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nal123 Asked February 2021

Elephant in the room...how do we proceed?

My Mom, early 90s, had a major cancer surgery six weeks ago. She refused rehab and came home three weeks ago. She is very withdrawn, barely eating, not drinking, sleeping constantly and completely bedridden. Yet the doctor says she is strong and could have a year left if she starts to eat, drink, and move around. Of course, when she is asked to do anything, she says "not now" "later" "okay, I will" and then falls asleep. When we try to have a conversation with her about her wishes, we get "of course I want to get better" "I will." We do not have hospice (sibling opposed due to past experience). I would welcome any thoughts on how to proceed. Thank you for reading.

AlvaDeer Feb 2021
Please speak with your Mom. Then honor her wishes. Does she know the prognosis? Doctors often error on the "positive" with that "She COULD have..." business. It sounds that this is an incurable cancer. It sounds that Mom is staying in bed and doesn't wish to eat and drink and "get better". She may be done. She may be exhausted. I have often here written of the "exhaustion" of my father, and how he and I discussed it. As a nurse so many patients told me that they were well and surely "done" with life, and wished only for sleep and peace, and then tell me that they couldn't speak with their family.
Speak with your Mom about what she wants now. If you are her POA for health then follow her wishes after discussing with the rest of the family what they are. If she would like Hospice please honor her wishes. If she wants basically to eat what she wants, move when she wants, then honor THAT.
Sometimes we ask a family or a forum when we should ask the person involved. I wish you so much luck. I am so sorry for what your Mom is going through, and what you must witness and worry about.
nal123 Feb 2021
Thank you for your response. I did speak to her yesterday. She wants to get better but just feels too exhausted to do much of anything. Her surgery was supposedly curative although she hasn’t had the scan to confirm.
DadsGurl Feb 2021
My mom’s health was failing and she was experiencing a lot of pain. She refused to take heavy pain medication so suffered for 4 months. She barely ate, didn’t drink enough, got hospitalized for dehydration twice. She was she basically wasting away and allowed it. I tried being supportive, I tried getting angry with her & neither option worked. Just before she passed I asked her why she didn’t try harder to hang on. She told me one hits a point where you’ve truly had enough of the daily struggles; you’re very tired and feel you’ve had a great life but are ready for what’s next. She told me she had to answer us with what we wanted to hear, but going out in her time and her way was the only real control she had. I actually understand her point. She wasn’t afraid to die and believed she’d be in full light again. She passed with family at her side knowing we finally supported her decision and opted to keep her comfortable with palliative care. Tough situation, but the right one for our family. There are no easy answers. God bless you and I hope you can all find peace.
ShirleyB Feb 2021
Bravo! You did it correctly. Let her go peacefully, not trying to please you. Just be with her as much as you can and don't try to constantly stimulate her or engage her in conversation. She knows what she's doing. God bless her and all of her family.

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polarbear Feb 2021
Seems to me your mother originally wanted to fight to stay alive, so she went through with the surgery. But now, post-op, her aging body is too weak and the exhaustion makes her unwilling to do anything. Totally understandable and logical. The doctor said she could have 1 year if she would eat, drink and move around. So, if she's unwilling and unable to do those things, she will probably go sooner.

If I were in your shoes, and she was my mother, I would let her rest and sleep as much as she wants. She can eat and drink when she wants. The main focus would be to give her the most comfort, not to cajole her to do things she obviously has no energy for. To do the things you want her to do may seem easy for you, but for her, it may be like running up the stairs or climbing hills. If she regains strength and recovers, great, if not, at least she is comfortable for the rest of her days.
Beatty Feb 2021
"The main focus would be to give her the most comfort".

Agree.

Unlike the family I had the misfortune to meet recently. 90s+ elder with Alz with #hip; Family wants curative hip surgery rather than comfort care. Why? Elder could walk pre-surgery & still recognised her family. But, also had delusions, is very physically aggressive, has emotional distress & DNR in place.

Child 1 brings crystals & wants a full walking talking mother.
Child 2 wants her to go on & die (peacefully)
Child 3 changes mind everyday between the two directions.

They bickered, distracted, obstructed care, argued with medical team about what direction they WANTED.

A no time seemed able to comprehend the future would happen regardless of what they WANTED but what would BE.

The elder could have been returned to her own NH room & bed to live her days in familiar surroundings with familiar staff, to recover or not as would be. But no, the bickering continued, then whether to transfer to a hospice setting - for so long that she was too unstable to move by that time. The obstruction to comfort measures resulting in pressure injuries (reported to the Coroner).

