Thursday, February 23, 2017

What's Next? Part 10: Adventures in Caregiving

The weather in our area has been as strange as my life lately; yesterday we hit an all-time record high of sixty-something degrees in February.  The only snow still lingering is in the ditches in the shadow of the woods.  We all know winter isn't over yet; the forecast is calling for snow tomorrow.

The black blobs on the lawn are the Girls, scavenging for whatever they can find on the greening lawn.  

Anyway, back to my saga.  

After the hospice furniture and accoutrements were delivered, and everyone left, Carl, Grandma and I sat in stunned silence.  Reality was settling in.  To their credit, hospice personnel did set the bed up in Mom's bedroom, but it is difficult to take it all in.
Joel showing Grandma pictures of her great-grandchild, Audrey

Trying to follow in my mother's practical footsteps, I pushed myself out of the kitchen chair and went in search of the vacuum cleaner.  Mom always said when times are tough and you're sad, look for something to do and get on with your life.  With all of the mud outside, the house needed cleaning.  Carl sat with Mom so he could help her when she needed it.  My tired mind was racing as I went around the house vacuuming.  How is this going to work? 

Darkness was falling fast and I remembered the Girls would need to be locked up for the night.  I asked Carl if he could stay with Mom and I set off back down the road to our house on foot.  The cold air was heavenly welcome after the blast furnace Mom's house always is.  The thermostat is set to 70, but when the oil furnace runs, the heat soars to unbelievable heights before it shuts down, causing menopausal me to almost swoon.  

I was about halfway home when a car came from the east.  David pulled up next to me and popped open the passenger door. 

"Where are you headed?" he asked.

"Home to the chickens," I said.

Dave put his car in reverse and we sped backward down the road.  Both of my sons have an amazing talent when it comes to driving in reverse.  Dave went along with me to lock up the chickens.  We went in my house and gathered up some more things I'd need for the move to Mom's.

As we were coming out of the house, a van pulled in the driveway.  It was my dear friend Brenda.  

"Did you eat yet?"  She had brought homemade chicken dumpling soup, a fresh loaf of bread and a delicious 'Kringle' from a specialty bakery.  The kindness of my friends never ceases to amaze me.

All three of us went back up to Mom's house.  Brenda warmed up her delicious soup and helped me with more of the cleaning while Dave and I set to packing up the sunflower seed bags in the hallway and tidying up in the entryway. 

After we were done with those chores, David took stock of the placement of the bedroom furniture and the hospital bed and came up with a better plan to make it more workable.  He and Carl took the dresser and cedar chest out of the bedroom and into the living room.  Brenda did some more vacuuming,  and I was dusting while Mom sat in her new transport chair weakly observing.  

We put the hospital bed up against the west wall of the bedroom leaving about two feet of space between the two beds.  David set up my CPAP machine for me and after about an hour, we were ready to eat.  It felt SO good to eat a good home-cooked meal; we'd been eating poorly for too many days.

Brenda sat with us and visited with us and then cleaned up her generous meal.  David took Mom's laundry home with him and promised he'd have it back the next day.  (Remember, silly me only owns a wringer washer and no dryer.)

After Brenda and Dave left, I got Mom ready for bed.  Mom's bathroom is tiny and even the smaller transport chair barely fit through the door.  I had to stop at the doorway and then painstakingly assist Mom's tiny, halting steps to the toilet.  

I was supposed to give Mom a smaller dose of morphine before bedtime to ward off any pain.  The drug takes effect amazingly quick; before David left, Mom was alarmed by what she thought were seven fingers on his hand.  She asked him why he had so many fingers.

"Do I?  How many fingers do I have?" Dave asked.  "Let's see, one, two, three, four, five, hmmmmmm......I guess I have five."

"Oh, ok, I thought I saw seven.  Now let me get this straight; it's Carl first and then you and then Jack, Queen, King.......right?" Mom tapered off.

Before I could seat her on the toilet, I had to figure out how to get her slacks, long underwear and and underwear down while still holding her up.  She was so wobbly, it was scary.  Sadly, I thought we had everything removed, but we missed her underwear which necessitated an underwear change.  (I'm getting better at it now, we've only had that happen three more times since.)

"I never thought it would come to this," Mom said in a slurred voice.  "You, having to undress me like a kid.  This is awful. I'm so sorry."

"Oh, don't worry about it," I said.  "You did the same for me when I was little."

Mom sighed heavily as she sat glumly on the toilet.  Suddenly she looked at her hands and then at mine.

"Why do I have four hands?  I don't understand.  This makes no sense.  I've never had four hands before."  She started clenching and unclenching her fists.

