A Day in the Life of Hospice Care

Mom has been home in hospice care for almost 2 weeks.  We are determined to keep her here until God calls her home.  Since she has now become what they call a total care patient I knew I would not be able to handle all of her needs on my own so I arranged for an in-home aide 6 hours per day during this time.  The CNA the care giving service sent us is a lady from Ghana named Agnes.  I have come to think of her as Mom’s African Angel.

Rocky greets her enthusiastically each morning at 9 a.m.  The first few days she was quite alarmed by his loud greeting.  I assured her it was just his way of saying hello and announcing to me I had a visitor.  By the second week I could let him out the door when she arrived.  He leaps off the front porch and gallops towards her barking “ferociously,” comes to a halt when he reaches her and wiggles his hind quarters in hopes of a friendly pat and greeting.  She obliges and they walk up to the front door together.

By then Mom has usually been awake for a bit and I’ve given her something to drink.  She never takes more than a few sips.  Sometimes I’ve even gotten her to eat a little breakfast by the time Agnes arrives.  Yesterday it was ice cream with mashed bananas.  She managed about 1/4 cup before she could no longer make the effort to swallow.

Agnes greets Mom with a wide smile and asks her how she is doing.  Mom always says, “Fine.”  After making a bit of an assessment of Mom’s condition we begin the morning ritual.  Agnes prepares a warm basin of water and sets out the items she will need to wash and dress Mom.  I pick out some clothes for Mom to wear and then stand on the other side of the bed ready to assist when needed.  I talk quietly to Mom and rub her arm or leg.  Yesterday I asked her if she knew who I was.  She replied with a smile, “Mama.”  And so I am.

I never considered I might some day become Mama to my own mother.  When she first moved in I often thought it was like having an eight year old in the household based on the care she needed, the questions she asked, her understanding of her situation.  As the months have passed she has become younger and younger.  Usually there is an event that has reduced her age–a surgery, a mini-stroke, a hospitalization.  Now she is like my not-so-little baby, only a bit older than an infant.  She is not sure where she is, she can no longer walk, she often needs me to hand feed her, but she knows our faces and our names.  And for that I am grateful.

After getting washed and dressed, Agnes sits Mom up in the bed and transfers her to a wheel chair.  I’d like to say I help, but it’s really Agnes’s strength that gets the job done.  I just grab the waist band on Mom’s pants and guide her into the chair.  Agnes wheels her into the living room and again “we” transfer her to the blue recliner by the picture window.  Agnes skillfully props her up with pillows and elevates her feet.  I offer her something to eat or drink frequently but most of the time she declines.  She usually manages a bowl of ice cream at some point.  It’s the one thing she always seems to enjoy and not have trouble getting down.  At this point we offer her ice cream a couple times per day.

Agnes leaves at 3 p.m. each day so around 2:30 we start the process of getting her back into bed.  After Mom is settled in she often takes a nap even though she has napped off and on throughout the day.  I think just moving her from one location to another tires her out.

The rest of the day I am in and out of her room–checking to see if she is comfortable, thirsty, or needs anything.  One day I asked if there was anything I could get her and she told me she would like her shoes so she could come to dinner.  I told her why she would not be able to get out of bed knowing it would be forgotten in minutes.  I think next time I will just distract her with a different conversation.

I put a TV in her room so she could watch her favorite show, The Andy Griffith Show.  Netflix has all 8 seasons.  She’s watched it through Season 5 many, many times since she moved in with us.  Don Knotts left the show after Season 5 and Mom declared it wasn’t worth watching without Barney Fife.  He’s her favorite character.  A couple days ago after watching several episodes Mom told me she and Dad had met Andy Griffith and Barney Fife at the Health Department when Dad worked there.  I think Mayberry and all its characters must remind Mom of the simpler days when she and Dad lived in their own small town where they raised my two brothers and me.

