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Reply by Jimmie

02 Jun 2015, 11:31 AM

Xenia:

Thank you for taking the time to tell me (us) more about your youth and in particular your early years with John. I know the members of this site have recently been writing about a number of very serious and significant issues relating to lack of long term care facilities. I hope you understand that my interest in your personal story does not mean I am not also interested in that long term care issue as well. I am.

I don't know if you are familiar with one of the Virtual Hospice's leading lights, Dr. Harvey Chochinov. He is very highly regarded internationally for his work in the field of palliative/hospice care. He has written a book called "Dignity Therapy". He is a champion of personal story telling, in this case for palliative care/hospice patients. He has worked out a process which provides an opportunity for such patients to compose written copies of their stories and to offer these strories of their lives to their loved ones as a final and sacred gift. Such stories include personal histories, and they also include "things that need to be said" - the final words of love and concern the patient wishes to bequeth to those he or she leaves behind.

When I read your latest notes on your life as a young woman and in particular your life with John, I felt you were doing something of the same, in your own way, as Dr. Chochinov suggest. You are composing a memorial of sorts for John. I am reminded of those statues of stones (I forget what they are called) the Inuit construct on barren landscapes. My understanding is that such monuments proclaim, among other things, "We were here. We passed through this land, this place at a certain time in the history of the world. Take note - pay attention - remember". I think we do the same through our stories, only we build our monuments with our memories, and our words rather than stone. Nevertheless, such stories are sacred, lasting testaments of our lives and loves. They proclaim the same essential messages the Inuit leave behind - "There was a time we passed through this land. We were here however briefly and our presence should be marked and remembered and honoured by those who come after us and come upon this monument - of stone or of words."

I think, as you suggest, we can be healed in some deep way through such a process of story telling. I am not suggesting that the grief and loneliness will suddenly disappear, but I am suggesting there is a healing, a kind of peace that may more slowly seep into your own being through such sacred story telling. I would encourage you to continue to do so, in writing, for your sake and for John's and for the sake of all those who have come to love the both of you.

The landscape may be barren at the moment, the horizon empty, sky heavy with clouds. Nevertheless, as an act of love, a kind of sacred ritual, we bend down and pick up one slate grey rock after another and slowly build a monument in honour of those we love, and in honour of of our own lives. Then let the winds blow as they may. WE have done what we can and need to do.

with graitude and affection -
Jim

Take care, dear.

Jim

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Reply by Razz

02 Jun 2015, 2:08 PM

So well said "Jimmie" and such an important point. Along with trying to provide dignity in care comes acknowledgement of a person's being and their story.

I believe the word you were thinking of is "Inukshuk".

Razz

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Reply by Xenia

03 Jun 2015, 3:38 PM

Good Morning All:

Razz you are correct: Inukshuk is the name of the piled stones. This was used on many of the items at the Olympics in Vancouver some 10 years ago.

The name is similiar to my last name and relatives would ask about the origin of our family name. At least we received some recognition from the Inukshuk.

In my quest for information about the Caregiver Tax Credit you will be pleased to know that our MP Mark Warwa sent me information on this and it would take a Corporate Tax lawyer to decipher it. Had one of our tax preparers check it out and she said it was not understandable.

Also recieved another letter from our MPs, Rona Ambrose referred my letter to the Honourable Pierre Poilievre, Minister of Employment and Social Development. I just received a letter from Poilievres' office telling me "No, this does not fall under his purview and is under the purviewof the Honurable Kerry-Lynne D. Finaly, Minister of National Revenue.

Now I await a response from Ms. Finaly's office to see what her response is. Good thing I do not have to pay for postage to the MPs as this merry go round could go on until the cows come home or the election.

I have finally been able to get out of the house and take a bus with the help of my friend Ellen. What a relief that I could get on the bus and remember that I used to do this nearly every morning a number of years ago. I do not have agorophobia (fear of getting out into the outside) I was so used to being at John's bedside that I needed to reinforce myself that I could go out and John no longer needed me. How the mind plays games on one.

I am looking forward to the weekend at our daughter's home. It is going to be very hot (30C), still don't know what that is in Farenheit, but know it is hot. A family BBq to celebrate one daughter's wedding anniversary and remember John.

