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Since my Mother started her journey with brain cancer in the middle of January this year, she has been a patient in three different hospitals; one for diagnosis, one for treatment and the hospital in our hometown where she worked as a nurse for 38 years. The hometown hospital has made it easier for family members and friends to visit with her and has given her the opportunity to be cared for by the women that she worked with over the years. This is one of the few blessings we have experienced on this difficult journey.
Her hospital stay is prolonged and it is unlikely that she will ever return to her home, not even for a visit, as her husband of 55 years is resolutely stubborn about not letting her back through the door. I cannot fathom his reasons for this or his lack of courage to do what she would have done for him or any one of us if the situation was reversed. I have no power or say in the situation or this would not be occurring. She has received many cards over the course of her hospitalizations but they disappear quickly from her room to reappear on the dining room table at her former home. It is like a shrine; every light in the house is on waiting for her to come home but he won’t bring her there.
We have met many people along the way. Other women with brain cancers who have shared her room during the diagnosis and treatment aspects of her illness and other women who have suffered from cancer, falls, broken limbs or surgeries. Some were there for a day, some for a couple of days and some for a week or more. Other patients on the same floor in other rooms have also been very much a part of this journey. Some of these ladies have passed away now. Others had to give up their homes because they can only get 2 hours of Home Care a day and that isn’t enough. They have no one able or willing to take them home with them.
As I am a regular visitor, I have met them all and I have been thankful for the way they were so wonderfully helpful to my Mother and myself. They kept me apprised of her visitors and the kind of day she had as she can’t recall these things without difficulty. She has many flowers in her room but can’t tell you who brought them to her. Sometimes she can remember a bit here and there but, more often than not, it hasn’t crossed over from her short term memory into her power of recall. She knows everyone who visits and, if prompted that they were there, she recalls the visit. It is hard to watch her struggle with such a seemingly simple task. I think it may be more of a matter of so much time in hospital that time is running together for her. There are no demarcation points for her to navigate from. The mailman isn’t coming, the newspaper isn’t being delivered, there is no clock on the wall, the phone isn’t ringing, no appointments to be kept, no luncheons to attend, no visits to the hairdresser; all those little things that enable us to keep track of the time that we take so very much for granted.
My Mothers memory is very much intact as to past events but remembering what she had for supper 10 minutes later is beyond her, although I notice she can remember what the dessert was quite often. She is on steroids to prevent brain swelling and it has given her quite an appetite, you would swear she was on the Marijuana. The meals are very good there, the kitchen staff is a most thoughtful bunch. There were flowers on the tray with pink napkins for Mother’s Day and often some other little gift. I try to get there about an hour before supper so I have time alone with her and I like to help her with her meal. She manages quite well but her left arm is not functioning so a little help with opening packages is sometimes required.
The ladies who bring the food trays are kind hearted and have made sure to keep the kitchen on the floor stocked with Tomato soup for my Mother and treats for other patients as well. We have established a Tomato soup ritual, her absolute favourite. I go and make her a cup to enjoy with her supper and I make it just the way she likes it; add a little butter, some pepper and soda biscuits. It may seem a silly thing, but it makes her happy. It wouldn’t be possible without the thoughtfulness of these ladies. I must say though that the most popular ladies on the floor are the women volunteers from the Hospital Auxiliary who bring around the snack cart just before 8 pm.
My Mother has been in three different semi-private rooms so far and is now in the ward room, which is much more spacious, and provides access to an overhead lift. A lot of equipment is required for my Mother’s care right now. She has a wheelchair, a comfy high backed chair on wheels and they use a portable lift to take her for her baths and to the bathroom. I think she likes the portable lift as it gives her back a good stretch after sitting or lying down most of the day. Most days she is up and dressed. She gets outside onto a patio at the back of the hospital on nice days. She enjoys that very much and often has her lunch out there. I notice a big improvement in her when she has been outside for bit of fresh air and sunshine. My Father takes her out and usually both of them manage a nap in the shade from the trees that overhang the picnic tables.
The floor in the hospital she is in is for Acute Care patients and so far other family members, former neighbours, former classmates and family members of former classmates have been admitted. Some have stayed for a short period and returned home. Some have stayed for a short period, gone home and then returned to the hospital again. Some have been moved to Chronic Care facilities. For the most part though, they have gone to one of the rooms at the end of the hall.
This floor in the hospital contains 2 ward rooms with 4 beds each; 4 semi-private rooms with 2 beds in each and 2 private rooms. The private rooms are used for isolation cases or if there is a shortage of beds on the floor and if they are accommodating differing numbers of male and female patients. Most often, as I have come to discover, they are the rooms where people go when their death is imminent. The past two weeks were difficult, every day someone passed over, sometimes both rooms were in palliative use.
The sadness in the air is palpable at these times. The hall becomes busy with family and friends coming to say their final farewells. Trays of coffee from Tim Horton’s are common to see. The small Quiet Room across from the kitchen is full as the family takes shifts with their loved one. Someone brings in food so no one has to leave. Every second is a precious commodity now as they wait for what is coming. There is no denial, no emotional outbursts.
Stoic faces pinched to hold back their tears as the children and grandchildren come to say goodbye. The children, some young, some young adults, some grown adults all wishing to be anywhere but here, but they are here for their beloved Grandfather, Grandmother, Mother or Father. The reality of the situation is not lost on them.
There are many faces. The calm, wizened, resigned face of an old farmer who is losing his wife, being the rock for his children and grandchildren. Everyone is trying to be strong. They knew this was coming, but they did not know just when or that it would be this soon. The daughter with her mouth set so it doesn’t tremble, comforting her children. The sister, leaning against the wall, head bowed, hands on her legs, bracing herself for the final moments. Anxious faces looking in the doorway to see what is happening now. A group of friends arriving only to have their friend pass over as they entered the room. Nurses calmly, with grace and fortitude, coming and going from the deceased's room.
No doctor, the doctor is never there. The doctor only seems to come to pronounce the death. The family is gone quickly from the hospital. This seems to be the doctor’s job. Don’t grieve here, move along now. Sometime later, an older man in a gray suit with a kind, kind face comes off the elevator with a gurney. On the gurney is a scarlet body bag. He is the undertaker, come to retrieve the body and take the departed to the funeral home. Funerals are for the living. The deceased has no more worries.
In all this time, in all these hospitals, I have not seen one doctor tend to my Mother or any other patient, just nurses. I have seen two male nurses, but predominantly all of this patient care is done by women. Doctors are invisible in our health care system. I think now that they must get a cloak of invisibility in the same cereal box that their license to practice medicine comes in. Nothing like a stealth cloaking device to avoid Klingons; they should hang their heads in shame for their indifference and lack of dedication to their chosen profession. We need more nurses and nursing assistants. We need convalescent homes for people with short term needs. We need more home care so women don’t have to give up their homes and move to Chronic Care or a nursing home to languish until they return to a room at the end of the hall and exit in a scarlet bag on a gurney. We need more palliative care beds and hospices.
Where does all the money go? Hospitals and Health Care are like big boats, they are holes in the water that we throw money into with too many captains and not enough crew. It has to change.
Future Endeavours is available quarterly as a permission-based opt-in email list, the sign-up box is above, or as a Yahoo Group. Past Issues are archived in the Yahoo Group or at the Master Index page.
Future Endeavours trimestriel est disponible comme une autorisation à base opt-in e-mail liste, l'inscription est au-dessus de boîte, ou comme un groupe Yahoo. Les anciens numéros sont archivés dans le groupe Yahoo
Created on 2010-05-27 Cette page a été mise à jour 2010-08-17 Updated