Around 7:30 p.m. I prepare Mom for bed.  After I get her pajamas on her, I arrange her pillows to prop her up and relieve any pressure points.  This is something I have to do several times before the morning.  More than one nurse has emphasized the importance of repositioning Mom to prevent pressure sores.  I trick my body into waking up in the middle of the night by drinking a good sized glass of water before I go to bed.  Otherwise I might not be able to make myself get out of bed to attend to Mom.  I still pray with her each night before I say good night, but she no longer offers her own prayers.  One night before turning out the light, my daughter came in and suggested we sing some hymns.  We are a hymn loving family and know quite a few by heart.  As we sang, Mom moved her lips but her voice was too soft to hear.  It was a sweet time of worship.

I check Mom often when she is sleeping in her room–whether it is napping in the late afternoon or after she has gone to bed for the night.  I watch her chest to make sure I see it rising and falling.  We are all only one small event away from eternity.  God has numbered our days, and only He knows the day and the hour He will call us home.  But I am acutely aware His time for Mom is very near.  It’s my prayer and heart’s desire to be at her side when she steps away from us and into His presence.  I think I have a secret hope I will see some of His shining glory and get a little glimpse of heaven when Mom leaves to join the heavenly throng.

 

The Sacred Journey

There was a week in May of momentous, life changing events:  my mother had a stroke, my daughter announced I was to be a Grammy, my son got married.  I thought my heart would burst with all the sorrow and the joy.  God gave grace for each day in the form of family and friends to share the pain and the happiness.  I received texts to tell me someone was thinking about us, sometimes it was a short visit from a friend to give a hug, sometimes it was a Facebook comment to remind me of people who cared and knew how to pray.  It all reminded me I was not alone, but surrounded by a community of fellow sojourners on this life journey.

Last weekend we prepared for Mom’s arrival home from the rehab center into hospice care.  My son and his new bride came over to help move Mom’s queen sized bed out of her bedroom and down to my son’s now-vacated bedroom.  The supply company hospice uses brought a hospital bed and installed it in my mother’s bedroom.  We also moved two recliners into her room so visitors would have a comfortable place to sit and spend time with Mom.

Now we walk a sacred journey with my mother.  It’s not a lonely walk, though.  Family, friends, and even strangers will join us on Mom’s final earthly journey.  One by one they come to walk alongside my mother for a bit.  A friend from the church she and Dad used to attend drove over 100 miles to visit with her.  My mother’s face lit up with joy when her friend walked into the room.  There wasn’t much conversation on Mom’s part.  But she recognized her friend and remembered the visit the next day as well.  At her departure, the friend cried and Mom wept, too, even though I don’t think she knew why.  I expect there will be many showers on this journey.

Her first week home Mom’s sister from North Carolina arrived.  They hadn’t seen each other since my father’s funeral almost 2 years ago–although they talk on the phone regularly.  It was such a sweet reunion as my aunt, my daughter, and I gathered around Mom’s bed catching up with family news and reminiscing about the past.  We talked about a future visit but I knew in my heart this was probably the last time they would see each other on this side of eternity.  These things remained unsaid, though.

mom dj karen summer

Mom’s sons, grandsons and granddaughters, nieces, a sister-in-law, friends will all attend her in the coming weeks.  She will lay in her mechanical bed, propped up with pillows as the procession of dear ones come to spend a few moments at her side.  The talk is quiet but there are smiles and occasional soft laughter.  Her hand is gently held and the kisses placed upon her cheek are gentle caresses.  She will not be alone even when there are no visitors because she is surrounded by photos of the ones she has cherished throughout the years.  Their happy, smiling expressions speak of the love they hold for Mom.

mom renee sylvia suzanne

 

The room feels like an airy cocoon, and I hope she feels comfortable in it.  The walls are a soft pink, the scent of lavender is in the air.  A vase of colorful flowers sits within her view.  During the day soft sunlight streams through the windows.  Though it might seem strange, it is a peaceful place and I enjoy sitting there beside Mom.  The silence isn’t empty but filled with a life of love and memories.

Caregivers come each day to bathe and dress Mom.  Now I am the assistant and quite willing to be so.  Mom lies quietly under their gentle ministrations.  I am impressed with their compassionate, skilled care.  My own efforts at caring for Mom these past 2 years seem clumsy in comparison.  I privately feel a little embarrassed at the memory but there isn’t any shame.  I will learn to be more proficient as I watch their movements.