We will not be having a luncheon for father's day like we used to. Too many memories and although we will miss John the family will now be able to go about their father's day celebration in their own way. They loved to get together and keep Dad amused with their antics, the grandson brought joy to John, now they will celebrate in their own way in their homes and life will slowly take a change that one expects from their children.

OldBat, how are you doing. Has Karl's health improved and how about your own. We miss your antics and wisdom on the message board and are concerned. As you stated you are busy and although you do not message as much you still are connected to us just as we are connected to you.

I am off to do some volunteer work and enjoy the coolness of the day as has been a long time since we had rain. What no Rain in the Wet Coast, yes and I pray we do have more rain to end the forest fires now raging in B.C.

Hugs to All and thank you Jimmie for your kind words.

Xenia

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Reply by JennJilks

03 Jun 2015, 5:19 PM

Line 315 – Caregiver amount

If, at any time in 2014, you (either alone or with another person) maintained a dwelling where you and one or more of your dependants lived, you may be able to claim a maximum amount of $4,530 ($6,588 if he or she is eligible for thefamily caregiver amount) for each dependant.

Each dependant must have been 18 years of age or older and dependent on you due to an impairment in physical or mental functions. If the dependant is your or your spouse's or common-law partner's parent or grandparent, he or she had to have been born in 1949 or earlier.

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Reply by Xenia

03 Jun 2015, 6:27 PM

Hi Jenn"

I thought this was for all caregivers. It is not for spouses. I have tried to have this explained so many times called the taxation office, my tax preparer and various government agencies.

If you call the Income tax office they will tell you No, that is for relatives, ie: if my children cared for my husband in their home, yes, but as a spouse, wife, husband or significant other ...No.

Thanks for the message.

Xenia

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Reply by AdoptedSon

04 Jun 2015, 12:20 AM

Typical of our Government. If I cared for mom in my home, I might be eligable, so say the taxman, but because we shared a house, I was not eligable. These politicians, of all stripes, simply do not get it, or understand, just how valuable having family care for a dying loved one. Too bad they are all blind, deaf, and dumb, when it comes to actually understanding the people they supposedly serve.

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Reply by Xenia

11 Jun 2015, 3:02 PM

Good Morning All:

It has been a few days since I was on line. Had a few cleanup items to do in my condo, do the rugs as they had many stains and traces of meds, wheelchair wheels, etc embedded in them from John;s illness. Seems I am removing a few memories of the past 18 months I cared for him at home. The other memories remain intact in my memory box and I see them coming up at various times during the day or evening.

It has been a very hot spring and going into summer most of my volunteer activites have come to an end until late September. Looking forward to October when I along with my two daughters will be heading to Windsor, Ont. for a 10 day visit with John's sister and brother in law. His remaining relative. We keep in touch as we had a very good relationship and I hope to continue it.

Once again I am asking on behalf of the Canadian Medical Association and on behalf of all of us who are looking for change in the medical care system to put your ideas and complaints or whatever onto their website: demandaplan. They are looking for 10,000 supporters and to date they have received 6500 in the past 7 weeks.

This is where we, who have been through the mill, tried to get palliative care, hospice care, extended care, etc and had very little help in any way and were forced to seek help where ever we could. Of course, many of us cared for our loved one at home and were able to do so under various trying circumstances.

I believe this is the only way we will be heard and now that the Medical Profession is taking a stand on the need for various changes in the medical system it is up to all of us to take a stand and support them. I know I sound like I am on a soap box advocating , however, if we do not speak up we may also end up in the same situation for ourselves as we are all aging and as the government keeps reminding us, the seniors are taking most of the health care funding, yeah, if there was more preventative care and information on how to care for the aging at home, funding to help caring for a loved one at home and provide help to the caregiver there would not be the constant cry of "The aging are costing the medical system millions".

Enough of my soap box and I do encourage all of you who are on twitter or facebook to add your voice to the needs of the dying loved one we care for and for those will will need the care in the future.

I miss all of you, Jimmie, Ian, Oldbat, NatR, on and on. I appreciate that many of you are caring for your loved one and your time is precious but I want to let you know I think of you daily when I turn on my computer and see who is on line.

Hugs to all.

Xenia

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Reply by oldbat

11 Jun 2015, 4:25 PM

Hi Wonder Woman!

Just wanted you to know that, while I may be down, I am certainly not out! Filled in the CMA survey and forwarded it to whoever I could think of!

