What do I say to Mom about dying? She chose hospice to die at home, but seems to have forgotten that and now thinks she can get better?

Wow, that's the same thing in going through.

Hang in there girl!!
I know how hard it is to watch her slip away!
Try to take comfort in the fact that you're able to be with her in these last days. She's blessed to have family with her.
God bless!

Just try to go with the flow. My husband had cancer, he fought initially but right after Thanksgiving 2018 he asked for hospice. Even then he alternated between being resigned and saying things like "I just want to smoke one cigarrette, fgoshakes im dying" and telling his nurses "once i am stronger and I beat this..." December 7 he passed. As others have said, if she asks for a food, to stand, or to move to a chair, just help her as much as you can, make her comfortable, love her. If she is uncomfortable, ask the nurses to increase medication.

Thank you all for your advice. Mom has been in hospice since the end of January by her choice. My sister and I wanted her to go to rehab, but she adamantly refused, so home she came. In the beginning while her bones were healing (and she did have a partial hip replacement) she was lucid, able to manage pain, eating her usual pitiful amount of food and drinking well. She couldn't exercise at the time due to pain. She also suffers from liver and kidney problems.

She's gone from 100 to probably 80 (I'm just guessing, but she is literally skin and bones and looks like the pictures you see of a Holocaust victim. She is beyond exercising as she can barely lift her drinking cup to her lips. The nurse that comes weekly has confirmed she will not be improving. She can only eat jell-o without throwing up food. She's still drinking about 1 cup of liquid a day.

Sometimes she's lucid, other times she wants to know what time the tea party is. She frequently asks for help getting up. We've sat her upright on the edge of the bed and she immediately wants to lay back down. However, she still thinks she'll get better. Thanks to your advice, I just tell her she needs to rest and get better and then we'll try. She's only awake maybe 1-2 hours a day.

My sister and I just can't believe she's still hanging on as she doesn't really talk to us and moans constantly. It's not so much from pain because I do offer pain pills, but just a habit she's always had when she's sick. She is truly miserable so we just don't know why she's still here. We both feel so sorry for what she's going through. I've talked to her about dying and how she'll get to see her mother and all her loved ones again and have a new body with no pain. So I'll just keep her comfortable and wait as that's all we can do.

I do appreciate all the love and caring from everyone.

The OP just posted a reply to an old post on page one. It will be difficult to find and most people will probably miss it. So, I copied and pasted it here as a new post, not a reply to a post, so more people will see.

MsBelmont3
3 min ago
She lives with us and was pretty much independent. My husband and I left for a weekend trip and the first night we were gone, she fell getting up to use the bathroom. She laid there for about 12 hours until my sister's husband checked on her. She was barely 100 lbs when she fell and I'd be surprised if she even weighs 80 lbs now. She chose hospice and said she was ready to die. That was the end of Jan. She's always been a picky eater and would only eat about 1/4 cup of food a day when healthy so she didn't have any fat reserves to start with. She now is literally skin and bones and the nurse said there's no coming back from her current condition. She also has kidney and liver problems, so I believe that's contributing to her downfall as well. She always refused those protein drinks like Boost and Ensure. She's basically just hanging on, moaning in misery, and thinking she can get up and will get better. I try to keep her comfortable, but it's impossible when all you do is lie on your back. She can barely even turn on her side and hold onto the side handrail. I prop her on her side with pillows and she somehow manages to be on her back again within 10 minutes. It's amazing how the body fights so hard to stay alive. No food now for 4 weeks!

She either has dementia (it has many forms) or she is in denial. In any event it doesn’t matter, why spend her final days arguing with her

I would just go along with it, it makes life easier all round, if she wants to think she is getting better then that's OK so many old people now cant face death or even talk about death.
My 92 year old Mother can hardly walk, has mild dementia, keeps falling and cant get up and is getting weaker, but she refuses to talk about death, she thinks she is going to live forever, that the doctor will give her a pill and it will cure anything. Her neighbor is 97 and she refers to her as getting old now!!
She is the most miserable, self centered person I have ever known and nothing I do for her is ever enough and quite frankly the thought that doctors may find a pill to make her live forever terrifies me.
If we try to talk about anything she doesn't like she has this knack of just switching off and staring into space if she doesn't want to answer.

Try changing subject. My 93 yo mother w dementia thinks she can walk ..but hasn’t walked in 4 years. She is in wheelchair or hospital bed..at home. Before I discharged her from SNF 3 years ago, Nurse warned me don’t try to get her to walk as she cannot stand more than 3 seconds. Yesterday I saw her unbuckle her seatbelt on her wheelchair & declare she has to go to bathroom..,I put her on commode via stand assist lift...& then put her into bed ...she was too combative to leave in the wheelchair. She eventually calmed down & went to sleep. Now is not the time for her to fall & fracture &/or bleed & have to go to hospital with this Coronavirus, I told my mother I’m not calling an ambulance for you if you fall.. Hugs 🤗

Imho, it is not necessary that she has forgotten she is at EOL.

My Dad thought he was going to get better up until the end. The day before he died (at 94) he said "we need to get this disease out of me". My husbands Dad knew he was dying and wanted it to be over, his exact words "lets get this show on the road". My mother in law knew she was dying and before she lost consciousness, said in a quiet voice "it all went by so fast".
People approach death in their own way. It's up to us to be a comfort to them as best we can.
Maybe you could let your Mom try walking again, then when it's too much for her tell her that her body is telling her it needs rest right now, that's what I told my Dad. I made my Dad jello with mandarin oranges in it, he liked that and could eat it.
This is heartbreaking I know. I'm so sorry.

