Dignity

Many years ago, in my youth, I believed that when my time came to die, I would do it with dignity and grace.

In my death scenario, I thought I would lie quietly in my bed, giving my last thoughts to my family and friends. When it was time, I thought, in my idealistic youth, I would just drift off on the river current that would take me to the next step of my journey.

It seems I might have been wrong.

I am watching my mother's body husk breaking down. She has had so many heart attacks I have lost count; her lungs are filling with water. There are tubes suddenly sprouting out of her body, a new one each time I visit. Her organs are giving out.

What to me seems like terribly invasive procedures...is to the medical staff life-giving procedures. I understand their point of view...they have promised to save lives; not hasten death. But, to me, a daughter watching her mother...it seems inhumane.

So I let my mother speak. I hear her complaints; I would feel the same. I use much Reiki with my mother, as does Graham...Mom says Graham chases the anger and worry out the door. She has told me this many times, although she looks perplexed when she wonders about it. A long time ago, my mother agreed to receiving Reiki energy from us...she doesn't remember this now. And she says, at this point in her life, she's not about to learn.

She only knows it works.

I let Mom speak about her impending death. She tells me to be safe...that she doesn't want to have to worry about me after her death...she says she hopes it is time for peace then. We laugh, each of us understanding that a mother's worry about her children transcends time and space and probably, eternity.

We work on letting go of her dream (so like mine!) of falling asleep quietly, for the final time, in her own home, her family surrounding her. I tell her I was so proud of her immense courage over the last year, when she gathered herself together enough to find the independence she had never had in her lifetime. I tell her she did well; now it is time to let herself be taken care of. It is time to not worry about what to have for dinner that the caregivers would know how to prepare, to not worry about her money and where it was going...to not worry about how she was going to be able to answer the door, or go to the bathroom...when nobody was there.

She needs hospital care now...attacks against her body are appearing with regularity. Sadly, she agrees. But hope is required...I tell her of the walks we'll take in the beautiful gardens surrounding some of the care homes. I tell her of watching Koi in the gardens where my father in law spent his last days. I tell her of the peace we found there, of the long philosophical chats we had.

We may not have time, Mom and I, to have those lovely walks amongst fields of flowers, so we have them now...with beeping machinery, dinging bells, constant interruptions...surrounding us. We have had a year of constant conversations; I understand her as well as I am ever going to. I understand the face she shows me; Mom loves flowers and gardens and scenic views. So I take her there, to the garden where I grew up...to the old family home.

Frown lines disappear slightly, she is more at ease as she discusses the plants that I remember, the problems she had with them and how the flowers always made up for the care. She laughs and says, Like kids!

When it is time for me to go, she tells me to go quickly. My mother has given a No Resuscitation Order...each time I leave, it may be the last time I see her alive.

She points a shaky finger at me and attempts to use the gruff voice all her daughters recognize so well...Don't ever, ever forget I love you, she says...

And I point my finger right back at her...and say...Don't you ever forget I love you!

We stare at each other.

Standoff.

And I turn and leave...before Mom's tears overflow, leaving her with whatever dignity she can still muster...

Discharged!

I sit and write this at 5:30 am; after a sleepless night, tossing and turning, and it feels good to finally be up.

My mother was discharged yesterday afternoon. A Nurse called me; the Doctor said there was nothing more to be done...Mom may as well go home. But she would have to be on oxygen, and would be set up with a tank.

I asked the Nurse...how could this be? What was wrong with Mom? She halted in her litany of instructions for Mom's care...and said...Nobody has spoken with you? I said, No. She said that was bizarre.

When Graham and I visited her two days ago, Mom wanted to go home. We assured her that we would take her, when the time came. Mom was still on a catheter, and on oxygen. I tried to find her Nurse; she was unavailable. But I spoke with another, who said she did not know anything about my mother, since she had just arrived on the Ward, but that she would send Mom's Nurse to me when she returned.

Gray and I waited; it became obvious Mom was tiring. Once more I wandered the halls in search of her nurse, once more I had no luck.

My mother seemed slightly better, the swelling in her face had receded a bit; she seemed mostly lucid...but it is hard to tell. Mom's very, very good at hiding her confusion; she presents herself as knowing exactly what she is saying, and she uses manipulation with great success. This is survival to her; she has learned this manner of behavior very well.

As we left, we told her that if she waited until Saturday or Sunday, Graham and I would take her home, if indeed she could be discharged, never believing that she actually would be. But we wanted to give her hope, we did not want to take that away from her, we wanted to leave her with something to look forward to.

