You Won't Believe this Update.

Dogsaremylife

First, I want to thank everyone who so kindly and thoughtfully offered me support yesterday when I truly thought I would collapse from pain over my husband's situation. I believe you all carried me through to today. Thank you again so much. Here's what happened today. My husband made it through the night. When I arrived at the hospital this morning the first thing I did was look at his foot. It had turned pink and healthy again!! Yesterday when he was admitted, the surgeon of this large, prestigious hospital called me within half an hour of admittance. He told me that my husbands blackish purple foot was from a blood clot, that this ONLY EVER GETS WORSE and I had 2 options: amputate the foot immediately or leave it alone and drug him heavily for pain. He told me these powerful drugs would probably end his life. I told him NO to the amputation on my 78 yr old husband in late stage Alzheimer's. He asked me several different ways if I was sure of this, and I repeated yes. Another doctor there had him on Heparin (blood thinner) and somehow it worked. The surgeon had already inked a surgical line and incision locations on my husband's ankle! THEN, I asked if they had given my husband water or an Ensure. The nurse said "no, he's scheduled for a colonoscopy" !! I told her to immediately cancel this procedure. I had already begun to lose it after the wrong prognosis from the surgeon, and this was the frosting on the cake. No one could tell me why my husband had been scheduled for the procedure. They had posted on his white board that he was to have NO food or water because of the colonoscopy. I immediately went to the head nurse and asked for water and an Ensure and for her to get those directions off the white board. They brought the water after about 20 minutes but no Ensure. The nurse told me she ordered it and she would give it to him. I waited half an hour then went home and got some bottles of Ensure, brought them back to the hospital and my husband gobbled them up. The nurse still had not delivered any Ensure. My husband kept asking for more water, he was clearly dehydrated. I explained all this to our Hospice nurse via texts who has been a Godsend and he could not believe it or the photos I sent him of my husband's foot or the white board. He worked behind the scenes to determine if my husband was stable and to return him to the Hospice ward downstairs. I know he will be taken care of there. I am sorry this is so long, but it slammed home to me the absolute need to stay with your loved one in the hospital as much as possible and take a very proactive stance in their protocol. You never know what terrible accident might occur! I had heard endless stories like mine from others over the last few years, but I did not know how bad the whole hospital situation is. The incompetence is overwhelming. Again, thank you for all your support. It has meant everything to me.

jfkoc

Unfortunately I can believe it. I have personal experience...actually more that once. Yes. It is really important to be with a loved one in a hospital.

I am relieved with you that things did get sorted!!!

Jazzma

Your husband would thank you so much if he could. You are taking such good care of him. Take comfort in that.

ghphotog

You are a great advocate for him!

LJCHR

What a scary situation - thank goodness for your being such an aware advocate for your husband.

It is both heartbreaking and frightening to think what could have happened.

Praise the Lord for your diligence.

Pat6177

I am so sorry for all that you have been through in the past week. And I thank you for taking the time to share with us. I would not have believed the medical folks would consider these things without your approval and for someone on hospice. May you and your DH find some peace for the rest of this journey.

Dogsaremylife

https://alzconnected.org/discussion/comment/201005#Comment_201005

Thank you for your help. The part that is so shocking to me is that even though the Hospice company (which is in the same hospital) told the admitting office, the doctors, the nurses that my DH was in Hospice care, no one seemed to remember or realize it. I would tell each of these people that he is in Hospice and each of them was surprised. It's the lack of communication that really scares me, especially for people who don't have the time or ability to make sure everybody is on board with treatment. Thank you again.

Dogsaremylife

https://alzconnected.org/discussion/comment/201003#Comment_201003

Thank you so much for your concern. I don't know what I would do right now without all of you.

Dogsaremylife

https://alzconnected.org/discussion/comment/200998#Comment_200998

Thank you for the kind words. I think that I am only being held together by this group and God.

SSHarkey

That is so inhumane! And to choose to do these things without discussing it with spouse! Horrifying! Thankfully you were able to catch it all in time!

