Having POA sucks and I have alot I need to blog...

by Dianna
(Duncanville, TX)

Medical POA really sucks!!! I had Medical POA over my Mother. Let me tell you our story...
We weren't close when I was growing up. I thought she hated me and didn't love me and that was why she was so mean and abusive towards me. I realized she was depressed most of my childhood and during my teen years but it took moving out and then moving back in to figure it out. I realized we didn't understand each other but we learned how and became the best of friends. This happened because my Dad had a massive stroke and I moved back in to help her take care of him.
We did the best we could for about a year and then we had to put him in a nursing home where he was for another 9 years till he passed on...
I stayed with my Mom even after putting Dad in the nursing home because I didn't want her to be all alone and that's how we became friends. We lived together through my wedding and she was there with my husband and I for the birth of my daughter (which almost killed me & was the first time she said she loved me... I was 29 y/o) and the birth of my son. We all lived together for about 13 years then when my brother got out of the army she moved in with him so we could have some space and privacy. I think she was ready to sort of be on her own and she wasn't good with us as kids and she didn't handle grandkids every well either, go figure! LOL!
Her health started going down hill about 3 years ago and then in June of 2011 she had another squamous cell carcinoma (skin cancer) on her forehead removed and they had to go all the way to her skull and needed to remove some of the skull except the dermatologist doesn't "do bone" so he bandaged her up (skull exposed but bandage over it) and sent her on to an ENT to scrape the cancer off her skull.
1st, we all know ENT stands for Ear, Nose and Throat not bones or skull!!!! 2nd, he didn't take her insurance...
I brought her home with me to try and figure out what to do and find a specialist to help her. The next morning she was getting out of bed and fell so I took her to the ER and they said her kidney's and liver were failing and it could be from shock. Gee, ya think? She was 71 y/o and could barely walk due to arthritis!
They admitted her that same day, June 23 and I found a plastic surgeon to do a graft and flap on her forehead before it got infected so she could hopefully start chemo but even after the surgery she still ended up getting an infection...
So... they sent her to a nursing home to get rehabilitated. She was released from the hospital and sent to the nursing home Wed night Aug 10 and by Friday Aug 12 she couldn't hold any food down. This went on for about 2 weeks while they would make her get up and try and do physical therapy!!!
I finally got them to send her to the hospital to see what was wrong on Tues Aug 23, however, they couldn't figure out what was wrong so they wanted to keep her over night but the dr "Crazy" from the nursing home said to send her back to the nursing home. Then the next day, Wed, I had a meeting with the nursing home staff and they said she's doing fine, not to worry and that she had taken herself off of DNR (Do Not Resuscitate) I was very confused by all of this because I watched my Dad die and could clearly see that she was dying too. I asked the nursing home staff about her kidney's & liver failing and the cirrhosis (oh, yeah, did I mention that one earlier?) and they said the reason she is in the nursing home is to get antibiotics through the pic line she had to insure that where she had the skin graft and flap surgery didn't get infected because it could very easily spread to her brain. All the while I was watching her starve from not being able to eat and swell up like a balloon...
So, that was Wed then on Fri she went back to the ER due to same reason 3 days prior... lack of eating and throwing up. The hospital pumped a liter of blood out of her stomach that night (reason why she couldn't eat or hold food down) then she had 2 blood transfusions and seemed like she might be ok but never the same but by the next Friday I knew it wouldn't be so.
I had any friends and family that hadn't gotten to see her yet do so on Sat and then the "Crazy" dr from the nursing home who also is the dr for that section of the hospital was doing his rounds and my older sister and I asked him about putting her on hospice (which I thought she should have already been on so she could be out of pain) and he said we didn't need to think about that for another 6 months or more! I looked and him and looked at my Mom laying in her hospital bed, unable to open her eyes, unable to eat, unable to pee (due to kidney's shutting down, she had already declined the dialysis, it was a joke IMO for them to even think she was strong enough) and she had that labored breathing... you know the one your loved one does shortly before they die... :-(
Dr. Crazy did finally look over at Mom and he said her breathing is concerning him and then he left.
It was all so bizarre to me and it was hard for me to tell my sister what if felt and what I saw because for one I'm no doctor and for 2, if Mom wasn't dying right that minute then she didn't want to hear it!!! She's your typical older bossy sister. She kept calling me doom and gloom all because she couldn't see it or more like she didn't want to see it and that's understandable. I can't say that I blame her. We all cope and deal differently.
To recap, Dr Crazy said on Sunday, Sept 4, 2011 that he felt she had 6 or more months before we even thought about putting her on hospice and seemed to be oblivious to the fact that her kidney's and liver were failing and they couldn't put a feeding tube in...something about needing to cut her stomach and since she's bleeding internally somewhere they couldn't do it and at this point her forehead was infected and it was spreading and when your liver fails you can't metabolize the meds so the strong antibiotics they were trying to give her for the infections weren't really even getting in to her system. She also had ecoli that was resistant to all antibiotics but she'd had that for about 9 months. Lastly they also mentioned her blood platelets were low and her pancreas was starting to shut down. Sounds like dying to me but since the dr said 6 or more months I decided I'd go home that night to get some sleep in my own bed and not be woke up every couple of hours from the nurses coming in to check her vitals.
I had just laid down and 30 minutes later they called saying her heart rate was either too high or too low...at this point I don't even remember... but they called because we had talked to the nurse earlier and told her how Mom had been on DNR and when she got to the nursing home they asked her if she wanted to get rehabilitated and become a member of the community again and of course she said yes!!! Who wouldn't!?!?
So, I got dressed and rushed up there to tell them I had Medical POA and Mom didn't want to be kept alive on machines and didn't want to be in a wheelchair suck in a nursing home, no matter how much I wish she had I now realize just this minute as I'm typing this, crying my eyes out, that I really did do the right thing for her. I realize now that my overwhelming guilt that I've been feeling for having to give the DNR order and tell them to take her off life support is what she would have wanted and I didn't!!! I just want her to still be here!!! She was supposed to get better and come live with us again at my house. I rearranged the kids bedrooms and did up the room right across from the bathroom for her and she seemed so excited about that and was looking forward to it. Looking back I realize I would have to tell her which room almost every day because she would forget...infections do that to you...
She died that next morning... @ 6:45 am on Sept 5, 2011, Labor Day which was fitting for her because she had had a hard life... I just still wish I could have made the last part of her life easier for her.
I will cherish those last 3 months I had with her for the rest of my life. We told each other I love you every single day and that makes up for all those times it was never said.

Comments for Having POA sucks and I have alot I need to blog...

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Feb 24, 2012
POA sucks
by: Anonymous

I just lost my mom a week ago and I also had to make all the end of life decisions. I knew my mom didn't want any extreme measures but we never discussed details. About a month ago the nursing home R.N. spproached me about details because it was obvious that mom was going downhill. My hands shook like leaves in the wind as I made each decision...no artificial hydration, no feeding tube, no i.v. feeding, no more emergency room visits, morphine on the hour as needed. I never ever wanted to have to make these decisions for anyone but I was the only one left in my family. About a week before she died, my mom stopped eating and drinking. She had congestive heart failure as well as Alzheimers. It pained me each day to know I was "allowing" her to die and I kept asking everyone I knew if I was doing the right thing. Intellectually, I knew I was doing the right thing...she had absolutely no quality of life and her breathing was labored and exhausting. But emotionally I felt like I was killing my mom and I am still suffering severe guilt over it. No matter how many people tell me I did the right thing I still can't get past the guilt. I know it will get better; my mom also had to make these decisions for her mom and my dad. But years later she still asked me if she did the right thing by them and I told her yes. Both their situations were hopeless, as was my mom's. Right now I am missing her beyond belief, but she really hasn't been herself for 5 yrs. I thought I was prepared for her death, but wow was I wrong. The shock, pain and loss are just as bad, even though I knew it was coming. So I understand it when you say POA's Suck!

Feb 18, 2012
Keep writing
by: Anonymous

It is so good to know that you are writing. I had a chance last night (Friday) to share a little bit about my sister and it is amazing how good it feels today. I woke up this morning at 7am and went shopping. It was surprising to see how empty my shelves had gotten. It is now 10am and I have cleaned up a storm....I volunteer on Sat. at our local Food Bank and I am so excited about going there. I feel like I have so much strength..something that I have had so little of lately... have a great day to everyone...

Feb 18, 2012
The dream...
by: Dianna

Before I posted that really long blog I just needed to get out, I had had a dream about a week before about my Mom.

We were moving to a bigger house (my daughter had been bugging me the night before that she wanted to move because she wants a bigger bedroom! LOL!) Mom had stopped by to pick up some clothes she had left over so they wouldn't end up getting lost in the move. She had driven herself over and was walking and standing upright and everything just like she had been able to a few years ago! It was MOM!!!! She was wearing her favorite blue pant suit and even had the jacket on that went with it but she would never wear. She had her white tennis shoes on and her favorite shirt under the blue jacket. She followed me down the hall and I walked over to the armoire and opened it. When I looked inside the clothes she was wearing was hanging in the closet. I tilted my head, then shut the door to look for her and she was gone...

When she 1st went in to the was in hospital my daughter and I were looking at houses online to help her other grandparents (my husbands parents) find a house. In doing so, we found a really big 5 bedroom house that my daughter wanted us to buy so that my Mom and her other grandparents could all live together. Oh how it still brakes my heart that she wasn't able to get better and come live with us. I remember looking through her things and I found a check she had written to the hospial from when she had been there Nov 2010. That was when I really started to realize her time was getting close...

Her writting that check with her shaky hand and that she didnt' tell me she owned the hospital money tears me up inside. I would have paid it for her but I didn't know...

Anyway, I guess you can tell I still miss her terribly but telling my story of her passing really has helped me. Also, knowing that others who are grieving are reading it and that may tell their own story or that it might help them in some way even if it's minute really has helped me.

Feb 12, 2012
I a,m glad to see that you are using this site
by: Anonymous

I will keep checking this site. I want to see if you are writing. I want to know that it is helping. Keep talking until you don't need to talk any more. We care. We may not know exactly how you feel but we want to support you. At least I know that I want to support you in any way that I can. Today is Sunday. I will check back tomorrow night. If you can, and want to, write as much as you need to, don't do it for me, do it for yourself.

Feb 11, 2012
Keep talking until you have nothing to say
by: Anonymous

It takes tremendous courage to tell your story - thank you. You will never know how many people you have helped because of your courage to tell your story and I am sorry that your mother had to lose her life. Your sister, did and does have to live through her own grief, and denial is such a difficult part of it. Doctors think they know everything - they don't. God is the author and the finisher of our fate. He and he alone, decides when our time is up. I am sure you know that - He did not want your mother to endure any more and He takes only the best and that is why he need to take her. And you are right when you say POA sucks. Please do yourself a favor continue using this blogging site as a way to voice your pain until you do not need to be heard any more. You are a valiant solider doing battle, and the war is not over yet! So keeping fighting, for yourself, for any one who may have or who will suffer from POA. Thanks again for telling your story and don't stop.

Feb 11, 2012
Thank you
by: Dianna

Thank you for your kind words... it means a lot to me...

I try to stop reliving all of it over in my head but it's hard not to right now. I know it will get better in time especially since I can blog about it on here. I tried supportgroups.com but I didn't really "tell my story" on that site. When I blogged on that site only bits and pieces would come out so...

Anyway, my hope with this site is that others who have had to go through the experience of telling the doctor to stop all treatment etc., will reply back. If they don't it'll be ok because I do feel like I've gotten through a major step in the grieving process by pouring my heart out like it did! :-)

Feb 10, 2012
by: Anonymous

what a sad story with a beautiful ending, I'm so happy you had the courage to follow through with your mom's wishes. I'm also happy you got the chance to know her again and know the love between a mom and daughter. I have POA over my mom and when the time comes I will honor her wishes also not to be hooked up to tubes or be kept alive by mechanical devices. It will hurt me to lose her but, it will be great to honor her wishes. I had worked in hospitals and nursing homes where they kept people alive by artificial means and it's not a life.
So be happy that you honored your mom and cry, scream, throw things because you miss her but, know she loved you.

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