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

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

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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 She is very withdrawn, barely eating, not drinking, sleeping constantly and completely bedridden.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.

Care Decisions Mental Health Refusing Care

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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.

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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.

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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.

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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.

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Major cancer surgery in her 90s? Wow, that's a lot to be dealing with. Cancer AND surgery both take a huge toll on a body. Is she on a lot of meds, maybe new ones, that could be causing her to withdrawn and sleepy?

Is there a prognosis for her cancer? How was your mom's condition before surgery?

Do you have POA? If so, and if her condition is hospice worthy, you do not have to abide by your sibling's opposition. Hospice is often the right answer, at some point.

That's a big IF from the doc - if she starts doing X, Y and Z. If she doesn't start cooperating, it's not going to be pretty. But, at her age and following a major surgery, it could just take her a bit to snap out of it. Being under for surgery can cause some serious brain fog, sometimes irreversible in older folks.

Do you have any outside help coming in? I find my mom is ALWAYS much more cooperative with the professionals than she EVER is with me. I would try to get some services like PT in home.

Might not be a bad idea to get her back to the doctor?

Good luck.

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Thanks for your response. Her surgery was expected to be curative. They need to do a further scan to check for spread but have been unable to do that. My sister is the POA, so she is calling the shots. We are fortunate to have help and VNS coming in.

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Hospice is wonderful, and bad experiences are the exception, not the rule. I fired the first hospice company I hired for my dad, loved the replacement one, and now I'm using a third one I love for my mom.

Please don't let your sibling veto such a vital resource for your mother, because pain management is a huge part of what they can do for her. It isn't something to do on your own.

By all means, have the conversation wit your mom. She'd likely welcome it, and make sure that she understands hospice is not a death sentence.

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Thank you for your answer...My sister is the POA, so I can’t proceed without her agreement.

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Thank you for your response. I did speak to her yesterday. She wants to get better but just feels very tired, too tired to do anything.

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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.

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"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'.

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Have the doctors review her meds for side effects. I had an aunt, 94, that fell. After surgery, she was put in a home. She stopped eating and was very listless. Six months later, I was in her state and visited her. Just by listening, not direct or accusing questions, to her talk I figured out what the issue was. The doctors were over medicating her to were she got sick every time she ate (top and bottom). So she ate next to nothing and was having to be feed intravenouslly. Among other issues,, all this caused no energy, bed ridden, & weight loss. After a discussion with her doctor, he greatly reduced her meds and then she started pigging out.
Good luck.

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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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I’m finding that my elderly parents and in-laws really don’t want to talk about death. I don’t push it. You really can’t force them to eat or drink. Offer it if they don’t want it then leave it alone. Their bodies know what they need. You may want to ask about palative care or hospice to help you understand what she’s going through and what to do.

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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.

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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.

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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.

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Please talk to your MD about antidepressants.

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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.

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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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Look into palliative home care. It's about keeping people comfortable, assessing their needs and monitoring vitals, rather than ushering them towards a peaceful death.

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Absolutely!! My advice as well.

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HI nal123.
Sounds like she is tired and ready, but doesn't want to speak the words.
My MIL didn't have a problem with the words, but admitted to her pastor that she was afraid of the actual act.
Follow her ques. Google end of life stages and signs. Or, most hospice companies will gladly give you a booklet with this info.
Hugs.

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is she taking any kind of pain meds? Could cause the constant sleepy issue. At her age, the pain meds stay in system longer as well.

