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Other healthcare providers providing care for a family member  
Started by Anniemedic
13 Feb 2012, 6:40 PM

I am a paramedic who provided care and support to my dad who passed away in December. I am having a difficult time returning to work afTer providing end life care for him in the hospital. I feel emotionally exhausteand burnt out. I love my job, but I am afraid to return to practice.  My husband had an appointment in thbuilding my dad went to chemo, and radiation. I had a a total break down. I was very strong during his illness, and thru his treatment etc, and I knew the outcome. Immediatly after his death I was fine, "in control" now not so much. He had to spend three days in Emerg until a bed opened up, this is where I work, I can't imagine going back there, let alone having to go into the room. I never left his side for 7 days, I stayed every night as he didn't want to be alone. We had some great conversations during that time and would not have changed it. But my mother has put doubt in my mind about the whole pallitive care process he went thru. I am a healthcare provider, I jus t can't seem tosteeper are the two sides the daughter vs the provider.  I need some insight 
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Reply by kathykastner
14 Feb 2012, 1:08 AM

Oh you sound like such an emotionally overwraught daughter/provider and yet sounds like you were so very couragious and tenacious. Not easy.   I'm not sure if what I can offer will be of help but:
There is research that says when the need to 'hold it together' has passed, the body (and brain) 'allows itself' to go into shock. Which (as you'll know from your work) needs to be taken seriously.
My brother in law's a paramedic who nursed his mother through her death, and is plagued by doubts about his role and decisions he made - as is his widowed father. I'm fortunate that my husband has taken pains to listen and remind them both that they are railing because they miss her, and that whatever the course of action, the outcome would've been the same: a parent and a partner is gone.
The feelings of blame an hopeless/helplessness still surface, but lots of tears and hugs and forgiving themselves little by little make it less painful. I hated seen those boys and their dad go through this, and my heart goes out to you.
I hope you have a chance to be kind to yourself.
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Reply by Anniemedic
14 Feb 2012, 3:11 PM

Thanks for the insight. 

I don't think I am in shock. I just can't seem to be able to separate the healthcare provider part of my brain off, I keep trying to rationalI've the amount of medication, and type, to the outcome. S I mentioned before my mom has out serious doubt in my mind inregards to the care of my dad. Maybe a little insight into that situation will make things more clear. My dad initially went to the ER for a Pulmonary Embolism, something in my opinion is a medical emergency regardless if you are a cancer patient or not. Up until this point my parents had decided to hold off on the palliative referral, for a few more weeks.  They also live in a very rural remote location, without a civic address and require private snow removal. They are a two hour drive from my home, and my dad relied heavily on my professional opinion in regards to if he had to go to the Dr or not. I received a call early in the morning from my mom that my dad was short of breath and in a lot of pain, also that he had been unable to take his pain mess orally due to the pain.  So needless to say I could heat him grunting to try and catch his breath. Not a good thing, I told her to call 911 and I would meet them at the ER, she refused and asked me to come and assess him and drive him there.

i realize that everything that has happened, has happened the way it was always destined to.  I am not trying to relive the whole event, I don't want it to seem that way. Things happened and accusations where made by my mom in regards to the decisionsManet my dad had made while shewasn't there in the nights. The nights were the most difficult for him, he didn't sleep, he was seeing illusions, nd some of those where very terrifying to him. The night before he passed, she actually called the head nurse to tell her that she felt like I had bullied her into the pallitive. Are process, and that I was lying to have him over medicated. I was fine with my dads condition until that exact second. I had very long talks to the nurse and the resident inregrds to his mess. He needEd to be sedated, he was terrified.  Then she threw in that when he was in the Zwr theygave him oxycodone, to which she said he was allergic to because it gave home hallucination and agitation, and that I hadn't given him enough time to come thru that before we/ I had sedated him. For the record I have never once administered any medication while my dad was in the hospital or in the ambulance with me. I started his I'VE, flushed the line, but all I did was provide the soft skills and personal care. This is killing me, she has put doubt in my head in regards to my  profession, as well as did I give him enough time. I grieve my dad everyday, my dad and I had such a close relationship, he was my rock. I need to know if anyone else has had these feelings after taking care of a loved one and how did you get thru it. I was supposed to start nursing school this September, I have withdrawn, I can't go back to work. Not sure of where to turn   
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Reply by NatR
16 Feb 2012, 4:57 PM

Hi Annie, Just read your long post and feel so much for you.  It sounds to me like you instinctively did all you could...and that is much more than the average family member...just trying to assist with your dad's care.

