Discussion Forums

Reply by Jimmie

04 Mar 2015, 10:28 AM

Morning:

My apologies for not writing in response to the various issues being discussed on this site of late.

I havd had to hospitalize my wife twice in the last month due to the rages and mania associated with her illness. She is still in the hospital and we are waiting for a placement at our local long term care facility.

AS many of you have articulated in the past, these transitions provoke a tumult of emotions in everyone involved. It is a kind of torture - for me a vortex of loneliness, grief, guilt, depression, and physical exhaustion. For Sarah a similar tumult of anger, confusion, abandonment, rage.

AS much as I understood that I could no longer manage her at home given her protracted periods of mania, it is heartbreaking (as I know you all understand) to come home to an empty house and an empty bed. And it is hearbreaking to see her confused and enraged by her confinement in an unfamiliar and unwanted facility.

It's a meat grinder, this business. Leaves no part of you intact, unscathed, or unbroken. Exhausts your spirit and your body.

That's where I am at the moment caught in the black hole of the despair and exhaustion of these times. It's a black hole from which even words have trouble escaping.

JIm

Report this post

Reply by Xenia

04 Mar 2015, 12:25 PM

Good Morning Jimmie and All:

It is 4:00 a.m. in the West and I have been awake since 3:00am.

Having just read your message my heart goes out to you as I and all on this message board have or are dealing with the heartbreak of placing a loved one in a care facility and knowing how they will react having been cared by their partner or family.

I can only say I share your despair having had to place John in hospital just before his passing. I too share the emptiness of his not being here, the empty house and just being here has taken its toll on me yet I live with his memory and trust things will get easier as the days go on.

Words are not enough to express what you are going through and I cannot express my heartfelt sharing of your pain so I send you kind thoughts and a hug to help you through your despair.

Xenia

Report this post

Reply by Nouce

04 Mar 2015, 1:16 PM

Dear Jim, dear friends all,

I know this dark hole; I wish I could hold your hand as you wait there. I reach across the miles and light my little lamp every morning for you, and for us all.

Nouce

Report this post

Reply by oldbat

04 Mar 2015, 2:52 PM

Dear Jim (welcome back, you have been sorely missed), Xenia, Nouce and all our fellow travellers.

Such sad, sad news Jim. I, too, am familiar with that dark, empty space that is so far from welcoming when you return from the hospital or long-term care home. Karl has now been in long-term care for close to three years. I have found that the place I still can't really call home, because of his permanent absence, is a little less foreboding if I leave both a light and the radio on when I go out.. When I open the front door, I am welcomed by the music we both loved to listen to and a small circle of light.

Do things get easier? I can answer no and yes to that. The year after Karl's stroke I believe I was in one long panic attack. Simply couldn't function beyond the bare minimum. Even our cat was affected. She went berserk - literally - starting howling through the night and fouling everywhere. I lost my couch, carpet and a chair thanks to Emmy. Finally had to give her up, too. A kind acquaintance took her and she is now apparently a very happy pussy cat!

But I digress. The second year I was largely coping with illness myself. Had a terrible fall resulting in four fractures and a long stay in rehab, where I managed to acquire one of "those" bugs which lasted all year.

This is year three, and there is a small flcker of - dare I say it - hope - lightening my darkness. Karl has adjusted - much better than me - to his new life - and I am slowly, slowly reaching towards that adjustment myself. I'm even starting singing lessons next week. I studied voice in England a thousand years ago, and haven't really sung since. Have tried a few times lately and sound like a bullfrog in drag! Hopefully this can be rectified by an understanding teacher.

I thing the important thing to remember, for you Jim and all of us, is to learn to be kind to ourselves. It isn't always easy. And there are, in my case anyhow, very few people who will do it for you, on a long-term basis. Family essentially have to, it's expected. Friends not so much. So, a little glass of what you like, music that you love, a good book - I've been shrugging myself into books that are old friends lately - and the occasional social outing. Too many are exhausting, too few deepen the terrible sense of isolation many of us seem to share. I've left out food, usually such a comfort, because I'm just not "there" yet! Have even given up on chocolate - SIGH!! Where are you, Adopted Son, I count on you to do that for me!