JeriLynn66

I am so sorry this is happening for you. It makes me ashamed to be a nurse and of the systems that fail our loved ones and us. Thank goodness for your Hospice nurse and for you being such a strong advocate for your DH.

ImMaggieMae

Thank goodness you told him NO to the amputation! And thank goodness you were back at the hospital this morning to stop the unnecessary surgery and…colonoscopy? What on earth were they thinking? Or not thinking! No water or nourishment until you demanded it? Their incompetence is frightening. Thankfully you had Hospice there in the same facility and can get him to the hospice ward downstairs. I have been thinking about you and your DH all day since reading your original post. It is such a relief to read this follow up. I am so glad you were there.

I’ve read a lot of horror stories about incompetence in hospitals and ER’s, but this really drives home the need to stay with our LO as much as possible when a hospital stay is necessary. Even more so when that LO has dementia and can’t advocate for themselves. With the costs of health care in this country being so astronomical, you would think that safeguards would be in place to protect the patient. I am so glad you were there. I will sleep better tonight after reading you update. Thank you for posting it.

Dogsaremylife

https://alzconnected.org/discussion/comment/201052#Comment_201052

Thank you so much for your concern for my DH and me. I am feeling very unwell today (stress heart palpitations), I think from the added stress from the hospital stay yesterday on top of dealing with my husband. I went to see him for several hours this morning in Hospice and he is SO improved in terms of his demeanor. He slept very peacefully the whole time I was there and I decided not to disturb him so I will go back later today. I think yesterday he was picking up on all the tension in the hospital room, from all the beepers going off and nobody coming to correct them (I had to find nurses to stop the beeping) and I do believe he was picking up on my distress. Yesterday I decided to take photos using my phone of my DH's foot with the ink encircling his ankle where the surgeon wanted to immediately amputate. The ink even had numbers and x's for incision marks. I also took photos of the white board where it was stated he was to have a colonoscopy and the orders for no food or water for 12 hours. And having to drive home and get some bottles of Ensure because the nurses just never brought any after my many requests. I waiver between reporting all this to some higher-up in the hospital but then think that it will make no difference at all if I do. I got the clear impression that no one there actually cared. Anyway, I can't tell you how you've added to my strength with your concern. I don't feel like I'm reaching into the dark because of it. Thank you so much again.

WIGO23

i wish I was shocked at your story but I am not. My son , when he was hospitalized at 18 months for his heart condition, was brought a medication dose at twice the amount he took daily. It could have killed him. I stopped the nurse and she threatened to have me thrown out stating that she was right and I was wrong. I called his doctor immediately and never saw that nurse again.This was 42 years ago.

Also, 30 years ago, as my mother literally took her last breaths, a nurse kept hanging a bag of fluids while our family tried to be with our mother in this deeply personal moment. The nurse was so unaware of my mother as a person, it was astonishing.

So, these scary things occur all the time in healthcare. How do we speak for those who cannot speak for themselves 24/7 in a hospital setting? My husband and I never left our son for a moment. My dad and I never left my mother for a moment.

But what if it is only you as a caregiver? This terrifies me.

psg712

https://alzconnected.org/discussion/comment/201051#Comment_201051

JeriLynn, I am a nurse too and share your sense of shame. Where are the nurses who advocate for their patients...especially those who cannot speak for themselves??

I am not in the habit of bashing the health care team, since I am an all-too-human member of it, but it was distressing to see some of the neglect that happens with such patients when my mother was in the hospital last fall. Also the appalling lack of understanding of dementia in a short term rehab facility. I had to make some waves. It was uncomfortable but necessary for her safety and recovery.

trottingalong

https://alzconnected.org/discussion/comment/201107#Comment_201107

Do they have any patient advocates in your area or hospital?

Joydean

I am so sorry for all you and your dh had to go through. It’s also very scary! Thank God you were able to stand up to them. My daughter is also a nurse and she has told me to never leave her dad alone in a hospital! The few times I have been in hospital she stay with me. There truly are a lot of good and caring nurses and doctors but lately they seem far and few between. I feel it’s the same in all professions. I’m glad you have a good hospice nurse!