"Why don't my hands work?  I can't close the other ones."

I realized it was the morphine taking effect and opened and closed my hands at the same rate. 

"Oh good, now they're working."

I remembered her dentures at the last minute and she was able to tell me what I had to do to care for her teeth.  I put her back in the chair and wheeled her to the bedroom door.  Once again we couldn't enter the room with the chair, so she had to walk around her old bed to get to her hospital bed.

With Carl on one side and me on the other, we had her safely installed in her new bed.  I tucked her in and gave her a kiss goodnight.  

"Good night, Mother," Mom said to me.  "This is something else, you have another kid to raise."

"Oh, c'mon now, we'll get through this," I said, lying through my teeth.  I had no idea how we'd get through this.  I was so tired.

After she drifted off to a restless sleep, Carl and I decided it was time to go to bed.  Carl was worried about my overtired, overwrought state and promised he would be sleep with one ear open so I could put my mind to rest.  It had been three days with less than an hour of fitful rest at a time.  I was looking forward to shutting down.   I put my ear plugs in, strapped on the infernal CPAP mask and fell into a restless sleep of my own.

But no matter how tired I was, sleep was elusive.  For one thing, I was on the wrong side of the bed.  We've been married for 38 years and I've always slept on the left side of the bed, but because Carl needed to be closer to Mom to hear her, he was sleeping on the left side.  Mom's bed is a small full-size where our waterbed at home is a queen.  Carl is a bed hog (no offense to him, just telling it like it is) and he was in the middle of the tiny bed most of the night.  I was clinging to the side for dear life.  If I tried to move him over, he was startled and my sleep apnea hose would drag on the headboard making a lot of racket which would, in turn, rouse Mom from her sleep.  Added to this misery, the furnace would kick in and out at regular intervals, roasting us.  At home, I sleep year-round with the window cracked open for fresh air; the baking heat of the oil furnace was almost unbearable.  I longed for my bed at home, but Carl didn't feel comfortable taking Mom to the bathroom, so I had to stay.

The hospital bed had two rather short rails on it.  I was skeptical if they would contain her if she wanted to get up.  Turns out, I was right.  Despite telling her she had to let us know if she needed to get out of bed, habit and medication won out and sure enough, at 2:30 AM Mom did indeed get out of the high bed all by herself.

Remember, Carl and I had a deal: for the first night he was going to take charge of listening for her so I could sleep with no worries.  Just as the nurse had said about using my 'Mom Ears' and how most mothers sleep lightly when they have a sick child, even with ear plugs in, I still had my Mom Ears on, too.  I don't know what woke me up, but when my eyes adjusted, I saw Mom teetering at the foot of the bed on her way to the bathroom.  I forgot to remove my CPAP mask and dragged the machine halfway off the table before snatching the apparatus off my head.  I whacked Carl and we caught Mom just before she fell.  

Talk about jump starting my heart.

We'd left the portable commode in the doorway and managed to get her seated on the toilet before she had an accident.  While I was waiting for Mom to finish, I looked at my phone's recording of the night's events.  Mom had sat up in the hospital bed for over five minutes.  Then she carefully slid to the floor from her high perch and tottered to the side of our bed.  She nudged Carl several times, but he never moved.  She turned to go around the end of the bed,  but lost her balance and half fell down next to Carl who was oblivious to the fact anything was going on.

She sat there for another few minutes before getting to her feet one more time.  She pushed on Carl's feet several times, but he never moved.  I know he's tired, but wow.  Apparently men do not have Mom Ears.  She was on her way to my side of the bed when I woke up.  Phew.  So much for getting any deep sleep.

Saturday dawned bright and early and so did Mom.  She was still feeling poorly but was up for the day at 6AM.  I got her up to the commode, back to the bathroom for her teeth and into fresh clothes for the day.  Carl was seated in the living room and wanted to know if she wanted to play solitaire on her old computer.  Sadly, she was willing to try, but lacked enough coordination to drive the mouse.  She also forgot how to play the game, too.  I left Carl patiently explaining how to put a three on a four and deal another card as I worked on making some breakfast for us.  

We all felt like we had hangovers, not that I've ever been much of a drinker, but if this is the way people who habitually drink feel afterward, I think they need a new habit.  After Carl and I ate, I took the chance to walk back home again and take stock of what we would need at Mom's to live there from now on.

I walked into my house and was amazed at how abandoned it looked after only a five days.  Everything was right where we'd dropped it, the sink was dripping forlornly.  I plopped down in my kitchen chair, put my head down on the table and bawled.  I cried and cried, it's a good thing we don't have any nearby neighbors, they would have thought the worst.  I gave voice to the anguish I'd been feeling for days and it wasn't melodious.