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Take her at her word. An operation at age 90 takes a lot out of a person. She probably needs extra sleep and rest for a while. Her stomach may be a bit upset and unaccustomed to food after being in the hospital. Can you tempt her with foods that will be easy to swallow and digest, even if it's not a balanced diet at first: ice cream, smoothies, thin soups (like chicken broth), will she take Ensure or a protein shake, custards...? Can you get rehab aides to come to your home to give her exercises? If she's bedridden, you'll need to get a wheel chair for her. Medicare should pay for it and for other things to make her comfortable for her if she's at home. Get the advice of a social worker or hospice worker on the kinds of equipment you can ask for, and ask them to show you how to transfer her from the bed to the wheel chair, if you are able to do this. If it's warm enough, open the windows and let fresh air in, or sit outside with her in the sun (in the wheel chair). I don't where you live. My mother, also in her 90s didn't mind bundling up and having a blanket over her legs, in order to sit outside in the sun. She's in a facility, and they have her sit in her wheel chair in the common room, rather than being alone in her room all of the time. If she's bedridden, you'll have to turn her, and there are mattresses that inflate to give a little massage. I think Medicare pays for this.

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Your mom is blessed to have such a caring, loving and thoughtful daughter like you.

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Well she doesn't want to talk about it and probably doesn't care. You'll have to decide among yourselves what she would want. Just make sure she's in the lead, she's warm, safe & comfortable & if she won't eat or drink then that is what she's chosen. Although shakes might taste good. Sonic has a large peanut butter Oreo with 1700 calories. My mom likes it. Good luck. Your care & concern is evident. I'm sure your mom knows she's in good hands.

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Just a thought....Approach her like....Mom we are here to help in anyway that we can and we want you to get better and the nurses doctors and ourselves are doing all that we can to make things better for you. We are glad you can communicate with us. However things will happen and we want the best for you now and having comfort in knowing you are satisfied with your care. As you know that if things do happen, we want to feel that we have done our best to make it right for you.
You may give her an experience if you have a positive one, unfornately so so passed and, it was very nice to know that so, so kids-family had things arranged for their parents-sister-brother and all went well.
WE like to do the same for you if ever that was the case. What would you like for us to do if a decision needs to be made? Now wake up and lets talk about it, I know this is not easy but as an adult thing, you know we have to do this. Give her a time, you think she can handle. love her..

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If it is possible, insist and do what is necessary.
Do you have a POA for health care? If so, you can decide that she'll go to rehab. Of course, she didn't want to go. They say later and I will, okay . . . but these words are only to put off what is needed in any given moment. Don't buy into that. Figure out ways to shift around it. Offer a treat even if they do not get it (they will / she will forget).
* I'm in that situation now with my friend of 18+ years (I manage all his care).
He didn't want me to call Paramedics yesterday.
He didn't want to go to Hospital when Paramedics advised (due to possible stroke).
He didn't want to stay in the hospital overnight; he wanted to be released from Emergency room.
He doesn't / didn't want to get an MRI this morning . . . I acknowledged his fears, feelings and concerns - and used the carrot on the stick "you can go home IF you get the MRI (which is how they can tell if he had a stroke).
He - perhaps like your mother - is beyond MISERABLE and DEPRESSED and [perhaps not like your mother] wants to end his suffering. As he says, he wants to go to sleep and not wake up. With Covid for over a year and no driver's license for perhaps two years, and serious balance / walking difficulties, he has been crazed for a long time. I do understand his frustration(s).
* MY EXPERIENCE WITH HOSPICE (for w/ a client) - they were a Godsend as everything was on my shoulders as I managed ALL her care, incl business needs.
- HER sister didn't want her to get Hospice either for months. By the time client got it, she was gone in a week, if that long.
- Do what you need to do to get Hospice. Yes, I had a 'thing' happen w Hospice appts + addressed it very clearly and quickly w the CEO. After that, they rolled out the red carpet for me.
- Once that was handled, they helped in ways I can't even list. 90% of the stress-ors were lifted off of me; they provide (free) equipment and available 24/7 to call for support.
* While people have different feelings about the (nearing of) end of life, I feel that a month or six months or a year doesn't mean it is worth putting a person through if they are miserable. Having a few GOOD MOMENTS means so much more in the moment - and the moment is all they / we have.
- Suffering day after day is not a quality of life for them; it is a way to keep the person alive for the family member(s) as they do not want to let go. As is an AA saying (?), "let go and let God".

PLEASE NOTE: I am NOT saying that your mom is miserable and/or ready to transition.

