Is it Time to Move?

“No, I don’t want to go to the Big House.  You can’t make me.  Only a doctor can…,” Mom said fearfully.  Although her behaviors and daily living skills had changed significantly in recent months, she was not ready to make the decision on her own to move from independent living into any of the several long term care options in her senior community.  However, as deeply in denial of how serious her situation had become, she would never be ready; and so, the decision to move her rested with my sister and me.   

While Mom’s idea of moving into a higher level of care was to become a resident of the much-dreaded Big House, there were actually several different “houses” that she could transfer into, and this fact that had been one of the motivating reasons for her to move to an independent cottage at Waverly Place some years before.   As it gradually became evident that Mom was one of the approximately 16%* of the residents who would develop Alzheimer’s, living alone was no longer safely possible for her.

Being the fiercely independent and strong widow determined to make it on her own, Mom resisted any suggestion that she was terribly forgetful and confused.  The evidence against her safely living on her own, however, began to mount up until her doctor finally issued the order that she should have assistance at least a few hours a day.  By the time the order came, Mom needed help taking her meds four times a day and remembering to pay the bills on time.  She had difficulty working the garage door opener – which also meant safely driving the car out of the garage, and could not resist the drugs offered to her by the next door neighbor. 

My sister, fully believing in Mom’s right to autonomy for as long as possible, hired a home health aide to assist her a few times a week for a couple of hours at a time.  Initially, Mom and the aide spent most of the time just sitting and talking as Mom steadfastly refused to allow the aide to help her.  Mother welcomed the companionship, but pushed aside any offers of assistance with daily living.   

The first few months with this part time arrangement resulted in Mom continuing to mismanage her medications; forgetting how to operate the garage door, the television and the oven; and imbibing in an afternoon glass of wine with the drug-supplying neighbor next door – in spite of the fact that Mom was a diehard teetotaller.  She forgot to eat and stopped going to the beauty salon, two things she loved almost as much as her grandchildren.

“It’s time for Mom to move into the dementia unit,” I begged - to which my sister invariably screamed back, “No, it isn’t time!  It’s too soon.”

We struggled back and forth over the question, “When is it time to move her?” After several more months of changes in Mom’s abilities and memories, Sister gave in and hired the aide service fulltime. The aides cleaned out the molded food in the refrigerator and began cooking for her since she had lost the knowledge and the desire to cook for herself.  They retrieved bills from the trash and forwarded them to my sister for payment and quietly discarded the many catalogs from which she placed numerous orders for greeting cards she never sent and more socks than she could ever wear.  The aides helped her bathe, until it became a fruitless battle to try and coax her into the shower.  They walked beside her down the sidewalk to the mailboxes to be sure that she did not get lost on the way back home. 

The doctor’s appointments piled up, and when Mom could no longer read the calendar and routinely missed appointments or sat in the wrong doctor’s office for hours before realizing she did not know where she was, the aides tried to work around the HIPPA restrictions to make appointments for her and accompany her into the exam rooms.  They did not have legal authority to speak on her behalf and her medical care became a source of much confusion and frustration.  

“Now, it is surely time to move Mom,” I thought.  That’s as far as the words went – just a whisper.  My sister was still no more ready than Mom to make a change in her care and living arrangements.

Soon thereafter, Mom entered the belligerent and angry stage, fraught with extreme paranoia and psychoses, and eventually turned on the healthcare aides.  She bit them, hurled verbal abuses towards them, locked them out of the house, and called the police to come rescue her.  Even the most kindhearted of the team of women who cared for her around the clock found the new behaviors taxing; and my sister could not help but notice that their enthusiasm and dedication was beginning to wane.

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*According to statistics published by the Alzheimer’s Association, one in six adults between 65 and 85 has Alzheimer’s.  For the age group over 85, it is estimated that 50% have Alzheimer’s.  Providing appropriate care plans and living environments for these seniors is in the forefront of many organizations’ and legislators’ agendas.  Although there is an accelerated funding effort to find a cure, the fact remains that family caregivers are still on the field of battle on a daily, if not hourly, basis to meet the complex needs of the Alzheimer’s individual.       

As evidenced by the story of my sister and me trying to agree on the appropriate timing of moving our mother into an increased care arrangement, such decisions are fraught with anxiety.  Although we were long distance caregivers and the aides took the brunt of the daily responsibilities, it is ultimately a family’s duty to be ever mindful of the changing needs of an Alzheimer’s elder and to be prepared to respond when difficult behaviors, safety issues, medical needs or finances require an adjustment in living and care arrangements.

(For more information on when to move an Alzheimer’s patient, CLICK HERE, or read the side bar to the right.)           

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“A Bandaid for the Caregiver” is dedicated to all those families who journey with memory loss in their lives and the sharing of hope and joy and new possibilities.  In each difficult moment there lies an opportunity for love.

