From the moment my sister came home from the hospital that Tuesday evening in January of this year until she passed away at 4:07 p.m., Feb. 19, hospice did not come through for us. They appeared to be over-scheduled, over-worked and under-staffed. Sometimes they were short with me – the caregiver – sometimes they were not.
I admit, I am somewhat OCD and have worked in management all my life. While I was always friendly and polite to these people, I still had someone I loved for whom I was responsible. I would have stood in front of a speeding freight train if it meant helping my sister. A couple of mean nurses would not intimidate me.
They were, however, always kind to my sister. Sometimes, however, it's not the words that need to be kind as much as the "care" that must be spot-on.
What a caregiver needs to know
The primary caregiver for a dying patient is the one person to whom hospice looks to for guidance and who the patient relies upon. Decision-making is now your responsibility. You now have the life of the patient in your hands. Everything you say and do, every decision you make has a bearing on whether your loved one suffers or not, dies quickly or lingers painfully, is comfortable or not, is well-thought out and researched ... or not; and comes from a place of love – always.
Most of us are woefully unprepared to be a caregiver. Most of us have families of our own, jobs, ourselves and our own health issues, job issues, and money issues we also have to cope with while we are trying to take care of a dying loved on.
The dying deserve the very best that the living can give them.
We are born into this world, loved, held, coddled, fed and lovingly cared for for years. We grow old, go off on our own, perhaps marry and have children and then grow old, requiring the same care we received as infants – to be held, coddled, fed, cared for ... until we pass on.
Why is that so hard? Why do so many shy away from those dying? It's not a fun process for sure, but every single one of us on this earth will die someday. It's inevitable. But that path, that journey doesn't have to be so difficult. While we often can't change the pain or suffering our loved one is going through, we can do whatever it takes to make them feel loved, protected and surrounded by a healing touch as much as possible.
We do, however, rely upon hospice to guide us in most processes of the dying path as we learn to care for our loved one – who trusts us implicitly to responsibly care for them.
Unfortunately, the hospice group we chose, which was local and located down the street from our house, failed us miserably.
Tricks of the trade
My sister had become too weak to get out of a chair, off the bed or even raise up from the toilet, very quickly. While in the hospital, the staff used a thick belt to place around her, tightened somewhat and providing an object to hold onto safely whilst lifting her.
If not done properly, you can hurt your patient. We had to request one of these belts from hospice as it was what the hospital therapist recommended.
Then, once we had the belt, that's all they would use to lift her – in the end – as my sister grew so weak, she was just dead weight, the belt caused undue strain on her body and thus hurt here whenever it was used. Yet hospice insisted on using it. By then, she was so thin, I would wrap my arms around her, lace my fingers together and on the count of three, with her arms around my neck, lift her to a standing position. This, my husband figured out without any help from the incapable hands of hospice.
Once we got her to a standing position – we would rest for a moment ... this is a GREAT time for a hug. That act provided many intimate moments for hugs that helped soothe my sister's spirit.
We would stand for a minute or so, simply hugging my sister and letting her get her balance, before shuffling toward the wheelchair or porta-potty. Meanwhile, prior to lifting her, we had to prepare everything ahead. The wheelchair was locked into a position easy for her to shuffle to and back up against so she could sit down. The porta-potty was positioned similarly so she could maneuver without pain.
All this we figured out ourselves with no help from hospice. Yes, it can be figured out. But why didn't that hospice staff teach the family how to do this so the patient never suffers through one mishap, one painful "lift?"
After the first day home when the purchased bed rails had not kept her from falling out of bed, we requested a hospital bed from hospice. It was scheduled to be delivered and set up the next day.
We cleared space for it and the deliveryman brought it in and set it up.
"Where are the rails?" I asked immediately upon seeing it. "It has short rails up at the head of the bed. How is that to keep her from sliding right off the side?"
The answer I got was that they would provide us with a bed alarm that would sound whenever my sister's behind left the bed and sure enough, it was EAR PIERCING!
The rails were situated near the top of the bed and at least a dozen times a day for weeks on end, my sister would scoot around that bed setting the alarm off every time she sat up or tried to get up from the bed.
She seemed to forget she was sick and would often just try to get up and go about her day.
My question still is: why did hospice deliver a bed with almost no bed rails to a patient who was an escape artist? The reason the bed was requested was because she kept falling out of bed.
Many times I got my sister to lay down for a nap and I would try to sleep too, only to have the alarm sound and by the time I reached her room, she'd be sitting on the side of the bed, head hanging low or she would actually be up, both arms out to the side trying to maintain her balance as she navigated the floor, attempting to walk somewhere.
