Wednesday, February 22, 2017

What's Next? Part 9: Caregiving

So much has happened since I last wrote.  To put it mildly, I'm overwhelmed at the moment.

Back on February 9, we were anticipating a doctor visit for Mom on Friday to discuss our next move.  Luckily, the pain reliever the emergency room doctor prescribed relieved much of Mom's discomfort at night and she was able to get some sleep.  

Carl was able to come along with us to Mom's Friday appointment so he could hear first-hand what was said.  Dr. W came in the exam room and asked Mom how she was feeling.  Since the Tramadol was working yet, she told him she didn't have a bit of pain. 

"Why did you go into the ER again on Wednesday?" he asked.  

Mom looked to me for the answer.  I told him how Mom had been in too much pain to wait for a February 14th appointment and that the vascular surgeon told us to go to the ER for some more tests.  

"The surgeon's report states there is nothing he can do," Dr. W said.  "There is too much plaque and calcification in the stomach and intestines and the disease is far too progressed to attempt a repair."

Of course, we knew this already from the ER visit on Wednesday, sadly this wasn't news to us.  

We all sat in silence while the doctor viewed his computer screen.  Eventually, he rolled his chair over to Mom and asked if he could push on her stomach to assess any pain.  Mom said it didn't hurt a bit to have him press anywhere.  

The doctor listened to her heart and lungs and sat quietly for a minute.

"Is hospice our only option?" I asked nervously.

"I'm not ready to say your mother is going to die in six months," the doctor said.  "I would like to set her up with gastroenterology and have an endoscopy performed to look for problems in the stomach.  She may have an ulcer we don't know about."

I was taken aback......on Monday this same doctor had suggested hospice and it took me quite some time to accept it was the only option.  Now he was saying he wanted to have a camera put down my mother's throat?  I wasn't having it.  

 "If you thought she had an ulcer, why didn't we do something about it back in October of 2015?" I asked.  "She was in better health then, but she's been complaining of the same ailment since 2013 at least."

The doctor didn't really have an answer; on his way out the door he said he'd be sending the nurse in to make an appointment with the gastroenterologist.  He made us an appointment with the palliative care nurse practitioner to see if she could provide pain relief if we decided to go through the treatment for the possible ulcer.

We took Mom home and debated our options.  I have to admit, I was stumped.  I still don't understand his abrupt change regarding hospice when it was his idea earlier in the week.  Luckily, the Tramadol was still working and Mom had no pain.  Sadly, she also had no appetite, either.  But she was happily back at painting a plaque for Ann.

Ann stopped in on Saturday (the eleventh of February) and we went skiing.  The snow was very sparse in places, but it felt wonderful to be out and about.  We were outside for well over an hour.  Ann had to leave after dinner, and Carl and I were invited to a card party.  Checking on Grandma via the Grandma Cam many times, I was always happy to see Mom painting away.  

On Sunday morning after going up to see Mom, Carl came home and said she was still feeling good and had almost completed Ann's garden plaque.  We decided to take a road trip to Wausau.  Joel promised he would keep an eye on the Grandma Cam while we were gone.  We had a lovely day; there was a stained glass Tiffany exhibit at the museum.  We'd been there in December with Ann and Joel, but wanted to see the lamps and windows one more time before they leave.  On the way home frequent checks of the camera showed Mom going about her daily life, so we took yet another chance and stopped in to visit two dear friends of ours that live in the area. We ended up playing cards until almost 10PM.  It was a day I will always treasure; I knew it was the calm before the storm.

The next day, the Monday before Valentine's Day, Mom was still feeling ok, no pain, but no appetite either.  No change, really.  I received a call from hospice, wanting to know if we were interested in signing up for their services.  The representative came out to talk with us in the morning and it sounded like an option, but we had an appointment in Green Bay with the palliative care nurse practitioner in the afternoon. I told the hospice person we'd get back to her afterward.  

One more time, off to another doctor's office we went.  The NP looked at Mom's test results, the vascular surgeon's opinion, and shook her head sadly.  

"Your vascular surgeon said there's nothing he can do," she said, slowly.  "I'm sorry to say I think hospice is your best option.  There's no cure for this condition."

"Do you think she should have an endoscopy?" I asked.