Your mom...sorry to say,, sounds like she is projecting onto you...her need to blame someone for the loss of your dad, her husband.  I may be totally wrong here, but grief makes us lash out at the ones closest to us sometimes.  We just happen to be too conveniently there...

Doubts, guilt, regrets, come by the bushel ( now that shows my age already..apples come in a bushel basket) or did.  Anyway, point I am trying to make is we can all try to look back and lay blame, double guess and shoot ourselves in the foot for things that we cannot change.

I am sorry that you have withdrawn from nursing school, but hope you will have a change of heart when the time is right.  Your depth of feeling, your gift of caring comes from a compassion for others.  I want you to be my caregiver if I am ever where you are.

Grief is a constant thing, but it ebbs and flows.  Not only do I grieve for an already lost father whom I missed out on having a good relationship with, but my mom who is still alive but gone from us before her physical passing.

I can only say that you need to be confident in yourself, your ability to do the right thing and that regardless of what person says that you didnt do enough, or did the wrong thing...that you believe in yourself.  I can totally understand your feeling of not being able to be in the room or area that your father was kept in during those final tough days.  It is like Post Traumatic Stress Disorder I would say...(my own personal opinion).  

I have learned in life that we all make mistakes, we all have regrets, but hearing your story makes me feel that you did all you could.  No regrets, no guilt, just instinct kicking in to care for your Dad in the same way you cared for others.

Nursing staff and doctors probably know full well how this feels.  As a PSW I often felt - if only I had been there earlier, if only I reported that earlier, if only....
Hope it helps to talk about it.
Being a family member (as well as health care provider) and on the scene has to have been hard.
Definitely will be thinking of you today and hoping that you can see a bit of an outsider's viewpoint and give yourself a gift today...peace...and know that your Dad would understand all that you did...and love you for it.
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Reply by Cath1
18 Feb 2012, 4:25 AM

Hi Anniemedic:

I don't know if my experience will help you but I want to help you so I'll share and you can let me know if my story makes a difference for you. I hope it will.

My Mom passed away also in December, a couple of weeks before Christmas in 2010. It's been over a year now and for the most part I think I have healed a lot, but as many people say you never heal completely, you learn to approach life completely differently without your loved one, in your case your Dad, and in mine, my Mom.

Your grief is very new and if this is the first person that close to you whom you've lost, as was the case for me when my Mom died, the whole experience is foreign and no matter what anyone tells you, you will define the experience of grief for yourself. I recall how unbelievably overwhelmed I felt by ordinary things in those first days, weeks and months after my Mom died. I wasn't able to fake how I felt to please others. I was simply devastated. I talked to anyone who would listen about my Mom and my feelings of sadness, anger and guilt and despair.

I was and am probably still experiencing a "complicated" grief due to the circumstances leading up to my Mom's death. My Mom, like your Dad, spent four days in an emergency room, her kidney's failing and her blood pressure rising sky high. Our family was forced to wear gowns and gloves because once at a previous time of admission to hospital my Mom had contracted the MRS virus. Due diligence was great, but it was extended for days until finally they got the test results that came back negative and we were finally allowed to shed the latex gloves and gowns and to hold my Mom's hand, skin to skin. That made a huge difference to her and to us all as that intimate contact gave her and we much needed comfort. Small mercies.

By mid-week the priest was summoned to give my Mom the last rights of the Catholic church (important to her) and I was beginning to accept that my Mom was too ill to rally back and recover. I did not want to accept it and like you I was keeping up very well with no sleep. Fear of my Mom's impending death was like an adrenalin that kept vigil with us.

The lack of advise and support from staff in emergency was frightening, although some nurse's were fabulous not all were. I stayed with my Mom 24/7 like you did with your Dad. My Mom had been mentally ill all of my life and I was her substitute decision maker. We were extremely close, sometimes I think we were too close. In my family I am perceived as the strong one, the one who accepts the responsibility for whatever the crisis of the moment happens to be and my brothers both live far away. When reading your post, I could sense the weight of that same kind of responsibility you felt in the circumstance with your Dad, as you were trying to be there for him simply as his daughter, and for your Mom as hers when she insisted you come transport him to the hospital instead of calling 911. You were in an impossible situation. You wanted to and did the best thing you could do in the situation. There simply is no wrong thing done by you.