I don’t think Mom understands what is going on.  She doesn’t realize she is paralyzed on one side.  She thinks she can get out of bed whenever she wants.  It doesn’t do much good to tell her she can no longer walk because 5 minutes later she will not remember what I said.  What goes on in her mind is a mystery.  One day she told me she had made glazed donuts.  Not too long ago, I would have tried to help her understand why that was impossible–now I just ask her if I can have one.

More so than ever before I remind myself to take one day at a time.  God’s grace is sufficient for each day but not in advance of the days ahead.  God does not promise grace for our imaginations.  But He does promise to provide the daily portion of what we will need for the day’s journey.

I imagine my mother and all the ones who love her walking with her but mostly behind her on a pleasant path.  There is a gentle stream on one side and mountains in the distance on the other side.  Ahead of us is a shining city.  But the distance between my mother and the gates of that city is unknowable.  Some days it seems very close and other days not so much.  One day she will complete her sacred journey, and my family and I are grateful to be a part of this time with her.

 

The Terrible, Wonderful Week

Mother’s Day, 2017– the start of a momentous week in our family’s life.  Sunday was a day to celebrate Mom, and the following Saturday was my son’s wedding–an occasion greatly anticipated in our household.  In between, my daughter and her husband were flying in from Portland to share in the festivities.  Even though Mom would not be attending the wedding, she shared the joy of this special family time.

Mom woke up around 9:30 and was her usual happy, morning self.  We started our routine as we did every morning–after helping her into her robe and settled in the chair by the window I brought her orange juice and medications.  When I asked Mom what she wanted for breakfast she surprised me by saying she would like her protein drink.

She hasn’t been able to drink it for several months now.  No one understands why, least of all Mom.  It’s been her morning drink for many years–a concoction of calories, protein, fiber and healthy fats.  But over the course of several weeks after Christmas she had begun to have more and more trouble drinking it.  She would take a mouthful and hold it, unable or unwilling to swallow.  I would sit with her and coach her through as much of the drink as I could.  Finally we reached the day when we could not continue and I started fixing other breakfasts for her.  It took her an hour to eat a bowl of oatmeal or a scrambled egg and toast but at least she could get it down.

On Mother’s Day, however, when Mom requested the protein drink I could not refuse.  Taking advantage of the opportunity, I packed as many calories into that shake as I could manage. In very short order she drained it dry.  Everyone but Mom was surprised.

I helped her get dressed and ready for church.  These days church for Mom is a comfortable seat in the family room watching Grove Avenue Baptist Church as we stream it from the laptop to the TV.

Mom attended Grove Avenue Baptist in Richmond when she was in training for her RN at MCV in the early 1950’s.  One Sunday when Mom first moved in with us, she was watching and remarked the pastor was the same one who preached when she attended all those years ago.  Even though he did seem a little ancient we just looked at each other in sad recognition of Mom’s mental decline.  At that time we were still trying to convince her of reality so I looked the speaker up online.  To our utter amazement he was indeed Pastor Emeritus of Grove Avenue Baptist Church and had been the senior pastor when Mom was a student.  It was God’s sweet gift for Mom that Sunday.

The rest of Mother’s Day was a fine day of family celebration.  My husband fixed a scrumptious roast chicken for lunch.  Our son and his fiancee joined us for lunch, and afterwards we all went outside to enjoy the beautiful weather.  We gathered around the carport and watched my son and husband change the oil on 3 cars.  It’s an odd sport for family fun, but we are easily entertained.  Later I made a decadent dessert for our evening repast.  It’s Mom’s favorite–chocolate molten lava cakes with ice cream.  And yes, we sometimes eat dessert for dinner–usually on a Sunday.

The next day everything changed.

I heard Mom in her bedroom at 7 a.m. fumbling around.  I went in and asked her what she was doing.  In a somewhat slurry voice she told me she was trying to find her clothes. It was too early to get up so I guided her back to bed.  Mom usually sleeps until 9 or 10 a.m.  If she tries to get up earlier than 8:00 I often put her back to bed.  It’s the one time of day I have to myself.  I jealously guard that little morning time slot between the last person leaving for work and Mom getting up.