I hope never to see such selfishness again dressed up as 'caring'.
polarbear Feb 2021
If I were 92 y.o., weak, sick and tired, and just wanted to sleep and rest, anyone cajoled me, pressured me, insisted that I got up to do this and that, and if I had the strength, I'd tell them to go f themselves.
Gershun Feb 2021
:P
Susanonlyone Feb 2021
If she’s in her 90’s and had major surgery which may have extended her life by a year, she should have hospice care so that she is comfortable for the short time she has remaining. She does not need to know that it is hospice care and could be told that it’s private care her doctor prescribed to help her recover.

Sloyce3443 Feb 2021
I am so sorry. I know that life's transitions are hard for everyone. When a loved one lives a long life, the next steps seem impossible and obscene to everyone who loves her. One day at a time and one issue at a time. I wouldn't press her, but rather let her make the decisions if she can for as long as she can. She needs to know that her will and her desires are very important to everyone and that her comfort is everyone's concern. This is her life and she wants to face the next chapter on her own terms. Let her. We want her to be comfortable and stay with us, as long as she can. Let her decide that she wants to stay. Allow her the dignity of saying that she doesn't want to stay. Her behavior will give you a hint to the condition of her spirit. Life is much more than a strong, healthy body. What helps us to stay physically healthy or to heal is our outlook on life. The human spirit, our hopes, our dreams, finding peace in our hearts motivate us to do more. Sunlight, music, color, family, friends and memories all help to keep us anchored to this life. Try to keep a joyful, peaceful, inviting atmosphere. Lots of warm gestures of love. You never know what may encourage and motivate a smile or even a desire to take action to do something more, even to recover. Just support her choices and pray for peace and joy. I am praying that she decides on a new lease on life and joy at another day 💓
DianneKK Feb 2021
What a sweet caring reply and advice!! We all can take something from your reply to incorporate into our own journey! Thanks:)
JoAnn29 Feb 2021
Surgery in the elderly does a job on them. I think Alva will agree that Anesthesia can stay in their systems for a while. Since she wouldn't go to rehab I am surprised they didn't offer in home therapy. She may still be able to get with a Drs order.

I am with Alva with how to handle the situation. Maybe u should take her to the doctor just to get her vitals checked and make sure it not meds not something physical. Maybe she is depressed.
nal123 Feb 2021
Thanks for your response. When I say bedridden, I mean she literally needs someone to roll her over in bed, can’t sit on her own, walk etc. Her dr has come in and she has had blood work, urine test and a chest X-ray since discharge. We do have home therapies. She is cooperative but won’t do any of the exercises etc in between.
altheahal Feb 2021
I'm not clear why your sister is POA unless your mother gave it to her. If you are talking to Mom and she is coherent, and can answer your questions, does not have dementia then why isn't she making her own health care decisions? If POA kicked in because Dr declared her incapacitated due to meds for surgery, it can be reversed. Agree with person about hospice, they are not all the same, but a great resource for your Mom and family. Your sister should think about what's best for your Mom instead of her bad experience. Maybe a Palliative care consult would help. PC also a team approach and does a lot of same things as hospice but you can have curative.

bectwin1 Feb 2021
I tend to agree that 3 weeks after major surgery is quite a short time for a person in their 90s. You’ve had a talk with her and she does want to get better. Depression will knock it out of her but it may just be a slower recovery and the meds. An appendicectomy is a relatively minor operation and is quick to do. Curative cancer surgery is a big deal and there will be a lot of healing going on. It also takes a lot longer and so more anaesthesia and recovery for a young person can easily take 6 weeks. If she is still getting regular painkillers, find out if she actually needs them and how much. Opiates can make you feel queasy, sleepy and constipated. It may be the only pain relief she needs is paracetamol/acetaminophen with an occasional top up of something stronger. And I agree about high calorie food supplements like ensure or milkshakes. You can even use things like ensure or full cream in a recipe to pack in calories in a low volume. It’s important to make sure she gets good nutrition including protein too as she will need it for healing. Is she able to sit up in bed with support? Doing that now and again for short periods will be helpful to keep her body acclimated to being upright. If not then don’t be surprised if she needs time to readjust to that too. Muscles waste really fast when you are not using them.

bevthegreat Feb 2021
Be sure to check with her Dr about the Medication she is taking and see which ones cause drowsiness and sleepness.

Maybe she needs to take Less Meds.

Most Seniors are taking far more meds than they need or should be.

You mentioned she just had Major Surgery and it's only been 3 weeks?

How long did they want her to go to Rehab? Probably much longer than 3 weeks?

Maybe she just needs more rest as she just had Major Surgery.

You should find out things they would have had her do in rehab and get her to do them.
Try having her get up and go to the table to eat.
Have her get up to go to the Bathroom.
Try interesting her in something she use to like to do.

GI've her a Foot Massage.

GI've her a Manicure and Peducure

Play music in her room.

Open her window up and let some fresh air and sunshine come in.

Look at lots of old pictures with her and reminise.

Let her use crayons to color a picture.

Play a game of cards with her.

Prayers

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