and detail that the reader will feel as if they are living the moments personally.
Marcie Koenig
Director of Copper Ridge

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Tips

A Parent's Wish--For My Children

A touching and poignant slideshow presentation about a Parent’s Wish for their children during their old age.

For Caregivers

Being the caregiver for a person with dementia or Alzheimer’s disease is a tough, challenging job. Your loved one’s ability to function or cope may change from day to day, even hour to hour, as the disease progresses. Try to remember that people with dementia are doing the best that they can, and whatever is happening to them is hidden inside their brain.

    • Learn to appreciate all you do as a caregiver.
    • Make staying healthy and taking care of yourself a priority.
    • Maintain your identity and your social contacts.
    • Take a proactive role with your caregiving by staying informed. Knowledge is key.
    • Plan ahead when taking the person to a doctor. Since it is often difficult to speak candidly to the doctor in front of your loved one, consider faxing: a list of symptoms and when they began;  a brief summary of changes you have noticed since your last appointment; and any new information you feel the doctor should know prior to your scheduled visit.
    • Prepare a list of questions for your doctor prior to each appointment. Bring a current list of all medications, including herbal and dietary supplements, taken by your loved one.
    • Maintain a medication log on all the meds currently being taken. Keep track of any side effects you notice and if the medication was stopped. Periodically update the log.
    • Pace yourself and define your priorities. Don’t try to accomplish too much at one time.
    • Plan ahead and establish routines to help make the day more predictable and less confusing.Use a calm, gentle, and reassuring voice. Choose simple words and short sentences, without patronizing the person.
    • Practice patience. Avoid correcting and arguing.
    • Try not to take hurtful or upsetting comments personally. Use your creativity, imagination, and flexibility. If something can’t be done one way, try another.
    • If possible, limit daytime napping. Encourage exercise during the day. Try to keep the person engaged in an activity he/she enjoys.
    • Understand the family dynamics with which you are dealing. Have ongoing family conferences in person, by phone, or email to keep other family members informed and involved with the status of the person and what difficulties you may be having as their caregiver.
    • Ask for help. Don’t try to go it alone, and don’t be ashamed to share your true feelings.
    • Use humor to get through the difficult times. Laughter is a great stress reliever.
    • Use the community resources in your area. Join a support group to share experiences and brainstorm with other caregivers who are going through similar situations.
    • Consider consulting a good elder law attorney who is knowledgeable with health care issues and benefits in your state, and can advise you on matters concerning long–term care insurance, Medicare, Medicaid, Veterans Administration benefits, estate planning, and guardianship: create a durable power of attorney verifies and gives you the authority to make sound financial decisions for the person when he/she becomes legally incapacitated; and prepare an advance medical directive, which usually names a health-care agent who can make decisions for the person if they are not capable.
    • Have a contingency plan prepared if the person becomes aggressive or violent and you are unable to handle him/her. Know who to call for help and what steps you might have to take to protect yourself.
    • Plan for the “what if” scenarios that may arise. What if I get sick? What if I’m no longer able to care for my loved one?
    • Update all pertinent information concerning the person. It should readily accessible for anyone called upon to take over your responsibilities as caregiver.
    • When all else fails and you are at your wits end—smile and sing. How can
      anything be wrong when someone is singing!

Learn about other Tips for Caregivers in
Susie and Me Days: Joy in the Shadow of Dementia

Advice For Visiting People With Dementia

Visiting a person who has any severe memory impairment, whether in their home or at an assisted-living or nursing home, may not always be an easy or pleasant experience. However, it can be a most rewarding one if you plan ahead and remember that it’s the personal connection that is most important. The person may not always remember you or anything about your visit, but they will realize that you cared enough to share some time with them. It’s the warm feeling you leave them with that brings the person real pleasure and makes the visit worthwhile.

  • Check with the family or the facility to find out the best time to visit and how long a visit they think the person can handle.
  • Be prepared. Realize that the person you are visiting may have changed physically, regressed intellectually and emotionally.
  • Understand that cognitive impairment may cause them to repeat things or ask you the same questions over and over. Likewise, the person may say things that you know are incorrect. Try to let it pass. Remember, be kind instead of right.
  • Let the person you are visiting set the pace. Be patient and adaptable to their wants and needs.
  • Learn to be an engager and initiator. Frequently people suffering with dementia cannot start a conversation, task, or activity, but, once engaged, can respond to you or to your cues if you begin first and guide them.
  • Speak with a calm reassuring voice. Preserve the person’s dignity and avoid talking to them as if he or she is a child.
  • Avoid confrontation by redirecting their attention or conversation to something else if they seem agitated or become upset.
  • Call the person by name to get their attention and try to establish eye contact with them. Look them in the face. Speak directly to them. Let them see your smile.
  • Don’t be upset if the person doesn’t recognize you, or if they seem confused about who you are initially, or anytime during your visit. Make light of it and just introduce yourself by your first name. What is important to the person is your presence; that you cared enough to spend some time with them.
  • Remember that you are the architect of this visit, so plan ahead. Bring props or anything that you can use as “starter” topics for conversation or to engage them. Be creative, but realize with all your good intentions and planning, the person may not be interested in anything that you brought or do on that particular day. Take your cues from them and try not to get discouraged.
  • Be a patient and attentive listener even if what is being said by the person is unintelligible. A smile, a nod, or a “yes” lets the person know you are hearing what they are trying to get across and that what they are saying is important to you.
  • Recognize that sometimes a smile, a gentle touch, or thoughtful silence is the best communication and lets the person know they are valued, precious, and loved.
  • Remember, your visit can truly make a difference. Make it a positive one.

Find other Advice for Visiting in
Susie and Me Days: Joy in the Shadow of Dementia

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Resources

Alz.orgAlzheimer’s Association800-272-3900
Alzcast.orgCopper Ridge Institute410-795-8808
Alzstore.comThe Alzheimer's Store800-752-3238
Fda.gov/cderCenter for Drug Evaluation and Research800-752-3238
Cms.govCenters for Medicare and Medicaid800-463-6332
Eldercare.govEldercare Locator887-267-2323
NCOA.orgNational Council on Aging800-677-1116
Thefamilycaregiver.orgNational Family Caregivers Association202-479-1200
Nia.nih.govNational Institute on Aging800-896-3650
Nia.nih.gov/alzheimersAlzheimer’s Disease & Referral Center (ADEAR)800-222-4225
Va.govU.S. Department of Veterans Affairs (VA)800-438-4380
Caregiver.com
Clinicaltrials.gov
Enhancedmoments.com
Fullcirclecare.org
Teepasnow.com

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