Epilogue

We were the most unlikely of caregivers.  Mom is actually my husband’s stepmother.  He never lived with her.  He was never disciplined by her, nor was he ever consoled by her.  She did not read to him or help him with his homework.  She had six children of her own; the step-children were weekend and vacation visitors.  They never really bonded.

Surprisingly, they are quite a bit alike.  Both have strong personalities.  Both are very frugal.  Both have strong political opinions, and since they resided on opposite sides of the aisle, their discussions could be lively and vociferous. 

So when, after Dad died, she asked him to help her with her finances, he was more than a bit surprised.  He was brutally honest with her about how much money she had and what her limits were.  She respected that.  He was even more surprised at the level of control she allowed him. 

We visited every two weeks at a minimum.  I would clean her kitchen and prepare lunch while they went over her bills and income.  She told us that she looked forward to our visits. 

As she became less and less able to care for herself, we found that the finances were no longer top of mind for her when we came to visit.  She looked to him for comfort, for strength.   And then, on a Sunday morning, she called him and asked him to come.  She was alone.  She was scared.  She didn't know what to do.  And that was when he called his sisters, and the youngest started making arrangements for assisted living.

She lived only six weeks in assisted living.  We continued to visit every other week.  Our visits were personal and precious.   We talked.  We laughed.  We remembered the good times.  We remembered Dad.  I watched him hold her hand, and the love I saw in their eyes brings tears to my eyes to this day.

They have bonded.  

Chapter 4: The Toughest Decision

After a second episode of congestive heart failure symptoms that caused her lungs to fill with fluid and caused an emergency trip to the local hospital, Mom made the decision to no longer prolong her life.  She didn’t want the fluid drained – again.  She didn’t want any more painful procedures.  She is ready to go on to the afterlife where she is absolutely certain that Dad waits for her.

Our sister called the local hospice to arrange for her end-of-life-care.  We were familiar with the hospice mission and philosophy, which follows word for word.  Per the National Hospice and Palliative Care Organization (nhpco.org):

Hospice provides support and care for persons in the last phases of an incurable disease so that they may live as fully and as comfortably as possible. Hospice recognizes that the dying process is a part of the normal process of living and focuses on enhancing the quality of remaining life. Hospice affirms life and neither hastens nor postpones death. Hospice exists in the hope and belief that through appropriate care, and the promotion of a caring community sensitive to their needs that individuals and their families may be free to attain a degree of satisfaction in preparation for death. Hospice recognizes that human growth and development can be a lifelong process. Hospice seeks to preserve and promote the inherent potential for growth within individuals and families during the last phase of life.

The assisted living center where she had stayed the past two months was not equipped to handle the skilled care that Mom would need, so our sister moved her to a larger facility.  The ratio of nurses to patients in Mom’s wing is 1 to 6, and the nurses are capable of assisting her with bathing and toileting as well as administering medication and painkillers.  Of course, the cost is almost double.  In the assisted living business, more care costs more.  It makes sense.

We visited her in the new care center.  She was having a bad day, and told us she was really, truly, ready to go.  She was in pain.  She wanted to lie down.  We asked the nurse if she could have more morphine.  About a half hour later a nurse brought a syringe without a needle, which was used to administer the drug orally.  She lay in her hospice-supplied hospital bed and closed her eyes.

I held her hand.  She was a bit cold.  I watched the veins in her fingers expand and contract under the involuntary tremors of her Parkinson’s disease.  I watched her slow, steady breathing, enabled by the cannula that wrapped around her face.  I listened to the oxygen machine pumping slowly, almost laboriously.  I memorized her face, now peaceful as she drifted off to sleep.  I see a faint smile, and I hope she is dreaming of Dad, and dreaming of joining him in a better place. 

She waited only a few days longer.  Mom left this world and joined Dad today.

Emotional Intelligence in Caregiving – It’s All About the Loved One

Emotional intelligence is critical in family caregiving.  When caring for someone with whom you’ve had a long relationship, the very act of caregiving can trigger both new emotions and long-buried emotions.  Some examples, which I have felt and those with whom I share caregiving duties have felt:

•             Sadness at seeing someone who was once so vital and strong turn, before our eyes, into someone so needy.

•             Anger at the amount of time and effort caregiving is taking – and is taking away from our own families. 

•             Guilt for having the audacity to feel anger.

•             Fear of the unknown, of the looming losses, and of not doing the right thing by the loved one.

If the relationship with the loved one has been rocky, for example, if you were neglected or belittled as a child, seeing the loved one in the role of the child may trigger the strong negative feelings you felt way back then. 

