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Reply by moderator | modératrice

04 Jan 2013, 1:56 AM

Looking into the services of an Occupational Therapist and a Social Worker is a good suggestion, Michelle.
Lilbear, has anyone on your Dad's care team mentioned the services of either? Have you talked to the hospital's palliative care coordinator or inquired about hospice in your area?

Here's a page of articles about advanced care planning and decision-making that may be helpful as well as a link to a discussion about advanced care planning on the forums.

Decisions

Advance Care Planning: What is it?

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Reply by JennJilks

05 Jan 2013, 1:35 PM

This is a really tough time for adult children.
I've been there.
In terms of your father's care, there should be planning and decision-making, as Colleen writes.
Too much harm is done to seniors in the name of experimental treatments, which makes their health worse.
We refused occupational therapy for my father. It was painful for him, it wasn't going to make him better, as he was dying of a brain toumour and had dementia.
You need a case conference, where you sit with the staff and determine a treatment plan, options, side effects, and a determination of how much else will be done.
Formulate questions beofre you go. This is what I do with my community clients.
My late mother's chemotherapy killed her, and it wasn't going to cure her. Our friend refused a spleen romoval for his dad, dying with leukemia, with a survival rate of 30% at his age and stage of illness.They won't tell you if you do not ask!

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Reply by lilbear

12 Jan 2013, 4:13 AM

Well, my Father is home again (yesterday)! I am not sure how long he'll be able to hang in and stay this time.
He is so skinny. I think he is happy to be home, but he felt secure in the hospital.
Community access is supposed to send help....hopefully they will be better organized this time. When he was home before, it was very stressful just trying to get them to stick to set days and times. They were always phoning and changing things.
If it does not work out, we may have to look into hiring help ourselves.

Recently, I have found myself feeling almost nauseous when I think of his illness and today at work I had a nice lady ask about my Dad and talked for some length about it and told me several storie about friends, relatives that had died. I started feeling very odd...like a cold wave abd nausea...is this normal?

Thanks again for listening,
Lilbear

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Reply by NatR

13 Jan 2013, 12:46 AM

Dear lilibear

i am not a medical professional but stress and fatigue when dealing with the illness of a family member would I am sure make you feel a bit unwell at times.
its very hard on your system
I also understand about the challenges of arranging home care and the constant changes of staff and hours
its an added burden to you at this time. Here's hoping that things will work better - it may help to hire privately but it will cost a bit more. i do hope your support staff issues get worked out.

sending you my best wishes
NatR

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Reply by Tian

13 Jan 2013, 4:46 PM

Dear Lilbear

It is difficult enough to deal with the situation as it is and the uncertainty makes things even worse. I'm not sure that having a well-intentioned nice lady tell you several stories about various people dying is helpful for you. I think JennJilks hits the nail on the head in suggesting a meeting with your father's professional caregivers to discuss his specific situation. All your questions will likely will not be answered as clearly as you'd like but you should not hesitate asking anything. The sadness won't be alleviated but you should feel being on firmer ground. Please keep us informed when you are able too.

Tian

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Reply by JennJilks

13 Jan 2013, 8:37 PM

Truthfully, you need not carry this burden alone. You mother is the decision maker, according to the law, if your father is unable to make decisions.
Death is an important part of life. Learning to manage it is one of our most difficult challenges.
I think your most important concern is to ensure that your father is not in pain, as is kept as comfortable as possible. You should feel sad, if you love him and he was an important part of your life. Do call your local hospice as they can give you support and counseling, should you want it.
I've done a lot of research on death and dying, and I think what you need to know is his illness trajectory, and that will help you predict and expect what comes next.
All local CCACs have case managers who can help you with this, and with pain control and comfort measures. Here are some pain assessment tools. They helped me figure out where dad was on both the pain scale, and the thing I help my clients with is to have a good death, and a death with dignity. It is possible, and most of us do die peacefully. The fact that you care so much is testament to the fact that you love him and he surely knows this.

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Reply by moderator | modératrice

21 Jan 2013, 7:31 PM

Hi Lilbear,

Just checking in. It has been a few days. How are things going? I'm sure you have your hands fulls. I just wanted to let you know that we are thinking of you.

Remember to take a few breaths just for yourself as you care for everyone in your family.
Breathe.
Colleen

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Reply by lilbear

24 Jan 2013, 1:20 AM

Hi,
Thanks for thinking of me. My Dad came home for a week and had a lot of ups and downs. It is very stressful and I have totally lost my patience dealing with the CCAC, and the nurses they have sent to our home. Instead of helping and relieving stress they seem to add to it constantly. I am thoroughly frustrated and disgusted by this entire process.
My Dad has a drainage bag attached to his gallbladder to drain the fluids that had backed up there. When they wanted to send him home, we had a meeting with the Doctor, the case manager of CCAC, the social worker and the physio therapist. We told them we cannot handle emptying the drainage bag and flushing the tube. They said that was no problem and that they would send a nurse every day to take care of it. Great....right?!
Was it that easy? No way. Every day the nurse showed up, and every day the nurse they sent would pressure my Mom and tell her she should be doing it. My Mother felt judged , stressed and totally demeaned. They made her cry almost every day. What wonderful help!
What kills me the most is that they all preach to us to make sure she takes time for herself and takes care of herself...since the caregivers health can be compromised (gee, really?)
How does this so called :."help" they send help her to have less stress and take care of herself??? They are going to kill them both!
I have never felt so helpless and angry in my life. I have tried calling and talking...and it seems they just pass the buck or I get the lamest excuses.

Thankfully, we ended up putting my Dad back in the hospital last Friday and got a breather. We have now arranged for him to go to a retirement home with 24 hour nursing care for atleast the next three months. My Mom (and I) can maybe breath again. The retirement residence is absolutely stunning! I am so relieved even though it all seems a little strange...but better then the hospital.
We pick him up from the hospital tomorrow and take him there.
I'm sorry to have ranted...but feelings are still so raw. People at this stage should not have to be stressed out and having to fight so much for care.
Thank you for letting me rant....

Lilbear

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Reply by Tian

24 Jan 2013, 2:13 AM

Dear Lilbear

I totally agree with your analysis of the situation with the CCAC. Absolutely infuriating! No apology necessary at all for ranting. I'm not sure I would have handled the situation as admirably as you. But what's most important is that you found a residence for your father that is the best option for him, your mother and you. I hope your initial impression of the home doesn't change and that you all get the peace you deserve.

Tian

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Reply by JennJilks

24 Jan 2013, 2:24 PM

There is no question that CCAC is a total barrier to getting good care. They outsource to for-profits, like Bayshore. ($450,000,000 profits in 2009 Canada-wide)
They are forced, by management, to limit the resources. Glad you have found care.
Individual nurses can be terrible even within a good local CCAC. With 2 or 3 years education, they must follow the directives of their supervisors.
It is lose-lose.
However, it is up to taxpayers to demand more and better services. As long as we demand 24/7 care, someone living in poverty will be getting neglected as the squeaky wheels gets the grease.
This is what palliative care in poverty looks like.

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