Mopping up my tears, I walked back up to Mom's.  Carl was sitting watching TV with Mom, both of them looking rather miserable.  Mom said her stomach wasn't bothering her, but she was also still suffering the lingering effects of the morphine/lorazepam combination.  She did not want to eat and the only thing I could tempt her with was ice chips.  

David called and asked what we needed, and I told him about the bed escape.  He went and picked up a bed alarm for me and some tiny ice cube trays, too.  He sat and visited with Mom while I got some more work done.

Saturday night's sleeping was just as fitful.  I opted to sleep on the left side of the bed this time since it is clear I wasn't going to sleep well, anyway.  Mom promised to stay in her bed and tell us before she got up, but of course, she forgot again.  Though it scared all three of us, I was glad the new bed alarm worked as promised.  I had just enough time to get to her before she had a chance to get on her feet.  Or fall.  Mom was up and/or restless at least six times that night.

Sunday morning dawned bright and beautiful again, but my mood was anything but.  Even though I'd only been at Mom's since Tuesday, I was starting to miss our home very much.  Mom's countertops and sinks are very short, I have to bend over to wash the dishes, the furnace is a virtual torture device, the bed is too small, the hallways and doorways too narrow and, well, I'll admit it, I was homesick. 

And I was more scared than ever about this whole situation.  She seemed to be improving a little from her darkest hours on Wednesday, but a complete recovery won't happen.  Am I capable of taking care of her?  Tears come far too easily these days, I cry over the situation we're currently in, I cry over what is to come, I cry when I think of losing her.  In short, I'm soggy most of the time.

I have reached out to my friends, acquaintances and medical professionals and have been given wildly varying opinions on my situation.  I value each contribution, I truly do, even though so many of them are polar opposites. 

I had walked down to our house on Sunday morning while Carl was sitting with Mom and came to the conclusion my anxiety would be lessened if I was back on my own turf.  Our house is newer and more accessible even though it is too small to get the transport chair around with comparative ease.  (As long as I steer carefully, we don't bounce off the walls too often.)

 I'd been debating moving Mom here for quite some time; we'd talked about it in the past in that way people have of thinking of the distant future, 'Someday we'll have to live with Mom.'  Well, you'd think I would have had a more solid plan in place after she's lived 96 years, wouldn't you?  Truth be told, I didn't.  Moving in with Mom was always an abstract thought, maybe I won't have to worry about it; I'll put it on the back burner.  Well, the heat on the back burner was now unbearable.  Time to get a plan.

I sat down and asked Mom if she would mind moving in with us.  She immediately shook her head; no, she'd be fine, we could all go home now. 

I shook my head and said, "Right now, you're getting better, but you cannot be alone.  We have to stay with you all the time.  But it would be easier for me at my house if that's ok with you."

"Well.......if it wouldn't put you out, ok, I'll move to your house.  You've been so good to me, I couldn't ask for a better daughter," she said, peering at me tiredly.

Blinking back yet more of those tears of mine, I said, "I could never have had a better mother, Mom.  I love you."

Those three words are still so foreign to Mom, they are just not in her vocabulary, and I could see how they affected her.  She closed her eyes and smiled.  Then she said, "I know you love me.  No one else would do what you're doing.  You have to love someone to do this much for a person."

So, the decision was made to move Mom here to our house.  Our bedroom is far too small for the addition of the hospital bed, so with David's help once again, we installed the bed in our living room.  I stayed at Mom's packing clothing, food, anything I felt we'd need right away while Dave and Carl were at our house, dismantling stained glass lamps and putting them in storage, removing the long library desk to the basement, putting the couch up against the window where the lamps were and moving all the other furniture around.  I had already moved all my exercise equipment, weights and other paraphernalia earlier in the day.

While we were in the midst of the moving preparations, Terry came over for a visit and to pick up the statuary Mom had finished painting for her.  We had such a nice visit; it was good to have someone there to break up the tension and calm my nerves, too.

Terry was very happy with Mom's renditions of her statuary and wanted Mom to pose with the angel plaque for a picture.  (For some reason, I'm having trouble uploading the picture, but I'll figure it out eventually.)

Finally Dave drove back to Mom's house and said, "We're ready to bring her down."

I buttoned her into her little wool coat and put her shoes on.  She teetered uncertainly when I had her stand up and muttered, "I can't believe how weak I am.  What is wrong with me?  Do you know?"

"You've been sick, and it's going to take awhile to get your strength back," I said quietly.

