When 2013 began, we thought it would be a fairly normal year. My sister Pris was failing, but she'd been holding on with the congestive heart failure (CHF) for eight years already. There was no reason to think this year would be any different, except that she might have to give up a few regular activities as she was slowing down.
Still, her hospitalization on Jan. 9 proved that what we all knew was coming eventually – at arrived.
As devastating as the news that your loved one is in the end stage of whatever disease he/she has is to the family, it is impossible to put yourself in the place of the person who IS dying. You can't imagine it and I've spent the last nine months reliving those six weeks from my sister's perspective and still can't get a handle on it.
Funny how you think ahead of time that you'll be completely in-tune with your loved one, but frankly, you are so exhausted during those weeks/months, that you are often just getting through each day.
Hospice Week One
With Pris coming home from the hospital on a Tuesday, the first week at home consisted of Tuesday night through Sunday. It was an easier week of course, because our brother and his wife were visiting until Saturday and my husband had taken a week off to help.
Pris didn't sleep well beginning the first night. We had already bought and installed a bed rail on her queen-sized bed – where she insisted on sleeping, but it failed her the first night.
We quickly learned that my sister was slippery as an eel. She bypassed the bed rail and slid down the bed until she could get out of it at the bottom. I found her sitting on the edge, rather chagrinned and wanting to try sleeping in her new recliner.
As a mother, though my son is full grown, I found myself once again sleeping with one eye open and all ears alert for the next four weeks. And I became totally exhausted immediately.
If there was one major accident that simply could not happen, it was for my sister to fall and break a hip or leg. Being in hospice care, we were warned, if she broke a hip, it would not be fixed because she was dying. She would have to live with a broken leg or hip until she died.
It became a tug of war between my sister who was becoming less lucid every day and her wanting to escape her chair, recliner and bed and take off by herself and me to protect her from falling.
Priscilla's routine was to go to bed at 5 p.m. and arise around 1 or 2 p.m. That wouldn't do for my body clock so I needed to get her to change her routine. She no longer had to care for herself and had the stimulation to stay awake later. Still, it was a work in progress.
Right away, hospice and the doctor failed us. The doctor had promised sleeping meds immediately and failed to prescribe them for the first night. However, we did have them by night two ... though they made Pris hyper instead of able to sleep. We never did get any prescription that helped her sleep at night.
By the second day, thanks to the failing bed rail and previous falls in her bedroom, we had hospice bring us in a hospital bed, which was delivered on day three, along with a bed alarm, porta-potty, wheel chair and oxygen.
What Does Hospice Do For You?
Hospice provides you with a thick notebook full of interesting information. Such tidbits include: what to expect physically/mentally as your loved one progresses toward death; what to expect from yourself as this occurs; how to help them along, i.e., tell them it's OK to let go. All of this information is very helpful, except for the fact it's almost impossible to find time to read.
What I needed to know was: what to expect from someone who is dying from congestive heart failure? We had instructions to weigh Pris every morning, take her blood pressure, temperature, check her blood sugar, and make sure she drank no less than and no more than 32 oz. of water. But we had nothing else to go on. What symptoms would she have as she progressed toward death. What might happen to her kidneys? What about pain medication and how to administer it? We never learned the specifics until two hours before she died.
Since she was diagnosed with kidney failure several years ago, Pris began having problems urinating immediately upon getting home. Thus began the catheter in, catheter out game between Pris and the hospice nurses for the next four weeks.
The catheter and her kidneys would be the most painful, heart-wrenching part of this illness and the nightmare of suffering caused by the hospice nurses.
A Brother Says Goodbye to His Sister
Needless to say, however, we got through that first week. Our brother, an Episcopal priest, gave communion and prayers over us all before he returned to his home on the east coast. We went through photo albums and told family stories around the kitchen table.
There was a lot of laughter and a lot of tears. Once there was five of us and now our parents were gone. Soon our sister would be gone and we would be two.
It would be the last time my brother would see his sister. To understand their tie to each other is to know that they are just two years apart in age. I am 15 years younger than my sister and 17 years younger than my brother, thus I grew up in a different decade, different times. Those two grew up in the 50s, with parents in a different place in their lives than they were when I came along.
It was a wonderful time for reminiscing. One for the record books.
Hospice Week Two
We entered this week with a visit on Monday by the R.N., the gal who checked Pris in on the first day home from the hospital. For the sake of privacy, I will call her Julie. She seemed very nice, but relatively clueless to what Pris was dying from. This being so early in the hospice game, I completely trusted her and relied upon her for advice and instructions.
Mistake number one.
By the seventh day at home, we'd already gone through several prescriptions of sleeping medications – to no avail. Nothing worked except to make my sister more hyper than sleepy. I was, by then, going on seven days with no more than one- to two-hours of sleep – on the couch or on the spare room bed – one eye and ear always open.
On Tuesdays and Fridays the CNA came to bathe my sister and cater to her every need. This gal was fabulous. She was knowledgable and took superb physical care of my sister. On her first visit, my sister's first Friday at home, the CNA presented Pris with a small stuffed goose. The goose signified the hospice group's motto that the patient leads the way, the same way one goose leads the "v" of geese flying behind him.
The gal had good intentions, but hospice never followed my sister's lead. The two nurses in charge of her care were completely clueless.