As I spoke with her Nurse on the telephone, my mind became blank and my body stilled. I felt nothing...it was as if a flat line was running through my mind. I have felt this way, before, at times. I think it is shock.

Without any notice of any kind to the family of this aged, ill person, my mother arranged for this particular Nurse, when her shift was complete, to return to the hospital and drive her home. The Nurse had arranged Home Care to be there, and Mom had called a neighbour to turn the heat up in her home. Mom refused to let the Nurse call any member of the family, she would not give the telephone number of two other sisters who might have been able to help. The Nurse said she had to beg her for my telephone number.

She had already called my sister...the one who had her number down as contact person. This sister has been battling the flu; she was in bed with a migraine and sore throat. Mom had spread her demented poison well; she used what had worked before...nobody cared and nobody would help. My sister was not even able to take the call; her husband, who at the age of seventy-five and wracked with arthritis, was asked to set up the oxygen tank. He refused, knowing Graham and I had already said we would take her home on the weekend. He believed, as we all did, that the hospital would not discharge my Mom until family members could be there to take her home.

Especially when she was discharged with an oxygen tank, when she lived alone and only received care three times a day, for four or so hours spread over the three visits.

I had the presence of mind to ask...what about food? There was no food in the house...the fridge had been cleaned out. The Nurse paused and said she hadn't thought about that. Would there be a can of soup or something similar that she could eat until I could get there?

I stammered, I was not thinking straight or at all.

The Nurse assured me it was no trouble; Mom wanted to go home and she could not place her in a Taxi, with an oxygen tank. So she would drive her home, set up the tank, and leave her. I was to pick up iron pills, she would give her enough for the weekend. Mom was still in pain, she said, and Mom could no longer live without the oxygen. But Mom had managed to get out of bed by herself, and was as ambulatory as when she had entered hospital. I was to call the Doctor on Monday, if I needed more inform- ation.

I was being rail- roaded and there is no way to tell you how helpless I felt, how lost and without direction.

I asked...But how could my mother manage, how would she be able to maneuver herself when she was attached to an oxygen tank? The Nurse asked if we had thought of care homes. I said...Many, many times, but Mom refused and we cannot place her anywhere without her consent. The Nurse, becoming irritated with the huge complications of what she had assumed to be a simple thing, said...well, if she falls again, she will be back in hospital and then she would have to wait for a long term care bed.

What transpired between the Doctor and my mother? How did she manage to convince him that she was perfectly able to take care of herself? How?

Mom will use any tool...lies, charm and laughter, and careful monitoring of her confused state, to achieve her goal...and her goal was to return home right that minute, no matter what chaos she might cause by doing so. But how can a Doctor not see through this behavior...why did he not ever call us? There is no answer I can see, other than Mom's manipulation of the mind of an educated Physician.

One sister, who had not been called by the hospital, called my mother last night. She was the only one able to talk with gentle sense to my Mom, at this time. I would have called; but my sister called me and told me to take the night off, to rest, to return to the wars tomorrow. I was thankful for this...I did not want to badger my ill mother, and I was afraid I would have, I was afraid I would have lost control through my fear and anxiety for her well-being.

We don't know why she is on oxygen. We don't know anything about her health, other than that the Surgeon did not find anything more than Thrush in her throat. Is she still bleeding internally? Is this why she is on Iron pills?

When my sister called, she said Mom could barely speak, she was so out of breath. She said Mom told her she felt so nauseous and tired. And Mom told her that she was getting tangled in the oxygen lines when she attempted to walk to her wheelchair. My sister tried to tell her she needed twenty- four hour care; Mom refused, saying she knew how to take care of herself...there was no problem.

My sister was right when she told me to distance myself; last night, I had to accept that there was no more I could do to help Mom, if she did not want to help herself and work with us, instead of against us. She has convinced herself we don't care...such a false assumption, I can't even begin to tell you.

My mother, I believe, has finally fallen victim to dementia. Confused before, aged and forgetful, the black cloud of dementia sits on her shoulders now, colouring everything with counterfeit deception.

Once more, I will travel today, once more taking up cudgels on my mother's behalf. Once more, as my mother declines, I will try to convince the caregivers that she is not herself, no matter how well she hides her confusion and illness.

We have decided that we must hire twenty-four hour care for my mother, whether she agrees or not. I will have to make her see, somehow, that she must allow this. She pushes us away, now, in her frightened state. We are suddenly the enemy army.

But I have forged a new relationship, a better one from before, with my mother over the past year. I will use the tools I have in understanding dementia to defuse Mom's protests. I have hope that she will understand, after a night alone, that it is impossible for her to live like this.