So we toss about in this maelstrom of our own emotions while the person we are caring for – sometimes the very person we’ve always expected to help us deal with our emotions – is tossing about in her own emotions.  Each of us is expecting the other to throw the lifeline. 

This is where emotional intelligence skills come in.  As caregivers, it’s up to us to help our loved ones deal with their emotions.  Of course, we must acknowledge our own emotions, but we must deal with them outside of the caregiving arena.  When we cross the threshold into caregiving, we must literally check our emotions at the door.  We need to stand ready to throw the lifeline.

This doesn’t mean ignoring all emotion.  It would actually be a lot more efficient to just focus on what needs to be done and disregard the angst of the situation.  But the angst of the situation is there – and must be acknowledged at a minimum, and in the best case, dealt with.  Use the emotional intelligence skills.

Self-awareness:  acknowledge your own emotions and how they may be either helping or hindering you in your caregiving responsibilities.

Self-management:  check your emotions at the door.

Social awareness:  help the loved one and other family members talk about their emotions and listen to one another.

Relationship management:  use the caregiving experience to help you forge deeper, stronger relationships with your loved one and your fellow caregivers.

Chapter 3: Assisted Living

The room is small.  Much smaller than we had anticipated when we loaded up the bed, the sofa, the dresser, the bookshelf, the TV, and several paintings taken down from various walls in various rooms.  How difficult it must have been for her to choose such a small part of her life in her home.  A 2200 square foot house – reduced to a bed, a sofa, a dresser, a bookshelf, and a TV.

It wasn’t what I expected.  Both of the assisted living centers I had visited previously – visiting parents of friends that had already made this heart-wrenching decision – were much larger.  In these centers, each resident had an apartment – not merely a bedroom.   One even had a full kitchen and a washer and dryer.  Not that the residents would ever need to use them, but just in case they wanted to.   Hmmm, perhaps this is why the assisted living center the family chose was less expensive than in-home care. 

Turns out I was correct.  Most assisted living centers start with a base price which includes living space and meals (the larger the space, the higher the base rate) and then add charges for specific care needed.  Help with administering medicine?  There’s a charge for that.  Help with bathing and dressing?  There’s a charge for that.  As the loved one becomes less independent, the living center staff is there to provide the additional care – at an additional charge. 

We arrived early with her furniture, with the intent that we would have the room all set up and ready for her when she arrived.  We arranged the furniture twice and resigned ourselves to the fact that the bookshelf just didn’t fit.  We had hoped to use it for her to display family photographs.  When we left, the photos were still in the box.  We’ll find a place to display them later.

The owners of the facility stressed to us how important it was that the residents had their own belonging in their room.  The bare walls were full of nail holes, evidence that they truly practiced this philosophy.  Her walls now look like an art gallery.  We brought only original art – paintings that her father, her sister, and her daughter had given her over the years.  They are beautiful.  

As planned, she arrived to find her room completely furnished and mostly decorated.  She sat on her sofa and looked around.  “This is a nice room,” she said.

That was five weeks ago.  We knew she was getting better when, about a week into the transition, she started to complain about the food.  “Nobody here knows how to poach an egg,” she grumbled when we visited the second week.

                “Why don’t you teach them?”

A week later, nearly every member of the small staff had tried poaching an egg. 

About three weeks into her stay there, she was front and center helping a new resident feel at home.  Last week, when we brought her to a family gathering, she gave us permission to list the house.  “I’m sad to lose my house, but I like having people around me so much better.”

We made the right decision. 

Chapter 2: Weighing the Options

She wants to stay in her house.  Her preference was made clear from the time she was widowed.  She does not want to move.  But can we keep her safe and keep her well cared for in her house?

I cannot begin a discussion on options for providing care for an elderly family member without discussing the topic of elder abuse.  Per the National Center on Elder Abuse, Bureau of Justice Statistics, 5,961,568 elderly persons were abused in 2010.  That’s 9.5% of the elderly population that year.  Fifty-eight percent (58%) of these cases involved neglect – the main problem we were trying to solve.  Twelve percent involved financial exploitation – a problem we were keen to prevent.  Mom needed what little money she had to pay for her care for the rest of her life.  We didn’t want to provide any unwanted opportunity for anyone – no matter how well meaning – to shatter her financial integrity.

Family discussions on providing better care for Mom revolved around three major options.

Option 1:  Find a family member or a college couple to move in and care for Mom. 

Pros:  Free rent in exchange for care would be the least expensive option.  Mom would be able to stay in her house.