When I asked hospice why the rails were toward the top of the bed, the nurse didn't know and didn't offer a solution except for the alarm.
An alarm doesn't help if the patient is already on the floor and injured.
We were never shown much of anything, unless we specifically asked. Days before Pris passed away and now completely confined to her bed, it was our overnight caregiver who showed us how to adjust the sheets on the bed and use them to shift Pris around in the bed, without her being able to heft herself to assist. She also helped us with a number of other useful tips for that stage in the dying process.
Bathing
The CNA hospice provided us with was wonderful. We really liked her. She had been doing this for a long time and was gentle with my sister and took good care of her.
She taught us how to bathe Pris once she couldn't get into the shower anymore – on the porta-potty. This enabled us to wash Priscilla's hair thoroughly and she could have an accident if she had to and not feel bad about it.
This gal brought us a small tube of Medline body lotion early on that smelled really great and, while not a natural product, it had ingredients that helped my sister's skin feel better. This woman always saw to it that Pris had a warm, soothing bath, the nice lotion, and dried her hair. She would use soft towels to dry her and dress her in clean clothes. She always treated my sister like the most important person in the world.
Pris had had rosacea for years on her cheeks and it always looked bright red and rather raw. Her arms had taken a beating (not literally) while in the hospital and the skin was dry, as were her legs. This lotion worked some magic on her and helped her feel much better after a bath. We ordered a huge bottle through Amazon and still use it for ourselves.
This gal was wonderful to work with. She would organize her visits to Pris so I could coordinate running errands or simply going home next door to spend time with my cats, unwind and watch a taped TV show or two.
It is so very important to get time to yourself when you are the primary caregiver. And those moments are few and far between.
The mask
The saga of the facial oxygen mask was a nightmare from the beginning. It would be what began unraveling care Pris received from the two nurses.
As I mentioned in an earlier blog, Pris was yanking the oxygen mask out of her nose constantly, and mostly without realizing it. She was getting less and less oxygen to her brain and through her body on her own by the day, so for a comfort level, she needed to get better oxygen.
At least that's what we were told. I knew that my father, who died from kidney failure, had panic attacks when he couldn't get enough oxygen into his lungs and he used the oxygen constantly – though he never yanked it out like she did.
A face mask was recommended, much like what you see in TV hospital dramas. One week later we still didn't have it. By Thursday of that week, we were told by Tanya, the young L.P.N., that the shipment had come in and she would bring the mask to Pris later that day.
By 4:45 that afternoon, with their office closing at 5, we still didn't have the mask in our hands. I was fretting and up until this point, my sister had not made any comments about hospice, preferring to let me handle it, but this time she said it all in one impactful statement.
"It's as if they don't care about you because you're dying and it doesn't matter anyway," she said.
Sad, but true.
It was my job to do what had to be done, even if it meant calling hospice another time that day. The receptionist said Tanya was in the basement going through the shipment of supplies and that she'd be by the house on her way home.
Shortly after 5 p.m., Tanya finally showed up and came in the house with the mask in her hand. I looked at it incredulously – it had a little bag hanging off the end of it. I had never seen anything like it.
Tanya tossed the mask in my hand, turned and started back out the door. It was, after all, after 5 o'clock and she was young, had her whole life ahead of her and somewhere to go.
I said, "Hey! Where are you going? What do we do with this?"
She turned around, gave an annoyed sigh and showed me how to attach the mask and she put it on Pris and left.
I shook my head and looked back at Pris who was gasping for air. The darn mask would not function properly. I took it off, put the old oxygen tubing back in her nose and pulled out my laptop. I went to Google and, using the name I found on the oxygen mask, did a search for it.
It was specifically for a certain pressured tank to be used in hospitals. I checked Priscilla's tank and she had nowhere near the pressure she needed for the bag. The instructions I found on the Internet were much more complicated than attaching the tubing to the tank's tubing and sliding the mask of her face.
What?
Beginning when Pris went into the hospital, I had kept a daily log of her journey, so I got out my journal and began to write.
Many may ask here why we didn't fire that hospice and get someone new. That question, in and of itself, is a loaded one.
When you are an exhausted caregiver and don't know what to expect or who to ask because everyone who seems to know the answer is the enemy, what do you do? Priscilla's doctor was on the board of directors with this hospice and the nurses all backed each other up.
My husband worked nights and the care for my sister took every waking minute. I didn't have time to start calling around to other hospice facilities to find someone knew. It also grossly upset my sister to have this discussed in her presence and I could not leave her side long enough to make a phone call.
