Eating prevented by sedation - is this withholding food?

nancmeyer

My mom is 85 and has had dementia progressing steadily since 2018. She was in memory care, generally agitation-prone and hyper ambulatory, capable of recognizing family but mostly speaking in word salads. She’d lost a lot of weight from just not showing interest in or keeping focus on food. A femur fracture from a fall while on Xanax was deemed healable w/o surgery, but has been mostly sedated in hospital (morphine-> tramadol->oxy + Ativan/Xanax+ Seroquel) largely to keep her in bed. Almost no eating and drinking for several days bc she was not conscious enough. After requesting lighter meds and very little display of pain, she’ll take food if coaxed and occasionally takes pleasure in it. Since she could not go to rehab bc she needed 24hr monitoring and her memory care won’t take her back if she can’t walk, the doctor recommended a hospice home. Upon arrival at hospice she has been on morphine and unable to open her eyes and certainly not able to eat. They say it’s for pain and I think to keep her from getting out of bed, but it is now a matter of time before she is gone from lack of water/food, and we are encouraged to be accepting of that. I just have a bad feeling knowing we’re consciously choosing to hasten her death by allowing her to stay sedated and unable to eat. Agitation is still an issue, but I wish mitigating it didn’t require such heavy sedation. Has anyone experienced a situation like this or does anyone have any thoughts to share? Is this common? I’m desperate to hear what others think. Thank you truly in advance for anyone with input to share. Thank you so much and best wishes to all. -Nancy

terei

Your mother is at the end of her life.  She is being helped by hospice + you and your family. Her progression is not going to be halted by eating + drinking which could likely be as not be aspirated.   Keeping her comfortable + without agitation til her death is the goal here.  Do you think your mother wants her life extended in the condition she is in?   I would not, would you?

It is probably not the optimum time, but I encourage everyone to read Being Mortal.  

May flowers

I know that my FIL’s appetite was affected by the medicines he was on (at MC) for agitation and he lost a lot of weight. He was on risperdol, lithium, Ativan, seroquel, namzaric, and others. He was also walking well without any support, but fell in January and had to have a partial hip replacement. They had to take him off most of the meds to wake him enough after surgery to eat and try and walk. He eventually came off all the meds at our house and now his appetite is back to where it was before the meds, he is alert, awake, and trying to walk all the time (but is too unsteady). He did regain some skills - feeding himself and is communicating the best he has in 6 months, but other skills are lost. There were many who thought he was at death’s door the first month after surgery but he has been slowly “waking up”. 

But, having said that, everyone is different. I know others who never really recovered from a fall and it was the beginning of the final days. 

Our hospice has been very respectful of any request we have, and right now it is no meds other than melatonin - but he has not been agitated or aggressive (except for clothing/diaper changes) since being here with us so that is different than your mom. The hard thing when they are in a facility is they have to chemically restrain because they cannot physically restrain. At our house, we do use a seatbelt when he is in his chair, and I am here alone, so he does not slide out of the chair or get up without someone next to him (https://www.amazon.com/gp/product/B07KR6SST9/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1) When  DH is home we do get him up walking because he wants to. But we have to be hyper vigilant because when he is unbuckled or he will stand and try to go in a split second and will fall even when we are 2 feet away before we can get to him.

I was ready to say goodbye a few months ago. And I know everything can turn on a dime. But I do feel that we would never be able to gauge where he was on all the meds. If he stops eating now, we know it’s because he is choosing to. That is important to us. For now, he is comfortable, laughing/smiling, and trying to communicate so we are taking cues from him as to his will to live.

Olly_Bake

Thanks May flowers for your post. You are helping me make a decision. Nancmeyer, I'm sending you much love and hugs. It is so hard for us both right now. Probably harder than we ever imagined.