Often families rely upon family members to stand in for others if they have a certain expertise. You happen to be a paramedic and your family respects your work and your professional accomplishments or you would never have been summoned to help your Dad. I think your Mom is deeply grieving and sadly she is targeting you as the outlet for her anger because all the times in the past you could somehow make all the difference and this time it was different. It's not logical, but it's grief and it plays a number on people's minds and hearts and in different ways.

Rather than reacting to your Mom's inappropriate comments which are likely masking some guilt she is carrying for not having called 911, I suggest you focus on your own pain and find ways to soothe it. In that moment when your Dad was ill, neither your Mom or you could be expected to make completely rational and objective decisions. After all we're talking about your Dad and her husband, the man you both love dearly. Grief is a messy business. I suggest you try to forgive your Mom's awkward and hurtful words as she tries to find her new way of being in the world without your Dad, just as you are trying desperately to find yours. You may both be feelin angry with one another and for no really good reason other than you're both consumed with anger that the unimaginable happened and your Dad died. It was no one's fault.

You and your Mom need one another now. I don't know if it's possible for you to express to her how much her accusations are hurting you still, long after they first wounded your heart, but if you can, in a calm and understanding way, perhaps you could open a door to healing for you both. You will know in your own heart if it's possible and if it is when the time is right.

As a professional healthcare worker you know better than most that frightened families are not always able to make good decisions for their loved one if their life is on the line. Why are you not allowed to see yourself simply as your Dad's child, the daughter who loves him and was afraid of losing him and even worse, frightened that you were making a mistake? You are allowed to be vulnerable just like the many people you've helped over the years in emergency situations. Your paramedic hat blew out the door the moment your Dad was in peril and you cannot possibly spend one more second punishing yourself for being human.

September is a long way off in the scheme of things. Don't expect that how you're coping now is an indication of how you will feel so far down the road. You will likely be by that time very much more confident and steady that you can expect yourself to feel in this moment. If you can try to separate your Mom's grief from your own, and not allow it to define yours, and certainly don't allow it to define you, then you will get through this terribly troubling time of self doubt.

Your world has changed Anniemedic, but it will again be a place where you feel safe and assured and comfortable, and your experience of deep personal loss will strengthen you over time. Allow yourself the benefit of time, love and support from your husband and friends and family, and your Mom. Natrice and Kathy each gave you wonderful words of wisdom, and there is always someone here to listen and to help. You are much more capable of surviving this experience than you now feel is possible, but please don't trust me when I say it, trust yourself.

I was a caregiver of my Mom for years and when she died I was left feeling as you are now desolate and lost, so much of my emotional energy was in sync with my Mom. Now I have more time to focus my caring nature and energies elsewhere, something I couldn’t do as much of when my Mom was living and I am finding it does help fill the void in my soul. I know as well, having spent those long, sleepless nights watching helpless as my Mom’s life was slipping from this life to the next, that she is now at peace. She is resting in perfect bliss and I deserve a little rest after such a long and arduous journey with her side by side. Your Dad is now at rest as well, Anniemedic, and I’m sure he will always be your rock. One day your memories of him and everything he taught you, all the love he gave and leaves for your to carry on will keep you strong as you continue healing.

I so hope you will release the burden of regret you are carrying. I know it’s such a heavy weight to bear. I also know that we can learn to accept our human limitations to find that we did our best and that we tried our best is enough. A big part of the way lightening your load is to keep actively involved in life and work. If you can't work right now, please don't entertain the notion that you will not be able to work again in your chosen field. I think you should defer all major life decisions for the time being.

I hope I haven't overwhelmed you with such a long message. I just really feel for what you’re going through and I believe that all you need to work on is believing in yourself as your Dad and your Mom both did and do.

Please let us know how you're doing. Write any time you feel the need!


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Reply by JennJilks
27 Feb 2012, 4:05 PM

Gosh, Annie, I must admit that yours is not an unfamiliar story. I took my palliative care course in the long-term care home where my father lived, and died.

It is so very sad that your relationship with your mom is difficult.
I have an aunt no longer speaking to me, as I sent her home, after she came for a visit with my mom. I was burned out, mom was trying to sleep. My late mother complained to my neighbours (not me) that I sent this aunt home.
It may have been selfish, but I was exhausted and these two tended to compete with each other. I didn't and don't iike this woman, but families disagreeing about care, and holding a grudge, is very common in my hospice work.

This is what I told my aunt, by phone.
"If you are going to hold a grudge against me for the rest of your life, I would feel terribly upset.
I made the best decision at the time, with the information I had on hand. You can forgive me now, or hold this grudge."

