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My grandmother has heart failure and is in a lot of pain from arthritis. My aunt makes all the decisions concerning grandma. Grandma is being cared for in a nursing home. She complained about being in pain so they started her on morphine. After 3 days on morphine she was bedridden and when she is lucid she says help me and drink and mumbled. She also would get agitated and upset because she was trying to tell me something and I just could not understand what she was saying. My aunt would visit from noon to 4pm and grandma slept the entire time. I am with her from 4 to 9 and she would be just like I stated above. On the 5th day of this my aunt stayed a little late and saw how grandma would wake and be agitated. Grandma still said our names and tell us she wanted to get up and help me and drink. After my aunt left I fed grandma and she drank a cup of water. We had a chat which I did most of the talking and she nodded and smiled. I understood her!!! I told her I would take care of her and let my aunt know what she was telling me. I asked grandma if she wanted to to get better. She nodded and smiled. I asked her if she wanted less medication. She nodded and smiled. I told her I would take care of her. She nodded and smiled. She was finally content. For the 1st time in 5 days was she content. She ate and drank more then any other day since she was on the morphine. In the meantime my aunt had called hospice and told her that grandma was much worse which to her that is what it looked like since she had been sleeping all the other days my aunt was here but grandma was actually better then any of the previous days. When I left that night she even said my name and love you. So I cant wait to tell my aunt this the next day. I text her and told her a some of what happened the night before. She said hospice is the one who decides med dosage. I asked to have the hospice lady call me. So the hospice lady called me and I told her everything I wrote above and she said my aunt made the decisions about medication and I said when I tell my aunt I was sure she would understand. This conversation must have been on the speakerphone because my aunt starting yelling at me saying she is not lowering her medication. She is done with this and doesn't want to think about it anymore. Little did I know that she had her medication raised because of the day before and now grandma is never conscious. I went there and had a nurse whom I had never seen before tell me that grandma is dying and can't swallow or eat and drink anything. I told them I fed her and she drank a cup of water the previous night to which I got the reply that she didn't believe that. I would never lie about that. The nurse said that grandma's heart is giving out and there is nothing to be done. When her heart was the issue before she swelled up all over and got fluid in her lungs which she has neither now. She has a fever of 101 which they said is because she is dying yet her cheek by her jawline is completely awoken and red. I am sure it is infected and causing the fever but they won't even treat that and they make her pee in her bed then change the pad once a day. I think that is proof she was drinking but she isn't anymore. How can it be allowed that she is so sedated that she can't eat or drink now. Can I do anything? The nurses and my aunt say that I need to accept she is going to die. I accept that. We are all going to die. She doesn't have a chance now that she is so sedated. Is there anything that can be done or do I just shut up and let her waste away?

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Dear Shelleynune,

I hear where you are coming from and you have a right to be concerned. It's good that you are trying to advocate for your grandmother. It is a tough situation. If your aunt is the primary caregiver, sometime they can feel attacked if people question them instead of welcoming feedback.

Are you able to go directly to the nursing home manager? Talk to a social worker? Or contact Adult Protective Services?

This is my main concern as well with so many nursing homes that seniors are over medicated to make them easier to manage. I'm sure in some cases there is a reason but others you have to fight and fight to make a change.
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Shelly, I skipped most of your post b/c it's often just too hard to read long posts w/o paragraphs. It's not a criticism, just a comment, so my response is based only on your question.

But my first thought is WHY and on what legal basis is your aunt making these decisions? Was she named as health care proxy under a medical POA or Living Will? Did she sign the Admission Papers? If not, who did?

First thing to do is determine whether your aunt has authority to make these decisions.
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Shellynune, you need to remember your Grandmother is on Hospice for a reason. Her life journey is in the final chapter and she needs to pass as comfortably and peacefully as she can.

I realize you want to see Grandmother be herself again, but sadly that isn't going to happen. We all wish our love ones could spend more time with us. Have the Hospice nurse explain to you what is happening so you can get a better understanding.

And please don't challenge your Aunt, my gosh she is also going through a very tough time seeing her own mother in the final stages.

As for eating and drinking, when the body is starting to shut down it can no longer process liquids or foods, it just sits in the stomach [food/water] and in the kidneys [water] which can be painful. I realize you believe if Grandmother can just eat and drink, that she would feel much better.

As for Grandmother saying your name, I was always happy when my Mom said my name when she lived in long-term-care. Then one day I noticed she was calling her nurse and the aides by my name, too.... [sigh].
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Shelly,
Symptoms of end stage heart failure are confusion, impaired thinking caused by changing sodium levels, Shortness of breath, Persistent coughing or wheezing, Increased heart rate, palpitations, Swelling (edema),
Lack of appetite, nausea,
Tiredness, fatigue.
She also has a "lot of pain from arthritis."
With all this, she needs some pain medication.
If you think it's "snowing" her (making her very sleepy or unresponsive), try to speak to the hospice doctor to lower the dose. Often, the dose is a "sliding scale", meaning the nurse can give from 5-15 mg., depending on grandma's apparent level of pain. See if they can lower the maximum amount.

It's a difficult thing to watch someone deteriorate. It's hard to see her so medicated but it's worse to see her struggle to breathe, have a pounding fast heartbeat, shortness of breath, exhaustion and terrible arthritis pain.

The elderly metabolize medications differently than younger people. The effects are longer lasting and they don't need as large a dose as less senior folks.

Since your aunt is her daughter, she would have the final say on how she wants to medically treat her mother.

Even if you can't change anything, keep visiting your grandmother. She can still hear your voice. Prepare yourself for her passing.
I'm sorry. This is hard.
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