Surgery after CMML

[Britt]

Hi again Caroline,
Please do see if they have any such forms then once he signs it (you might consider having the signature notarized) you can carry it with you at all times. What about Durable Power of Attorney for Healthcare? Would your dad mind that? It is my understanding that they are different for the different providences of Canada. Make sure you get the correct form. Better yet, if you know an attorney, have him/her draw one up for you. Make sure your dad has a copy at home, perhaps on the refrigerator as well as one in his wallet. You shouldn’t have to go for days without being able to get information on your father’s condition, unless of course your dad doesn’t want you to which doesn’t appear to be the case. You might even find links online where you can ask legal questions and attorneys will answer for free. It can’t hurt to check it out. Let me know if you come up with something that helps you out.
Good luck to you, your dad and your family.
Britt

[CarolineG]

Thanks Britt,

I don’t know much about how Power of Attorney works but I do know that my parents each have Power of Attorney for each other and if one of them is dead then I get it for the surviving parent.

Does that make any sense?

Caroline

[patti]

Caroline,

A durable power of attorney for healthcare is a little different. It allows doctors to speak to you about the medical care your parents receive and also if they are incapcitated gives you some rights to helping make decisions (if I understand this all correctly). Even though your mom would have full power to make decisions the doctors can talk to you about options, care, etc. We have one for Ron’s mom but did not give his brother this option.

patti

[Rackon]

Caroline, I’m with Patti on this one. Get a POT for YOU.

I have everything I need legally to be able to talk to the doctors (and make decisions in an emergency). Durable POT, Designated Healthcare Rep, Living Will, the works.

I know you’re in Canada and the paperwork may be different but getting POT for you that covers health care disclosure is KEY. Your parents’ POT for each other does you no good at all and *you* need to be stay informed. Since your mom is also ill get one for her as well. Talk to your parents and an attorney ASAP. Carry copies of the documents with you once you receive them so you can provide them to any hospital, nursing facility or doctor whenever you need to do so.

I don’t want to give the impression that everything has been prefectly hunky dory for us either – you must remain ever vigilant in these situations. We have our share of charming, idiot docs south of the border too.

Just an example…The internist on call at dad’s rehab/nursing facility is a piece of work who was too lazy to order even a weekly CBC for him! (I doubt she even knows what CMML or Revlimid *is*!) After she refused to change Dad’s anti-biotic (for a gum infection) that was giving him the runs I also found out she still had him on stool softeners! She wouldn’t return my calls re/the CBCs. Fortunately, the nurses were smart enough to figure the stool softener situation out but we still had a helluva time getting the doc to nix it. I raised holy hell about the CBCs with the supervising nurse and facility manager…this was not a problem at his previous facility (CBCs every other day). This internist had only ordered coumadin levels becuase of the hip surgery. The day I got there and dad had been stuck twice but NO CBC – I hit the roof. The onc-hematologist is literally across the street from Dad’s rehab facility. I threatened to wheel him out the door and take him across the street for the CBCs or change him to another facility if they didn’t order the CBCs.

I hate getting ugly with people – I’m normally a laid back kind of gal. But I can get pretty assertive if I feel I need to. (I’ve been this route with my mom years ago. I will not countenance lazy physicians and I ask questions – lots of them.) Even with good, caring physicians the way patients get handed off to various specialists, and/or rehab and nursing facilities can break continuity of care and jeopardize the patients health – all with the best intentions. You have to be ever vigilant – assume nothing.

Will find out Dad’s HG level this evening. We’re hoping he’s still holding. 2 weeks without a TX has been so great.

[CarolineG]

Thanks Patti, Rackon.

I will start looking into getting a POT for me. Being as independent as my folks are, I can see that it isn’t going to be easy but I will try to reason with them. They are very independent people and have always taken good care of me. The hardest thing they can face is having to rely on me to take care of them. I can’t really blame them.
Rackon, I’ll be thinking about you and your Dad. Let us know.

Caroline

[Rackon]

Caroline, thanks for your concern. Dad’s HG went down to 7.6 – but this wasn’t a huge surprise. We’re just thankful he held in the upper 9s for as long as he did. It used to take 4 units a weeks just to keep him above 8,0.

He was transfused with 2 units today.

No matter how sick or dependent they become, your parents will always be your parents and you will always be their “child”. Illness can be a frightening situation for them – nobody likes to make “last” plans. Just try to reassure them that it’s much easier to make contingency plans while they are feeling relatively good – when you really need things like POAs, it’s usually too late. Tell them thiis way is less stressful – and that it’s “just in case”. Reassure them that they will still be making their own health decisions as long as they are able.

Good luck.

[Author]

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