I would tend to believe that your mom has displaced anger towards your father for dying on her, against the system that seemed to fail you, or for herself, since she failed to call 911 herself.
Many hospices offer group bereavement sessions and individual grief support for free. 
The more you talk about this and talk it through, the moe quickly you will learn the lessons you need to learn, and deal with these outstanding issues.
I would be happy to Skype with you, if you think that might help. 
We are all perfect and we are all alowed to make mistakes!
When I was taking counselling courses, we learned a technique for addressing fears or panic attacks. (I had those after my dad died, I quit work, rather than taking a leave, and I bitterly regret it.)
Basically you identify your fears: are you afraid of walking in the door of your hospital?
Or going into the room where your father died?
Ask yourself what is the worst that could happen if you go there.
Then walk to the door or the room, as close as you can, with someone holding your hand. If you feel panic, retreat. 

Forgive yourself, giver yourself permission to grieve your loss. KNow that your mother should not be blaming you.
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Reply by JennJilks
27 Feb 2012, 4:22 PM

Another part of my story, is that I moved 430km to be closer to my parents to care for them.
When I arrived in Bala, population 500, my mother denied her illness. We jokingly called it 'Muskoka Fine'. They would leave my dad alone, mom would be driven to appointments, refused to allow me to go, neighbours would pop in and say he was 'Fine'. 
Mom lied to her care providers, refused CCAC home support and would lean heavily on the counter to make dad a sandwich, while shaking with medication, or other issues.

I gave up an excellent class of gr. 8's, in a great school, with the best principal I had ever worked for. I ended up teaching anger management students while my mom was dying (although I didn't know it at the time.) I wrote about this in my book
I left my hubby in Ottawa to sell our home. I left my adult kids behind to provide care.
I would drive 62 km to work, after checking in mom.
I asked that she ask for help in her ADLs, she refused. She suggested that I had made a mistake leaving Ottawa, my great job, and moving to Bala, Muskoka. I wrote her a letter and told her that she needed to tell us all the truth, including her case manager, and that when she was ready for help, she needed to tell me.
I was living in the cottage next door, no running water. Only baseboard heaters in an uninsulated bunkie.
AFter a few days she came to me, accepted help, and we made up.

My brother took 5 weeks off work to drive dad the 200km to Toronto for his radiation treatments, contraindicated as dad's brain tumour, originally removed 5 years earlier, had come back. Mom decided to have him undergo radiation, although statistically speaking an 81 year old would not recover from this regrown tumour.
Neighbours insisted dad was 'fine', upright and breathing, the night my brother took mom to emergency the night before she died.
Dad had delirium from an undiagnosed urinary tract infection, as a result of radiation, and was in emerg. with my brother during mom's funeral.
Neither mom nor dad were 'fine'.
 I have second guessed my choices, moving, finding a different job near to her, and that 'What If' train only haunts me. You make the best decisions you can, with the information on hand, at the time you must make them. Period.
Take care, get someone to talk to, it will truly help. Look up hospices at 211Ontario.
/my two cents! 
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Reply by charliebrown63
02 Mar 2012, 4:16 AM

Good Evening - I too am am Personal Support Worker, and am currently caring and the only sibling able to care for my father who is deemed palliative with liver and colon cancer.  I have, however looked after my sister who painfully suffered and died with HIV/Schorsis of the liver (29 years of age) as well as my mother who underwent heart surgery and died in her home 10 days after surgery at the age of 52 and then I was honored to be the primary caregiver for my ex-husbands uncle who suffered stomach cancer and died in our home 2 1/2 months after coming home from hospital.  

I think what makes the act of caregiving to those we love at home and then trying to go back to work sooo difficult is the fact that we are continually seeing people die at work - and when this happens at work, all of the stuff - family dynamics, emotions and greiving start all over again for the loved ones that we cared for at home.  For the longest time after my ex husbands uncle died, I could not for the life of me figure out why I could not get over his death.  I seriously thought that a piece of me died.   My ex husband was very angry at me and could not figure out why I could not get over the death when in fact it was HIS uncle after all.  But then one day it hit me at work - it is because I have to relive every family death that I had witnesses as well as the agony and stuff that went on surrounding that death.  

I too was ridiculed and questioned and was made to feel guilty about the decisions that I made being the primary caregiver.  After all I was trained and people depended on me and trusted me at the time to give good care and yet when it was all said and done, questoins were asked why did I do that and why did this happen.  All I  know, looking back on those expereiences is that as long as I could lay my head down at the end of the day with no regrets, knowing that I did the best that I knew how to do, that was all that mattered.   I know down deep in my heart without a question in my mind that if I were to do it all again, I would not do one thing differrrently.  