But I am left with the questions. What was wrong with Mom in the first place? Did she have a stroke? Why is she suddenly on oxygen? Her breathing was fine before the hospital stay. What happened?

Until the Doctor deigns to speak with us, I have no answers.

Calling All Guides and Allies

Once more, today, I will travel to see Mom. I will attempt, again, to be a voice that will be heard...a voice that will make the medical system take heed.

I went to the hospital two days ago, fully prepared to do battle, as I mentioned in my previous post. But it was not to be.

When I arrived, I had only a couple of minutes with my Mom, long enough to see the red sign that said Nothing by Mouth. And then, I was told to wait outside her room, as Nurse after Nurse filed in. I waited outside, becoming more frightened by the minute. What was going on?

I heard a Nurse shouting at my Mom. My mom asked... Why are you screaming at me? And the Nurse, who had blanketed all old people as deaf, said...oh, I didn't know you could hear. My blood was rising.

My mother is having difficulty breathing...she is on oxygen. I heard the Nurse ask her...Why are you having trouble breathing? My Mom, getting more confused and upset by the minute, said...I don't know. And we don't know; it's one of the reasons she's in the hospital.

I pushed myself into her room, unbelievably angry, and yet feeling totally sure of myself, something that is not common for me in an angry state. I saw them make my mother walk to the wheelchair. It was an accident waiting to happen, especially in her very weakened state.

I said...My mother rarely is able to walk without help. The Nurse totally ignored me, looking anywhere but at me, standing right beside her...a member of Mom's family. And she asked another Nurse...is she able to walk? The other Nurse didn't know.

Mom, who had a catheter draining urine, got tangled in the tubes as she tried, so hard, to do what the Nurses wanted. Her face screwed up in pain, her breathing becoming extremely unstable, she managed to seat herself. She looked up at me, her confusion and anxiety so clear in her eyes. I could not help...once more I was pushed out of the way.

I walked out of her room, into the hallway. Another Nurse took pity and told me Mom was being taken for an Endoscopy, as she was bleeding somewhere, even though her stool showed no blood. They had to rule out stomach problems. My question, knowing how invasive this procedure is, was...Is there nothing else you could do?... thinking Ct Scans or MRI's, in my ignorance of medical procedures.

Kindly, the Nurse explained that there were certain procedures that had to be done, before a CT Scan or MRI could be used. Those were the rules, set down by the government.

I was told to come along with my mother to the Surgical Ward...as they needed a member of the family there. What would they have done, had I not been there? Perhaps, eventually, they would have called my sister, who has her name down as the contact person...and perhaps not.

The Surgeon spoke to my mother and I. I was frightened and angry, hating to see my mother so confused. She was convinced she had to go to the bathroom, not understanding about the catheter. The Surgeon told me, in very medical terms, most of which went completely over my head...that Mom was bleeding internally. She did not expect to find anything, she said, as Mom's stool showed no blood, but the test had to be done.

I was to wait in the Entrance area of the hospital, and she would see me after she was done. Mom asked, Can't Marion come in with me? No, she was told gently, she could see me after the procedure was complete. I left, feeling the Surgeon's compassion and being so thankful for it.

That's all it takes, you know, just a kind, understanding word, when the world turns upside down.

I sat in the Entrance waiting area, in shock and beyond feeling upset. I was numb and trying to think of any way that I could have helped her more, but none of us knew this procedure was going to be done, none of us were able to prepare her for it. It was the way it was.

The Surgeon found me, after a time, and told me that indeed, she hadn't found anything, other than a yeast infection in Mom's throat. I forgot to tell her Mom has been battling Thrush for a long time. This was not news.

The Surgeon told me Mom would be back in her bed shortly, and would receive a blood transfusion. Then I looked into her dark eyes, and she looked back at me, and shook her head, just as I shook mine. She rubbed my arm...that piece of compassion almost made lose it...almost, but not quite. My work was not yet done.

I waited and waited, walking the halls. I notified my sister; she came and waited, too. Hours passed, no Mom. The Nurses did not know what was happening, only that she was to receive a transfusion upon her return; that she would more than likely be very tired from the procedure and medication when she did return. If we wanted to see her, we should come back after the dinner hour.

Another day has passed. I went home, finally, without seeing her...it was dark and I had to drive over the mountain pass. Other than the Surgeon, so far no other Doctor has spoken to any of us. We have no idea what is being done or not done. We are in limbo, a terrible place to be.