At 9:30 I heard Mom again and went in to help her.  As she was trying to drink her juice and take her pills she was having quite a bit of trouble.  I could tell she was holding juice and pills in her mouth.  I encouraged her to swallow but she couldn’t.  Eventually I had to let her spit out the juice and pills.  I fixed her protein drink for her again, hoping she would be able to get it down as she had the day before.  She couldn’t drink any of it.

I began to realize Mom seemed weaker than usual. She needed a lot more assistance from me in getting dressed.  After she got dressed, I finally took the time to really look at her and assess the situation.  That is when I noticed her mouth was drooping a little on the left side.  I followed the stroke guidelines and asked her to smile, raise both arms and repeat “Twinkle, twinkle little star” after me–all of which she was able to do.

I already had an appointment with her primary care doctor that morning to check for a UTI.  I helped her out to the car and we headed to the doctor’s office.  We were led into an examining room to wait for the PA.  When she came in I asked her to notice Mom’s drooping smile.  And that is when it all began.  She told me to take Mom to the ER immediately.

After I wheeled her into the ER, Mom was whisked back into triage.  She responded to the same directions I had given her earlier and smiled, raised her arms and then her legs at the doctor’s and nurses’ requests.  Everyone wanted to see her perform.  Each performance, however, got a little weaker.  She was finally admitted that evening and by the next morning she could not lift her left leg or left arm.  The MRI confirmed Mom had a stroke.  Over the next few days further tests were done and by Friday it was determined she was “stable” which just means there was nothing more to find out about her condition.  She was discharged to a rehab facility.

At any time this would have been difficult, but this was the week before my son’s wedding.  We had carefully planned for providing Mom with with all the support she would need over the weekend while we were in Richmond for the nuptial festivities.  None of the caregivers would be needed now since she would be in a rehab center.  In a way I could rest easier knowing she would be well taken care of with nurses and CNA’s looking in on her around the clock.

I decided I would compartmentalize the issues with Mom for the weekend.  My daughter and her husband were here and their visits are rare.  We were all spending the weekend in Richmond together to celebrate with my son, his bride, our families and friends.  I wanted to enjoy this time to the fullest with the people I loved and make some sweet memories.  And that is what I did.

Reality set back in Sunday morning when we got back and I went directly to see Mom and see how she was doing.  Since she came in on a weekend she had not been to any of her therapies yet.  The first thing she asked about when she saw me was Rocky.  She couldn’t understand why she hadn’t seen her dog.  She cried when I told her about the wedding. Mom didn’t know where she was and did not understand she had had a stroke.

I’ve been visiting Mom twice every day since she’s been in the rehab center.  I try to get in for a meal and her speech and/or physical therapies.   The dementia is detrimental to her progress–eating is a long difficult chore, she cannot stand on her own and her left arm is useless.  Though the dementia inhibits her progress, it allows her to believe all is well.

Only God knows what lies ahead.  I’ve asked Him several times to give me a hint but He has been silent.  I have prayed He would give me the grace to take one day at a time and that is the prayer He has answered.  Though I have felt utterly overwhelmed at times, my faith upholds me and the strong love and support of family and friends are sustaining.  I have no doubts of God’s goodness and mercy and love for me, my mother and my family.  Wasn’t that most evident in this terrible, wonderful week?

When Home Seems Strange

Our weekends are usually easy going affairs.  We do some housework and yard work.  My husband has some hobbies he enjoys–beekeeping and woodworking.  We especially enjoy cooking together on weekends.  My son and his financee usually show up for at least one meal and my youngest daughter is around at different times during the weekend as well.  So folks are in and out of the house.  My mother watches all of this from her blue leather recliner by the picture window.  She observes and makes her mental notes, comes to the table for meal times, reads her books and watches Rocky.

A few weekends ago on a Sunday night as it was nearing her bedtime, my daughter, husband and I were sitting with her and she asked me why we kept going to different houses over the weekend.  I told her we hadn’t been to any other house, that she was currently in our home which was now her home as well.  I told her it was her bedtime and she asked me to take her home so she could get ready for bed.