Cons:  The person/people in question would likely not be professional caregivers.  And as much as we would hope to be able to screen a potential care giver, the opportunity for this type of caregiver to commit a form of elder abuse is quite high.

Option 2:  Pay a professional caregiver

Pros:  The person or company providing the care would be trained and licensed.  There would be a legal recourse if elder abuse were detected.

Cons:  It’s very expensive.  Caregivers charge an hourly rate; rates are higher if 24-hour care is needed.

Option 3:  Assisted Living

Pros:  24 hour professional care in a setting where she would not be alone.   We were surprised to learn that the assisted living facilities we researched were actually less expensive than paying a professional caregiver in her home.

Cons:  She would have to leave her home.

After the family meeting to discuss the options, and after all our research was done, we discussed the options – including the pros and cons – with Mom directly.  We decided together than she would consider assisted living.

Chapter 1: It's Our Turn

I wrote last week’s post, Prologue, to set the stage for this series on caregiving.  Suffice it to say that it is not fiction.

Per Caregiving in the U.S., The National Alliance for Caregiving and AARP 2009, “As our parents age, it’s likely a matter of when, not if, they will need our help.  Nearly 44 million Americans — 1 in 5 adults — are family caregivers for a relative or friend over age 50.” 

It’s our turn.  Dad died in August, leaving Mom alone in their big house.   In the few short months since Dad passed, we have watched as the Parkinson’s symptoms have caused her to lose mobility and feel almost constant pain.  While the informed sources on the Internet tell me that pain is not a classic symptom of Parkinson’s, most go on to say that most Parkinson’s patients do in fact have pain.

These sources also tell me that dementia and depression are symptoms.  We have observed evidence of forgetfulness.  She doesn't remember if she’s taken her pills.  She wakes in the night and becomes disoriented. 

And as for depression, well, I can’t even begin to comprehend the losses she’s suffered in so short a time.  Her husband of over 50 years.  Her mobility.  Her short-term memory.  Her independence.  Who wouldn't be depressed?  Who wouldn't be sad? And who wouldn't, at times, be angry?

Mostly, she is alone.  The regular visitors that came bearing food, gifts, and a shoulder to cry on stopped coming.  She can no longer drive, so she depends on others to transport her – but she really doesn't want to go anywhere.  She no longer feels up to going to church.  She no longer wants to go out to lunch.  She can no longer read, and operating the TV remote has become too complicated for her.  So she spends hours each day alone with her thoughts.

She seems to perk up when she has visitors.  Although she complains that food no longer tastes good to her, she will always sit down and eat something if it is prepared for her and someone else sits down and shares the meal with her.

It is clear to us that she needs more care than family visits can provide.  And she needs it sooner rather than later.  We have some decisions to make.

Prologue

She is frail.  Far more so than when last I saw her.  Was it really only two weeks ago?  Can she really be going downhill this quickly?

I take her arm and walk her to the car.  She weighs so little now that even I can support her easily.  She leans on me as I open the car door.  She sits awkwardly, unsure of how to adjust herself so she is facing forward on the seat.  My husband reaches in from the other side and pulls her toward him. 

It takes both of us to secure her seat belt.  He holds the strap across her body while I fumble for the clasp where the buckle end goes.  Finally we are all situated and back out of her driveway.

She is silent most of the trip.  I can only imagine what she is thinking.  Our destination is two hours from her home of more than 30 years.  We are meeting her youngest daughter, who has made appointments for her to visit two assisted living facilities.

She agreed to this visit last week.  In her more lucid moments she knows that she can no longer live alone.  But the loss of her independence must be unbearable to her.  For as long as I have known her, she has been physically strong, mentally alert, and the proud matriarch of her family.  So much loss – in so short a time.  Her heart must be breaking.

                “I’m as nervous as I can possibly be,” she finally admits.

We emphasize the positive.  You’ll be so much closer to family.  There will always be someone there with you.  They take care of everything.  They’ll make sure you get your medicine on time.  You won’t need to cook.  You won’t need to clean.   She says nothing more.

She is anxious to get out of the car when we finally reach the meeting place.  We are parked around the corner from the door to the convenience store.  We get her walker out of the trunk.

“Let’s walk inside and use the restroom,” I suggest.

She looks at the door and then looks at me.  “It’s too far to walk.”  I help her get back into the car and drag her walker to the front door while my husband drives her over.

Her daughter is there.  We go inside together.  We settle her into yet another vehicle for the second leg of this road trip.  We kiss her goodbye and assure her we’ll see her later that day. 

I turn away, hoping she didn’t catch the tears coming to my eyes.