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Started by Dar64
27 Sep 2014, 7:09 AM

I just joined the site after finding out about it from the Canadian Cancer society. I am caring for my husband of 31 yrs. On Fri Dec 13, 2013 my husband was diagnosed with lung cancer stage 4. The cancer has spread to his bones where he has a 6.5 cm hole in his pelvic bone, his right hip is chewed up, holes in his ribs and in the lymph nodes. 9th right posterior rib is getting worse. I am so tired mentally, emotionally and physically, you see we lived on a 3rd floor apt. (no elevator) when we found out about the cancer we told the super the situation and asked to be moved to a ground floor apt. She refused our request, so i called the area manager and he assured me we would be made priority, as i did not want my husband to be stuck on the 3 rd floor unable to get out side i looked daily for another place to live, whe i seen that skyline had other apts available on the ground floor and in buildings with elevators that was enough for me. I ended up having to call human rights where they were told they were in serious violation of the human rights code. Isn't it funny how whe they got the papers from human rights they had not 1 but 2 apts on the ground floor mysteriouly come available. We are now in a ground floor apt, but there is still the matter of 8 1/2 months that my husband was imprisioned on the 3rd floor. We go to mediation on Oct 28th 2014. It seems like at every turn i am having to advocate, argue and fight for his rights.  CCAC in this area is not much help and very unorganized adding more stress on me, i had a Dr. appt that was 3 hrs away so i arranged for a psw to come in for the day while i attended my appt. when i got home my husband was all upset, the psw was ticked all because of one nurse. This nurse keeps telling my husband he is getting better and she cuts his nursing days, yet the Dr. says somethings are getting worse, this same nurse grilled the psw ticking him off. This nurse has been told she is not welcome in my home. I have a psw 3 days per week for 3 hrs, in that time i am running for meds, cleaning, cooking, grocery shopping etc. Am i wrong at wanting more time?  I so want to have time just to relax in a nice hot bath and a nap.

I feel like i am so alone, left in limbo, i have no idea what lies ahead, what will my husband go through? will i wake up one morning and his time will have expired? I hate not knowing, how do you prepare yourself for what is to come? I was asked if i was prepared to watch my husband suffocate!! How do you prepare yourself for something like that? Due to the met to bone he has a DNR, my husband doesn't want to put me through more than needed and i don't want him to suffer any more then he has too. Once per month Ron (my husband) gets bone builder and comes home with it, i am the one who removes this when it is done. Ron can no longer take chemo as this will make him sicker and weaker, radiation is not completely out of the question yet. He has had 13 radiation treatments altogether. We were just going into the 6th cycle of chemo when he had to stop. I am so sorry for rambling on. I have so many questions, so many fears and i feel so alone.

Love & Hugs to all..

Dar

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Reply by KathCull_admin
27 Sep 2014, 1:53 PM

Hello Dar
You have come to a place where your questions and fears are welcome. Looking at the time stamp on your post - it looks like it was a late night for you. Nights can be very scary, lonely times.   Members here understand and will be able to offer you support – you are not alone.

You and Ron have been through so much in less than a year in terms of his health but that you have also had to take on advocating for housing - I am amazed.

I am not sure if you have seen the other threads on this site like What happened to joy?  started by Kirstie whose husband was also recently diagnosed.

Do you have family or friends in the area you live who are able to help out? How is your health?


Katherine


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Reply by JennJilks
27 Sep 2014, 2:16 PM
Dar,
What a sad situation.
We know there are many people in your type of situation. It may not help, but there are quite a few people on our local list needing support.

I don't know if it helps to understand this. CCAC has such a limited budget. They guard it like it is their own money. That said, the nurses who come are likely from a Transfer Payment Agency, i.e., Bayshore (profist of $400 million across Canada), taking our tax dollars and dispersing them through a RFP process. The contract goes to the lowest bidder. It is a shameful way of doing business, but that is the way it is done.

You are not wrong to want more time, but case loads are full with so many wanting to die in their own homes and those who eschew hospice beds and hospice buildings.

