Sunday, March 27, 2011

nursing homes

Hi Everyone

I just got home from Williams Lake, my mother was admitted to a long term care facility this weekend and my sister and I went up to be there for this very difficult time. In Canada there is a shortage of long term care beds and so there is a waiting list,

so approx one year ago her name was put on a list for long term care. We thought it would be approx a 2 year wait for her to get in, and while we did not think the time was right when we applied, we felt that the time might well be right when 2 years came around.

I should also point out here that the waiting list are for the totally government sponsored beds. Someone with the funds can go into facility right away.

My father has been the primary caregiver for 4 years now, my mother had a stroke in Feb 2007, while having an angiogram. The angiogram was part of the work up for open heart surgery to replace her aortic valve. She went through 6 months of rehab and went home with a walker. We purchased a modular home that was set up for a person with handicaps, so that she could sit to work in the kitchen and we felt that she could be much more independent. In August of that year, the time came for her aortic valve surgery, and since she was getting very short of breath (due to Aortic stenosis) she decided that she still wanted to have the surgery. BUT.... a week before she was to have surgery she fell and broke her hip. She was flown to Victoria and both the hip surgery and the open heart surgery were performed within a few days of each other.

She did well after the heart surgery, but that she had had open heart surgery, she could not do the normal rehab that a hip fracture patient would undergo. (when the chest is split open with open heart surgery, the sternum takes a good 6 weeks to heal and you cannot put weight on your arms)

So she in essence ended up in wheelchair.

Last September my father admitted he was burning out from this, and we had a family meeting to find out how we could help and from this, she was started on a once a month week of respite care as well as twice weekly caregivers in the home to help with bathing. Then a few weeks her name came up, and we were in the position of either taking the bed, OR going back to the bottom of the list. (another possible 2 year wait)

So the decision was made to take the bed now.


My mother has some memory problems, but does seem to know what is going on right now and is seeming devastated and extremely sad. As one might expect, this has been an extremely difficult weekend for my family. We are all extremely sad to see her so sad.

In the two weeks or so of planning for this trip I have been trying to figure out a way to somehow make this all better. I have a certain amount of guilt for having been gone from Canada for so long, and only having seen my parents once a year or so. Now in coming back I wanted to try to make it up somehow and had hoped to be able to take her for periods of time to add to the respite and to make it easier for Dad to be able to care for her at home. BUT the bed came up before I was physically able to do any of that. So the decision now is not whether I can care for her for a week a month, but can I care for her full time?

We ARE hoping to break ground in building our home here in the next few weeks, and the plans we purchased we chose with the plan in mind that Mom would be coming for weeks at a time, so with mainfloor bedroom and wheelchair bathroom.

Ken and I spoke before I went up and have agreed that we CAN take her on full time with hiring care aids to look after her when I am working etc.

Although it is a very big step to take, I presented this plan to my family this weekend, and the consensus was to see how she does for the first few months. This will allow us time to get the house set up and ready for her. It is just breaking my heart though to know she is there and she does not want to be there, and when she asks, will I have to stay here forever?? I really do not know what to say.

I have told her about our house and that she is going to be coming for a visit and I guess we will start there.

This is clearly not something that every family has to deal with, as many people live out their lives without ever needing long term care. Several years ago my parents were visiting us in Bandon, and I took my father to the Wellness center to show him a bench I wanted him to copy for my yard. We had to go right through the Alzheimer's unit and my usual confident father was visibly terrified. He said on leaving to "shoot me if I ever get like this", implying he would never want to go into a place like this. I guess its just something most people hope to somehow bypass. I would say having worked on the other side of this issue for years that it is never easy and never straightforward.


I have to include another interesting tidbit I found out this weekend. I stayed the weekend at my parents house, I stayed in the van.

Looking for a book to read, I noticed a very plain book on the bookshelf titled “1906 fruit growers report”, which caught my interest.

Somewhere in reading about my mothers family a few years ago I read that my great grandfather, (my mothers paternal grandfather) has been commissioned by the BC government at the turn of the century to go into the Okanagan to determine the feasibility of growing fruit there.

(any Canadians reading this will know that the Okanagan has been one of the main areas that fruit has been grown in western Canada, but in more recent years, grapes.....)

I guess I was unsure of the validity of the statement until I started reading this book tonite. The book was essentially a meeting of the fruit growers of the "dominion of Canada", in Ottawa. He was a delegate from BC. There were several Canadian government officials who attended including the minister of agriculture, “the minister of Militia” and the governor general of Canada.

What is even more fascinating about this book is that a one of the primary objectives of this meeting was to address the “adulteration of foods”

There is a good deal of discussion of the impurities that were being added to the foods, such as preservatives, colour dyes and glucose. The minister of agriculture was essentially saying that we have preserved food without these substances for many years, safely why allow these substances now. (in 1906)

I have really only skimmed the book, but was extremely proud to read my great grandfathers comments. I guess I always knew that my love for gardening was so strong it MUST be genetic. I certainly will write more about it.

On my last CD the song I wrote, “with this seed” was actually about this, knowing my grandfather was a farmer, and my grandfather was a horticulturist.


Love

Janet

jankenb @ gmail.com

Tuesday, March 22, 2011

life carries on

Hi there
We have now been in Canada for almost 2 months, and we are adjusting. Somehow it just seems as though if we could just get through the.......... then everything is going to be fine. We keep thinking that anytime now, our lives are going to settle down and the stressors are going to go away. Sometimes I wonder if I just have this unreal expectation that there is such a thing as a life without stress.
We just today received the funds from out Bandon house, it was due on March 1st, and we had made offer on land here, so a very stressful month.
So everything going through today, yesterday we found out that Ken's dad had a heart attack last weekend.....
my mother is going into nursing home on Friday. Big step in my life..... sooooo hard to deal with. I had hoped in moving to Canada to be able to be more involved in my mother's care.

So my sister and I are driving up to Williams Lake to be there when my mother goes to the facility and Ken is going in the other direction to be there with his parents. His father is almost 90 now.
We have had multiple trips to Kamloops and Kelowna trying to get our vehicles "inspected" so that they can be licensed in Canada.
I think if we were to do it over again we might have just sold our vehicles prior to the move, for all it has cost and the time involved. I think that moving to another country is not for the light hearted.... and to do it twice is NUTZ. EVERYTHING has to be changed when you change countries.....my next big step is that April 1st, I will officially have health care in Canada. There is a 3 month wait once you arrive.
All of my medical misadventures have definitely aided in our medical knowledge, in that between us we have diagnosed 4 people with radiation proctitis, patients whom had been treated unsuccessfully for what was felt to be hemorrhoids etc. So perhaps others might benefit.
The land we have ....purchased is 2 blocks from the clinic I will be working at in Scotch Creek, it is 1.67 acres and flat and perfect for gardening/farming. I have hundreds of little seedlings growing in our rental house, just vying for a bit of light. (we do have undercabinet flourescent lighting in the kitchen) So I just have to keep everything growing for another week or so until we can put the seedlings out on our new property.
We have found a house plan online that includes photographs of the house fully built.
It IS smaller than the Bandon house, but all we really need.


We will make the downstairs bathroom wheelchair accessible so my mother can come and stay.

Lots of Love
Janet
jankenb @ gmail.com



Saturday, March 5, 2011

BC cancer agency

Hi Everyone
I have had my first visit with the cancer center in BC in Kelowna, yesterday.
It went very well and I even learned a few things.
The doctor I saw was a radiation oncologist and he had reviewed my records and was pretty amazed that a patient who had had radiation for gyne cancer would have the problems I am having. Through it all he concluded that I must just be one of those people who are extremely sensitive to radiation.
He had never seen someone with my kind of radiation develop proctitis, the enteritis OR the skin breakdown that I experienced at the end of radiation, the open wound that took 3 months to heal after radiation.
I quite liked him, he was pretty darn blunt.

He did have an explanation for how it was that I got these small bowel problems though.
I have explained some of this stuff a long time ago, but I am going to explain it again here with the newer information.
After a hysterectomy the pelvis is essentially empty, leaving lots of room for the small bowel to move down into the pelvis. The small bowel is more susceptible to damage from radiation, but since it moves around so much, one specific area does not get hit by the full 25 treatmentes of radiation. The Large bowel does not move around, as it is fixed to certain structures in the abdomen/pelvis, so it gets the dose the same for the 25 treatments. The large bowel is not as susceptible to the effects of radiation though. So this is why I have the proctitis, , the rectal area gets hit by each and every treatment. What I learned yesterday is that IF the small bowel is in any way "tethered" to anything in the pelvis, (such as when a person is post op and has adhesions, or scars HOLDING the bowel to perhaps a sidewall in the pelvis) then that area of small bowel will get the same dose every day for perhaps the entire 25 treatments. And being more susceptable to the effects, tends to sustain damage.

He was blunt about the follow up in describing the futility. So if the DO find a recurrence in the vagina, unlikely they could do much to treat it, because I could not be radiation any more PLUS surgery in that area would not heal.

The lesion that we removed 2 weeks ago thought it was very small, is not healing at all, it really does not do anything, so i am afraid I am back to that situation again, trying to get somethiung to heal in an area that does not heal well.