Instead of correcting her I told her I would take her home, helped her up and guided her to the bathroom.  After her evening toiletry I led her to her bedroom and helped her into her pajamas.  But there was no fooling Mom.  She “knew” I hadn’t taken her anywhere and wanted to know why we were in a stranger’s house.  I showed her all of her things in the room, her photos and furniture and tried to help her understand it was her room.  As I tucked her into bed she asked me if I would be sure to gather all her things when we went home the next day.  As we prayed together she thanked the Lord for all the people who let us use their houses over the weekend.

I wonder what it must be like for Mom to think she is in a strange place when she goes to bed at night.  God must repair her mind a little bit during those hours of sleep because she knows where she is when she wakes up in the morning. I cannot remember a morning when she hasn’t gotten up with a smile on her face and a quiet joy settled over her soul.  It reminds me of the verse from Psalm 30, Weeping may tarry for the night, but joy comes in the morning.  Thank you, Lord, for the joy.

Happy Birthday, Mother

Since Mom has been having a lot of trouble knowing/remembering what day it is, my daughter suggested we put a little white board near her and update it every day with the day of the week and date.  Mom often asks what is for dinner and who is coming for dinner so I put that on the white board, too.  If there is any event occurring or a caregiver coming that is noted as well.

The other day I was updating her board and said aloud it was May 10.  Mom said brightly, “It’s my grandmother’s birthday!”  Actually it was her mother’s birthday.  Maybe I should have just gone along with her, but instead I corrected her and told her it was really her mother’s birthday, my Grammy.

Interestingly, I recently asked her when Grammy’s birthday was and she could not tell me.  I had been googling my Grammy’s name and to my amazement I found a photo of her gravestone.  It had her year of birth and death but not the actual dates.  I wanted to get the dates before it was too late.  I was sad to think I might not be able to find out.  A few days after I asked Mom about it, she looked up from the book she was reading and said, “Mother’s birthday is May 10.”  Knock me over with a feather.  The filing cabinet drawer opened and out popped a folder.

Back to the current May 10 though.  Since Mom didn’t seem to know the difference between her mother and grandmother I wanted to know where I was fitting into the family tree that morning.  I asked Mom how she and I were related and she replied, “You’re my cousin.”

Mom has very few cousins.  In all my life I’ve rarely heard her mention cousins.  The ones she had lived far away and she didn’t grow up visiting or playing with them.  Maybe she’s secretly wanted a close cousin–now she’s got one.  At least for the day.

Later that day an old friend called her.  They had a good back and forth conversation–something I don’t often get with her.  In fact, I look forward to her phone calls just to hear her conversing with someone.  I heard her tell her friend it was her mother’s birthday (bravo, Mom).

After the phone call Mom asked me if I had her mother’s address because she wanted to send her a birthday card.  I told her Grammy had been gone a long time–nearly 50 years–and she was in heaven now.  “Well, I guess I won’t send her a card then,” she replied matter-of-factly.  I told her maybe her mother would be able to hear her birthday wishes in heaven.  Mom looked up and said, “Happy Birthday, Mother.”  She would have been 111 years old.

 

 

The Wedding Decision

My son is getting married in 2 weeks.  It’s an event my family has been looking forward to celebrating for many months.  The ceremony is taking place about 100 miles south of us, in the hometown of the bride-to-be.  We decided some time ago to get motel rooms for the weekend since my husband and I will be hosting the rehearsal dinner on Friday, and we will want to stay until the very end of the reception on Saturday.  The question then became:  What is the best way to get Mom to the wedding and back?

My brother volunteered to do whatever we needed to help us out so we could enjoy the festivities.  At first the plan was for him to spend Friday night at our house and bring Mom on Saturday to the wedding; then bring her back to our house Saturday night and spend the night again with her.  The fault with this plan was how to get Mom ready for the wedding.  I don’t know who would object more to helping her get on her pantyhose–my brother or Mom.  She cannot get them by herself and heaven knows she will not consider herself dressed for a wedding without them!

The next idea was for me to come back home Friday night so I could help Mom get dressed Saturday morning and bring her to the wedding.  Then my brother would bring her home after the reception and we would stay behind.  But the more I thought about missing Friday night with my family and the opportunity for all of us to be together–including a daughter and her husband flying in from the west coast–the less enthused I became about that plan.  This kind of family event is rare and I did not want to miss any of it.