Do call your local hospice and ask for a volunteer. This is the work I do. They provide counselling, as well as some respite. I provide a bit of extra relief to families who are stressed. Mine is found through chslc.ca, but you can find a local hospice through 211ontario.ca and ask for relief to go out and do groceries and such. My client has ALS and his wife has dementia symptoms. His son cares for them.

That said, I was sad to have to cancel my visit with a client this week as my hubby had a sudden appointment for a CT Scan. He has prostate cancer.
Do the best you can. That's all your husband can ask.
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Reply by Jimmie
27 Sep 2014, 2:53 PM

Dear Dar64:

First, let me quickly say that your circumstances are staggeringly challenging - phsically, emotionally, socially. Dealing with your husband's illness is exhausting enough let alone having to deal with other individuals who seem shockingly insensitive, or indifferent to the traumas of your lives. 

Let me also add emphatically that you have a right and a need to recover what stength you might through periods of time when you are at least temporarily freed from your responsibilities.  That is not an indulgence on your part; it is a necessity and damn anyone who would suggest otherwise.

I also want to assure you that you are surrounded on this site by the most wonderful, compassionate, understanding individuals you could imagine - people who are enduring similar circumstances to your own and poeple who find comfort and support through this network of friends. Write when you are lonely, write when you are angry, write when you are lonely or exhausted.  Write just to BE with someone else.  Write not to be alone in your suffering.  You are surrounded by compassionate, understanding friends here, dear.  I am honoured to be one of them and will offer my hand - or ear - or heart whenever you are in need.  perhaps it is stupid to talk of love when everything is sufffering and trauma, but there are people waiting here to off you just that - their love and kindness.  There have been times in my own life has been just enough to get me through another challenging day.  My hope it that it will be the same for you, dear.  I will write again, as I am sure others will do as well.

Jim

 

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Reply by oldbat
27 Sep 2014, 6:17 PM
Hello Dar,

And Jimmie, how lovely to see you again.  Dar, Jimmie is just one of the amazing people on this site.  People who are always ready to share your pain, hear your grief, and offer you their hearts.

You are not alone.  As I have learned, since joining CVH about a month ago, there is always someone, and usually more than one, who will respond to your message.  We can't live your life, got enough  trouble with our own <G> , but we do understand just what you are going through, probably because we've been there.

You are on a  journey of isolation.  One that we will be privileged to share and hopefully mitigate, as we travel it together.

One month ago, I was quite literally ready to give up.  My husband is in a long-term care home after a catastrophic stroke, which turned him into my 6i-year old son, and for the past three years i have been his sole care-giver.  Friends drop out after a while, and his daughters dont want to know.  I couldn't get any help from CCAC or any other "caregivers" group, so was handling everything for myself, totally alone.  And, I'm handicapped.  I got so mad one day - a Friday - that I zapped off a very firm e-mail to CCAC's head office.  On Saturday morning, a very solemn man called me from there, to find out exactly what I needed.  I now have care-givers looking after the cleaning, laundry and shopping for me, 2hours every week, and a whole host of other services coming my way. soon.  So,  don't get depressed - get MAD.  ACT!  I know it's hard to do, depression is so debilitating, but action, any action is empowering and will result in a positive response.  And one of the first things you should do is report that ******* nurse to her management.  

From your comments, I'm assuming you live in Toronto or some part of Ontario.  The name of our provincial Health Minister is Dr. Eric Hoskins.  Write to him.  the government needs to hear our stories.  But for now, simply act on your own behalf.  And please do stay in touch with us.  We are here to listen, console and help you in any way we can.

Consider yourself HUGGED!

oldbat
 
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Reply by frustrated
27 Sep 2014, 6:20 PM
Dear Dar 64,
You are among fellow caregivers here. This site has been such a help to me. I can totally relate to whre you are. The unknown is so hard to deal with. We can fight what we know, but not knowing to at times almost unbearable. My husband was diagnosed with NASH, with avanced to Cirrohsis. We were told 5years ago it would be months. A month ago his kidneys shut down. He is an over weight diabetic with CHF. He is still at home and it is a struggle with his weight and immobility. He has increasing fluid retntion.

