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My husband has IPF (Idiopathic Pulmonary Fibrosis)  
Started by Razz
16 Nov 2013, 8:56 PM

I just found this forum this afternoon as I was "surfing" for information about how hospice/palliative care opperates in Alberta.  Fortunately for us at this point it is not something we need for awhile.  However on another forum I'm a member of I've heard so much about hospice care in the US that I was curious as to how things work up here. 

Idopathic Pulmonary Fibrosis (fibrosis means scarring) is a progressive lung disease that has no cure (except a lung transplant) and minimal treatment options.  The prognosis based on a "medial" point is not encouraging with a life expectancy of 3-5 yrs. post diagnosis.  HOWEVER .... like so many other diseases there is a huge spectrum of life expectancy and so that number really doesn't mean much.  In fact it's one I wished wasn't posted as all it does when you are first diagnosed is to scare the "bejeesus" out of you.  It's actually one of over 100 of lung diseases that cause fibrosis in the lungs and if you're lucky you may find out what the cause was in your own case.  Some are well known such as "miners lung" and "aspestious disease" and also those that are caused by certain medications and treatments for other diseases.  Idiopathic is a professional sounding word that actually means "we don't know what the heck caused it".   

A lung biopsy done on IPF patients can be a risky thing if they have a advanced case of the disease or other medical conditions.  And the procedure itself will cause scarring.  However at present it is the only way for doctors to "perhaps" and "maybe" find the "causation" of the fibrosis and thus may provide the patient with more treatment options.  Since my husband is fairly young (61 ... I remember when that was ANCIET!) and is in other wise great shape and health we feel the benefits far out weigh the possible costs.  So like so many others it's a case of hurry up and wait for the appointment.  

I haven't really looked through this site in depth but am looking forward to doing that.  Who know I might even find someone else who is facing this disease as well.  As time goes on I will end up being my husband's caretaker and I will be alone in that.  I'm not too worried about that yet but it does sit in the back of my mind somewhat.  Right now my "duties" fall under the support heading and what he really, really needs right now is support concerning his mental health issues.  

After the diagnosis the first thing he did (and so common) is to go into denial, convinced that he had been misdiagnosed.  A Bronchoscopy confirmed the disease and left him with facing the reality of it.  It was an extremely difficult thing for him to do but he came around.  However while this was going on things where he works have reached an extremely high level of "toxicity" and he became increasingly depressed.  Then he started to have panic attacks.  I was extremely concerned at this time never really knowing what his next action would be.  I've been waiting for a couple of months now to come home and find him sitting here telling me that he told his employers just where to put it!!!  Which would be a HUGE mistake as we are really going to need the good benefits his company offers.  

Yesterday he surprised me by getting all the paper work he need from his employer and took it in to the doctor to fill out.  As of Friday he is not on short term disability.  I have very mixed feeling about that HOWEVER I do think it's a much better choice that what I was fearing.  What happens from here is any body's guess.

Well I've rambled on long enough.... I had really meant to just pop in and say "hi".  My thinking is that "caregiving is caregiving" in terms of stress, overload, burn out, anger, frustration and at time resentments.  I'm looking forward to getting to know some of you better.

be good to you - Razz  
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Reply by Razz
16 Nov 2013, 9:04 PM

PS - first off I need to tell you that I can't spell very well and have long depended on Spell Check.  Am I right in assuming that this site does not provide that for those posting on the forum?  If that's the case I'm big trouble - LOL .... as for above it shoud read "asbestos" not "aspestious"!!!  

The other thing I'm sure you can tell from just my first post alone...... I can't be brief.  I've tried, boy have I tried, but I'm a natural born storyteller and come from a long line of story tellers. It's just against our "nature" to go from point A straight to B.  Oul lives never take that direct route and for me I can easily get sidetracked with back alleys.     
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Reply by moderator | modératrice
17 Nov 2013, 1:58 AM

Welcome Razz,

I'm so glad you found us as you were scanning the Web today. We love storytellers especially those with creative spelling abilities Smile

You are wise to look into options before you need to make decisions under the distress of immediate need. I hope you've taken a moment to explore the Virtual Hospice website a bit more. It is chalk full of resources. You may be interested in reviewing some of the articles written by our clinical team in the Topics section. It includes articles about emotional health, spiritual health and caregiving.

I look forward to introducing you to our core members, such as Marstin, NatR and others. I'm sure they join me in welcoming you soon.
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Reply by NatR
17 Nov 2013, 2:56 PM

Welcome Razz,

Colleen is right, storytellers are welcome, and not only are you a story teller but you also have a definite sense of humour!

spell check exists on this site, but it definitely comes up with words I never wanted to put, and Insists on "helping" me type words I never heard of! Or wanted to post (making me feel inadequate as spelling is something I try to do well)

But never fear, this site and forum is not about the errors or un intended words
we (I) try to read them along with the rest of the the post, automaticallt correcting or decoding them in my mind:)

welcome Razz,
you have found a place where you can ask, vent, worry and report any kind of day, whether good or bad.

i used to live in alberta but am in northern Ontario.  Distance is not a factor here as we are all as close as our keyboards computers and devices - thank goodness!

Firstly I am sorry to hear about your husbands diagnosis and to say you as his caregiver and advocate are going to be so important to him, his journey.

support for caregivers is minimal in so many areas yet. Caregivers have been the invisible yet most important lifeline for patients, family members 

I have worked as a caregiver PSW in long term care, and just recently completed a hands on period of 4 years with a special needs family member.  I have an understanding of the fear, the stress, the toll it takes - to caregive, both mentally and physically.

i look forward to hearing more from you as you write your story.  In a way this is like journaling but with responses and support.

wishing you a good day and cyber hugs
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Reply by Razz
17 Nov 2013, 3:43 PM

Thank you Colleen and NatR for the warm welcome.  It can be a wonder at times, this means of instant connection to people with similar concerns or interests.  You also get to meet such a diverse group of people from all over.....it's a great thing to have.  On the other hand when folks are from different countries it's sometimes hard for them to understand that you just can't call "X" or get in touch with "X" as they don't exsist where you live.  The upside of that however is that I usually learn something new every day.  

Right now I'm thinking that I may be the person needing the support as my husband is feeling good about his decision.  That's a good thing but it results in so many questions about the future swirling in my head.  In many ways I'm sure it will be like he retired early and be the typical "man now home driving his wife crazy" situation.  He was so depressed that he couldn't have continued on the way things were.  I totally understand that as I have been "challenged" by depression nearly all of my adult life.  At one point I did have a wonderful "crash & burn" myself and he was very supportive to me.  "Tag - you're it!" - now it's my turn I guess.  He was always the "strong silent" type and right now he's so needy.  This difference is certainly giving me the opportunity to give myself an "attitude adjustment".  I would consider myself strong but never the silent type - LOL.  

I'll just add in here for a bit more background the fact that I'm also the only "caregiver" for MOTHER who will be 92 in Feb.  Growing up she was one of those people who was opinionated, bigotted, judgemental and set impossibly high standards that my brother and I could never meet.  I was 57 yrs. old before I ever heard MOTHER spontaneously say "I love you".  And at the time I wanted to shake her and ask "who are you and what have you done with my mother?"  

About 4 yrs. ago she had a fairly major fall and her health declined after that.  In the end it was discovered that she had been expeiriencing a series of TIAs and had been for quite awhile.  We were able to move her into a lodge setting not too far from where we live and where she can continue to partiscipate in her favorite hobby - smoking!  It's a private facility so she can smoke in her own suite.... and she does plenty of that.  I think its fair to say that she smokes anywhere from 1 1/2 pks to 2 pks/day.  She very dedicated to this activity.  Interestingly enough although she does have a degree of COPD (NO she does not have supplemental oxygen- the doctor and I both decided that would just be too dangerous at this point) the rest of her health is not bad for a woman of her age.  Dementia is creeping in; some days much worse than others. but she is still able to take care of her "personal" needs, take her medications, get down to the dinning room for meals and so far hasn't set anything on fire.  I so dread the day when she may need more nursing care as that will mean a move and then all "H" will break out.  I can't help but think God reached his hand down however because once she started experiencing the TIAs her personality totally changed.  At times I still have a hard time wrapping my head around MOTHER being "nice" but I have to say it's much better than the miserable old bat she was prior.  

So there you have it - not exactly the typical "sandwich generation" example but it's still me inbetween these 2.  I also have a daughter who often is in "crisis" but that's something for another day.  

Thank you again.  

Be good to your fine selves - Razz  
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Reply by J.D.
17 Nov 2013, 11:22 PM

Hi Razz,

I know that you will find support and resources using Virtual Hospice.  I sure did! 

You sure have your hands full and my only suggestion is that you pace yourself and do things for yourself on a regular basis.  I have encountered so many people who just give so-o-o much that they end up in the hospital.  If the stress takes its toll, you will not be in any shape to help the people that rely on you. 

Don't think it is selfish to take ME time~

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Reply by marstin
18 Nov 2013, 12:28 AM

Hi Razz,

I must say that I love your wit and storytelling. I also suffer from verbal babble-on but never worry about it on here because we're among friends. With the heavy loads that so many of us deal with it's great to add some humor to balance things out a bit.

Switching roles with your partner is quite a strange feeling isn't it? My partner Len was an awesome caregiver to me while I battled one health issue after the other over the years. I never imagined that I would ever be the one looking after him since he was always the healthy one. Within about 8 months he went from being the strong one to being diagnosed with bladder cancer and then losing his battle. Becoming a caregiver can feel so strange at first and then in time it just becomes your new way of life.

Your story about your mom is cute. At 92 I don't think you could change her smoking habit and hey if it makes her happy and she doesn't burn the place down then all the power to her. At least you now have a pleasant mom. I was the caregiver for my mom too. Although she lived alone, I was with her every day taking her to her appointments, shopping and her hair appointments. She was my closest friend. I have a brother who would take her out for dinner every two to three weeks but other than that he didn't spend much time with her and left all of the responsibilities to me. That was okay until Len was diagnosed and my time with her diminished a bit as he grew sicker. Near his final days, she became more needy and some strange things started happening with her. I feared a stroke but was unable to find the energy to try to get to the bottom of it and the rest of the family thought it was funny that she was saying strange things and her hands would suddenly just let go of whatever she was holding, usually her evening glass of wine. Long story but the day that Len passed away, my brother noticed her swollen ankles and took her to the hospital the following day. She never came out and we lost her 7 1/2 weeks later. Sooo, enjoy your smoking, happy mama. She sounds like she's doing remarkably well for her age.

Here on this site you will find so many people with different stories but in many ways we are all on the same page. We share our fears, our pain, our grief and our happy moments. It's like having one big family to support you. Wherever you are on this journey dealing with illness, this is a great place to share it all.

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Reply by NatR
24 Nov 2013, 9:31 PM

Hi Razz, 
been wondering how things are going the past few days.  

Your story about your mom was amusing, I think I and others can relate to colourful members of the family that we all have to sigh about and just let it go.

as Popeye said, I yam what I yam.  Heaven help those who have to put up with me at aged 90 - in fact I am sure there are days now;)

 Yes, there are places we can all reach out to, in our communities that are supposed to full our needs during stressful times, but as you said it doesn't aways do what we need in the moment - therefore the forum opens up a world of random connections that just might fill the bill.

hoping the past week has been okay, not too overwhelming - do write when you are able.
sending you a big hug. Auto correct keeps changing it to "bug hug" ! ;)

wishing you a good evening
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Reply by NatR
03 Dec 2013, 7:00 PM

Hello razz,

hope that things are okay with you.  Let us know how your husband is doing when you have time.
hoping that your caregiving is being balanced  with some Me moments - take care of yourself,

best wishes across the miies,
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Reply by Razz
09 Dec 2013, 3:08 AM

Thanks NatR for your interest.  Since my husband is now on short term disability he does feel much better.  He's gotten back into exercising regularily which is a really good thing for him to do.  I have to keep reminding myself that there is a real reason that he is off work and be patient.  He doesn't "see" all the little things that he could do around the house that would really help me and he's also very preoccupied with his own thoughts.  He's decided that he really wants to work on awareness of the disease and also get involved in some fundraising.  This is all great but it has almost become an obcession with him to the point that he gets quite cross if I interupt him.  That's what I mean by having to be patient and compassionate.  It's a good thing he is doing and I can see that it clearly is just one more way that he is trying to cope with the reality of his disease.  

This past week I've been very sick with a cold virus that I'm not suspecting is turning into a sinus infection.  In other words I feel like CRAP.  He bought me chicken soup one day but that was the extent of any sympathy from him.  I have to admit I have done some pouting this week.  

Thanks again.  

be good to you - Razz  
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