* Get Hospice if you can for you. It will make your moments with your mom that much more pleasant for her and you - this will be quality time for you to cherish.

* I am not disrespecting anyone's religious beliefs. I believe strongly that you need to do what is in your best interest, which will support your mom for the time she has left. It is quality, not quantity. Gena

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it normally takes 6 weeks for anyone to recover from surgery (even though some people rush it and go back to work too early), but for someone in their 90's it might take a little longer and depending on where the surgery (on her body) took place, etc, she might be a little tender. However, If you could ask her to get up for just 1 hour in the morning, 1 hour in the afternoon, and the evening. help her walk to a chair or table, etc. Then make one trip around the room before she can lie back down. Does she like pudding, applesauce, something light for the stomach until she can get used to more solid foods. ice cream, milkshakes, rice pudding and some things you could mix in a protein powder so she is getting some extra nutrients. As far as the "wishes" for her future, write down some options (cremation, burial), a DNR or not, stuff like that..........then tell her to circle what she wants, but if she hasn't had a POA drawn up, now might be a good time, some Elder attorneys will come to the house or whatever. Wishing you luck.

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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 💓

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What a sweet caring reply and advice!! We all can take something from your reply to incorporate into our own journey! Thanks:)

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My mom was 92, had cancer of the tongue. She was able to have the cancer removed from her tongue I didn't want her to choke to death. She recoup slowly with a lot of therapies, learning to talk eat, etc. She was walking around the house fine. Her appetite was ok. But slowly she started sleeping during the day, up all night. I kept trying to help her reverse that. Her appetite started slowing down, I kept encouraging her to eat. Would put a variety of colorful small portions of food and would make her eat. She started sleeping more, and eating less. The cancer started growing in her neck. It was painful, and we were not going to get her chemo or radiation!! Why?? At 92. Finally I called the doctor and insisted she go on hospice. Friday she signed the papers. told dad if she wants to sleep let's let her. If she didn't feel like eating let's not force her. Monday she had a horrible episode, called the hospice nurse and she had to be moved to a hospice facility. Best thing happened, because my dad and I could get some sleep. And we would then visit her for the day. She never woke up and passed 7 days later. This situation only took 3 months!!!

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Sp sorry Gor your loss! Hospice truly is a God send service.

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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.

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:P

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I would definitely recommend hospice services. I've been a volunteer with the palliative billing dept. for last year and the service they can provide your mom & you is invaluable. You can't always go on past experiences. Your sister opposes? But mom isn't living with her and at her age and the unwillingness to do anything now, will likely progress worse if left without intervention. The first visit they will come out and do an assessment to see which services are the best fit for your mom. Which may be weekly visits to check vitals and go over nutrition and any concerns you may have. So many people think hospice is only for the dying but the palliative care, which is a step down, is a vital care and helps so many families. With your mom's age, having it in place now, will make it much easier when her end of life care is needed. Just think about it! Your situation is very tough and my prayers go out to you:)

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Is there a specific difference between hospice and palliative care? I have heard that some facilities do not use one or the other term. Just wondering any thoughts on any difference with these categories.

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Imho, it is possible that it's too soon for her to do these things. Perhaps with the continued prompting, in time that she will, although she is in her early 90s.

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Please talk to her doctor about what you are noticing. She may be depressed - very common in seniors. She may have problems metabolizing medications - pain medications may be making her too sleepy. She may need to have home health care to help with all the tasks you listed - which most insurance companies will cover for a certain length of time after major surgery. Her doctor needs to assess her to pinpoint the type of help she needs and get her a prescription for care.

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Major surgery in anyone's 90s is a recipe for a very long haul recovery at best and at worst, a shortening of the person's life and/or reduction in quality of life from a newly hit baseline of fatigue and failure to bounce back all the way. I am baffled when doctor's recommendations include major surgery for geriatric patients in this age bracket. It never seems to go as well as the expectations they lay out for everyone ahead of time.

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When she answers she "wants to get better," ask her what she might do at that moment or that day that would help her "get better." She might be more willing to do something positive if she felt she was making the choice.

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

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