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.

Frank’s Tour

Hi, I’m Frank.  If you haven’t met me yet, you can read my story at The Story of Frank.  I’m guest posting on Cheri’s blog today to give you a grand tour of Shady Dell and Cobblerest campgrounds.

Spring Runoff through Shady Dell

Let’s start with Shady Dell, which is where Paul and Cheri are staying this year. The campground is situated on the Provo River in a pine and aspen forest. It has twenty sites.  All are paved, and many are large enough to accommodate large trailers and large family groups.  They even have five pull-through sites.  Fees are $18 a night with an $8 charge per night for extra vehicles.

Moving east – and up – to Cobblerest.  Cobblerest is also on the Provo River.  It has 18 paved sites.  The sites in Cobblerest are smaller and located closer together.  There are two pull-throughs.  The campground is covered in dense pine forest.  Many of the sites have great river access.  I think Cobblerest is the prettier of the two campgrounds.  The downside of Cobblerest is that there is no potable water available.  Bring your own – or you can fill your RV tanks at Soapstone, which is located about 2 miles west of Shady Dell.  Shady Dell has water, but the water system was built in the 1940s and just isn’t robust enough to handle a hose connection without the risk of backflow contamination.   Fees at Cobblerest are the same as at Shady Dell.

Provo River at Cobblerest

On the Mirror Lake Highway the rule is: the lower the elevation, the lower the fees.  Shady Dell and Cobblerest are among the lower elevation campgrounds.  The lower elevation campgrounds open earlier in the season; in fact, Cobblerest was the highest elevation campground open over Memorial Day weekend.  The high mountain lakes, Trial Lake, Moosehorn Lake, and Mirror Lake, still have several feet of snow. 

The snow is melting now – and you can see it coming through in the height and rush of the river running through Cobblerest and Shady Dell.  It’s beautiful this time of year.  Come up and see us, and don’t forget to ask for Frank.

Welcome to the Mirror Lake Highway

Our campgrounds – Shady Dell and Cobblerest – are two of the sixteen improved campgrounds on the Mirror Lake Scenic Byway (SR 150).  The Mirror Lake Highway runs from Kamas, Utah, to Evanston, Wyoming, up and over the Uinta Mountains.

One of the most beautiful highways in Utah, it boasts scenic viewpoints and picnic areas, access to over 400 lakes, many hiking, biking and ATV trails, and opportunities for improved camping as well as dispersed camping. Much of the highway parallels the Provo River.  The road is the highest paved road in Utah when it crosses Bald Mountain Pass at an altitude of 10,715 feet before descending past its namesake, Mirror Lake. 

Visitors are required to purchase a recreation pass to use facilities in this area.  A $6 pass is available and good for 3 days; a $12 pass is good for 7 days; there is also a $45 annual pass available.  The pass allows access to the picnic areas, fishing areas, and trailheads.  The pass is also required for camping outside of the improved campgrounds, which have their own fees.

So how do these fees work together?  The short answer is they don’t.  If you want to camp in an improved campground and don’t plan to use any of the other Mirror Lake Highway facilities, all you need to pay is the campground fee.  If you want to camp in an improved campground and then drive to a trailhead or a lake, you’ll also need to purchase the Mirror Lake Highway recreation pass.

For our fellow retirees – your Senior Pass allows you full access to the Mirror Lake Highway AND gives you half off your camping fees.  The Senior Pass is available to anyone 62 or older; the fee is $10 for a lifetime pass.  Find out more about obtaining a senior pass at http://store.usgs.gov/pass/senior.html

See you in the mountains!

Heading up the Mountain

My kitchen table is loaded down with dishes, pots and pans, canned and boxed goods, recipe files, and the occasional note pad and bag of rubber bands.  This can mean only one thing – we’re getting ready to head up the mountain to our summer of 2014 camp hosting assignment:  Shady Dell Campground on the Mirror Lake Highway.  Next step, load it all into totes and boxes and stack it in the back of the truck.

The trailer is already in camp, courtesy of my husband and my son.  They needed a guy’s camping weekend, and since it’s still winter in the Uinta Mountains, it made sense to take the trailer.  I am exceedingly grateful.  Parking the trailer is my least favorite part of the camping experience.  I either need a lot more spatial aptitude or a lot more emotional intelligence to be truly helpful in parking this or any trailer.

The good news is we’re a lot closer to home this year than we were last year.  So we’ll be able to come down the mountain every week on our days off – instead of every other week.  More time to keep the house in good shape and to keep the rentals running.   And we’re looking forward to being able to take advantage of some of the good stuff that we’ve had to miss while we’re in camp because we’re too far away. 

So…Murphy is alive and well and living in the Salt Lake Valley.  In addition to getting the house and yard ready (where did all these weeds come from, anyway?), and packing for camp, we also have an empty apartment that we need to get ready to rent.  This particular tenant had lived in the apartment for 12 years when we bought it.  That was 12 years ago.  Why did she have to pick May 16 to move?  Arghhhh! 

But we were on it – or so we thought.  While the boys were setting up the trailer in camp, I was in the apartment washing walls.  We had a painter hired by Sunday.  He told us he’d be done by Tuesday.  Silly us – we thought he meant Tuesday morning.  Turns out he planned to finish the job on Tuesday night.  But wait – at 9:00 PM we got a call – he’s run out of paint.  Add a trip to Home Depot to the list of things we need to do before we leave today.  And this means the apartment ready to rent until next Tuesday.  Oh, well. 

Meanwhile, the stuff on the table still needs to be boxed; a cooler still needs to be packed, and the last minute personal items still need to be stuffed in duffel bags.  Whew!  Looking forward to going up the mountain so I can rest!

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.