Discussion Forums

 
Reply by suehb
23 May 2015, 3:31 PM

Hello Everyone!

I'm sorry I've been off line for a while.  Things are progressing.  Shortly after my last post we got the CCAC involved.  At first they could offer very little.  They said he didn't quaiify, that he was managing at home just fine!  Ok....right......I said with tears in my eyes!  Less than a month later he ended up in hospital.  This was right after Easter.  He looked terrible for about a week and of course no one is available over the Easter weekend!  I called in the respiratory therapist from Proresp and she said he looked terrible and his sats were not where she wanted to see them!  So I called the family doctor and the nurse said to take him for chest xrays and bloodwork to which I answered how exactly would you like me to do that since he is barely mobile?????  So she suggested calling an ambulance and taking him to emergency and let them deal with it!  So I did!  They would up keeping him 3 days to assess him.  That got the attention of the CCAC!!!!  Plus I insisted that he get help or I was going to leave him there!  So we now have a psw the moring and nursing once per week and he is getting short term physio.

This went along for about a month......then on Mother's day he fell in the middle of the night in the bathroom!  OMG!  Good thing I heard him!  I discovered he had fallen against the door and was unconcious!  Called 911!  By the time the EMS came we had got the door open but he was out cold and breathing hard.  When they checked him his oxygen was down to 65%!  No wonder he fell!  He spent the night in emergency and they sent him home early int he morning sayingb he was not hurt and they could find nothing wrong!  Are you kidding me?????

So we took him home and he never seemed to recover well.  He just seemed to get worse instead of better.  A week and a half after the fall the nurse came in and noticed his ankles were huge!  Called family doc again and she said take him back to the hospital!  I just about had to peel him off the ceiling he was so mad when I told him he had to go back!  Called the ambulance again!  4 days in hospital and we found out his is in congestive heart failure!  But he's ok to go home!  He looks terrible!  No energy, he refuses to shower.  Thank God he lets the psw's give him spong baths.....And I'm supposed to take him for blood work and back to the family doctor in a week to two weeks?  I don't think he can manage it!  He can barely walk to the bathroom!  How am I supposed to manage him by myself to these appointments?   Plus I still don't know what caused the fall!  Was it the CHF?  Was it something else?

He is really down and depressed....his mind is still incredibly sharp so he knows everything that is happeing and he is scared.  He would not read any of the information on CHF provided by the hospital.  He just does not want to know.

I am so burned out!  I have a husband and teenage son at home.  My son has Asperger's Syndrome so he needs extra supervision as well.  Plus my 95 year old Aunt lives next door and I help my cousins keep an eye on her!  

We are supposed to be getting a weeks respite in August, thank goodness, but I don't know what is going to happen between now and then....I'm so scared of him falling again!  

I'm just about at my wits end! 
Report this post      
 
Reply by Razz
23 May 2015, 10:29 PM

HOLY SMACKS!!!   

You have way too much on your plate and it's no wonder you're at your wits end.  You gotta love it when the medical community keeps playing the "turnstile" game.  In and out, in and out, in and out ...... how terribly awful for you!!!!  

I wish I had some answers for you but I don't.  My guess.... and this is just a guess but his low oxygen numbers may have played a role in his fall, although at this point it could either his heart problems or his lung issue.  

Unfortunately for you because your Dad is living with you the "powers that be" see that he is going home to "care" and so it's easy for them to discharge him.  How effects you and the rest of the family, including your Dad, doesn't factor into it.  Someone is ther to watch him so it's not their problem any more.  

It also sounds like you have no one who is advocating for you and your Dad and I'm sure that's what really needed here.  I really don't know that much about Advocates for Elderly Care but there must be some group that does it.  I know that some big hospitals have a patient Advocacy group but I have no idea which ones or what in fact they actually do.  

I told this story on another thread .. but the short version is that my father was admitted because of a severe cerebrial stroke.  Once stablized they wanted to send him home and we knew that it was not where he needed to be.  So when they asked for the name of our doctor so that he could be discharged to his care we said we didn't have one!  They couldn't discharge him without that and we plain refused to do anything about it.  It was the right call at the time as Dad would have an additional stroke a couple days later and passed away 4 days after that. Looking back on that now there is no way that my Mother would have been able to care for Dad at home (she didn't even drive) and he was supposed to have blood work done every other day!!  It was nonsense just like things are with your Dad.  Fortunately for us we got the attention of the Head of Cardiology and he actually put Dad in a private room.  