"No.  I agree with you; there's no point in putting her through more tests.  Even if she did have an ulcer, treatment for the ulcer won't fix the underlying stomach issues.  Hospice would be helpful for you both.  If you want, I'll cancel your gastroenterology appointment."  

I sadly thanked the NP and Mom and I left. 

"Where are we going now?" Mom wearily asked.


"Good, I'm getting really tired of all of this running to doctors," Mom said.

The next morning, Valentine's Day, I was on my way to Mom's on my daily trek to check up on her and to be there when the hospice nurse came back to sign Mom onto the program.  The doctor told me not to give her heart medication any longer; she wasn't eating much so the pills would sit heavy on her stomach.  

I was walking down the road when I heard a vehicle coming behind me which turned into my driveway.  A man got out of the truck and took two gorgeous vases of flowers out of the back seat.  

"Karen!  I have something for you!" Roger said.  Roger is the custodian of our church. 

"Flowers?  For me?" 

"Yes, for you and one for your Mom," he said.

 "Who sent the flowers?"

"I can't tell you, it's a surprise.  You'll find out when you open the card," he smiled. 

"I was just on my way to Mom's," I said.

"Would you like to ride up there with me?" Roger offered.

I climbed into his truck and rode in style to Mom's house.  We sat and chatted awhile; he also has elderly parents who are in poor health though they are both now in a nursing home.  It's not a road I walk alone.  I thanked Roger for the ride and let myself in at Mom's.

Mom was so confused by my showing up with the Mystery Flowers.

Once I uncovered the arrangement and read the card, we both knew who our secret admirer was: my dear friend Terry.  Mom had been doing painting for Terry all winter, and what a blessing that was for Mom, she was thrilled to have the work to do.

At ninety-six, this was the first bouquet of flowers Mom has ever received.

And at 58, this was also the first bouquet for me, too.
The hospice representative came around 11AM and signed Mom into the program.  We were hopeful we wouldn't need their services for quite some time.  

On Wednesday, I walked up to visit with Mom again, like usual.  We had a nice visit and watched some TV together.

Finally, at 1PM, I decided it was time for me to get home and get some work done.  The weather was nice and I decided to take one more chance at skiing since the forecast (which turned out to be correct) was calling for temps in the fifties in less than a week.

I had to walk a bit to find snow since our farm was almost bare, but the neighboring farm had some along the woods, so I crossed the line fence and skied for an hour. 

I stopped to take a break and catch my breath.  I decided to check the camera on my phone and saw Mom was bent over in her chair.  I was surprised since she hadn't said a thing about pain for a few days.  I quickly skied the mile back home and went up to see her. Seeing how much she was hurting, I picked up my phone and called the hospice number.  Less than twenty four hours after we signed on, we were in dire need.

Since we were new to the program, there was an understandable amount of scrambling that had to be done in order to get us some help.  The closest nurse was about two hours away.  Mom hung on with the cramps and both Joel and Dave came when I called them.

The nurse arrived by 6:30PM and immediately sent in an order for a courier to bring out pain killers from the hospital.  We had to wait another hour for the medication to arrive.  Mom had to be given what for her, was a massive dose of morphine and anti-anxiety med in order to get the symptoms under control.  At 11PM the nurse left for her next call with a promise to call me in a half hour for updates.

Dave had gone and bought me a cot to sleep on since Mom's couch is too short for me.   He also drove me home to pick up my CPAP machine and other stuff I needed.  Both Joel and David had to get some sleep.  Carl wasn't feeling well, so he was already in bed at our house.  I was alone with Mom.

Ann came after work to sit with me through the long night.  Ann was going to stay awake while I slept, bless her heart.  But my anxiety was running far too high.  I did lay down on the cot but found myself monitoring Mom on my cellphone.  

Ann left for home at 6AM and I went back to my vigil.  The time stretched on and Mom didn't move much.  She was perilously close to the edge of her bed but I didn't want to wake her.  I sat on the kitchen chair and waited.

At 11AM, another hospice nurse, the one we were to be assigned to, called.  She said she'd be there in an hour.  At noon, Mom was still out of it and the nurse went in the bedroom to wake her up.  

It was a pitiful sight.  Less than 24 hours earlier, Mom had gone up and down the steps in her house without as much as second thought, but now she was struggling to prop herself up on her arm. She was completely confused and unable to say much more than, "I'm so embarrassed."