I've also found that exercise helps. Started physio this week. I have a health-care- mandated four sessions - count'em! The government is TOO generous! However I'm hoping that the - very good - exercise routine I've been given will go a long way to restoring at least some of my mobility.

And, Xenia, here's more food for thought: I got on to the provincial government's web site which says that I am entitled to 50 physio sessions a year, so how come I only qualify for four? I know you can't answer that, and I plan to take it up with my Health Coach tomorrow, but here's just one more way seniors, specially those of us who are also care-givers, are getting screwed by the government(s) that pay lip service to their care.

Enough already. Seems that, in building - or trying to - a life for myself, I have also rediscovered my soap box!

Garrolous oldbat!

Report this post

Reply by Xenia

06 Mar 2015, 8:38 PM

Greetings to all on CVH:

Got over the bug and taking many things a day at a time. Had and am having a bad day. Miss John very much to-day, am going through items that have to be discarded such as the plastic cover to his fishing license when we lived in the Caribou. His toothbrush that was hidden in the bathroom drawer amongst some other items. As I dispose of these items I think is this all that remains of him and he is just a MEMORY.
I have Vavaldi's Four Seasons playing and it keeps me going. Had a reply by email from our Member of Parliament and he forwarded my letter regarding palliative care. I wait in anticipation what our Health Minister Rona Ambrose will have to say and will it be a form letter which a lot of politiicans send out.

Last night my (no longer our-or do I keep saying our as she is both our daughter) daughter called and told me our grandson and his fiance are planning their wedding. This brought about sorrow again as John was so looking forward to the marriage of his only grandchild (grandson) whom they had a great relationship. John missed out a lot of time with our children which is typical of working husbands. His work shifts took time out of many days however we did travel a lot when he had time off, going to the East Coast, up Northern B.C., taking the camper to the Ocean parks where we would park and the kids would swim in the Pacific Ocean, watch the ships parked in the bay waiting to be unloaded. Looking across to North Vancouver and enjoying all of the West Coast.

Another problem I had was the fire that was at the Vancouver Port. John used to work there, he was a longshoreman and when I saw the fire in the containers I turned and said, John..watch this, then I realized I was talking to myself, again. Getting bad some days but that too shall pass.

I am preparing for my big outing on the 15th, I believe I told you the girls are taking me to Vegas, first time for me, we wanted to take John but he was never well enough so the girls decided this would be a good time as they had free rooms and one had two tickens on Alaska airlines as her husband got very ill last year and couldn;t go to Vegas and she had to use up the tickets asap or lose them. So here I go to the Big City lights and gambling. Am looking forward to it but am not one for hot weather so I hope it is cooler when we get there.

Here I am writing a a book but I needed to sit down and clear my head as I continue going through drawers and closets and seeing what has to be attended to.

All I hope things are better for you and I think of all of you often and pray things will get better.

Hugs to all.

Xenia

Report this post

Reply by NatR

06 Mar 2015, 11:39 PM

Dear xenia

good of luck to you with all your outreach letters and awareness campaign - your insight is valuable and needed

charlie Angus the MP for Timmins james Bay Area has been doing a lot - raising a campaign for palliative care. Another person you can write:)

sorry to to hear how badly you are feeling - getting rid of all the little memories and items of johns. This is going to go on for a while - but I sm so glad to hear you are busy and making plans with your daughters
go and enjoy it all.

i have a cousin my age (65) who has just been sent home to her family. Her mom has come to nurse her - we all are dealing with fear and grief - sadly.
its important for us all to make the best of each day;)
you are in my thoughts Xenia.

the fire in Vancouver was really scary and I can imagine you did feel like john was still with you - those usual conversations just hang around - we get so used to saying things off the cuff to our loved ones

be surrounded by the family, enjoy the upcoming wedding and although there is pain - I know your grandson and his bride will be blessed by your presence ( and john will watch over your shoulder)
thoughts and hugs
natR 💕

Report this post

Reply by Xenia

09 Mar 2015, 3:10 PM

Good monring all on the New Time Change:

Got up this a.m. and wondered how come I slept in, yep time change. Turns my world upside down. I prefer the old time as I am not a sun lover, however, I adjust and will find things to do in the sunlight and evening.