Things are going well, I am more thrilled every day to be here, we are spending more time with family all the time and it just feels right.
I starting in right away as a rabble rouser at the clinic.

There is this one policy they have that has the doctor who is on call for the ER going back and forth all day between the office and the ER. I laid out a plan and made a proposal to change all that and lo and behold, I DID get it changed and afterwards, everyone is saying "now why DID we do it that way" NO ONE liked it the old way, not the nurses, not the doctors and of course not the patients....and no one knew why we were doing it that way.
So all my years of training as a rabble rouser in the US, will definitely not go to waste.
We really like the other doctor we are working with, he is from Sri Lanka. He is extremely easy going and VERY easy to work with.
We also have a nurse practitioner whoe we work with and she is great too. The nurses in the ER are great too, in fact one of them was in the class behind me in nursing school back in 1977.

I really am starting to come to terms with my radiation stuff. I guess its like Kubler Ross's stages of grief and greiving. (She wrote all those years ago on death and dying, describing several steps a person goes through with any sort of loss) I am sure I have talked about this before, but mention it now, just in that I really can see that I have been through several steps of acceptance.
Kubler Ross's steps are : and note that this is actually on death and dying, but it has been found that people go through similar steps with any sort of loss

"The progression of states is:[2]

  1. Denial—"I feel fine."; "This can't be happening, not to me."
    Denial is usually only a temporary defense for the individual. This feeling is generally replaced with heightened awareness of positions and individuals that will be left behind after death.
  2. Anger—"Why me? It's not fair!"; "How can this happen to me?"; "Who is to blame?"
    Once in the second stage, the individual recognizes that denial cannot continue. Because of anger, the person is very difficult to care for due to misplaced feelings of rage and envy. Any individual that symbolizes life or energy is subject to projected resentment and jealousy.
  3. Bargaining—"Just let me live to see my children graduate."; "I'll do anything for a few more years."; "I will give my life savings if..."
    The third stage involves the hope that the individual can somehow postpone or delay death. Usually, the negotiation for an extended life is made with a higher power in exchange for a reformed lifestyle. Psychologically, the individual is saying, "I understand I will die, but if I could just have more time..."
  4. Depression—"I'm so sad, why bother with anything?"; "I'm going to die... What's the point?"; "I miss my loved one, why go on?"
    During the fourth stage, the dying person begins to understand the certainty of death. Because of this, the individual may become silent, refuse visitors and spend much of the time crying and grieving. This process allows the dying person to disconnect from things of love and affection. It is not recommended to attempt to cheer up an individual who is in this stage. It is an important time for grieving that must be processed.
  5. Acceptance—"It's going to be okay."; "I can't fight it, I may as well prepare for it."
    In this last stage, the individual begins to come to terms with his mortality or that of his loved one.

K├╝bler-Ross originally applied these stages to people suffering from terminal illness, later to any form of catastrophic personal loss (job, income, freedom). This may also include significant life events such as the death of a loved one, divorce, drug addiction, the onset of a disease or chronic illness, an infertility diagnosis, as well many tragedies anddisasters."


Looking back I have really struggled with this "condition" working so hard to just make it go away. I realize now that it is not going to go away and I guess really what I wanted from the doctor is just someone who can recognize that it is a difficult problem, who is willing to help me when I need it. This doctor I saw yesterday, once I explained to him that I HAVE accepted that this will likely be a chronic illness, and my biggest fear/concern at this point is not having a doctor to help me with the symptoms.
There are times when I need pain meds, and antinausea and there may come a time that I need to have a procedure for the bleeding. I guess I just feel so much better knowing that I have a doctor for now who knows that this is a painful disease and is willing to help out where he can.

I have just had the most terrible night, had pizza for dinner last night, and bought come dark chocolate to have with dinner and was sick all night. So not sure if it was the cheese on the pizza, the chocolate, or if it was some of the veggies on the pizza, and we went over to Kelowna and I did not bring any of my nausea meds with me.

So lesson from that, I likely CANNOT eat chocolate at all, I need to take my meds wherever I go! AND it just seems to work better just to eat at home where I can cook all my own meals. Once I have my garden up and running that should not be a concern.
All my bedding plants that are all over my kitchen are about 2 inches high now, and I am really looking forward to having our acreage so I can plant them
I may need to get rid of the snow, to find a place to plant them, but doggonit, I may just do that.

OH and I just cannot say how much I love that I have been given another chance to be a doctor, I am just loving being a doctor, there was a time back at Eugene that I thought given the situation there that I might never get to practice medicine again, so I have been given another chance on SO MANY levels.
Life is great.

Lots of love to all.
Janet

jankenb @ gmail.com