On Wednesday, the R.N. failed to show up. After several frantic calls with no results, I was finally informed that she wasn't supposed to be there three times a week. I conferred with my sister in-law, who had sat with me and the R.N. on Priscilla's first night home and taken notes – indeed – we had been promised visits from nurses three times a week, plus the CNA's twice a week visit.
By Friday I complained to the CNA, who informed me that there were major scheduling problems at the office and she would figure it out for me. To give the R.N. credit, she called me and said she'd provide me with a month-long schedule. However, she denied ever saying someone would be there three times a week, despite my reading back to her the words she said the night Pris got home.
The light in my husband and my heads was beginning to illuminate – oh no, we thought – this hospice group is oblivious.
Backtracking to Thursday ... the L.P.N. arrived, I'll call her Tanya, and we liked her right away. She was very young, pretty and bubbly. Still, she would turn out to be one of the major problems we would have in a very short time.
Whatever happened to my ability to size people up?
To this day I am so thankful for my husband who was able to stand back from the situation just enough to monitor everything and keep my head above the rising waters. He was and is an angel.
By that Thursday morning of the second week, I'd gone so long without sleep that I simply had to hire someone as an overnight caregiver. My sister agreed and I began making phone calls. By a stroke of luck, a neighbor happened to be a caregiver and came over immediately for an interview.
We liked her, the price was right and she was willing to start right away.
It's pretty sad when your biggest excitement for the day is that you'll get to sleep an entire night through.
What About My Job?
In addition to all this, I still had to deal with my job. We needed both our incomes to pay our bills. Thankfully, we lived next door to my sister and were able to look after our house and two cats while living with her.
My boss wasn't so accommodating, however.
Without getting into too much boring detail, suffice it to say that I had a passive-aggressive, manipulative boss who was more than willing to let me work from home the first two weeks while Pris was in the hospital.
We were in the midst of producing a 64-page magazine that was my total responsibility to design, layout and get to press by mid-January. I managed to get it all done by the end of the second weekend Pris was in the hospital. The result was probably better quality than if I had worked in the office with the day-to-day distractions of people milling about.
The Friday after she returned home, I went to visit my boss to propose several jobs we'd had on hold due to time constraints. Now would be a perfect time for me to pursue them, while I could work from home and while my sister slept (which she did during the day – a lot).
The boss and I made an appointment to meet at the office and discuss these prospects. I arrived on time and he was nowhere to be found. Fifteen minutes later he arrived and called several other staff members into his office for a meeting, neither acknowledging me nor apologizing for my having to wait, despite my leaving a dying sister home in a sickbed with someone else watching her.
Once he finally met with me 30 minutes after I had arrived, he announced he was uncomfortable with me working from home. This, after requesting that I DO SO in order to get the aforementioned magazine done. I am a hard worker and loyal to a fault. I never cheat at my time and always worked way over my 40 hour salaried week. I had never given him any reason to doubt my work ethic.
He denied ever wanting to accomplish the projects I proposed and announced that he was having a difficult time dealing with me being gone since I was the person he vented to when his day became too stressful.
He rested his head between his hands and just shook his head back and forth, asking me to come back somehow. "I just can't do without you Liz," he said.
For years he had been aware my sister was dying and we would reach this point in her dying process. He was well-informed about my life and I had a job that I could do very well from home and still provide quality work.
He sent me home with a request to provide him with job bids (that he'd already received from me a year earlier) and for me to work 30 hours or more a week at a half week's pay (20 hours pay) since I normally worked 45-60 hours a week at 40 hours pay.
I was furious that I had to not only deal with caring for a dying sister, but that my boss, who previously had shown great empathy, was being so selfish and manipulative.
It took only 24 hours of convincing from my brother, sister in-law, husband and sister, for me to decide to take an unpaid leave of absence.
Apparently, that is exactly what my boss wanted as he was under pressure to lay off two employees this year in order to cut payroll back. I was not on the original list of the two, but he had enough trouble making the decision to lay off the poor workers, so my time off permitted him to conveniently hold off on making a decision until such time I had to return to work.
We Settle into a Routine
During my sister's second week at home, we settled into a relatively easy routine. She awoke by 6 a.m., ate breakfast, and moved to the living room to watch the Today show. She would doze throughout the morning and have a snack around 10 a.m. Lunch was between 11 and 11:30 a.m., then a short nap.
We would hang out in the afternoon, watch videos, go through photo albums and talk. Dinner was easy and she was getting good balanced meals. Her sugar readings were good and by Wednesday she had dropped another 10 pounds in water weight thanks to the alkaline water system we had at home.
The third week rolled around and the routine continued fairly easily. We had the R.N. on Mondays and the L.P.N. on Thursdays, the CNA on Tuesdays and Fridays.
Early in the week we asked about a new oxygen mask because Pris was constantly yanking the nostril tubing out. We were informed that because she was a mouth breather, we needed a face mask and the R.N. placed an order for one.
Little did we know what an ordeal this would turn into.
If only hospice would take the specific disease their patient has and explain to the caregiver and family what to expect FROM THAT disease as time progresses, it would be so much easier on everyone.
The next blog – continued lack of training ... how to lift your loved one, diaper them, fix their sheets, dispense the morphine and more. And then the catheter – more nightmares.
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