Advocate on the journey
When my elderly parents started to get ill, I realized that they needed an advocate to go with them to doctors and to take in all that was being said so that it could in turn be understood by them. Someone needed to hold the threads of medications, treatments and general observance in place.
At the time, I remember saying to many people, that sick people need an advocate.
Strange that when I was diagnosed with cancer, my husband was 2 1/2 weeks into an 8 week training course for a job that he relocated across Australia to do. The "next" course was unknown, so we decided that I would go forward on my own and if I needed him I would call but otherwise, we would talk each day and he would go ahead to get this new training in place.
I should mention that both of us had come across age discrimination that year and getting this job was an achievement as they had sidelined his application a couple of times because of his qualifications (he was over qualified and had been a manager) and because of his age and their concern that he would be able to work "on the tools" again.
My being diagnosed with cancer was a huge shock to both of us....and a terrible inconvenience.
We had agreed that I would stay behind because I was living with my mother as her carer and his culture (fortunately) has a high regard for the elderly.
We weren't "separating" but we were living separately while I watched over Mum and continued to work and he worked over in the west. We planned to get together as often as we could when his work settled down to a routine that we could work with.
Then 2 1/2 weeks later I was diagnosed.
Well a diagnosis has many elements to it......most of them unknown.
I didn't tell him for days....while I tried to make sense of it myself.
You would understand I am sure....you find a lump....then you have to get an appointment with a doctor (not easy to do)....then a referral to get a mammogram, ultra sound and biopsies....and then you wait for the results of those tests....and then you get a referral to a specialist, get an appointment and then go through that phase.
I knew telling him would bring more questions than I had answers.
So I chose not to tell anyone until I knew when I was going to Brisbane (1200 kms away) to meet with the surgeon.
I wish I could have gone on my own and found out the rest of the diagnosis but I was Mum's carer so I had to take her with me.
Mum suffers from short term memory problems and she copes really well in her own home. If she was in a nursing home I suspect she would mentally disappear within weeks. Taking her to Brisbane with me was not an ideal situation but the only alternative I had.
It was a mistake as it turned out as she ended up in hospital herself while we were down there.
Just days before my diagnosis was confirmed, my sister in law was diagnosed and she was heading off to Brisbane as well. Her husband went with her along with her brother and his wife. I didn't tell them about my diagnosis.
My daughter was pregnant and my daughter in law was as well. They were the others I could have gained support from.
So as much as I believe that you have to have an advocate......I went off on this life changing journey without one.
Comments
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Oh hun I hear you. You really have done it tough. It just isn't fair sometimes is it? I did so much of my journey on my own. Hubby working 4 and 1 and there were just so many things that I didn't tell him or my sisters or my daughter andmy son wasn't interested. They all have their own lives and their own problems and just didn't need mine. They would have liked to help but they just didn't have to time or space in their lives to fit it in. I live 400klms from Perth.
I am going to be travelling another journey (not BC) and I plan to keep so much of it to myself again cause like I say we all have our own issues and people just don't need your added "stuff" but it is hard sometimes.
How is your mum going now? How are you going now? You have taken on a huge responsibility with your mum. My sister cared for my mum for 20+ years and when it came to the day that it was totally necessary for her to go to a care facility it was so hard but necessary. My mum did okay, we visited often. She made some new friends, joined in at happy hour and things like that. After many many years in the home it was pneumonia that finally took her from us.
My heart goes out to you as I can relate so well. I live in the West so if you are ever lucky enough to visit hubby maybe we can catch up :-)
Sending you some much needed hugs your way, Mich xoxo
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Oh hun I hear you. You really have done it tough. It just isn't fair sometimes is it? I did so much of my journey on my own. Hubby working 4 and 1 and there were just so many things that I didn't tell him or my sisters or my daughter andmy son wasn't interested. They all have their own lives and their own problems and just didn't need mine. They would have liked to help but they just didn't have to time or space in their lives to fit it in. I live 400klms from Perth.
I am going to be travelling another journey (not BC) and I plan to keep so much of it to myself again cause like I say we all have our own issues and people just don't need your added "stuff" but it is hard sometimes.
How is your mum going now? How are you going now? You have taken on a huge responsibility with your mum. My sister cared for my mum for 20+ years and when it came to the day that it was totally necessary for her to go to a care facility it was so hard but necessary. My mum did okay, we visited often. She made some new friends, joined in at happy hour and things like that. After many many years in the home it was pneumonia that finally took her from us.
My heart goes out to you as I can relate so well. I live in the West so if you are ever lucky enough to visit hubby maybe we can catch up :-)
Sending you some much needed hugs your way, Mich xoxo
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Hi Mich
I am heading over again on 17th October.
He has been staying at Jerramungup, Walpole, Albany and Mount Barker. Now I understand he is moving up to somewhere about 50 kms north of Perth. It is a "liquid" job and he keeps moving.
I'm looking forward to catching up with him again.........
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Thanks for responding Deanne.
With my Mum...it will never be too hard.
When the time comes, it will never be the right one.
For their own personal reasons, my sisters are not in a position to help.
My eldest daughter though is a God send.
Perhaps my legacy in her is that she is too much like me.
When I go over to the west this month to visit my husband, she and her two babies (2 1/2 and 6 months) will come and stay with my Mum so that she has company and can stay in her own home.
I count my blessings........every day......and top of the lists are my husband, my mother, my children..........and that he watches over me and gives me strength every day........
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We only get one of those don't we?
So many people would give anything to have an opportunity to sit and talk with their mother for five minutes.
I get the chance to talk every day.
It is hard watching the deterioration. It is difficult watching the mind struggle........BUT because of my chemo brain, I understand it way better than I would like to.
Mum and I talk in code a lot.........
When it is over, it will be too soon.
I don't think I will have regrets..........
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He has been staying in some beautiful places in W.A. the lucky fellow but brrrrr it would have been cold :-(
Mich xoxooxxo
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I read your story and felt your strength. I understand why you want to keep things to yourself. Being such a caring person, you don't want to place any harm on others. You will need support though. Don't be too strong - take the support that is offered. I am the strong one and even my sisters said "You got bc because you could deal with it the best" We all need love and support. Take care of yourself as well as others. You are number One on this earth and it is your time to "look out for you". I applaud the love and kindness that you are giving to your mum. I have been there as well - I miss my mum but have no regrets. I have many wonderful memories that keep me going. Keep making memories. XLeonie
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