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how to deal with an ongoing illness and drs. telling you husband has 6 month to live 
Started by Xenia
30 Dec 2013, 5:00 PM
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Reply by moderator | modératrice
30 Dec 2013, 6:03 PM
Hi Xenia,

I'm so glad you found us. Hearing that your husband has 6 months to live is tough to say the least. My heart goes out to you. 

There are many people in our little community here who can relate to what you're going through. I've just put the kettle on. Let's start by getting to know you a bit more. Can you tell us more about your husband and his illness? Are you taking care of him at home? How are you doing?

Colleen  
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Reply by Xenia
30 Dec 2013, 11:48 PM

Hello:

I am caring for my husband of 58 years, this January 15th, he is 85, just turned so in November.  I am 77.  He has been in and out of hospital this past year and this first of October the drs. stated in his progrnossis that he has 6 moths to live therefore he has to have palliative care.  He is a steady person, does not whine or grumble, does not ask for much but does not talk about his illness.  He had a near death experience some 30 years ago when he had a heart attack when they were doing an ango plasty.

He has congestive heart failure, diabeties, kidney problems, COPD , cancer of thelung which they told me some time ago that it was slow growing and a few other things. 

What is bothering me is that when he came home he was so very ill and with family and my care he seems to have blossomed, he is still very ill but he looks so good some days that I think the drs. made a bad prognosis.  I go to bed thinking perhaps he will not see the morning then all goes well and I ask myself, what is going on.  I have been reassured by the visiting nurses that CHF is hard to diagnosis as far as a time frame of life as it goes so slowly.  He has some pain, more some days than others and as he is very stoic he keeps his pain to himself and when he calls Uncle he has pain.

I feel like I am living two lives...one in a waiting game and another in a get well game and lets get this over with and .....am I wierd, crazy or what.

We have a very supportive family including the sons in laws.  We are not rich but comfortable as we worked and saved so we have all the things we need in our home to make life easier, a bed that lifts the head and feet, all the bathroom needs, wheel chair, but he does not go out, walkers,,etc.

Guess that is all I have to say for now, I am doing well but have days where I wonder how long this will go on.

Thanks for listening.

Xenia 
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Reply by marstin
31 Dec 2013, 1:32 AM
Hi Xenia,

I'm not sure which is worse, being given a timeline and just waiting or not knowing how long a person has. I guess they both have their pluses and minuses. With my partner who passed from bladder cancer, we chose to not know how long he had and once he came home from the hospital where he seemed to be doing well , he declined quite quickly and passed away within just over a month. The day after his passing, my mom went into hospital with CHF and just when she appeared to be improving, things went sideways and they put her in comfort care and said there was nothing they could do. That all happened within 7 1/2 weeks. The heart and the kidneys seem to go to war with each other and when that happens it's a frightening thing.

Is your husband totally bedridden or is he still able to get up and walk around? You are not wierd or crazy to feel confused by all of this. I remember at one point with my partner that he came home from the hospital on a day pass and seemed to have such a spring in his step. We had so much hope that he was going to survive as at that point we hadn't been told that he was terminal.  Soon after that his decline was apparent. It can really mess with your head as you try to make sense of it all.

Having supportive family can make all the difference in the world. At least you have people that you can turn to.

We are here to listen to you whenever you want to talk. Many of us are survivors and are great listeners.

Hugs,
Tracie
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Reply by NatR
31 Dec 2013, 2:55 AM
Hello Xenia,

i am am touched by your note to the forum.  You sound like a great lady, with lots of energy and obviously devoted to your husband of many years.

it is hard to watch your spouse go through good days,bad days, and it sounds like you are doing the very best you can to comfort, care and support him.

welcome to a group of people like yourself, caregivers who give day in and day out.  It's when the days get long, the nights are longer, that the forum serves it's purpose - to connect like minded people - ordinary people, all doing the same thing.   All we need is someone to hear us when we are tired, when we need an answer, or someone to just listen.

i have lost loved ones as well, and like others on the forum - I welcome you to a place that you can lean on others, vent and get advice or encouragement.

sometimes it's all we need - a listening ear.:) it's free of charge!

it's really hard for you to see your husband rally, have good days and then wonder if it was a mistaken diagnosis.  I think all you can really do is take one day at a time, the good ones, the iffy ones, the bad ones.  

You you mentioned having supportive family members.  That is your gift.  Please make sure you do take advantage of those in your family who can give you regular break times, personal time...a few hours, or a day or two, on a regular basIs. It's important to take care of you - as well as your husband.

i have worked in long term care,  as well as a family member for the past four years - who is now in a respite care situation,  I didn't realize how much energy I gave, til after the fact.  We do it for love, we do it thinking we can keep going...we can't.  So take care of yourself, your husband needs you too;)

sending you my thoughts tonight,
write when you can,
best wishes,
NatR

 
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Reply by Xenia
31 Dec 2013, 5:25 PM
To All:

Thank you so very much for your understanding and helpful advise.  I find it hard to ask for help as I have been strong for many years, John going into hospital and out and knowing that the hospital stays are a preamble to his becoming weaker and sicker all the time and yet when this time came along I found I was sad, tearful and now I am stoic and find that I almost have no feelings.  Why?

Our children have grasped the knowledge that their father is failing each time he goes to the hospital with pneumonia, heart problems, etc and such.  He seems so bright at times and then sleeps a lot which I know is common and that is when I find that I feel alone.  Oh well, enough of this pity party for myself.  The nurse and the OT are coming over this morning and I have things to do. 

Happy New Year to all and may those who are dealing with ill partners, husbands, family members, etc find comfort in the words of the others who share our caring for loved ones.

