Are You Sharing the Journey of Someone with Dementia or Alzheimer's?

When your mother doesn’t recognize you any more, how do you handle it—what do you do?  What do you do when your mother wakens you at 2:30 a.m. to let you know that you’re not home yet? 

 

As a part of the disease process, persons with dementia lose their short term memory: they may forget how to use the TV remote, they may prepare a casserole and dump it upside down in the dish drainer and place the empty dish in the refrigerator.

Rather than try to force her memory, you may choose to step into her reality, and just love her and meet her at her point of need.  Persons with dementia lose executive function—the ability to reason and to think logically…so no amount of trying to explain that you’re really right there with her will help her to recognize you.  But, reassuring her that “you” are safe and spending the night with a “friend,” might do the trick—or getting in the car and driving around to go look for “you”— to make sure that “you” are safe.  When my mother frequently awakened me in the middle of the night, and surprised me with concern that I was not yet home—because in her mind, I was still an eight year-old child—I learned to do everything I could to reassure her and comfort her that “I” was o.k.  I’d ask her to get her purse and coat and meet me downstairs—then I’d put a doll with the same colored hair in my bed and plump up the covers to look like a child was sleeping there.  We’d then get in the car and drive around looking for “me.”  When we’d get home, I’d ask her to go to my room to check on “me,” and we’d go up together, whispering, so that we did not wake “me.”  Then I’d hug her, thank her for caring about “me,” reassure her, then tuck her back in for the rest of the night.
Though it was painful to know that she did not recognize me as the adult that I was, it was comforting to me that I could meet her at her point of need, step into her reality, and reassure her that her child was safe, at home, where she was loved by her mother—and that I was there to see that my mother who had always loved and cared for me—was safe in my arms, and in the arms of God.

The Alzheimer’s Association has a 24/7 Helpline is available to assist you if you are sharing the journey of a loved one with dementia—you can call to seek advice or guidance for handling a difficult behavior; just call for a friendly, caring voice to listen; or call to ask for help with resources—such as in-home care, adult day care, long-term care options, or getting a definitive diagnosis so that you know what type of dementia you are dealing with and what the progression of the disease will bring.  

Marietta FUMC has Stephen Ministers available to walk with you one-on-one to share Christ’s love with you as you make the difficult journey.

 

As we age, we all face the loss of independence and one of the key rites of passage and key indicators of independence for us is driving.  When a family member ages, his reaction time slows—both physically and mentally.  Some of us perhaps should not have been driving in our fifties, while others of us can safely drive into our eighties.  Most of us know we have limitations, but most of us also do not wish to give up the independence represented by driving—and when others begin to tell us we might be having problems, we don’t want to hear it—we often deny that we have an issue—even though we might recognize that we don’t seem to have the control that we used to.  

When a person is first diagnosed with dementia or Alzheimer’s, they may still be able to drive for a while…but, as the disease progresses, they will begin to lose executive function—the ability to think clearly, reason, and make sound decisions.  Their fine motor skills will deteriorate, and their vision will change.  Each person is different so that no two people progress through the disease the same, so the point at which they can no longer drive is not the same.  

At some point in the disease process, the person will no longer be able to maintain their lane, recognize the difference between the accelerator pedal and the brake pedal, understand the importance of slowing and stopping at a red traffic light or a stop sign.  They may get in the car and forget where there are going—they were just going two blocks to the drug store, they may end up on at a Burger King in Alabama, or on the side of I-20 in rural Georgia, having run out of gas, and not realizing where they are or how to get help.  They may even hit the accelerator and run into the corner of a home in the neighborhood, or cause an accident in which someone may be critically injured.

Hopefully, the family is aware of the dementia, and can help to monitor the driving habits and understand when the time has come to have “the conversation.”  But, how do you tell an adult who helped to raise you, helped to teach you to drive, and bought you your first car that they can no longer drive?  It’s hard.  It’s heart-breaking…but it must be done…for their own safety and that of other drivers on the road.

This issue is one of the most difficult families face.  However, there are some resources to help you to prepare for that conversation and that action.  The Hartford Insurance Company has an excellent resource, a booklet entitled:  We Need to Talk…Family Conversations with Older Drivers.  If you and your family are coping with dementia or Alzheimer’s they also have an excellent resource booklet titled:  At the Crossroads:  Family Conversations about Alzheimer’s Disease, Dementia, and Driving. Click here for resources about driving. 

There are seven driving evaluation/assessment centers across Georgia where an individual can go to be tested by a specially trained occupational therapist to determine if their skills are still appropriate for safe driving.  Families, who know that a family member is impaired, but still allow them to drive, may have liability in case of an accident.    To learn more about driving issues—when is the right time to take the keys, how to take the keys—you may also contact the Alzheimer’s Association at their 24/7 toll-free Helpline:  (800) 272-3900.

How do I know what resources are available to help me care for my family member with dementia or Alzheimer’s?  Should I try to care for her home?  What other long-term resources are available?  How will I know when the time comes to consider long-term care?

When Mom first began having memory problems, she laughed it off as just normal aging.  I chose not to look closer.  Then, the mail kept disappearing; I found odd things in the refrigerator; my clothes kept disappearing; she kept asking the same questions over and over, just a few minutes apart, and she began wearing the same clothes for more than one day at a time.  I could not even get her to go to the doctor to get a diagnosis…she knew something was wrong, but she kept telling me that it was me just trying to make her think she was crazy.  She’d sit and hold her head in her hands, rocking back and forth, saying “Please God, don’t let me be like my Momma.”