I tried calling her yesterday morning. There was no answer. After various tries, I called my sister, who tried, too. She could not contact her, either. When she called the Nurse's station, she was told my mother was sitting in her wheelchair, and probably didn't hear the phone.

I don't know how much to believe from my mother, who is confused and certainly may not have her facts straight. But what my mother is experiencing is quite different from what the Nurses tell us...they say she is doing great...she is just fine.

When I was finally able to contact Mom, she told me she had been sitting strapped in her wheelchair for a few hours, becoming so cold that she finally attempted to undo her straps and climb into bed. She had heard the phone and was sorry she couldn't answer...she had been unable to reach it or her call button.

She was chastised for attempting to climb into her bed.

She told me about seeing such awful things. She asked me...they were nightmares, weren't they? These frightening spiders and things I see are not really there...are they? She says she would like to talk about these things...but nobody has time...they rush away. Her doctor is new...he has only seen her once, when he had to lift her into her wheelchair from his handicapped parking space. He does not know her words are not garbled, as they are now.

He does not know that her face is not usually misshapen from swelling. He does not know that she does not have trouble breathing, to this extent. He does not know that Mom was rarely confused, before. He does not know that Mom used to be able to balance her checkbook, something she was doing as a matter of course just last week.

And he hasn't attempted to ask any one of us, either.

The province's papers and radio stations and television news are full of stories just like mine. The CBC aired a programme last week where a caller said that it was one of the most humiliating experiences of her life when she took a member of her family to the hospital. The family is treated as inconsequential. And care is long and drawn-out, with tests being used that are antiquated.

My mother will not live with me, even if I lived in a bigger home and had the ability to house her. She refuses to live with any of us. I would take her out of hospital in a minute, if I knew where to take her. Care homes are full, with year-long waiting lists. I have to find it within myself to try and get along with the system, as it is the only one we have...the only one where Mom might find help, as awful as the experience may be.

But Graham just called. He is taking the afternoon off work, he said. He will go with me to the hospital.

Graham is a Karuna Reiki Master...he uses his skills in defusing confrontation...in his job and elsewhere. He is a Scottish terrier when it comes to unfair and unkind practices. His mother is a Nurse...retired, to be sure, but she has worked in many of the province's hospitals and she still remembers very well a different time, when our medical system cared for the patient...and not the dollar. She has prepared him well.

I dreamt last night about Cat and Eagle...and I know Spirit is lending me all the strength I will require to get my mother through this. And if she does not, if this is to be her final illness, I will make sure that she is warm and that she knows that we care.

I promise you that, Mom.

Beware, British Columbia

They say the pen is mightier than the sword. I'm not entirely sure of that, since I've never used a sword, and I'm not the kind of person who writes about unfair political practices. But when those practices impact upon my family, the way they have over the past couple of years...it is time to try.

I'm not even a political person. I rarely listen to the news about the excuses these politicians come up with...the excuses are not new, after all. I am not well versed in who is who or what they do in the government...but I write now from a bruised heart.

I write in defense of my mother.

The medical system has broken down in British Columbia; it has been thus for a few years. I hear stories and have personal experience about people waiting and waiting for medical treatment; I hear stories about shoddy care when they are treated. There is a shortage of Doctors and RN's, LPN's and hospital workers, making trips to hospitals a dire last resort.

And it was a last resort for my mother, who is frightened of anything that might smack of institutionalized care. She has fought hard over the last year, since my Dad died, to stay in her own home. She has care workers that come in three times a day, dressing her, preparing food, and doing countless other things for her, that in my absence, must be done...the chores of day to day living.

But, along with shortages in everything medical, there is also a shortage of home care workers. Inevitably, my mother fell, when she was by herself...many, many times. Sometimes she dragged herself across the floor to reach her bed, just so she wouldn't have to call an ambulance, or anyone else, for that matter. She thought she could hide how desperate her situation was...because she knew the next step would be a care home.

Eventually, sometimes she would be taken to hospital, by ambulance, after a fall. After being told she was on too many medications, after she was told that she could walk, if she only tried, after she was made to feel it was all her fault...she would be sent home. Sometimes at 2 AM.

My mother is 85. A grand age for someone who lived through World War II, widowed twice and divorced once, lived through quadruple heart bypasses, lived through the pain of a burst appendix in her seventies and countless other medical problems. When my Dad died, it was the first time in her life that she lived alone. Now there was no one who insisted that she receive proper medical care.

But Mom is a survivor. Sometimes beset by enormous fears, she would become crabby. She would tell me, I am crabby today...everyone bothers me. Most of her careworkers understood; some did not. And these workers, inexperienced ones, would place a complaint against Mom, prompting visits from her caseworker, who suggested to my Mom that a home would be the best place for her. Mom's greatest fear was becoming true.

