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Care giver stress, feeling lost! 
Started by janey49
20 May 2015, 8:49 PM

My  sister and brother and I are caring for our terminally ill Mother. She has IPF and is confused and bed ridden. We had a respiratory and cardiac event this past weekend. She is presently in hospital on the Pallative unit.  We were told she is near hospice  point but after talking with the Pallative. Dr. We feel despondent and unheard. He said she looks wonderful. Yesterday she is in diapers on 9 liters of oxygen, confused and unable to care for self. She is on a cad pump with hydromorphone and numerous other meds., ie. Midazealone.  He thought she could come home?? Maybe a nursing home. We are confused, exhausted and perplexed. We have been caring for our mother for 41/2 yrs. We have PSW's twice a day, nurse visit daily. We were told near the end the help would increase.  With cuts from the Federal government that is not so Any longer. What is the purpose of saying we can treat elderly at home until their death if we can't. We need respite separately I feel our lives are falling apart. No one has anything too offer!? We have quit jobs moved, turned our life's upside down. Sorry, totally despondent.
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Reply by KathCull_admin
21 May 2015, 12:08 AM

Dear janey49

What a hard time for all of you – it sounds like there is a great divide between what you are hearing and what you are seeing. Is there someone in your mother’s healthcare team you feel you could talk to and get the information that you need?


I am not sure if you saw the thread started by suehb  Caring for Dad with Idiopathic Pulmonary Fibrosis.  Two other members, Razz and JennJilks have also posted to that thread.


Caring for your mother over the last years must be taking a physical and emotional toll on all of you. You may already be aware of resources in your area, but just in case if you click on Programs and Services you might find it helpful.

Are there people who support you outside your family janey49? What have you found gets you through the day?



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Reply by JennJilks
21 May 2015, 12:45 PM

Holy hannah, Janey. Does this ever upset me. 
Stick to your guns. You cannot care for her at your home. She needs much more than you can provide at home. A possibility is a long-term care (LTC), but I think the doctor is out of his/her mind. 

Which city are you near?
Toronto has a fabulous advocacy group: ACE

They cannot discharge her without finding a suitable placement. It is up to them to find one.  
There are stories of this in Toronto. You need to know your rights. The CADD pump is wonderful. I've seen many people resting easily. There is no reason, in this day and age, to be in pain. You will not have access to this in a LTC, as far as I know. 
There are many times when a loved one should be in hospital at end-of-life. The doctor and the hospital are  only worrying about money and beds, not your mom.

Read this, if you can: a PDF file. They have wonderful lawyers and can help. 

discharge from hospital to long-term care - Advocacy Centre ...


by JE Meadus - ‎Cited by 1 - ‎Related articles

In 2012, the Advocacy Centre for the Elderly (ACE) had over 250 requests for ... Centres in Admission to Long-Term Care from Hospital and Discharge from Hospital to Long-Term ... In a recent Toronto Star article, Sheamus Murphy, Director of. 
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Reply by Razz
21 May 2015, 10:39 PM

(((janey49)))) <- these are hugs  

What an awful position you and your sister are in.  I can only imagine the frustration you must be feeling along with the stress of your mother's condition.  

One thing that comes up time and time agin for patients with IPF is that they don't look that sick.  They can't breathe but they don't often look that ill.  However it sounds to me that your mother is very disorientated and is not doing well at the present.  You are right to feel angry that the hospital is making you feel that you are being unreasonable when in fact it's the other way around. For what it's worth ..... this goes back afew years mind you ...... my father was finally admitted to hospital after he suffered a second stroke and they discovered that the blockage was cerebrial.  He was NOT DOING WELL but he was stable somewhat.  The Cardiologist insisted that he was ready to be discharged and we knew he wasn't.  We dug in our heals and when the doctor asked for a referring physician we said we didn't have one.  To which he demanded we find one ASAP as Dad couldn't be discharged without a referral to our family doctor.   He even had the nerve to tell us that there was someone waiting in Emergency for the bed that Dad was taking up!!!  I told him ......"To bad we got here first!"    As it turned out the Head of Cardiology came to see us and took one look at Dad and told the "Jerk" doctor that Dad wasn't going anywhere.  He passed away 3 days later!   