You're amazing. I'm trying to learn from you.

oldbat

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Reply by Xenia

11 Jun 2015, 6:50 PM

Hello All:

My over active brain and as my mother used to tell me.. You are like a Tornado. I forgot to provide the proper email address for demand a plan.

It is: demandaplan.ca

Oldbat: I am so glad you are back on line. How is hubby and most of all how are you. Too bad I am not in Toronto when I go east to Windsor, we could meet and have a cupa or whatever. I most certainly would love to chat and share stores with you, perhaps one day soon.

I just came back from helping a friend whose husband died a year or so ago and she has had problems setting up her new home. Everything still in boxes, etc. etc. Of course, here goes ms know it all...lol. My son came over with me, put up her pictures, put the glass in her china cabinets, had to have it cut, etc as she misplaced them. Cleaned up the living room by moving all the extras into the spare bedroom and brought enough boxes to fill with all the trash, no needs and saleables when we go over next week. He put up shelving in her laundry room and told her how to use boxes from the green grocers to put Xmas stuff in and label the boxes so she will know where what is.

Next week we go into the spare bedroom and declutter. My son used to make stages etc for plays, etc. and is great at declutering and making sense out of a mess. Poor Diane gets so bewildered as she has very little support and has a 40 year old autistic son whom she loves very much and visits him twice a week in his home.

Now I am home for a rest, have been out since 8:30 a.m. and it is 11:45. Lunch is calling.

Hugs to all and just maybe I might catch 40 winks this afternoon before I head out to my weekly meeting. Grandson keeps telling me, grandma/baba you are never home now. Not true but sometimes I think I feel like the Merry Widow as I am now going out more but I am not as Merry as the waltz. I am having to relearn about the buses, etc. time schedules and get out of the condo as I spent so much time with John I forgot to be part of the social fabric.

Take care.

Xenia

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Reply by Jimmie

12 Jun 2015, 10:49 AM

Morning one and all:

I came home from the nursing home last night in an angry mood. I was in the same mood when I woke at 1:30 this morning grinding my teeth.

Over the years we have spent in this little town, Sarah, in keeping with her character, made a number of very good friends - professionally and in particular - personally. All of her friends still live in this immediate area - several pass the nursing home regularly each day as part of their routine None of them drops in now to visit with her. One by one they have "abandoned" her. I know that sounds like a harsh term, but that's the way it looks and feels to me. Sarah was the kind of woman who cultivated her friendships. They meant a great deal to her. It really upsets me to see how little time they now have for her.

I understand that we have worn some of these friends out. The illnesses in our family are significant ones, AND, they are protracted ones. The initial responses of concern and solicitation are bound to wear a little thin over time. I understand that, What I don't understand is the total abandonment that now seems to have taken place particularly when visiting Sarah poses no practical inconvenience for any of them - all retired, all empty nesters, all comfortable! IT would mean so much to her if they just dropped by.

The other problem I have with all this is that (again given the size of the town), it is inevitable that I bump into these people from time to time, and THEY WANT TO TALK! or I am invited to gatherings with them, and THEY WANT TO TALK. At such moments, I just want to avoid them entirely because it's all just "small talk" - polite inquiries about Sarah, and then on to golf, or pensions, or cottages, or the latest trip to Florida. It drives me crazy! That long time friend of theirs, my wife, is sitting in her chair in the nurisng home every day as they drive by, and THEY WANT TO CHECK IN WITH ME, they want to check-in with me, instead of visiting her!!! God, does that ever annoy me. She's become less, and less, and less a presence in their lives, and she's still there, still alive, still in need of their friendships, and company. Right there in the middle of town, and they don't seem to have five minutes for her any more - not five minutes, five minutes to spend with their friend.

Anyway, I feel like I don't want to have anything to do with them - which only further isolates us from our previous circle of friends and company.

OK.......... I told you I was in a cranky mood. But maybe some of you have experienced something similar. I'm not sure. And maybe I should be more mature about all this and more understanding of the "natural progression of things" in the face of a protracted illness, but I feel like Sarah has been betrayed by her friends at the very time she is most in need of their company, and that makes me upset. She deserves better!!

Enough of the rant -

Nice to hear from you OLdbat. I agree with the Wonder Woman salutation.

In turn, I salute the day which has already begun here in the East and will eventually arrive at your own windows. May the sun bring some warmth into your rooms and lives when it does.

Jim

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