Saturday, December 09, 2006


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 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 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.


  1. Marion,
    Is there a social worker or aging agency who could intervene and help with your mom's situation? I don't know how things are set up in your area, but when I worked with the elderly our center tried to do case management to coordinate services for the seniors in our village. We provided a lot of services like transportation to doctors and for groceries and did everything possible to keep the folks at home if that was their wish and if they could manage with help. Somehow we in the U.S. think the system up there is better, but after hearing your story, I am thinking differenty.

    I am so sorry to hear about this and to think no one let you know what was going on.

  2. As helpless as it makes me feel just reading this, I can't even begin to imagine how you must feel.

    I would recommend that you read the book, The 36 Hour Day, which is about dealing with Alzheimer's. I've read it from cover to cover so many times my copy is marked up and dog eared. You'll recognize your mother all through it, and perhaps find some new strategies to use to help you get her to do what needs to be done.

  3. The difference between what I'm dealing with through Hospice, covered by Medicare, and what you're dealing with, covered by National Health Care, is astounding!

    When my FIL was in the hospital recovering from bypass surgery, he had his nurse convinced that my dear sweet hubby was a drug dealer who threatened him regularly. She believed him!! It's amazing how they can manipulate gullible people who should know better.

  4. Marion, I am very sorry you and your family are going through this, it is hard I know. Please don't forget to take care of yourself as well.

    - Matt

  5. Marion,
    As life progress there are things that happen to us that shake our spirit and we want the issues to be resolved. I hope that peace returns to your being and that the uncertainty of what you are going through will help you in your own journey.
    I wish for you and your mother comfort and security. Let the guides in and use them.


  6. Sheila, yesterday I spoke with Home Care and they're going to try and upgrade Mom.And there is a fairly active Hospice group also. It is because I have moved away that I have difficulty finding groups.

    Our medical system at one time was excellent. But it suffered huge cutbacks in recent years, and care has lapsed badly.

    DB, thank you for the name of that book, I am going to get it through Amazon. I don't know what has happened to the mindset of the Nurses and Doctors...a patient that is very old just might be seeing reality a little differently.

  7. Matt, thank you for your words of comfort. I am well protected...I try and live in each moment, instead of the future. I want some answers; I will get them next week without doubt.

    I just have to wait until then, lol.

    Dave, yes, there is a lesson in this somewhere. And I have relied heavily on my guides, who have guided me towards avenues that make this journey easier.

    thank you for your continuing words of peace.

  8. It sounds like you're beginning to get a handle on some concrete ways to deal with this situation. I'm sure once you talk to the doctor that will help. The doctor will be a big help in getting you set up with Hospice, if she's ready for that. Of course, right now, you don't know what she's ready for, because they haven't told you anything!!

    I don't mean this to sound preachy, but for those friends who are keeping up with your situation, this is why everyone needs to get a Power of Attorney and a Health Care Proxy done for parents before their minds are clouded by old age or dementia. I wish, for your sake, that one of your family members had that with your mother. Then you could legally override her decisions and force the medical people to deal with you, instead of her. Well, I should say, that's the way it is in the US, at least.

  9. Absolutely concur with you on the P of A, DB. One of us has a very limited financial Power of Attorney with the bank...Mom would not listen to our advice for a full P of A, and never designated anyone.

    So here we are...hopefully, I can convince medical authorities on Monday that we need questions answered! And thanks for this...I may be able to persuade Mom to give us Power of Attorney now.

    Yesterday, I convinced her of the need for an overnight caregiver, and the need to have her groceries delivered, instead of haphazardly relying on one of us, because she didn't want to pay delivery bills, lol.

    It always happens...I get raring to go...and then the weekend happens. And places are closed, etc. But it is a great cooling down period for me.

    Mom is staying alone overnight, and constantly gets tangled with the Oxygen tubing in her power wheel chair.

    The Nurse never did arrange anything with Homecare; when I phoned the next morning, they had no idea her situation had changed. So she gets little further help there until Monday.

    After spending the day with her yesterday, I can't see her taking care of herself during the day. It is through sheer will, still, that she has been able to do it for the last couple of days. But I see her will running down...she is giving in to the inevitable. Watching this is the saddest part...when the will to fight for some sort of life, leaves.

    Thank you so much for your wonderful thoughts and suggestions, DB!

  10. Hi Marion --

    For some reason, I am usually unable to comment on your blog.

    I just caught up with a few entries and am sorry for what you are going through with your Mom. We are always told universal health care in Canada is such a great thing, but it seems like you are hitting every brickwall they have! I hope you find out soon the answers to your questions.

    Take care and know that others are thinking of you and sending you strength.

    Dee (Mrs. Cleaver)

  11. Mrs. Cleaver, I posted your comment here today...thank you for your good wishes.

    I will continue today, and will see if I can find some answers.