May flowers

It is so hard, Olly. Had someone told me to leave him in the bed, he probably would be gone by now. We always got him out of bed. At first, he would sit in his chair and doze off showing little interest in eating or otherwise.  We just fed him when he was awake. But he rallied. That doesn’t happen for everyone. 

This morning he fed himself 2 eggs and a sausage, OJ, toast and asked for another sausage. Months ago he might not have eaten more than a bite of eggs. Everyone is so different and it is so hard to know where they are, and if this is “it”.

BlackCat1

We have a very similar story with my LO.  She almost passed and then made a recovery.  Unfortunately after all that happened and being in bed so long she could never walk again which made things a lot worse for her.  This is a terrible disease.  It is devastating to watch your LO go through it.  My LO now has contractures and curls up in the fetal position unable to move.  Hospice has been able to help her with medications to get her body to come out of that position.  It's hard to believe but it just keeps getting worse.

BlackCat1

I have wondered if the end doesn't look like we assume it will.  My family has voiced feelings of frustration that our LO was medicated and kept from walking to the point that she can't anymore.  I have wondered if this is something that happens a lot. She was a severe fall risk and when she was ambulatory it was nonstop wandering.  Now she suffers terminal restlessness tries to get out of her wheelchair and bed nonstop and has to be watched closely every minute as she will fall.  She bites, hits, and kicks while having her diaper changed.  The longer it goes on the more devastating it is for us to watch, and for her to go through.  My LO has been on hospice a year.

May flowers

Blackcat, sorry you are going through this too. My FIL went through a month of PT after his surgery, and he never did walk right even when he was not on meds. The PT said his body can do it, it was cognitive, not physical. This was so true - he was/is definitely strong enough, but the brain signals to put one foot in front of the other just weren’t there. Sometimes walking meant walking backwards or criss  crossing his feet, he just can’t  get it. He can’t follow directions either so his trying to walk just ends up frustrating everyone.

So, no matter how strong or weak they are sometimes it is just a brain thing, I think. My FIL wants to get up every few minutes, but every time he doesn’t know what to do after and he just collapses. He has no sense of space or direction, and even rolling his wheelchair, he tries to roll through an object in front of him or over whatever is behind him.

mommyandme (m&m)

I really wish there was a crystal ball attached to this disease.  We wait and wonder/wander then wait again… 

Maybe a skilled nursing facility could be an option if you aren’t sure hospice (just comfort care) is in order.  

I hate this and I’m so sorry for your horrible situation.  

BlackCat1

Hi May Flowers,

I am sorry that you are going through this too It seems there is always something new happening that is challenging.  

RanchersWife

Nanc,

I’m so sorry this is happening. We were in your position a few weeks ago. Here’s what happened. 

https://www.alzconnected.org/discussion.aspx?g=posts&t=2147560253

My mother-in-law passed away two weeks ago. I understand your feelings. We opted for no feeding tube but tried to reduce pain meds enough to allow her to wake up. It didn’t happen. 

Love&Light

Nanc-

I am so very sorry you are going through this. I know that you are doing your very best and my heart goes out to you and your family.

I lost my Dad around the same time Rancherswife lost their LO. Our story is very similar to yours, agitation, loss of weight, multiple falls: 

https://www.alzconnected.org/discussion.aspx?g=posts&t=2147560193

It was a heart wrenching situation. I still agonize over the what if's. What if I had managed this situation better by asking hospice to not go so hard on the sedatives, what if, what if, what if...

It's a terminal disease that took my Dad on March 17. Could I have prolonged his life by desperate countermeasures and management? Possibly. Would that have been best for him and his quality of life? No.

And that is the hard truth. This is a cruel and grueling path for us all. At some point I realized I could no longer control the situation. and I had to let go and let the universe take over. 

abc123

I'm sorry you are having such a difficult time. This disease is terrible and I hate what it does to all of us. 

I bought the book Terrei mentioned. Being Mortal by Atul Gawande. It's a powerful book and I'm thankful I have it. I wish every caregiver would read it.