Imagine waking up from being heavily drugged and finding a stranger peering into your face, asking you questions.  I felt so bad for her.  She'd been asleep since 11PM the night before, the bed was soaking wet, she was sweating profusely, it was awful.  I helped her get up to go to the bathroom to change her clothes, but she couldn't walk.  It took the two of us to get her to and fro, and of course, I was wiping my tears away constantly. 

The nurse said to me, "Are you sure you can handle this?  Wouldn't you rather go back to being her daughter instead of her caretaker and being responsible for all of her care?  You can have all the cameras you want in her house, but from now on out, she will need 24/7 care.  She cannot be alone."

I had to admit at the moment I'd have given anything to just be her daughter again.  This was a nightmare.  

Mom was confused for the rest of the day.  She wanted nothing to eat or drink and was in and out of sleep.  I had a doctor appointment and an IV treatment for my Lyme treatment in the afternoon and though I should have cancelled it, Carl wouldn't hear of it.  It is very hard to get in to see my doctor, he is in high demand.  We had to leave by 1PM.  I made a quick phone call to my dear next door neighbor, Gloria, and asked her if she could sit with Mom just until Joel could get here from work.  Bless her heart, she was available.  

Carl told me to try to sleep in the car on the hour drive to the doctor, but sleep wasn't possible with the goings on in my brain.  When I arrived at my appointment, my blood pressure was a 'tad' elevated, 202/103.  The doctor wanted to know what was going on and when I explained the situation, he understood.  He also said it was a good thing we got hospice involved, and to remember if this situation becomes untenable, that a nursing home is always available.  "If you become more ill, how will you care for your mother then?  Sometimes we have to do what is best for ourselves even if it seems selfish to others."

As the doctor was talking, big fat tears were sliding down my face.  I hadn't gone home to change before the appointment and was still wearing what I'd slept in the night before.  I looked a fright and felt much worse.

The doctor also said that stress is very hard on the immune system as is Lyme disease, so the fact I'm not making a lot of progress physically is more than likely due to my lifestyle at the moment.  I have to figure out a way to balance all of this and soon.

I had my IV treatment and sat watching the second hand on the clock tick by.  Joel was staying with Mom and I was wondering how it was going.  Plus, Joel has Abby and little Audrey at home waiting for him, too which made the time go even slower.  Finally, the hour was up and we were back on the freeway headed for home.  

I texted Joel to see how things were going and he said he was sorry, but she got out of her chair and fell down when he turned his back for a minute.  I know he felt awful, but this is the nature of aging and illness; two days before she was as steady as a rock, but with all the morphine lingering in her system, she was still incapacitated.  She survived the fall with no injuries, thank goodness, she's still tough.

When I got home, she was sleepy and not at all hungry.  I thanked Joel for staying with her and he was on his way home to his family.  Carl and I sat down in the kitchen after I put Mom to bed and tried to figure out a strategy.  Since I didn't trust her not to get out of bed and the cot was too long for the kitchen, we pulled a Lazy Boy out of the living room for me to sleep in.  I put my CPAP machine on her kitchen table and propped myself up in the chair for my nighttime vigil.  Carl took what was supposed to be a short nap on the cot, but fell asleep until 4AM.  When he woke up he was stiff and miserable and had a full day's work ahead of him.

I didn't sleep much at all.  The CPAP mask kept slipping and making squeaky noises all night which would wake me up every time I dozed off.  Mom was up and down several times that night.  Every time she woke up she was confused, why was I there?  What happened to her?  Why am I so weak?  

Every time I'd put her back in bed she'd say, "Ok, you can go home now."

I'd kiss her on the forehead and tuck her in.

The next three days, from Thursday to Sunday were just a blur.  The social worker came on Friday and talked to me again, encouraged me to get some sleep and asked what I needed.  I was too groggy to know what I needed.  I haven't experienced this much sleep deprivation since Joel was a baby.  Everything seemed like it was moving way too fast and yet far too slow.  

"Lucille," the social worker said, "Do you want to stay in your own home or do you want to go to a nursing home?"

"I want to stay here," Mom murmured.  But then her head came up, "But........I don't want to be a burden to my daughter."