The other consideration was my mother’s well-being.  What a long day it would be for her.  It takes her nearly 2 hours to get ready to go anywhere after she wakes up; then there would be the long ride to the ceremony; a couple hours for the reception; and finally a long car ride back home on the I-95 corridor, which can be very unpredictable in terms of traffic issues.

After talking with a couple people who love her well and understand her current physical and mental limitations, I came to the conclusion it would be best for Mom to forego the wedding and have a caregiver stay with her on that day.  It’s heart breaking on several levels to make this decision.  Mom doesn’t always understand her limitations–physical or mental.  She knows she’s forgetful, but I don’t think she understands she has dementia.  Her memory and cognitive skills are so impaired she has no idea how much she has forgotten.  But she does know my son is getting married and she’s been looking forward to the wedding in her own way.

A few days ago I talked to Mom about my decision she would not attend the wedding.  Although Mom expresses very little emotion, I could tell she was not happy about the idea.  I explained the reasoning behind the decision–the long drive, the long day, how difficult it would be for her, etc.  My mother, ever graceful, conceded it was probably best.

That night she talked to my aunt who is my dad’s sister.  She was one of the ones I talked to about Mom going to the wedding, and she encouraged me to let Mom stay at home.  Mom told my aunt I had decided she would not attend the festivities.  I could hear my aunt on the other end of the phone telling her she thought it was the right decision, all things considered.  When Mom got off the phone she relayed the conversation to me. As I put her to bed that night she said, “Karen, you made a wise decision about me not going to the wedding, and you were the only one who could have made the decision.”

I wanted to cry.  My mother hasn’t been able to converse like that in months–to make a statement that required a thoughtful process where she took my words, my aunt’s words and came up with her own response to them.  And there was a truth in her statement that she didn’t even understand.  Because part of my decision was based on a selfish desire to enjoy my son’s wedding weekend unfettered by the care of my mother.  Yes, I was the only one who could make the decision that would impact me as much as it impacted Mom.  My dear, dear mother, a lady full of grace and trust.  Although you have lost much, the grace still shines.

Mealtimes with Mom

I spend 3 hours each day sitting with my mom at the kitchen table.  Let me explain:  it takes Mom at least an hour to eat any meal I put before her.  One scrambled egg and a piece of buttered toast–1 hour to eat;  a bowl of oatmeal–1 hour to eat; a bowl of creamed broccoli cheddar soup–1 hour to eat.  You get the picture.  She rarely ever finishes a meal.  I think she gets tired of eating, or rather chewing.  She puts a fork or spoonful in her mouth and chews and chews and chews.  It’s hard to get enough calories into her.  I sit with her while she’s at the table to encourage her to eat and remind her to swallow.

I used to give her a protein drink in the morning with protein powder, whole milk, an egg, coconut oil, ground flaxseed–around 650 calories.  She dutifully drank it every morning.  But now she can’t.  I don’t know why; the speech therapist doesn’t know why.  She would take a gulp of the drink and hold it in her mouth.  I had to coach her through each mouthful.  Finally it got to the point she just refused to drink it anymore.  That’s when I switched to my version of a high calorie oatmeal with ground flaxseed, coconut oil, maple syrup and topped with ice cream in an effort to get calories into Mom.  Unfortunately she can only eat half of it.

This is a new trend in the past few months.  From what I’ve read it’s one of those things that develops as dementia progresses.  Recently when I was helping her bathe I realized she was starting to look skinnier than I was used to seeing.  I weighed her and discovered she had lost 12 lbs since Christmas.

Mom has a sweet tooth so I started buying premium ice cream for her to get some extra calories each day.  I told the rest of the family it was off limits for them.  After dinner, long after everyone else has finished and left the table and the dishes have been cleaned, Mom finishes up her meager meal and says she can’t eat anymore.  She gets up and moves to her comfy chair.  I dish her out a generous portion of ice cream and hand it to her.  She takes it with a happy smile and thanks me.  Guess how long it takes her to eat that bowl of ice cream–5 minutes.  Now that’s the mom I’ve always known.