As for your situation is sounds like keeping your Dad home is a disadvantage instead of this wonderful "care" that the government is promoting to keep the elderly out of nursing homes and hospital beds.  How great it is for them to stay in their own homes with these extra services ... yada, yada, yada.    

I'm hoping that someone else reading this might be able to provide you with at least a starting point to get more assistance for both your Dad and yourself.  

In the meantime I'll be keeping you in my thoughts and prayers.  

Razz  
Report this post      
 
Reply by suehb
27 May 2015, 12:38 PM

Well things are just getting better and better!  Can you hear the sarcasm?

The nurse from CCAC came to see Dad on Monday and she thinks he looks terrible as well.  He is so down, he's become monsyllabic for the most part.  He perked up when she came in but he hardly speaks or moves anymore.  He hardly eats and is refusing to come to the dinner table.  Part of the chellenge there is that he can barely make it without a rest!  He has to stop and sit down on his bed to the way to the bathroom and that can't be more than 15 steps at most.  The nurse wants him reffered to a palliative nurse that can better handle the situation.  And I agree!  I've also asked for social work to help deal with some family stuff.  I think I mentioned before I have a 17 year old son with Asperger's.  I worry about how he is handling all of this!  Its so hard to tell because he has trouble processing his emotions and also has trouble verbalizing them!  Plus I'm about burned out so that's not helping a whole bunch!  So the CCAC case worker contacted me yesterday and she was very dismissive of the who situation!  She made me so angry!  She has no clue about how this disease works!  She just does not seem to grsp that he is never going to get any better only worse!  I'm gong to call the family Doc today and speak to her nurse and see if they can do anything.  I'm thinking it may be time for hospice care.   



 
Report this post      
 
Reply by JennJilks
27 May 2015, 1:46 PM

I won't disparage nurses, but you do have to realize that they have far less education than doctors, and the doctors can be myopic and useless, too.

Many don't know what they don't know and refuse to educate themselves.

In my teaching career, I would notice that some people taught 25 years (as I did). Other taught one year 25 times. I think you get my point. 
This won't help, but you know it isn't you! I fought so hard with my mom's case nurse. Denial is bad.

You can ask about the disease trajectory. They likely won't know, but you can see it.

What might help is having the PPS score. That will show them that you are aware of reality. Many caregiver depend upon waiting until things get better. It is a coping mechanism for all. 
This may not help. But we feel for you. Many of us have been through this.
Symptom management assessment tools helped me.  I've been to workshops with nurses and PSWs, and they don't think we can understand these. As if this is private info.
I think you are right. You cannot burn out.
take care 
Report this post      
 
Reply by suehb
27 May 2015, 3:16 PM

I'm definitly not disparging nurses!  The ones we have had, have been outstanding!  The CCAC case worker is not a nurse and admits she knows nothing about ipf.  I think she's a social worker.  She seems have made no attempt to educate herself about ipf, but then again she is overwhelmed with cases and I get that!  

Dad actually seems better today.  He's had a couple of visitors this week so I think that has helped. We have an appointment with the family doc next week, so hopefully she can see for herself what kind of shape he is in.  She has not actually seen him since January.  Not really sure how I'm going to manage getting him there, but if he is struggling that may be a good thing.  Then she will see for real where we are are at!  
Report this post      
 
Reply by suehb
01 Jun 2015, 8:06 PM

Its been an interesting week!  I've spent most of my time on the phone advocating for Dad!  The CCAC case worker and I had a bit of a set to on the phone last week.  She was very dismissive and condescending.  When I explained to her how Dad has been doing and that I'm worried about all of his hosptializations, she dismissed it all as being depression and that he's not that sick!  She just does not seem to realize that is a terminal disease and that there is no cure!  Most people only last 3 to 5 years at most and he was diagnosed 4 years ago!  We are heading for the end stage!  The family Doc is at least on board and has asked for the CCAC to place him on the palliative list.  This worker, however, keeps arguing with me that he does not qualify!  At least she sent out the nurse fromthe palliative team today to assess him.  She at least agrees with me!  He needs the support of her team.  The CCAC worker called me shortly after the nurse left and she is still arguing with me that he will not qualify!  I am so tired of this!  I don't what I have to do to convince her.  Out of all the support team she is the only one who is disagreeing.  Everyone else is on board that he needs the support.  I'm getting more that a little frustrated.....
Report this post      
 
