Unlikely

As I reflect on the journey of Mary and Joseph, it was a small step to feel some familiarity with their journey.  As a caregiver of a spouse with dementia, we are in the early days and yet, the journey is uncomfortable.  Each individual with dementia is just that—an individual with dementia.  No two caregivers will have exactly the same journey.  What we do share is the very real feeling of “why me”. Why us?  We look for our own Elizabeth to confirm that we are able to do this. Like Mary, we have many thoughts that are not shared with others (Luke 1:57-66). We turn to God more frequently with questions.  We listen closely for some solution, some revelation.  (Luke 2:19, 51) As our loved one’s dementia progresses, we have days where we feel we are only one step away from being overtaken.  Herod is on our heels.  (Matt. 2:16).  Like Mary we find ourselves in a situation that is far beyond what we had envisioned for our future.  Riding on a donkey, pregnant.  Our spirit willing, our mind sometimes a blather, and our bodies rebelling to the rough terrain.  As I look at the creche I see an unlikely place for a king to be born.  I see two unlikely parents.  And there is my hope.  Because in the words of my good friend Dody, the main part of that creche is Jesus in the manger.  As unlikely as we are for this particular journey, it is in the dark, unlikely places where our redemption from dementia lies.  It is in the hope of Christ’s birth that my journey becomes a pilgrimage. 

Dealing with Holiday Expectations

As we enter the first month of a two-month holiday cycle, it is important to be realistic with our expectations.  Life as a caregiver of a loved one with dementia has shown you there are needs for adaptation. As your journey begins, you are quickly aware of how things that once were smooth, are no longer. Caregivers who are resilient find ways to adapt. Research shows that resilience is the key to success for caregivers. 

Elements of resilience are defined as positive adaptation in the face of adversity, flexibility, psychological and physical health, degree of caregiving burden and social network satisfaction. Some of these things you have no control over, some you do.  Flexibility and adaptation are two elements that a caregiver can work to improve.  In fact, you probably already have. Things you may have adapted already:  Scheduling medication reminders and driving parameters.

So how might you apply flexibility and adaptation to the holiday season?

First start with what you have traditionally done, then simplify. If you have always hosted a holiday get-together, plan a simplified version. Perhaps you have it earlier in the day, have a smaller group of invitees, limit the preparations with catering or simplify preparations that include your loved one.

If you have always taken an evening to see holiday lights, continue to do so—choosing an earlier time frame and a night that is not a high-volume night for crowds. If you have always gone shopping together, consider doing some of your shopping on-line. Include your loved one by allowing them to help in choosing.  Rather than asking, “what should I get Andrea this year?”, Ask, “will Andrea prefer blue or red towels for her bathroom?” Your loved one is still a part of the choice, but is given some direction in the decision.

For flexibility, remember it is never too early to pull the plug on an event or an outing.  If you see that your loved one is starting to waver, return to his/her normal routine as quickly as feasible.  Allow the decorations and music that you have traditionally enjoyed be enough for this season.

There is a slogan that is helpful; Expectations are resentments waiting to happen. By adapting your plans prior to including your loved one, you can avoid future disappointment and resentment.  Successful caregiving includes resilience. 

Contact Dr. Cate or Terri for information on how Ruth's Promise can help.

References

Dias, R., Santos, R.L., Sousa, M. F., Noqueira, M.M., Torres, B., et al.  (2015).  Resilience of caregiver of people with dementia: a systematic review of biological and psychosocial determinants, Trends in Psychiatry and Psychotherapy, 37(1):  12-19.  


Traditions Re-Visited

 

From ghoulies and ghosties
And long-leggedy beasties
And things that go bump in the night,
Good Lord, deliver us!1

 

This traditional Scottish prayer can well be applied to October celebrations when living with dementia. With Halloween decorating a phenomenon that increases every year, it is important to consider the impact of Jack O’Lanterns, skeletons, mummies, witches and vampires. 

First remember that these expressions of the holiday are more numerous and vivid than they were in your loved one’s early life. Halloween spending has grown over the years. With less Halloween energy in your loved one’s past, the reminiscence value from Halloween décor will be minimal. Not only will these images not enhance living with dementia, they easily can add to environmental stress.  Whether it is a cobweb draped over a door or a talking witch, these decorations may in fact seem like real ghoulies and ghosties. 

The brain changes that occur with Alzheimer’s and related dementias include changes in vision and perception. Hallucinations and delusions may leave your loved one unable to distinguish between fantasy and reality. 

Flashbulb memory of a particularly frightening time in life can also make what you see as a neutral holiday image quite troubling to your loved one. An example, clowns once seen as fun became frightening after a clown killer in Stephen King’s movie It.4 The memory of fear, horror, terror was associated with the face of a clown.  Flashbulb memories are detailed and vivid memories of an occasion that is retained for a lifetime.An image or a sound can send a person back to the feelings of the memory.

Back to things that go bump in the night. As you prepare to decorate for Halloween, it would be best to choose decorations that are less likely to frighten. 

Rather than Jack O’Lanterns, why not pumpkins?  Rather than cobwebs and witches, why not cider and candy corn? Have a Halloween that is positively memorable.

Remembering the Future

 The most painful state of being is remembering the future, particularly the one you'll never have. Soren Kierkegaard

This quote struck me as the epitome of what daily caregiving is like.  As we spend the days with our loved ones, we are pained by all that probably will not be. The remembering of the future. The landmarks we will not be able to celebrate, the shoulder we once cried on, the advice we once were given.

Our future is clouded by a diagnosis, limited by our roles as caregivers.   Our days are full of extras that keep us from things we once could do.  Sometimes we are torn between memories of good times in the past and fears of an eventual future or regret of a future not to be.

Our journey requires presence and courage.  We cannot dwell in the remembering of the future, but benefit most from present moment awareness. 

Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.  Matthew 6:34.

Independence Day

We rarely have a holiday that falls on Ruth's Promise Tuesdays.  When we considered our upcoming celebration of Independence and the wishes of our participants and clients, we voted for the celebration of Independence.

 Our guests, our volunteers,and our families value the celebration of independence now more than ever.  As diagnoses take away many of our dependable skills and habits, we find that independence becomes as precious as gold---as do our families, and celebrations past and present.  

Whether you have a family picnic, attend fireworks, or do any number of traditional pastimes this July 4th, please make the most of this day of national pride.  

Springtime Energy

Traditionally Spring is a time of fresh starts, cleaning, and new activities.  Fitness and nutrition become a focus with increased outdoor opportunities. But families caring for a loved one with dementia are often overwhelmed with day to day care. 

Research shows that both Alzheimer’s caregivers and their loved one with dementia greatly benefit from twenty to thirty minutes of moderate intensity walking five times a week. Benefits of this simple plan include: decreased caregiver stress, burden, depression a slowing of Alzheimer’s disease in the early stages  improved overall quality of life 

A similar study looked at behaviors of the individual with dementia. Moderate to intense exercise decreased neuropsychiatric behaviors. For caregivers dealing with difficult behaviors, this is a viable, non-pharmaceutical approach with great appeal.

If 20-30 minutes seems too much right now, consider a Japanese research initiative that found that 10 minutes a day of moderate to vigorous exercise resulted in 3.2% decrease in non-communicable diseases including dementia, musculoskeletal joint impairmentand mortality.  If your loved one is dealing with balance issues, regular higher intensity functional exercise resulted in improved balance.  A combined aerobic and non-aerobic exercise approach resulted in improved cognition as well.

Kris, a family caregiver, found that a simple aerobics class at her local YWCA kept her husband with early onset dementia engaged.   The class welcomed him, he fulfilled most of the directions, and his humor in the class extended for the remaining morning.  Whether it is a simple class at the local YMCA, a program or a shared walk with others, regular exercise of any type is a positive for caregivers with or without their loved one. 

At Ruth's Promise, we give you the opportunity to choose your Tuesday activities while we work on the exercise, the cognitive engagement, and the social strategies that help your loved one thrive.  

Therapeutic Fibbing, An Act of Faith  

Often caregivers find their loved ones resistant.  A common strategy is to enter the individual’s reality.  By meeting them where they are, we have to adapt and sometimes enlist approaches that are not based in our reality.  This is often called therapeutic fibbing. But for some Christians, that term seems unsavory.  A fib is a lie, right?

An explanation  helpful to this discussion is the story of Jesus healing the man who was let down through the roof (Luke 5:17-39).   Jesus had drawn such a crowd, that the man’s companions actually made a hole in the roof over where Jesus stood. They wanted their friend, or father, or son, or brother to be healed so much that they looked for a creative way to get him to the source. 

Therapeutic fibbing is simply a creative way to get your loved one to a space of healing, or hygiene, or safety, or respite from anxiety or anger or agitation.  Just as the man’s companions did something completely out of the norm, you too may need to step out of the familiar response and improvise.  Perhaps we could call it therapeutic improvisation.  Just as the men seeking healing used their creativity and faith in order to access healing. 

 Caregivers too can receive healing even with diagnoses that have no medical cure.  As caregivers, our healing comes from our ability to meet the challenge.  It comes from self-care, from improvisation and from trusting in Jesus above all else.       Cate McCarty, PhD, ADC


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