Last week, after three falls on different days, Mom called me and said her back was hurting. I wondered about pleurisy, since she had suffered with that malady before. No, she said, the pain was different.

I live 40 km away from Mom and the roads were impassable for a time with snow and ice. I told her to tell her careworkers. She did. They asked her if her arm was numb. It wasn't, she said.
But three days of pain finally made the workers call my sister, to tell her Mom needed to be taken to the doctor.

The last time we took her to her doctor's, she fell out of the car and lay in the parking lot, in the gutter, in the pouring rain. Neither my sister or I were able to pull her up...her Doctor finally came out and lifted her into her wheel chair. My sister would not have been able to take Mom anywhere by herself...Mom's knees give out at the most inopportune moments. And it had already been proven that we do not have the skills required to pick her up.

My sister called an ambulance.

There is a black cloud that hovers over hospitals these days. People are made to feel silly, for fearing the worst, feeling fear, when illness strikes and one must go to hospital. People are not listened to...the medical people have no time. In Mom's case, some of her tests showed problems with her heart, and she had a compression fracture, from either osteoporosis or her many falls. She was kept in this time, mostly for pain management, we were told...and a heart specialist was called to see her over the weekend.

At first, she seemed alright, when I visited. In pain, but alright. There were moments when sharp pains appeared in her head. We told the nurses, who checked her blood pressure, and gave her pain medication. I stayed with her until the medication took hold. She was lucid and making sense, even through the cloudiness medication can induce.

But the next day, Mom started seeing things that were impossible. She insisted bugs, people she knew, and her grandkids, none of whom were there, were all around her. She phoned my sister, at eight o'clock at night, out of breath and frightened beyond compare.

I had made sure Mom had a telephone. But I could not get through. My sister phoned the hospital the next morning; they said Mom did not have a phone. My sister said she did, Mom had phoned her the night before and since Mom could not get out of bed....? Eventually, they found it.

By the time my sister, who had to wait for visiting hours (we had been told in no uncertain terms to not come to the hospital until 2 PM) saw my Mom, Mom was well on her way...seeing things and making little sense. My sister told the nurses, who had not noticed anything with my Mom. They said they did not know her...it was impossible to tell. Does this mean that the medical people know all the other patients under their care? But one LPN had noticed my Mom seemed confused that morning.

My sister phoned me, very upset. Our mother, she said, was not being taken care of...she was left in her bed with no one checking her, unwashed and frightened, looking worse than when she entered the hospital. When she told the nurses about Mom's sudden confusion, they said it was due to medication. When they checked, it was noticed that Mom had had no medication since the day before. And this is a lady in the hospital for pain management?

So Mom's sudden confusion had nothing to do with medication. But I remembered my father-in-law hospitalized three years before his death suddenly becoming very confused, telling us he had seen certain nurses having sex in the next bed, with butterflies flying around them. We told the nurses then, too...but it was not until we finally phoned his doctor, that they discovered he had hydrocephalus. Quickly, then, he was taken for MRI's and CT scans, and operated upon. He weathered the operation at the age of 89. This experience made me think...

After I spoke with Mom by telephone, she told me the nurses had asked her if she was seeing things. I asked, are you, Mom? No, of course not, she assured me...and then proceeded to tell me the hospital needed cleaning...there were bugs everywhere. And there was a dark man behind her head and one of her grandchildren was sitting by her side. This grandchild lives in Vancouver, and was certainly not sitting by her side. The dark man...he sounds familiar.

I phoned her doctor, who was too busy to speak to me, but his nurse took down the information, and said he would check her this morning.

I don't know if Mom has hydrocephalus; I only know that it is estimated that 14% of the elderly in care homes are misdiagnosed with it, giving the diagnosis of dementia. I am not a medical person, I only have personal experience with it. Untreated, death will occur. I know, too, that I am tired of the treatment my family has received.

Stymied, I sit here and write. After a weepy, frustrated breakdown last night, and a sleepless night, I am girding my loins, so to speak. I am leaving for the hospital in a couple of hours. I will wash her myself, I will make so much noise doing so, during visiting hours, that it will be noticed by every last person on her ward, medical or otherwise.

If my inappropriate behavior has me thrown out, or hopefully, jailed, I have told Graham not to get me out...but to send reporters. People who own pens. So angry now, I will speak with any and all...with my guides and allies fully in agreement.

Tell me, Mr. Premier, if it was your mother lying uncared for in a hospital bed, what would you do?