Journey with courage,
Elaine  

Author of  "Conversations with Nora: a Family's Journal with Alzheimer's"

THE BANDAID BOX… 

Making life-changing decisions for your parent is an act of devotion and love.  None of us wants to commit Mom or Dad to an Alzheimer’s unit or a nursing home, but trusting them to the care of others could be in their best interest.  Not a decision to bear lightly or without great forethought, rely on God’s presence as you take this next step together.

“Be strong and courageous, do not be terrified, do not be discouraged, for the Lord your God will be with you wherever you go.”  Joshua 1:9

“Never look down to test the ground before taking your next step; only he who keeps his eye fixed on the far horizon will find the right road.”  Dag Hammarskjold (1905 – 1961)

STAYING VIGILENT…

Changes in Dad’s emotional, mental, and physical needs can literally change overnight.  By staying ahead of the learning curve and arming yourself with information about the stages of the disease, you can be prepared to respond quickly and appropriately to his needs.  The response may mean making adjustments in the safety of his environment, knowing how to calm him when he loses emotional control, or modifying how his finances are handled as he loses the ability to keep a checkbook.  Anticipate what he may require in coming months and make plans to move into the next care level when you feel unable to meet his changing requirements.  Remember that he will not be able to tell you when it is time to move and may resist your intentions to provide the best care possible when it means leaving his home for a strange place with new routines. 

CARING FOR YOURSELF…

As family caregivers, we are more likely to experience fatigue, both physically and emotionally, than our co-workers who do not have a loved one at home with Alzheimer’s.  According to an article in US News and World Report Caregivers spend an average of 70 to 100 hours a week caring for their parents or spouses.  This can lead to increased medical expenses for themselves, including the treatment of depression.

If you feel over burdened with the care of Mom, make an appointment with a counselor – a pastor, a family therapist, social worker, or other professional.  You may find great benefit in regular counseling sessions and in participation in support groups for caregivers. 

Gentle Reminder:

In deciding to seek care for yourself, you have made the choice to feel better and to improve the lives of yourself and your mother.

IN THE NEWS…

How Alzheimer’s Will Change Your Workplace    http://www.usnews.com/news/articles/2013/03/14/how-alzheimers-will-change-your-workplace

Managing Alzheimer’s Disease  http://health.usnews.com/health-conditions/brain-health/alzheimers-disease/managing

SAFETY TIPS…

As her Alzheimer’s progresses, her safety – emotional, physical, and financial - is one of the most prevalent issues to consider in caring for Mom.  Questions to ask include:

Does she wander away from home?  Is she inclined to become lost?  Does she have access to dangerous chemicals or toxins?  Can she administer her own medications as prescribed?  Is it still safe for her to operate appliances and tools?  Does she recognize a scam?  Is she in relationships with individuals who might take advantage of her?  Are her finances in danger of mismanagement?

After answering each of these questions, make a plan to alleviate the concerns, whether it means taking over her financial affairs or taking over administration of her medications.  Some of the adjustments necessitated in a positive answer may mean moving her into an environment where she will receive increased care and attention.

(Explore more on the topic of knowing when it is time to make the move to a care facility.  http://www.mayoclinic.com/health/alzheimers-disease-blog/MY00661)

ABOUT ALZHEIMER’S…  

This disease moves at its own pace.  Each person is individual in how quickly they move through a stage or whether they linger in stage for many years.  Knowing what symptoms in the various stages necessitate a move into a higher level of care can be difficult to determine.  No two caregivers and their loved one will have identical paths. 

While you may feel quite comfortable dealing with Dad’s angry outbursts and strange behaviors, your friend who cares for his elderly parent, may find acting out beyond his capabilities as a caregiver.  Your friend may choose to move his father into a care facility which can give his father the nurturing environment which he cannot.

When Mom’s physical abilities decline to the point that she is bedridden the majority of the time, a family caregiver herself may not feel physically strong enough to meet the demands of getting Mom out of bed, to the toilet, showered, dressed, and back to bed.  Moving her into a nursing home might provide her mother with the professional nursing care that she could not receive at home.

Financial considerations may play a part in your decision to make a change in where Dad lives and how he is cared for.  The cost of medical care for a family caregiver may outweigh the benefits of keeping dad at home.  It may also be that hiring around-the-clock aides is more expensive than a residential dementia facility. 

Alzheimer’s affects every dimension of an individual and their families – physically, emotionally, and financially.  As needs change, a family must ask themselves where Mom and Dad would receive the best care given their journey at that point.  The pace and intensity of the journey is ever changing.  The perfect solution may only be perfect for a few months before another change occurs.  The family that remains up-to-date with their knowledge of the disease, is flexible and able to make quick responses to their parent’s new realities, and is focused on what is best for the parent as well as the caregiver, will be able to provide a safe and nurturing home for their loved one.               

(For more information on how to choose an appropriate care facility, visit the Alzheimer’s Care Center.  http://www.alz.org/care/alzheimers-dementia-residential-facilities.asp)