In other words it sounds like you're going to have to do the same and dig in your heals and advocate for your mother.  Let them know that you can not provide the care that your mother needs and will not take her from the hospital untill everything appropriate is arranged.  Too bad about the bed .... you got there first!!!  

Looks like JennJenks has given you a place to start in that process of advocating for your Mom.  I wish all the best with that.  

As for IPF there are a couple of online forums that I have found to be very useful and supportive to me.  My husband has PF secondary to Sjogren's Syndrome.  That means that on the spectrum of this horrible disease he is on the end of a much slower progression.  Besides the wonderful support you will get here you may wish to try these other sites as well.  The first one is Canadian and the second one is run in the US but there are tons of us Canadians using it for support and information.  



Wishing you all the best and I will be keeping you and your family in my thoughts and prayers.  You are doing one of the hardest jobs in the world and you certainly do deserve some rest!!!

Be good to you - Razz  
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Reply by Razz
21 May 2015, 10:41 PM

Shoot the links didn't work as I hoped.  I'm sure if you put the link address in your browser's search area you should be able to find them.  
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Reply by KathCull_admin
21 May 2015, 11:17 PM

Hi Janey49, Razz, JennJilks
I think these are the right links Razz. Let me know if not.

Canadian Pulmonary Fibrosis Foundation

Pulomonary Fibrosis Foundation
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Reply by Razz
22 May 2015, 12:37 AM

Thanks Katherine for posting those links for me.  Actually although the Pulmonary Fibrosis Foundation is also an excellent source of information the second link is one to the "Inspire" site that has forums for a large variety of health problems and each of those forums is divided for patients as well as caretakers.  Great bunch of people who really "get" what you're dealing with and it's provided me with great support at times.  I'll try it one more time maybe I'll get lucky - ha, ha, ha....... (not with the week I've been having!) 


be good to you  - Razz
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Reply by janey49
22 May 2015, 1:03 AM

Thank you everyone for all your help and support. Another stressful day trying too get proper tx for Mom and respite care. Today the Dr. Had us meet with the Social Worker and CCAC. They feel assisted living would be good. I can't believe my ears. This Dr. Just wants rid of us. My mothers anxiety is over the top and the night prior she could not understand why she couldn't have any medication. They said; " she asked for something too sleep and they didn't want her too have that"?  When we visited we called on the Nurse and since my Mother found the word anxiety to explain how she felt they were ready to give Haldol. If it didn't work Versaid 1/2 hr., later and then they would call the dr. Well none of it worked, no dr. Called. My Mom felt so awful she was just holding onto all she had. She became short of breath, her colour became poor and she was exhausted from talking. No insight on the nurses part. We left in tears, called this evening and she is still anxious, Nurse said she is asking too much for meds., needs to suck it up and deep breathe. I feel like I am going crazy. My poor Mom. End stage PF presents with sever anxiety. Why is this so hard. Any suggestions. Contacting another Hospice tomorrow. Contacted Hospice Assoc. and this was recommended. We are advocating but no one hears.  
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Reply by Razz
22 May 2015, 1:42 PM

Oh dear.... you are so right; anxiety is often present at this stage of IPF!mostly because of the feeling that they can't breath (which they can't).  Which means the nurse telling her to just take deep breaths is unrealistic and not very helpful!!!  What might have helped is an increase in her oxygen.  Unfortunately IPF/PF is often called an "orphan disease" because there is so little known about it and most medical staff do not have any training in it.  They often confuse it with COPD with is a totally different disease and thus needs different medical treatment.  I'm afraid I don't have any suggestions on how to get the hospital staff and even the doctor to understand that.  What a terrible place to be in.  

It sounds like you understand the nature of the disease and that you and your sister are doing the best you can.  Your mother is very lucky to have you both working so hard on her behalf.   I am so sorry you find yourself in this position.  I wish I had more answers or suggestions for you.  I would be very frustrated myself!  It does sound like they don't really understand the nature of the disease they're treating.  Does you Mom have a specialist treating her IPF, one that specializes in that area?  If not that would be helpful.....can you get a referral from your GP at this point? (I'm just throwing that out there as I don't know what kind of doctor is treating your Mom while she's in hospital).  

Good luck with the new Hospice.  I'll be keeping you in my thoughts and prayers - Razz  
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Reply by Razz
22 May 2015, 1:49 PM

...oooops sorry, I missed adding your brother in all of this.  
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