I have to focus on one day at a time. He can still get to and from the washroom, but that is the extent of his abilities. He spends all his days in a lift chair.

I can still get owt for an hour or two and leave him unsupervised. I have taken up "soft" meditative yoga as a way to find some peace. I also indulge in massages. It is hard to keep the guilt at bay when I go out, but it is essential to my sanity and survival.

If you don't take care of yourself, you won't be able to care for your husband. The deterioration of a spouce is so very hard to deal with.

Take care of  yourself and know that we care and I reach out with hugs.
vj
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Reply by AdoptedSon
27 Sep 2014, 7:31 PM
Welcome Dar

I can totally relate to the frustration and anger, with the agencies hired to do the job that the Government pays for, that we pay for with our taxes.  And like it has been said, turn that anger into action, with phone calls to your MLA, to your MP, to anyone who might remotely have some influence.

Talk it up, start a blog, they can do amazing things, as I found out when going through having to deal with a private company that simply couldn't bother to provide even staff who understood simple English words like "Don't Pull" or "gentle".

Guilt comes with the job as well, and nothing will change that. One has to just find what works for them, to push those feelings aside, to try and catch at least one good deep breath. I wish I had taken more "me" time when I could.

I can't even fathom the stress you are having to deal with, but this place has a lot of good listeners, so vent as much as you want, because just that alone, can help take some of the load off your shoulders, to get you through the next minute or two.  People here, do care, least from what I have experienced, far more than some supposed friends and family did, so do keep on coming back.

And do keep on trying, it is all any of us can do, when it comes right down to it. Tomorrow will be what happens tomorrow for now, we deal with now.

Hugs
 
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Reply by jorola
29 Sep 2014, 4:07 AM
Hello Dar,

I am sorry you had to find yourself here and sorry for your situation. I undertanding the fear of not knowing what lies ahead. My husband also has lung cancer - stage 3 b and so close to stage 4 it is not even funny. He ws diagnosed in April of this year. This place has been a place of safety, support and amazing kindess. I agree you need some more help. I hope that you are able to get some more. Talk to agency, gov etc and do not be afraid to let it go. Jenn also has an excellent idea.

I wish there was more i could say or do. Just know we are all here to listen, support and help where we can.

Thinking of you and sending strength.
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Reply by JennJilks
02 Oct 2014, 2:22 PM
Dar, you write: "I feel like i am so alone, left in limbo, i have no idea what lies ahead, what will my husband go through? "

Truthfully, while each patient is different, many diseases have a predictable trajectory. The reason for having 'staging' criterea and definitions is to allow primary care teams to perceive your situation and make the correct calls.
I have found, however, that many nurses (i'm not disparaging them, but they find palliative care difficult, as well) believe that it should be a secret amongst the clan.
Nurses and agencies are totally hampered by the government. They will give you the hand, but are having to spew policies. There are shortages of nurses (25%) and PSWs in Ontario, I'm sure across the continent. If you look in the want ads, you'll see ads all the time. 
If you cannot cope, going to ER is the best place. They will get your spouse into a long-term care, or suitable placement before the CCAC will. There is no shame in being realistic in stating you are burned out. My late mother died on her couch, and I ended up on anti-depressants balancing my work and my caregiving. Dad died in LTC, peacefully, in a setting that wasn't ideal, but I was sleeping in the room beside him. The staff prepared me for 'the end', even though it was a lousy institution overall, and I wasn't alone.

If you want more information, read on:

I was at a workshop for PSWs and nurse training, as part of my volunteer training, and was curtly corrected. But I found that when caring for my father, these things helped me gain some understanding of how I can advocate and nagivate the end-of-life care that is required of us. When you do not feel you can cope anymore, there are hospices that will help. Both physical settings, and hospice volunteers, like myself, who will provide information and/or moral support.

Here are a couple of things that might help.
Firstly, ask your nurses (doctors are in denial) about the disease trajectory of your hubby. It helps build some perception into your caregiving assignment. It is something that has been a 'new' idea, and should not be a secret. 
It's not being morbid. We are all going to die. Our disease governs our needs, symptoms, preparations, and pain management. 