I had a horrible day yesterday. Even my grandson was worried, guess they never saw granny cry. I didn;t howl, but tears just kept flowing most of the day. I just realized that I really didn;t cry right after John;s passing, nor later on doing all that had to be done. Now the realization that John is gone and that has set in and now I have to adjust myself once again and know that there are going to be bad and good days and to accept them. I do believe our bodies make needed adjustments with bad time and slowly release the energy of whatever we are holding back until we are in a safe place and can release the tears, worries, cares and all we have been holding back.

I lost a lot of time during John;s passing and I would wonder what I had done, how John was feeling, how I was feedling and took time yesterday to go back to early posts and there I found the lost days and feelings. This was very helpful in finding the lost days, the feelings I had and the need to share at most distressful times. I am so glad that I was able to reread the messages and once again get the help from my friends on CVH. So supportive and understanding. So much help during those trying times and so much good and supportive advise. Who needs a counsellor. It appears that those who have or areg oing through these difficult times become hands on people and they know, done, doing and know the pain, fear and agony all of us share in these hard times caring for our loved one. Who needs counsellor - pun. We become our own counsel many times as we have to use our intelligence and basic needs to overcome many dire situations. Thank You All, from the bottom of my heart and tear filled eyes.

To-day my friend from Pentiction, B.C. has just called, 7:00 a.m. and asks what time she can come over. She arrived last niteand spent the evening with our mutual friend, however, wants to use my home as home base as she has to sleep on the counch and her friend is a non-night sleeper and uses the computer in the living room. Therefore, I am looking forward to her company for the next few weeks. She will be here when I head out to Vegas and she will have the run of the place.

We have been friends for a number of years since I moved here then she moved away. We had so many great times, went to the pool a couple of times a week and shared a compainionship but did not live in each others drawers. A good realtionship.

To all going through the difficult times caring for a loved one please keep in touch with your friends on CVH. There is so much care and information here that will help you through the most difficult times and understanding from those who have been or are in the same situation as you.

Hugs to All. Jimmie, how are you doing, I miss you and need your comforting words, they are poetic and my soul needs these words.

Xnia

Report this post

Reply by oldbat

09 Mar 2015, 4:09 PM

Good morning Xenia,

So sorry to hear about your sadness. I'm not Jimmie, and no-one will ever replace him, but will you accept a very pale substitute, at least for now?

Try to think of yourself as the ocean. Your tide comes in on good days, goes out on bad. Enjoy swimming with the waves on the former, paddle gently in the shadows on the latter. I don't know about you, but I have always thought of the sea as my mother. She cradles me when I'm down, exhilerates me when I'm up. I find these thoughts immensely comforting, particularly when I try to meditate or visualize.

Glad to hear about your gladness. Your friend will console you and help you through these bleak times. And never forget that John is watching over you, caring and cheering for you all the time.

Take care of yourself, we're all here for you.

oldbat

Report this post

Reply by oldbat

09 Mar 2015, 4:10 PM

Aaargh! I meant "paddle gently in the shallows"!!!!!

silly oldbat

Report this post

Reply by KathCull_admin

09 Mar 2015, 4:13 PM

I kind of like 'shadows' Oldbat. Sometimes those shallows are like shadows.
Katherine

Report this post

Enter your email address (the one you used when you joined Canadian Virtual Hospice). We will email you a new password right away.

Email Address:

Become a Member

As a member of the Canadian Virtual Hospice, you can ask a question confidentially on Ask a Professional and contribute to the Discussion Forums. Join for free now to connect and share with others.

Discussion Forum members receive a monthly newsletter. You also have the option to sign up for the Canadian Virtual Hospice monthly newsletter.

Please fill in the information below.

Nickname:*

You will be known to other users only by your nickname. You do not need to reveal your identity by using your full name, real name or email address. Choose a nickname that is easy for you to remember.

Email Address:*

Your email will not be visible on the Virtual Hospice website. We will NOT sell, distribute or misuse your email address.

Password:*

Confirm Password:*

Country: