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Caring for Dad with Idiopathic Pulmonary Fibrosis 
Started by suehb
23 Feb 2015, 7:45 PM

My dad was diagnosed with Idiopathic Pulmonary Fibrosis in 2011.  He is 88 years old.  He got very sick with Influenza B a year ago and suffered respiratory and heart failure at that time.  He was hospitalized and is now on 4 liters of oxygen and is on medication only for his heart and acid reflux.  I am more and more concerned that he is becoming less active and therefore more out of breath every time he gets up to do anything!  He is also becoming more depressed and a bit anxious as his disease progresses.  He is less able to care for himself all the time.  CCAC will be coming in shortly to asses him.  I'm surprised actually that he agreed to that!  I am his only child, he lives with me and my family and I am the main caregiver.  I also have a teenager on the Autism spectrum so I am starting to see the signs of burn out in myself.
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Reply by KathCull_admin
23 Feb 2015, 9:32 PM

Hi suehb, 
Welcome to our community – I am glad you found us.

Another member, NatR mentioned CCAC in a post yesterday How do I support the caregiver (my dad)?  It sounds like they can do a comprehensive assessment - for your fathers’ needs and yours too.  The Virtual Hospice also lists resources available across the country. You may already be aware of them but just in case Programs and Services will link you.

Oldbat started The Long Haul and in it she said, “Then there is the fear of the expected, experienced by those caring for someone with a long, ultimately terminal illness.  This, along with all the other fears, makes life unbearably hard.  Harder still when, regardless of the cause, there appears to be no end in sight.  Nor do we want one.” 

Are you and your dad able to talk with each other about worries/concerns? Does he worry about you too do you think?


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Reply by suehb
23 Feb 2015, 10:41 PM

Dad and I find it difficult to talk about anything related to his illness.  Unfortunately this is a lifelong habit we have gotten into!  I know he his worried and scared....I saw that in the hospital a year ago.  He was hospitalized in the US which was scary in and of itself!  We felt like we would never get home!  Plus this past year has been a nightmare of inusrance settlements.  The fallout has been horrendous!  I have spared him all of the stress of that by dealing with it myself and not telling him about the difficult stuff....at one point I was scared we would lose our house!  That has all been settled now, but it was weeks of stress and lack of sleep.....I have not had a break from him or the stress in a year......
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Reply by JennJilks
23 Feb 2015, 11:48 PM

Sue, take heart. You can only do what you can do. 

I was in your situation, with a father who wasn't able to process what was going on. (Braint tumour and dementia)
In hindsight, after much research, I realized that the doctors and nurses owed us a treatment plan, information about the disease trajectory, and CCAC owes you some support.
I had to look up IPF. This information from the NIH seems clear. They don't know what causes the scarring on the lung tissue, and it will get worse over time. The disease trajectory is pretty clear. I have a client with ALS, who has a similar disease trajectory. Your home care nurses ought to be providing you with support.
(The good websites are the foundations, or societies (.org), and government info sites (i.e., gov))

Since your father is afraid, which stems from not knowing what is going on, you can give him information, and interpret it for him, or simply assure him that you will take care of him.
My late mother, bless her heart, didn't tell me about her illness. She didn't want any information, either. She was a worrier and simply decided what to do on her own. I totally understand your frustration. 

Know that the healthcare system will support you as best it can. If you are overwhelmed, and you are unable to manage, they suggest you simply go into emergency. There are emergency funds for people like this, who are then sent home, which you can access.
At this point, comfort measures are all that can be done, it seems from that which you have written. Know that you only be there for him. Ensure that he isn't in pain, and demand that the nurses get a Symptom Management Kit for you. This is just in case there is unmanaged apin at 2:00 a.m., and that way you can avoid going into the ER.

My suggestion is to talk to a local community support group, there are many. CCAC should connect you to a volunteer, like myself, who will give you some respite. CCAC should give you several hours of a paid personal support worker (PSW) who will do this for you. You can ask that they help with certain tasks, such as bathing your father, etc. But find out first what support they will pay for.

One trick I've learned with my clients, is that when they object to me, or a professional being there, I tell them that I am there for their caregiver (spouse, son, daugher, whomever) and to give them some peace of mind. You can be insistent with your father. You need the help. That is how I convinced my mother to allow someone into the house! (The place was a mess, I was working full-time, and I was far from my community.)

All the best to you and yours. We will be here for you, even virtually. This is an amazing community!
cheers from Perth, ON

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Reply by suehb
24 Feb 2015, 12:53 AM

Jenn, thank you so much for your kind words of wisdom!  They really hit home!  We currently have no care plan for him....and we deserve one!  Dad doesn't seem to want to know anything and so is leaving it all up to me, which I'm ok with.  I'm hoping he'll also realize that any caregivers who come in are there as much for us as they are for him.  Right now he only seems to see things from his own point of view even thought he knows what its like to be a caregiver.  He looked after my mom at home when she was dying from cancer.  He's forgotten.  But then he wouldn't accept much help from CCAC then either, doing much of her personal care himself.  I'm hoping for some respite.  I have not been away from him for more that a few hours at a time in a year now.....I do get out during the day to go for coffee and other things.  My husband and son have been very supportive in making sure I do get a break even if it is only for a few hours.  However, I'm finding that I can spend less and less time away from Dad.
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Reply by JennJilks
24 Feb 2015, 1:38 AM

I'm glad I did something for you!
My husband and I are managing his prostate cancer and we just laugh all the time. We have to.
A year ago I was emptying his catheter bag.
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Reply by Razz
24 Feb 2015, 9:01 PM

(((suehb))) <- these are hugs 

It goes without saying the you need HELP and right now.  It is good that you see where all the stress is leading and now is the time to take some steps to avoid that "burn out".  Then you'll be of no use to anyone.   It does not help that your Dad has a disease that is little known and even the medical community is often uninformed about it.  My husband (62) has Pulmonary Fibrosis Secondary to Sjogren's Syndrome..... but it took more than a year of tests, procedures and specialists to get that diagnosis.  We are fortunate in that the progression of his fibrosis will be slower than that of IPF. Currently his health is good and his PF is not effecting his day to day living.  What kept us sane during that time was connecting with others who have the disease and for myself with others who were caretakers.  I found that it was so important to find that I was not alone with my fears, concerns and questions.  

It sounds like there are a number of things going on with your Dad and a trip to the doctor sounds in order.  Not just your family doctor but also with his Respitory Specialist (someone trained and with experience with dealing with patients such as your Dad).  It sounds like he's due for a total work up and his oxygen needs especially.  Lack of oxygen can create all kinds of problems including emotional and mental ones.  It also creates a lot of anxiety and that is one situation that your doctor can address.  Many patients are helped with medications for anxiety and depreseeion which will lower your Dad's stress and perhaps help with communication between the two of you.  

Definitely get Home Care involved and find out what services they can offer you/your Dad that will lighten your load.  There are also some care facilities that offer respite spaces so that the care givers can get the breaks they need.  I would think that your local Home Care or Community Care folks would we able to help you with that.  

There are also a couple of on-line support groups specific to IPF/PF that you may be interested in joining.  I know for me they have been of tremendous help in learning more about the disease and how others cope with the constant changes it brings.  



I am happy to hear that you can get out now and then for short breaks but as you yourself know that's just not enough when you have such intensive "caring" to do.  I like the idea of telling your Dad that the help is for you not him....for that really is the truth.  

Wishing you all the best in accessing as much extra services as you can and first on the list is to get your Dad a full assessment (which I know won't be easy as he won't want to do it).

be good to you - Razz  
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Reply by suehb
25 Feb 2015, 1:05 AM

Our family doctor made a house call a couple of weeks ago and we saw the respirologist just before Christmas, so he is getting regular medical care, just no care plan!  The respirologist hasn't really done much though...... And has never really offered any info or offered any rehab for him. He just seems to be letting dad slip away. We don't see him again until June. This is why I want ccac involved as well to help me monitor him better!

Dad has also started to try to put guilt on me when I go out.  This has just started in the last few days.  I told him I had to take my son to an appointment and he replied with "what else is new?"... Just great.......
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Reply by Razz
25 Feb 2015, 4:05 AM

Ack ...... I just lost a rather long response to the gremblins in cyber space.  Gee I hate when that happens Yell.   So now I'll be a bit briefer since I have to get going shortly.  

Although it sounds like you Dad is getting fairly regualar medical attention I can't help but feel that some things may be falling inbetween the cracks (such as not having a care plan that is set up by a care team).  I'd be pushing for that for sure.  

A couple of other things come to mind as I read your posts (besides the incredible fatigue and frustration you must be feeling).  One is when the family doctor came to visit did you discuss with him your Dad's depression and anxiety?  I really had to push my husband on that one and finally told the doctor myself while my husband was in the room that I was also really concerned about his mental health.  It's a very important component in day to day living and once the doctor started asking him pointed questions he soon agreed with me that anti-depressants and an anti-axiety medication was in order.  Once they took effect my husband was kicking himself for not bringing it up sooner.  It made it so much easier for him to think strait and helped him to be able to face his disease straight on.  Also is VERY common for the elderly to have undiagnosed depression which is a shame because there is help for them.  

Your repirologist sounds like he has the beside manner of a bed-pan.  It's cold, uncomfortable and not user friendly!  If he's not getting the treatment you think you both deserve I'd ask for a referral to a different one ....... ask for a second opinion!  On the Canadian Pulmonary Fibrosis Foundation they list the top center to got to and doctors to see as:

Hamilton, ON

St. Joseph’s Hospital – Dr. Martin Kolb/ Dr. Gerry Cox

Be a squeaky wheel if you have to and sometimes knowing that you're not sitting back can help with our attitudes as well.  Now we both know that a new referral is going to take a long time to get that appointment.  In the meantime did the respitologist give your Dad a requistion for a current Lung Function Test?  This is a very useful and important test to have done and my husband has one every 3 months.  If that isn't happening then get on the phone and see if you can get the receptionist to get the doctor to request one.  There is a lot of important information to be gained by that test.  I have a suspicion that the results will show that he needs to up his oxygen intake.  A lot of patients are reluctant to do that but soon find that it's a good thing as they feel much better and can do more things.  Which in turn is a good thing for you.    

I can really heard the toll that all this caregiving has taken on you in your posts.  I have such admiration for those good souls who have to deal with such serious and chronic illness never mind the challenges of living with a senior.  My own mother is 93 and has mild COPD and moderate dementia.  There is not way I'd be able to take care of her in our home and adding in a teenage would sent me screaming to the hills.  I'm afraid that I would end up doing something illegal.   She's in a lodge right now but I can see that her level of care needs is slowly getting higher and she'll have to move to a different care center.  I so do not look forward to the day that happens but in the end that is the reality of her situation.    

I think we all want to be the dependable and loving child and take care of our parents when they need it.  Some how we feel that we've betrayed them if we don't run ourselves ragged in doing that. Taking care of them at home instead of a cold and miserable care facility.  However I think it's important for people to realize that it is not a selfish thing or an "un-caring" thing if they decide to move their loved one into a care factility.  I know that no one like to think about that and heaven knows we've heard a lot of "horror" stories but they can also be a God sent to both the family and the patient.  There are many extremely good facilities and in the end it may really make life easier for both you and your Dad.  He will no longer feel like a burden and you will have some space to breath.  Just something to think about.  

With a disease like IPF things are going to go down hill fairly quickly and your Dad's needs are going to get more strenious and involved.  This is where it would be great if you could get some serious "in home" assistance.  Remember your health is just as important as your Dad's if not more so.  You are mentally and emotionally exhausted would be my guess and that's just no way to live.  If possible try and find a support group for care givers as it's so important to see how "normal" you are and how over and beyond your service to your Dad is. And even one for parents of children with Autism as well as there are unique challenges that come with that situation.    

Reaching out here is also an excellent thing to do for yourself.  It give a voice to all those negative feelings that you have been holding inside.  Talking about them will really help in getting rid of all that pent up stress.   There is probably nothing you could say that wouldn't have other caregivers nodding their heads in agreement.  Take advantage of it and feel free to express yourself - it's a safe environment to do it in.  

be good to you - Razz  
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Reply by KathCull_admin
23 Apr 2015, 4:29 PM

Hello everyone,

Suehb, how have the last couple of months been for you and your family? Has your father's health stabalized? What has been helping you through as you care for your parents and your immediate family? Please know we are always here to listen.

A new member, dorms has started the thread Husband has Mesothelioma. I know this is not the same as IPF but I imagine some of the symptoms might be. The fears and worries are ones you would all know too well. Could I ask you to consider responding to her post?

Thanks for thinking about it.



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