RSS Feed Print
Posted: Wednesday, October 30, 2019 8:53 PM
Joined: 9/26/2019
Posts: 33

Okay, edema. Does anyone know anything about this? My mother is in stage 7. She can't speak or walk and is doubly incontinent. About a month ago, the NH/Hospice mentioned that her legs were swollen and that she had a bedsore on one heel. Then two weeks ago it was that her feet were too swollen to wear her shoes anymore. Today I was told that she can no longer wear her socks as they are cutting into the swelling in her legs. This is all the information that I have been given no further context or explanation. Thoughts? Is this significant or normal?  I should also note that my mother was clear that her suffering should not be prolonged for any reason so please don't suggest interventions.
Posted: Wednesday, October 30, 2019 9:03 PM
Joined: 6/20/2016
Posts: 2304

I guess I don't understand - of course it's significant because it's probably uncomfortable.  I understand you want no interventions, but did you ask if a diuretic might help the swelling?

Eventually, if there is no intervention, the legs could start weeping and that would be a mess AND not comfortable.

If you are trying to find out what the swelling is due to, you would need to ask hospice, because they have her history.  And you can ask if your mother seems to be uncomfortable or in pain due to this swelling.

Putting socks or shoes that will not fit will hurt her, so unless there is a diuretic that can help she will need to wear soft slippers or something similar.

I think absolutely no intervention can be as bad as intervention, especially when we're talking about something like swelling or even choking on one's saliva.  There is an intervention for those and to me, it's prolonging suffering to not use a pill or patch for those things if that will help.

Posted: Wednesday, October 30, 2019 9:26 PM
Joined: 9/26/2019
Posts: 33

I guess I believe that everything about this process is uncomfortable and I can't imagine any way that dying is ideal at this point but my mother begged me to stay true to her wishes to prevent her prolonged suffering and I have not always been true to this ideal.  I have weakened in the face of bullying from doctors, hysterical threats of her suffering, and my own fear of her death but she has never suffered less because of this, just differently.  I am at peace now with upholding her wishes and all I can do is hope that she can forgive me for not being stronger sooner.

I was/am looking for insight from other who might be/have been in this situation as to what could be causing this or its significance/timeline, etc.  The HN doesn't act like it is a big deal so hearing from others with this experience is helpful to me.  

Iris L.
Posted: Thursday, October 31, 2019 12:38 AM
Joined: 12/15/2011
Posts: 16442

Does she have congestive heart failure r hypertension? Has she been eating more processed foods with a higher sodium intake?  Ex: cookies, crackers, bread, soup.

She might sleep with her legs elevated above her heart.  (On pillows or a wedge). Ask her doctor first.

Iris L.

Posted: Thursday, October 31, 2019 12:58 AM
Joined: 9/26/2019
Posts: 33

She does have hypertension and she has been removed from all meds at this point other than those for pain and anxiety.  She can no longer eat so she drinks her meals, I am not really sure what all is in them but I am sure they are very high in calories to replace all meals.
Posted: Thursday, October 31, 2019 5:22 AM
Joined: 8/10/2016
Posts: 2199

My thought process is the same as Iris.
Posted: Thursday, October 31, 2019 6:34 AM
Joined: 3/21/2019
Posts: 54

I'd go along with dayn2night and iris. Although my Mom is not at the same stage as your Mom we have had much experience with the ulcers on my mom's legs that come from edema once the legs start weeping.  I would be thinking along the lines of comfort for my Mom  that may come from addressing the edema. I understand and agree with you on not intervening to prolong life especially if the end is near.  I would talk with doctor regarding cause of edema. If the intervention makes her more comfortable and isn't life prolonging then what's the harm. I'm sorry that you are having to deal with this situation and do not envy you.
Posted: Thursday, October 31, 2019 8:15 AM
Joined: 8/12/2017
Posts: 243

Normal for what?  Sounds like you need more information, as to what is causing it and if it is making her uncomfortable.  When you ask if it is significant, it is if affects her comfort. Does she grimace or grunt when her legs are touched or moved, for example.  Could her legs be elevated better, or position better to take pressure off the pressure points?  

I fully understand your not wanting interventions.  Your mother is lucky to have such a staunch advocate in you.  You mention bullying by doctors - are you saying, being pressured to permit treatment that isn't in her best interests?  It would help to define what is meant by "intervention".  In my view, giving her medication for the edema would not go against the principles of hospice, if it would be to help her feel better and perhaps breathe more easily, and should be considered irrespective of whether it shortens life or prolongs it a little.  

The hospice nurse should give you sufficient explanation to address your concern.  You might ask if your mother is receiving enough morphine.  Morphine is sometimes given to decrease the load of extra fluid on the heart, in addition to as a pain reliever.  The key is in your words, to not prolong suffering.

Posted: Thursday, October 31, 2019 10:44 AM
Joined: 10/9/2014
Posts: 1092

I understand your position about nonintervention.  My LO is on hospice and she receives comfort care only with only meds that keep her comfortable. Occasionally, she will have edema in her ankles.  It can be caused by various conditions.  My dad recently had it when he was in rehab for leg weakness.  Doctors said with him it was due to him sitting for long periods in his wheelchair, which I think was true, since it went away once he regained his strength and got back on his feet. (He is not a PWD.)   

Has she ever had any kidney problems?  I might inquire from hospice or hospice doctor if that could be causing the edema and what you might expect.  

Iris L.
Posted: Friday, November 1, 2019 1:17 AM
Joined: 12/15/2011
Posts: 16442

I'm sorry I did not return sooner but I am preparing to go out of town.  Your mom will probably soon have fluid (edema) in her lungs, causing shortness of breath and air hunger.  The hospice doctor should be advising.  This is a medical issue.  As a minimum she should be positioned and given scrupulous skin care to avoid skin breakdown (bedsores). Please consult with the hospice doctor.

Iris L.

Posted: Friday, November 1, 2019 8:48 AM
Joined: 6/12/2016
Posts: 1037

Hi Neetzie. I’m checking back to see how you and your Mom are doing. My heart goes out to you. I know that long distance caregiving is extremely difficult. Is it possible that you could visit your Mom in the near future? Maybe a visit would help making some decisions easier for you. Please keep us in the loop. We care about you and your Mom. Ask as many questions as you like. Take good care of yourself.
Posted: Saturday, November 2, 2019 9:32 AM
Joined: 9/26/2019
Posts: 33

Thank you for your kind comments.  I spoke with the hospice nurse and she said that she doesn't find the edema or her rising blood pressure to be concerning so I guess that is just the way it is.
× Close Menu