With Dave in front of her holding her hands and me behind her with my arms through hers, we painstakingly made our way down the same four steps that claimed my father's life in 2001.  David was encouraging her with each slow step.  Finally we were to the car.  For the first time ever, I had to help her lift her legs up into the vehicle.  

I locked up the house and crawled in the back seat, trying hard not to sob out loud.  The entire time we were descending the staircase, I was thinking about the last time my father left the farmhouse and also the first time my mother ascended those same steps in 1941 as a twenty year old bride.  Seventy-six years later, she was leaving for likely the last time.

We arrived at our house and finally had her installed in her Lazy Boy in my living room.  The move exhausted her and she fell asleep.  

David and I went back to Mom's house to pick up some of the things that I couldn't fit in the car.  When I walked in the house, I automatically turned when I entered the kitchen and expected to see her sitting in her painting station by the window.
 She'd only been gone ten minutes and already the house felt abandoned.  I sat down in a chair at the table and started to cry.  David reached over and held my hand and we both told stories and talked about our hopes and fears and the uncertainty.  David is not afraid to cry, and told me we have to get our emotions out, stuffing them is not going to help.

After a bit, I felt strong enough to get back to the tasks at hand, but simply looking at the cute little animal statues on her windowsill had me coming undone.  How she loves flowers and her knickknacks, everything is so sweet.

The guilt rose up to hit me; I'm being selfish, I'm taking my beloved mother away from the only place she's loved.


Beth said...

Praying for you and your Mom, Karen. You are a wonderful, thoughtful, generous, loving daughter. Your mom is lucky to have you (as you are lucky to have her). Best wishes.

susie @ persimmon moon cottage said...

Sorry to hear about everything that is going on with your Mom. I know that your mother appreciates having you and your husband by her side as she struggles. It is good that you can have her at home with you, even though I realize it is difficult for you and your husband. My father in law went down hill so fast when he went into a nursing home. Your Mom, you and your husband will be in my prayers. Take care.

FlowerLady Lorraine said...

Dearest Karen ~ This will be better for all of you. Your Mom may not have said those 'three words', but in other words she let you know she loves you. Her actions have also spoken loud and clear through the years.

In your own home, you will feel more peaceful and get more rest. She is in a home filled with love, peace and creativity. You are doing your best.

Love, hugs & continued prayers for all of you ~ FlowerLady

Mary@mydogsmygardenandmary said...

I am so sorry about your mother. Your post was so moving and it brought back memories of my mother-in-law and her sister. You are such a wonderful daughter and I know that your mother loves you very much.

I will be praying for your mother and you. I think moving back into your home will be better as you will rest more and you do need that. So take care my dear and please get some rest.

God Bless you and your family


Peonies & Magnolias said...

My heart goes out to you and your Mom. Y'all are in our thoughts and prayers. Take care.

Pamela Gordon said...

Oh Karen, what a time you have had. I'm so very sorry for what you are dealing with and pray your mother will be content at your home for now. At least you are in your own home and bed which is so much easier for you and your husband. It sounds like the meds are too strong for her, poor soul. Please take care of yourself and Lord willing, this situation will work for the better at your home. Hugs. Pam

Pam's English Garden said...

You are not being selfish, Karen. You are being practical. My prayers go out to you. P. x

Yurii said...

Hi! I love to read such kind of posts. You did a great job describing the whole mind process. If you are interested, please check: stained glass making. Small website with Tiffany stained glass technique. Take a look if you have a minute or so.

Carol said...

I have been reading you for years. what you are facing I have faced with not only my mother but my sister with cancer and my grandfather. I now take care of my husband with Parkinson's and other problems and work full time. The whole time i was reading this I was thinking-they have to move to Karen's house. So glad that you did. I know you want her to be in her house but really she will probably just sleep a lot now and rest and she will be ok. You need to be able to rest! You have to. You won't be able to take care of her if you don't take care of YOU! You are a wonderful person! Hugs and love and prayers for all! Carol

Indie said...

Oh Karen, so sorry about your mother. I'm sure it will be much easier to be at your place and then you can help your mom more easily, but I know it is such a hard situation for all of you. My thoughts and prayers are with you and your family...

Lana said...

Karen, it's been a while since I've caught up with my blog buddies, and I'm sad to read about such a difficult phase of life, but you're definitely so normal! My mother passed away from home when I was about 57 years old, from breast cancer. One thing is certain, the care-givers must be rested and in their own environment because they must be well enough to care for themselves AND the loved one needing round-the-clock care. I know this is much more complicated than you can write about, but know that the "right" thing is what allows you to be as comfortable as you can so you can do your best for her. Otherwise, the alternative is not can see the other option doesn't work.

Keep us posted. Much love and many prayers your direction.