Some decline rapidly, others slowly, with recovery in between. Others decline in a stair-like deterioration. All are normal, depending upon the disease. Many are predictable, even if timelines differ.










Disease Trajectory

The 8 stages of chronic illness trajectory


1.     Initial presentation of situation; occurs before any signs and symptoms of a disease

2.     Trajectory onset

3.     Crisis: potentially life-threatening situation

4.     Acute: post crisis-symptoms controlled

5.     Stable, symptoms are controlled

6.     Unstable: e.g. foot ulcer,

7.     Downward phase; progressive deterioration; mental & physical

8.     Dying phase, weeks, days or hours preceding death.

Secondly, print these off, when you are ready, they will help you understand what is in the future: 










PPS


Victoria Hospice Society Palliative Performance Scale (PPS)- Version 2 
Read more here:


Assessment tools & palliative care clients


 

 There is no reason why these things should be secrets.
You are not alone. There are thousands of people in your situation, or have been in your situation.
You feel as if you are sitting, alone, in the dark, tyring to cope, when there are people who understand and are right next door to you.
No one told me about hospice volunteers. No one told me what to expect.

This is what I have learned, and I share with my caregivers who need the information. 


The trajectory of a disease can be a gradual decline, or a series of declines, or a sudden decline in biopsychosocial symptoms. This means that a person with cancer will have a predictable decline in their physical (biological: mobility, food intake, awareness of their surroundings, ability to communicate, or to think abstract thoughts), psychological (mental acuity) and other behaviours. What often happens at end-of-life is that residents are unable to state their needs, whether it is to avoid food, limit liquids, refuse to be hauled out of bed three times a day, and to be left alone. Many at end of life prefer to be solitary, and quiet. Often soft music is an option. Peace and quiet, often missing in the noisy hallway of a LTC, is important for the resident.
 

 Do not be afraid. You will be able to do all that is asked of you. You will not be asked to do more than you are able. You cannot make mistakes. You are decision-making for your loved one.
You are making decisions for your family and your family situation. 
Simply do the best you can, with the information you have on hand.
all the best. 
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Reply by Dar64
23 Oct 2014, 3:14 AM

Thank you all for your kind words and replies, i am sorry i have not been able to get on since posting, but life has a way of throwing a lot of curves my way, my aunt passed away and now my brother in law. I have been so un impressed with the agencies that are coming in that tomorrow we will be filing the papers for hospice as a back up. We will also be going for a tour of the hospice. The Dr.'s have now stopped my husbands bone builder, since not getting the bone builder my husband has been complaining of increased pain in his hip, when the physio therapist came in she said she had not seen my husbands scans, so i popped the scans into the computer to show her where everything is effected. Her response was that she would not be surprised if his pelvic was fractured. There is a 6.5 cm hole in his pelvic bone, his ribs break if he coughs to hard, his feet & hands swell and wakes up with bruise like marks, i point every mark out to the nurses and Dr., including the pressure sores on his rear..  Yes i am in Ontario somewhere on the shores of georgian bay, (not allowed to give specifics i think) everyday poses a different challenge, my husband is not able to clean himself after using the commode which is now my job. along with sponge baths. Since caregiving i notice so much more in the everyday challenges of pushing a wheelchair, sidewalks not maintained ( i almost dumped my husband out of his chair due to upheavel in the sidewalk). I refuse to just close a blind eye to things, we (human rights and us) are shedulled for mediation with skyline apts on Oct. 28th after that date i may not be able to disclose what happened as they want confindentiality, however if we do not settle at mediation i will be taking our whole story/ situation to the media with the help of my social worker. So, many things irk me these days, i have been doing my family tree for the past 9 yrs. i know my family has worked hard for this country, my husbands family has worked hard yet this is the way we get treated??  we send billions of tax payers dollars to other countries, i am not being predjudice and believe we should help as much as we can but not at the expense of our own. Litterally we enable other countries to be dependant instead of enabling them to help themselves. When i have some spare time i will be telling the government just this, they need to be reminded from time to time they work for the people.


Hugs to all who need one and again thank you all for your kind words and replies, it truly does help to be able to vent..

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