Caregivers - For Better or For Worse; In Sickness and in Health

When you take marriage vows, it’s supposed to be a win-win situation in that hypothetically, each spouse supports the other equally and without condition, as love conquers all that comes our way.

However, the dynamics are different for every couple, every family. 

A ’peek through the looking glass’ living with three or four examples of spouses living with Alzheimer’s disease really made an impression on me!

For the most part, I marveled at the ‘non-disabled spouse’s’ ingenuity, resilience and pure love in providing a guiding hand or whatever else is needed. 

Alzheimer’s disease - (neurological condition in which black plaque forms on brain cells causing them to die) combined with the generic term dementia - (loss of intellectual function) presents an all encompassing situation.

The other spouse takes on a myriad of roles in order to assist their loved one; helps them with everyday tasks, takes over the financial, household, decision making functions and most importantly provides a  sense of dignity and care that perhaps a strange caregiver would not be able to do as well. 

Such a caregiving role is not for the faint of heart…

Although there are resources for those couples who may have some financial independence to take on the role in structured settings with basics such as food, shelter and amenities provided, I have read of many more situations in which family members are thrown into a whirlwind of tasks for which they were unprepared and often cannot see the light at the end of the tunnel, crying out for relief!

 I fear for most of all,  the thousands of families who do not have the means or access to resources. With seemingly ‘nowhere else to turn’, many children  who end up being the caregiver to a parent who,  in some cases) have been the victim of abuse, neglect and  long held anger for the person that is their parent.  (Refer to Part 2 of this series coming in the future)

Even in the best of situations, the caregiving role can change a wife to a nurturing mother role, someone to provide much needed clarification, frequent  reassurance, safety, repetition, presenting information using the strongest modality the person retains - visual - auditory, tactile(touch), olfactory (smell) or taste.

A person with dementia and resulting loss of cognitive intellectual functions may lack the ability to pay attention, Lack memory, judgment, or reasoning. He/she may hear, but cannot process, retrieve or interpret information in the manner they were able to do in the past.

Memories are far more vivid for what occurred 50 years ago as part of their life experience versus what they had for breakfast. 

Those of us who have experienced traumatic or violent death grieve. However, we must not forget that the ‘caregiving spouse’ also has a sense of profound loss and grief for what once was their vibrant partner.

Their grief may be ‘put on hold’ in favor of the carrying out and supervision of many everyday activities of daily living, the medical appointments, transitional living arrangements,and trying to maintain a routine for their loved one. 

I have witnessed this role managed in a variety of ways - 

Some with loving kindness and inclusivity whenever possible.

Others I’ve seen may take a more aggressive approach being the ‘cruise director’  in which each and every decision is made by the partner which goes unquestioned -very much the follower- leader dynamic.

Some couples may not truly have Alzheimer’s disease, but do have cognitive impairments in which one spouse compensates for the other’s weaknesses in a lovely way-  anticipating needs- almost like a dance!   

This is not to say that the person cared for has nothing to contribute!

They can be very pleasant and appear to enjoy and appreciate small pleasures.

My admiration for these caregivers is immense as they ‘navigate the rough waters’ with grace, inner strength  and oodles of patience in public.

 However, they may shed their tears alone or in a support group.

 Either way, there must be divine intervention and inspiration from above.  Faith, hope and love fuels the engines and spirits of these very special couples!