Turmoil of Decision

Saya_G

I am not sure if writing this will help or make give me more turmoil.

My mother is stage 7a dementia - she still has good days. 

Her feet are swelling, she had edema. Her legs are seeping water. 

She has heart issues, kidney issues. She is cold all the time. The lasix are causing her blood pressure to drop, so they have taken her off of the lasix. 

Hospice is offering comfort care. Hospice doctor called said that this is all they can offer, I asked about hospitalization. He said we could take her off of hospice, and put her in the hospital, they would then hook her up to monitors that would give them constant reading on how her body is reacting to treatments - whether that be lasix or what. He said we might get her to rally, but that in his option, her heart is failing and once out of the hospital it would only be a matter of time before she'd have the same issues. It could be a month, maybe longer, but in his option the problem would return. He would only say that it is up to us, they would understand, no matter which direction we took.

My sibling and I have talked, our mother signed a DNR a number of years ago. She made it clear she did not want to be kept alive, if she has no quality of life. We are in agreement that she would NOT want a prolonged life of medical treatment after medical treatment - she has told me several times over the past month that she has not quality of life living at assisted living. None of us are able to give her the 24/7 care she needs (her hospice nurse tells us that even if she was living with one of us, her health issues would still be the same - living in assisted living did not cause them to be worse). 

She is wheelchair bound, incontinent, and often confused as to time and place. She suffers delusions, but none seem to upset her.

I assumed that when it came time to make this decision she would be completely gone mentally. Not that I wish that for her! But she still knows who I am - most of the time. 

UPDATE: I should have added that the facility folks have made comments like, "she should be on an IV", "I know that hospice got a low BP reading, but I just got a good one. Her breathing is clear, she's doing well." Am I in the middle of a power pull?!!! 

How do we know if we go to comfort care that we are making the right choice?

Saya_G

Welsh022

I’m so sorry you are going through this. My mom has dementia and I am a hospice doctor. 

I don’t like to give advice— every person is different. One thing that can help: imagine your mom from 20 years ago is right here. She can see what’s happening. What would she tell you? Would she want to go to the hospital and do more treatments? Would she be happy with her quality of life now?

That can give you some answers, and hopefully some peace. Blessings to you. 

M1

I think what Welsh said is correct.  The truth is:  she's at the end of her life.  She made her wishes known to you, so time to honor them.  Comfort is everything at this point.  For example:  I'd stop taking her blood pressure.  Not going to do her or you or any one else any good.  Counterintuitive I know:  but the ONLY relevant question is:  is she comfortable, or not?  If she is, well and good.  If she's not, what can we do to make her more comfortable?  Those are the only questions that matter any more Saya.  Good luck to you as you go through this.....

zauberflote

I agree with Welsh and M1. It is very very hard to be at the point you're at, but your mother already gave you guidance. 

I don't think you're seeing a "power pull" at the facility. Where my mom was, they were very used to people being on hospice and dying on their watch, but that did not make it any easier for  the caregivers who loved their charges. My MIL's at-home caregivers were the same-- they were devastated that the end was coming. I think they're just hurting, and hoping against hope for a better story. 

I think you will have to trust your mom's judgement, that you are following her wishes by going on comfort care. A miserable mother who doesn't understand why she is in a noisy hospital room with all these painful things happening to her is very sad to watch (speaking from experience). She's already spoken her wishes-- here's one last opportunity for you to say "yes Mom" to her with all your heart and love. 

Daughter80

All I can say is hugs and prayers for you and your mom. So incredibly heartbreaking. I pray you will know exactly what to do for your mom.

harshedbuzz

Saya_G-

I am sorry. This is already difficult stuff-- the dissonance from differing opinions is the last thing you need as you try to process where you are now.

Does this hospice company--or another local to you-- have their own dedicated hospice unit available? This might be a better physical setting for your mom at this stage as the staff there would all be on board with hospice philosophy and care strategies. 

HB

Quilting brings calm

I can’t remember if your mom is in the  AL or the MC part of her facility.  My parents’ AL nurses and resident assistants seem to be a never ending group of ‘newbies’.  They really do not seem familiar with the end of life stage.  That’s probably what is causing them to look for signs of improvement and to tell you about them.  

I  would simply reply to all  of their hopeful comments with ‘ I will let the hospice nurse know when he/she gets here’. 

Is your sister in this same facility?  If  so, then maybe  you don’t want to move your mom since being  there makes it easier for your sister to see your mom. 

You’ve made the right decision.  It’s just hard emotionally to make that decision and then feel daily as if you need to make the opposite decision. Especially when well meaning staff don’t understand the reality of your mom’s situation. 

ButterflyWings

(((Saya))) - hugs to you at this tough time. I agree 100% with the input you’ve received here. And I know how hard it is. Have been through this with a beloved relative who chose me as POA, and now I am likely only a few months behind you with my DH. I am so thankful for M1’s criteria, such a clarifying question for me: is he comfortable? That’s all that matters now.

In addition to the other dynamics mentioned (lack of experience in end of life realities, fondness for their residents, habit of trying everything to prolong a person’s life,) I hate to say it but facilities also have the lucrative financial interest in keeping beds full and residents alive, even if quality of life is long gone. 

Loving Welsh’s suggestion. What would your DM want or do? What a blessing you don’t have to guess at that. She planned ahead and made her wishes known, trusting you to carry them out. You know her better than her on-site caregivers. I don’t think they should redirect you and can understand the turmoil that creates. They probably are just trying to give you some hope of miracles but that’s not what we need at this stage. 

I agree the inpatient hospice facility may be a good option if one is nearby and that would bring you both more comfort and cooperation to intervene only for comfort measures. You are a wonderful, loving daughter. Stay strong.

Saya_G

Thank you all for your posts and support. 

I visited my mom today, her feet are continuing to swell. She is in bed. She is tired, says she is not in pain. 

The wound care nurse was there, she told me that she used to be a hospice nurse. She was very kind and assured me that comfort care is the direction she thinks we should go with my mom. 

I am still conflicted, but keep remind myself that I need to do what is best for mom and what she would want us to do. Your input has been such a blessing! 

Thank you! 

Please continue your prayers, I’m sure this is going to an emotional time for me and my sibling.

Saya