As noted above, my father is now terminal and because of our family dynamics I am having a hard time with this one - He is a very angry person, and my goal this time around is to try desperately to have him go onto the next life not so angry and with a little peace,  |We have a way to get there, but one day at a time.    
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Reply by NatR
02 Mar 2012, 5:09 PM

My goodness, you have certainly had your share and more than your fair share of caregiving, dealing with the passing of family and loved ones.  I agree with you - watching your residents go through the process on the job - trying to give all you can in the space of time given, and then go home and continue doing it in your time off - it's overwhelming.

I think we all suffer some kind of PTSD (PostTraumatic Stress Disorder) from the overflow of continuous life ending -  I get it. I have had broken hearted tears when at work - following the death of residents - and was told to "get over it - get back to work - this is your job"  There is NO job like the one that nurses, psws, ambulance drivers etc - do.  It takes someone with tenderness, passion, sympathy and a desire to give to others and make life and the end of life the best it can be.

I would want You to be with me if it were my turn.  I sometimes think about that, the fact that when the end comes, no matter what my Advanced Directives say, no matter what my wishes are, I want someone who really cares about moistening my mouth, turning my body, repositioning me and giving me care to be comfortable and feel safe, protected.  Its got to be a vulnerable spot to be in.

I have not gone through all that you have, dealing with family dynamics and end of life - but I have lost one parent, and one sibling.  I was not involved with their end of life care because of distance and financial reasons.  But it was even harder to deal with wondering if I could have done something to make a difference.

I am so sorry that your father is terminal and that he is angry.  I want to call you a Hero because you aren't running from yet another scenario that hurts - but you just want to help and make it easier for your dad.

Feel free to express your concerns, your feelings and if my words helped just a bit, then I have done my part.  Regrets dont make a difference, but we all have them.  Guilt also affects us all but it doesnt change what happened.  Dont be so hard on yourself.  You epitomize what we all should be as caregivers...unselfish, giving, of your heart and soul as well as your time...Best wishes for an easier day today..I look forward to knowing how things are going with you and your dad.
PS...the sibling I lost was also because of HIV and at the age of 39 - its a tragic loss when you lose someone so young.  I applaud you:) 
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Reply by charliebrown63
14 Mar 2012, 1:38 AM

Thanks Nat!   You have helped - no matter how many tmes people tell me that I am a good person - or that I am doing the right thing - and depsite the fact that I am confident that I am doing the right thing, I keep telling myself that I must be an awful person to have to be going through this yet again - but then reality creeps in and lets me know that it is not me that is going to bed every night and not sure if I will wake up in the morning - I cant imagine that - I remember when my sister was sick and my kids were very little at the time - that was 1993 and my boys are now 25 and 21, but I would come home from work and be totally exhausted and I would not even get in the house and they would be pulling on me calling my name - I loved them dearly but I thought I would not get through the rest of the night - and then i would remember her and her sitting in her apartment all by herself - and knowing full well that she was going to die and it could happen any day - That was the strength and the kick in the butt that I needed to get me through the rest of the night and through the rest of her illness,  You know I, like so many people on my position just tend to do and do and do because is that is what is expected.  And then when it is all over, we wonder how we ever do it - I think for me this time, maybe because of the family dynamics and his anger, I am not so sure how I will be at the end of this - Like I said earlier, a little piece of me died when my ex's uncle died - not so sure what my frame of mind will be when dad passes.  As for him - we have done some road tripping - went to toronto last week - just over night  -but we saw the castle loma there - his great great uncle sir henry pellatt built the castle and in all the years that dad lived there, never visited - so we visited and then we visited with some friends of his - they were devostated to see him sooo ill - but hey two more things off his bucket list and it did my heart good to be able to do that for him - as for the cancer itself - well it has gotten worse - ct scan came back two weeks ago now and the tumors  in his liver are substantially bigger and his colon is worse as well as it looks like the cancer has moved to the kidneys - so the inevitable is closer and closer.  Some houskeeping things need to be done yet - ie  Will and powers of attorney - but he knows that it needs to get done - just a matter of approaching the subject - I did it with my sister - and it somehow was easier with her - Anyhow, I am holding up - and he is giving in a bit and does not seem to be so angry - which is good - Still some serious talking left to do - but like I said, one day at a time - Anyhow, thanks again,  Talk to you soon 
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