It was SO heart wrenching watching her go through this.  She looked like my mother, but did not act like her—except in fleeting moments where she seemed perfectly fine.

I finally called the doctor and told him what was happening, and that I wanted to bring her in for a visit for me—that he could start talking to me as if it were my appointment, then ask he her how she was doing—and begin making the appointment about her.  I told her that I wasn’t feeling well and wanted to go to the doctor, but was afraid I wouldn’t remember what he told me, so asked her to go in with me to see him, so he could talk to her about me.  She agreed…but when we got to the doctor’s she did not want to go in, but sit in the lobby as she always did when I went in to see the doctor for myself.  I asked her again to go—and she did.
After the appointment, I called him from work, and he told me it was “just the dementia” as he’d known for some time.  I asked him if he’d known it for some time, why hadn’t he told us—and he told me that he thought we knew.  I asked for a prognosis—and he told me that one day she’d go to the mailbox to get the mail and forget how to get back home—our mailbox was less than 30’ in front of our house.

But that’s exactly what she did some six months later—while I was at work, she went to the mailbox and a neighbor two doors up threw up his hand and waved, and she went up for a visit—then could not remember where she was or how to get home.  She’d been asking me to take her “home,” although she’d lived with me for over eighteen years.  I’d get home from work, and she’d be sitting on the door step with a paper bag—filled with an old newspaper, an apple, a pair of underwear, and some books—and tell me that we were going “home.”

I’d had to hospitalize her.  Her family doctor had added a medication—and within three days she was drooling and needed a wheelchair.  The doctor had suggested that he needed to insert a feeding tube—and if she pulled it out, to just let her go.  I refused, because I believed that she would resume her appetite.  I believed that the medication dosage was too high, and that lowering the dosage would resolve the issue.  The doctor did not want to hear this, so he told me that if I was not going to follow what he was suggesting, there was nothing left but to send her home.  When she got out of bed into the wheelchair for me to take her home, she had violent nausea.  The nurse took one look at me, asked me what the doctor and I had discussed, and immediately went to call the doctor.  He readmitted her, decreased the dosage of the new medication, and by noon the next day, she was released to go home.  Within three days, she was walking, no longer drooling, and almost back to her normal routine.

She improved steadily…and then, about six months later, she was fine one day—we were laughing and talking and doing our normal routine… and the next day she was curled into a fetal position, refusing to eat, and not speaking coherently.  I called non-emergency transport to take her to the hospital where she was admitted for a urinary tract infection and mild pneumonia.  The doctor treated her, and sent the social worker in to talk with me about placement in a nursing home.  Shortly after my Dad died, my mother had asked me never to put her in a nursing home, and I assured her I would not.  

The doctor told me the next day, that if I did not put her in a nursing home, I was going to end up in a hospital bed next to her, from being so run down caring for her.

I went home, cried, prayed, and called the social worker for a list of nursing homes.  She had already found an available bed in a nearby nursing home, and asked that I stop by to visit the facility, since they planned to release Mom the next day.  I did visit the facility…and it looked like a really nice place, so I placed Mom there for rehabilitation…thinking that I could bring her home within a few months.

After talking with her doctor, the staff at the nursing home and watching her improve—but not improve as I’d expected her to, I chose not to bring her home.  After all, I’d missed a urinary tract infection and early pneumonia that had almost killed her, and felt SO guilty.  So, I did what I’d often done when a crisis with her disease arose…I called the Alzheimer’s Association Helpline.

Throughout the journey, I had periodically called the Alzheimer’s Association Helpline, had taken some of their classes, had read every pamphlet and book they recommended, and gone online to research more about the disease.

There are many different types of dementia—with Alzheimer’s being the most common and vascular dementia being the second most common.  All dementia is debilitating.  Almost all dementia is progressive and irreversible.  Some dementia—caused by infections like urinary tract infection or pneumonia is reversible with treatment—but most is not.  

I now work for the Alzheimer’s Association, as the Advocacy Manager and one of the Helpline Counselors—trying to assist families to learn more about the disease, how to help their family member, and to help them as they take the journey with the disease.  Because, you see, this journey doesn’t just impact the person with the disease—it impacts the entire family.  

If you think that someone in your family has dementia, seek information and help…you do not have to walk this journey alone.  There is so much information available, so many resources available to help you.

You can care for family members at home with in-home care; they can attend an adult day program to give you and them a break from the 24/7 supervised care that is required; there are personal care homes/assisted living facilities for those who do not need skilled nursing care; and there are nursing homes for those who do need skilled care—whose care needs have progressed beyond that which a personal care home/assisted living facility can provide.

 

There are many resources out there to assist you—whatever your need.  You may wish to start by calling the Alzheimer’s Association confidential 24/7 toll-free Helpline:  (800) 272-3900; or visit their website at www.alz.org/georgia.  Or, you may wish to e-mail them a question on their Helpline Online at info@alz.org.  
The Alzheimer’s Association does not just serve those with Alzheimer’s—it serves anyone with any kind of dementia, or anyone caring for anyone with any kind of dementia.

Marietta First United Methodist Church can also help—you may find the care of a Stephen Minister helpful as you continue your journey with your family member with dementia.  Our Stephen Ministers will walk with you, listen to you, encourage you, pray with you and provide confidential one-to-one care to help you through tough times.  To learn more about having a Stephen Minister, contact Elaine Wilder at (770) 429-7800, ext. 7826.