"Ok, you'd like to stay here, that's good.  We can do that.  We just need to come up with a plan of action," the social worker said.

She proceeded to get on the computer and order a hospital bed, commode, transport chair, diapers, cleansing cloths, and a bedside table.  She also said if I was too tired, she would see about providing me with five days of respite care at the nursing home so I could get my act together; she'd be back to give me the results in an hour or two.

By this time, Carl was home and I wanted nothing more than to go home and get something to eat and maybe, just maybe, lie down on our waterbed and sleep.  I waited for two hours at Mom's and when the social worker didn't come back, I walked home.  The sun felt so good on my back.  I put a piece of toast in the toaster and was just setting out a plate when the phone rang.  It was Carl, telling me the social worker was back and needed to talk to me.

I put the toast down and looked longingly at my bed; put my shoes and coat on and walked back up to Grandma's again.  By this time the home health equipment company was there delivering all of the above furniture and as I walked in the door I bumped into a courier delivering more medication.  The social worker and Carl were standing in the kitchen; we all shuffled from side to side as people needed to get in and out.

Apologizing profusely, the social worker said she was wrong, the local nursing home did not offer five days of respite care.  They did offer fourteen days, however, but the cost was $8000 up front.  Huh.  That's a trifle steep, I thought.

I imagine the high price is to discourage people from making the nursing home be a temporary fix; they want people to live there, not visit.

I really don't remember much more of what the social worker had to say; it was a blur.  In due time all of the medical moving personnel left and so did she.  We were left in the gathering darkness to contemplate how our life had changed in less than two days.



Tomato Thymes said...

I am so sorry that this has been so challenging for you and your family. Did the social worker come
Up with alternatives. Home health care aides for the 12 hour night shift or other options? Ask her to assist further with a plan.

FlowerLady Lorraine said...

Dear God ~ Give Karen the strength she needs right now to take care of all that is going on in her life.

Sweet Karen ~ I am praying you will get some much needed assistance from Hospice and home health care. Do keep us posted when you can.

You and your Mom have been 'troopers'.

Love, hugs & prayers for you and your whole family ~ FlowerLady

Beth said...

Your mom looks so pretty as she admires her beautiful bouquet. I know she is a special person in your life and this situation is difficult in so many ways. Make things happen that can give you some rest. You cannot do 24/7 without damaging your own health. Ideas that may help you and make sure too that your mom has the help needed: 1) Is there an inpatient hospice available? 2) Ask the hospice who are helping if they can provide 24/7 care; if not, what is the maximum number of hours per day they can provide? 3) If they only do sporadic visits, hire a caregiver from a home health care agency, at LEAST for overnight hours. Then you can go home to your waterbed (I have one too! Love it!) 4) Her church or yours - do they have volunteers who can come in and relieve you? 5) Do you have power of attorney (POA) for your mom? If yes, you can administer her funds and write checks on her behalf. If you need to, get that respite care for your health and sanity, using her funds. This is her time of need, no reason to not use her funds for this type of thing. Praying for you and for your dear beloved mom. So sorry this is happening.
Hugs and blessings, Beth

Sue said...

Karen, I so wish there was something I could do to lessen the "angst" of this time you are going through. Your mother--she looks so sweet. It's horrible what we must go through in the later years thanks to "modern medicine". Doesn't seem an improvement, does it>
I'm thinking of you often. I hope you have the strength necessary. Hugs!!

Karen said...

Tomato Thymes, thank you! I've been consulting with hospice and reviewing my options. :-)

Rainey, thank you for the prayers and love. :-)

Beth, thank you! There is not an inpatient hospice available that I know of and they cannot provide around the clock care. They did give me a list of 26 private home care agencies to choose from, but I will have to do my homework and find out what each one has to offer. Hospice does have volunteers who can come for a few hours at a time, but usually no more than twice a week. Yes, I have POA for Mom, thank goodness. :-)

Sue, thank you! I'm humbled to know that people are pulling for us through all of this. :-)

Peonies & Magnolias said...

Karen, y'all are in our thoughts and prayers as you travel this very hard road. I can't begin to imagine how hard it all must be right now but please take care of yourself!!

outlawgardener said...

Oh dear Karen, what a difficult and awful time you're going through right now. I'm so sorry and continue to hold you and your family in my prayers!