I had placed a call to the social worker with hospice, who had promised at the beginning that I was to call for anything at anytime and she'd return my call or come over immediately. It had been six days and I still had not received a call back. I knew she'd gotten my message because the chaplain had run into me the day of the phone call and asked if she had replied to me yet.
My husband and I felt we were being vigilant enough with my sister and had the help of the overnight caregiver, so despite the failings of hospice, we were so close to the end with Pris that we felt we could stay on top of things. We thought it would be worse to try to change to an entire new crew of people at this stage of the game.
We made the wrong decision.
What you can do to make your loved one feel better
One of my passions is aromatherapy and color therapy. As an advanced certified Aura-Soma© consultant, I am well-trained in this special form of color therapy. I had also been dabbling in aromatherapy for years.
From the first day home from the hospital, I had brought all of my essential oils, blends and lotions to my sister's. I also researched and brought a specific Aura-Soma© bottle with which to treat Pris – a bottle that, full of essential oils, plants colors and oils, pure water, light, gems and minerals – an all natural product, would help to calm her and ease her emotional and spiritual experience.
I have what is called a Beamer Light Pen that is larger than a writing pen and holds a small vial of the Aura-Soma© bottles, with a crystal on the end. Light shines through the colors in the vial and the crystal and you wave the pen over all areas of the body – concentrating on the energy fields (chakras).
Early on I had Pris choose the vial she wanted and we used that right to the end. She especially enjoyed this ritual at the end of the day. She would get into her recliner, recline and relax as I used the pen all over her body.
I would use the bottle's liquid to rub her feet and work the reflexology points and finish up the session by spraying one of the many sprays – called air conditioners. These are the colors, quite fragrant, in a pump spray in which you can simply spray in the person's personal space. Some of them are named after archangels and Pris seemed to find it most comforting when I used the Archangel Michael spray.
I also used light essential oil blends for specific things, such as Priscilla's legs and arms. She had come home from the hospital full of bruises from needles and other bangs on her body. She was mostly skin and bones and bruised easily. I used a blend that included lavender, arnica and helichrysum, among other oils, to heal those bruises for her.
We continued all these rituals right until the point of her death.
Reading scripture and spending time in prayer also helped comfort her and brought me relief, as well as strength.
When she could still get out of the house with a walker, we went on a couple of drives. One day we went looking for eagles across the river, and were rewarded with several sightings.
I played her favorite Enya CDs and for several afternoons during the middle two weeks of her time at home, we watched the old PBS series from the 1970s, "The Last of the Mohicans." We had watched this together with our parents back when the series first came out. We saw one episode each day up to and including the seventh out of eight episodes. By that time, Pris could no longer comprehend what she was watching. I was not able to watch that last episode until two weeks after Pris passed.
Still, she enjoyed the earlier episodes and it helped us reflect on some memories near and dear to us from those days when we were both much younger and our parents were with us.
I cooked whatever Pris wanted within diabetic reason.
Nevertheless, she enjoyed her meals and found her sugar levels weren't so bad because she was getting balanced meals.
One week left to go
About 10 days prior to her death, Pris pulled hard on her catheter. We'd had so many problems with it causing her discomfort that it had resulted in a number of calls to hospice for a nurse to come over and reposition it.
We'd gone from a small bag to a large bag and back again, and learned how to maneuver the bag whilst getting Pris up from her bed or chair, rolled over in bed, bathed, etc. But by this point, she'd had a catheter inside of her for 30 days. It had to be uncomfortable.
On this Friday, I called hospice and told them the catheter was paining her again and her constant complaint was that she couldn't urinate.
Tanya, the L.P.N., called us back and was quite rude, "Listen Liz," she said. "I've had enough of this. I'm going to remove the catheter! I'll be there shortly."
I informed her that Pris had already decided to remove the catheter anyway, but Tanya just snorted and hung up.
She arrived and nearly yanked the thing out of my sister and left abruptly.
Little did we know, because we WERE so badly informed, that the lack of a catheter would be the cause of so much pain and discomfort within the next seven days.
In fact, the following Monday, with the constant complaint of having to urinate frequently with little voiding from her, the R.N. ordered an antibiotic for Pris to treat a urinary tract infection without taking a urine sample.
Since hospice never focused on the symptoms of congestive heart failure for a dying patient – looking instead for only listening to her lungs, and checking her edema – they completely failed to look for the symptoms of a woman also in kidney failure.
The inability to urinate is one of those symptoms.
Pris would spent her final 10 days having to urinate every few minutes and very little being voided.
After years of anticipating this last journey, the pain and suffering of all the years, the last hospitalization, the trials and tribulations of the last 2 1/2 weeks of being home in hospice care was nothing in comparison to what the next 10 days would entail.
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