Reply by Razz
01 Jun 2015, 10:39 PM

Oh how I hate confrontation especially those who are supposed to be on your side!!!   Generally speaking I've always tried to go the "honey" route (attract more bees with honey....etc.) and kill them with kindness.  I have a feeling that this case worker would somehow manage to even curdle honey!!!   

Since the nurse is on your side, and no doubt has written that in your Dad's file, I would push very hard for a face to face meeting with this woman.  Go armed will a list of any information from the doctor and perhaps a list of all the things you've been doing towards being proactive in your Dad's health care.  Keep things calm and use a lot of those "I feel" sentences.  Also make sure that you have as much information on IPF to give to her that will explain the nature of your Dad's disease.  Or maybe even better yet have a "case conference" and get as many of those that are on your Dad's care team to be there.  If that's a no go....... then....... 

Go over her head.  Find out who her supervisor is and demand an appointment with that person.  Have all your documents ready along with any notes you may have been keeping re: your treatment and run around that you've been getting.  Every body has a supervisor and I'm not sure how you'd find out who her's is but maybe the nurse could help you with that.  Again be calm but firm.   Volunteer to send him/her any information that they may need, including information on the disease of IPF and the fact that it is indeed a terminal disease.  

I'm so sorry that you have to go through all of this.  It is so unfair that folks that have worked hard all their lives and paid their taxes etc. on time now have to fight for what is rightly theirs to begin with.   Some one posted a link to an organization that is advocating for a decent government plan that addresses the real issues that ailing seniors face today.  

I'll go and see if I can find it.  In the mean time all the best with this.  

Razz  
Report this post      
 
Reply by suehb
01 Jun 2015, 10:54 PM

Razz,  you have hit the nail on the head!  I am meeting with her later this week.  She's coming out to assess dad.  I have been killing her with kindness but it has not been easy!  I'm at expert with advocacy by now having had to advocate for my son all his life, and I've got my mamma bear hat on!  I'm quite sure she has as not met someone like me before!  Be sure I will give her a run for her money!  I also spoke with the respirologists nurse today and they are going to call her as well!  

I'm just so tired if having to work so hard for what my family needs!  I don't know why it has to be so difficult!  I'm also in the middle of dealing with odsp and developmental services Ontario for my son because he turns 18 this year! They are not making mynlufe easy either! There are just not enough hours in the day for all of this!  I'm exhausted physically and emotionally every day!   
Report this post      
 
Reply by Razz
02 Jun 2015, 12:57 AM

Found it Laughing..... although I'm not sure if it's anything you need right now.  Sounds like you definitely are doing all the right things - well done!!!  


JennJilks responded to a thread "Care giver stress, feeling lost!" posted by jane49  with this information:  

 

Toronto has a fabulous advocacy group: ACE.    

I wasn't able to get the link posted but I'm sure you could goggle it.  

RAzz  
Report this post      
 
Reply by KathCull_admin
02 Jun 2015, 1:22 AM

Hi Razz and suehb
Here is the link to that thread - you will find JennJilks comment on page 1 just about 1/2 way down. 
Take care
Katherine

Care giver stress, feeling lost!   
Report this post      


Our Partners
Asked and Answered
Asked and Answered

Find out what Canadians
are asking

Ask a Professional
Ask a Professional

Our team of experts answers
your questions about
life-threatening illness and loss.

Just want to talk?
Just want to talk?

Join the Discussion
Forums

Books, Links, and More
Books, Links, and More

Recommended by our team

Programs and Services
Programs and Services

Find local, regional,
and national services

eNews Sign-up
eNews Sign-up
  • logo
  • Copyright 2003-2024 Canadian Virtual Hospice. All Rights Reserved.