Xenia
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Reply by NatR
31 Dec 2013, 5:38 PM
Hello Xenia,

the note was lovely, thank you. 
The hard times for you are when you sit by yourself while your husband sleeps.  That will be  the time when you could use respite, whether family member or community care.

being isolated, too much time to think, is when you need to plan some things to do either with family, friend(s) and community (church, social group, movie night for example)

i think that your empty feeling is kind of like a buffer, a reaction to the reality of your husbands decline.  It's like you are keeping from feeling the pain.  I am speaking only as a family member who has felt the pain, and who has tried to not feel it at times.  It's hard to explain, but when you mentioned how you felt - it seemed that I understood what you were trying to convey.
It's almost like a shock effect, when you don't feel anything and you feel you should.

whether I am right or wrong isn't as important as sharing the feelings, bouncing ideas off each other and offering a listening ear. ;)

wishing you and yours a Happy New Year as well. 
and it's not a pity party, it's sorrow, it's pain, it's something we all have felt or are feeling.  We all do it differently at different paces....
we are a community of caring;)
sending my thoughts your way,
 NatR
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Reply by Xenia
01 Jan 2014, 6:03 PM
Happy New Year to All:

Another day over, had the nurse call and the OT came suggesting we put a bubble cover on John;s bed, she was saddened to see we had purchased our own hospital type bed as the staff at our hospital discharged John quickly without a lot of communication and it took almost a month to get him on palliative care thanks to our GP.  We are thankful for the care we do get from the nurses and our GP but so much time was lost because of lack of communication from the hospital and what to expect.  Oh well, it is in the past so I look forward to a better year and understanding from the Palliative care program as they are out in the field and see how patients are discharged as the hospitals direcitve is to get patients well and out to their homes.  Often times too soon but the nurses and doctors in the field see this often and are there to pick up the pieces.

I am so thankful we live in Canada and that we have good medical coverage or else we would have spent most of our savings to cover the costs of meds, etc.  Now we look forward to a New Year full of better times and leave the bad behind, mind you I will still become an advocate (and remain one as I am now) for patient quality care and better communication with family regarding the loved one's health and required care.

John is watching TV on New Year's day, the family who live in our city will pop in.  The others live an hour away and they will wait till the weekend to pop in as they have to go to work to-morrow.  Another problem is the cost of travelling over tolled bridges can be very costly.  It was $1.50 each way now it is $3.00 each way and it is expensive along with the cost of gas, etc.  When John was in hospital they were there every day they could and often in the evening as they took turns coming to see him and see how I was doing.  Thanks god for kids like that, I often wonder what we did to deserve such good kids as I look at myself as a mother and I was often hard on them, sometimes too hard, but they all have jobs, 3 out of 4 own their own homes and in this day and age it is wonderful as often it is impossible to own a home now adays.  Enuff of this pontificating.

I feel so good being able to just sit down and type what I feel, takes care of some of my anxieties.  Sure was a good thing I learned to type on the old remington and Underwood typewriters years ago.  Now, I can almost understand a computer and all it can do for one, not just put in a bunch of carbons and hope that you didn;t make an error and have to erase it.     I digress, but thank you all for your concern and help, I most certainly appreicate it and you have been most helpful.

Xenia
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Reply by NatR
01 Jan 2014, 6:23 PM
Happy New Year Xenia!

what a pretty name by the way,  you sound like a warrior princess...and in some ways I think you are:) 

i was was glad to read that you enjoy writing updates to the forum!  It's almost like giving report, checking in, gaining a response, maybe advice, maybe just hi, thanks for writing!

i believe that helps a lot with feeling overloaded at home, a bit isolated, able to share things with others going through the same things, and sometimes not able to say to family, children, what you are feeling, what your frustrations are, or how your energy level is.....that does my heart good - to know we can connect, support;)

i write ite long sentences sometimes, sorry:)
i had to smile when you commented about being able to type, and having learned on the old Remington.
i had a Remington too, and typing was my best subject in high school, the one I enjoyed the most.  As you can tell I was not the best student, but like you I have wrangled with computers and learned to fight my way into social media,and websites like this one....and it's very fulfilling to talk to others.

costs of travel are indeed expensive, just having a vehicle costs so much.  Glad that you and hubby will have company today.  Is your husband watching the hockey classic game?  Whatever he's watching I am sure he will have a good day with your children.

glad that you are coping,that you are advocating, that patients and families at home are asking for and identifying needs to make home care better.

have a good day Xenia,
best wishes,
natR

 
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Reply by marstin
01 Jan 2014, 7:06 PM
Happy New Year Xenia and Nat!

How well I understand your frustration with the lack of communication in our health care system and the overwhelming need to want to find a way to fix it. There has to be a way to keep patients and their families informed on what is going on so that it isn't such a struggle to get the information that we need. I saw this time and time again with my partner and my mom.

As you live in BC, I'm guessing you are talking about our wonderful Port Mann bridge and it's crazy toll fees. Although it's convenient I know a lot of people are opting for other ways to steer clear of it when at all possible.

I miss those old typewriters. My typing skills were fairly good on them. Still, with computers and all of the new things that we are forced to learn I'm not the greatest with anything except the keyboard. My kids always laugh and say I'm technologically challenged. That is true.

How fortunate you are to have such a great family. Mine fell apart when my mom passed away and there hasn't been a lot of support. That's where this safe haven has made such a difference in my life. We all are able to lean on someone when we are at our weakest and then able to support others that are needing someone to listen to them. We're all strangers that were drawn together and yet it feels like a huge family of loving, caring people who truly understand. It's certainly been a lifeline for me.

Hugs,
Tracie
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