I kind of had the same situation why my mom died. She got sick somewhat suddenly and was in a lot of pain. Her doctor went to see her at her assisted living facility and while he didn't actually tell her she was dying, he talked to her about how much care she wanted. She was lucid and said she didn't want anything invasive or heroic. She just wanted pain control. As she got worse and was becoming more and more "out of touch" she appeared to be in considerable mental anguish and asked me when she was going to get better. I explained that none of us knew the answer, and only God knew. I don't know if your mom is religious but if she is, perhaps you can tell her it is up to God to determine if she gets better.

There is absolutely no reason to let  MsBelmont3's mother think that she  needs to just "suck it up" and be ready to die.  Doesn't sound like she has dementia.  Maybe she wants to be with her beloved daughter longer. MsBelmont3 sounds like a loving person. I believe that with her encouragement, her mother will want to eat more and will even be able to walk again with therapy.  Surely the mother can be given some pain medicine that will take the edge off her pain when she walks. When my grandmother who had dementia was in the nursing home and she asked where her long dead, divorced husband was, I told her "he has gone out to buy you a surprise antique dining room suite for your birthday". She was so thrilled. At that time (1989) he had been gone for almost 20 years.  I am still glad that I told her this little white lie because I can still see the smile on her face.  If a person says anything to discourage a loved one from having hope, it might be the loved one's last thought that the person saying it is tired of taking care of them. I wouldn't want that on my conscience, would you?

'If this was the last day of your life, my Friend, Tell me what do you think you would do, then?' The end of a life is tragic, the end of your life is devastating, we forget sometimes that whether it's a soldier, a young child, a pregnant woman, a young person who hasn't had a chance to live yet, a famous person, or our poor old mothers, that the end of life is never being able to change your mind, it final. She, your mother, has been alive longer than you, so think of what and who you would lose if today was the last day of your life? She has more to lose than you can imagine, she may want to go out with her boots on, or maybe she isn't ready, who can be ready to die? It's one thing to say, 'I'm done, I just want to die.' but when all those around you agree, that is not how those words you spoke were meant to be taken. She changed her mind, she wants another chance, that's a good thing, not something you have to readjust in her mind, why would you think differently? Are you going to explain to her that everyone excepted that you were going to die Mom, Say, " You promised you were going to die, now you want to live??? What will I tell everyone, that you just changed your mind, Mom?" Are you afraid if she lives you will look foolish to those around you? How about telling her this, " Mom, since you want to build up your energy, why don't we plan a day at the beach, or to the zoo, a picnic, a ride to the country in the car, lunch, maybe the family can come to the house and we can have a barbecue, or a party of sorts." Dying shouldn't be something we accept, it should take you by surprise and make you mad, it's the final interruption of life, and no one should want it. Sorry, but I'm an honest person, and straightforward to a fault, I guess. I just wish everyone would put the shoe on the other foot and think about how they would feel, if you were speaking to your own child, or someone who you loved and raised, or was raised with you. Your mother wants to get up and eat and relish life, what's left of it, what if you walked in front of a speeding car tomorrow? What if that's how this story pans out, maybe she wants that last moment with you to be special, before you go meet your maker. I hope both of you live long and healthy lives, despite what the nurse tells you, only God can decide when a person's life is over. Until that day, no one can speculate on how much time is left, or why a person changes their mind and wants to live some more. I truly wish you the best, and the short answer from me to you for this question is, I want you to enjoy this time you have with your mother. You won't get another chance.

Footnote: The first sentence of my reply was from a song by Genesis, performed in 1978, called Undertow, off their Album, "And Then There Were Three". You may want to listen to it, get a different perspective on the way people feel when faced with finality. Just a suggestion, with hope behind it for understanding.
Good wishes,
stoshsdaughter

I don't think you need to "make" her understand that she's going to die soon, unless something big changes. What will that accomplish? Try to get her to eat and drink and if it is safe, let her try to get up. Or at least do some exercises to build up her strength?

Why is it necessary that she "knows" she is going to die? If you and hospice have been honest with her then she has an inkling, and hospice doesn't cut corners, is usually honest with a patient. There may be times she chooses not to think that. Allow her to think as she likes, and just be there. Speak about what she wishes to speak about when she wishes to speak.

MsBelmont,
I just lost my mom almost 4 weeks ago. She was in the hospital for two weeks fighting infection and the doctors told us, my mom, 3 siblings in the room and 2 in a conference call to listen, that they could not get control of the infection. She made the decision to not be in pain anymore. If you have hospice coming in they can explain to your mom that she should not try to walk and risk a trip to the hospital and they can also explain to her that her condition will not improve. Hospice are trained to do this.

I asked my mom one night if she was afraid of dying and she told me that she thought she would be but she was not. We had a short talk about it and my sister also talked to her about it. I think it comforted.

The things she’s doing and saying sound to me like she may be transitioning. My mom quit eating about a week before she passed and was very aware up until a few hours before. She seemed to want wait for something. It was 2 am so I called my sister to come up. Good luck

With love and light
Sabrina

Many many people told my Mom she couldn’t, she wouldn’t and tried to get us to sign up for hospice. She is 88 and starting to walk some with a lot of assistance. She would rather not, but we push her and she is doing it.

She also fractured her pelvis and sacral, no broken hip.

I think you are lucky to have her telling you she wants to try. And I would give her the chance. She sounds like she is weak and needs to build up her strength and stamina. Try just letting her stand several times a day with assistance. That’s is what we started with. Get her off hospice so she can have therapy. If she is saying she wants to try, she doesn’t have to stay in hospice. Switch her to palliative care and they can order therapy for her.

is there an underlying terminal reason?

I also give my Mom these shakes from Hormel that have 520 calories in them. I have her eating all day because she has such a small appetite and getting food in her is a challenge. My Mom will gobble down a cookie though.

My Mom should not be here right now, but she is because I’m a strong advocate for her. If I listened to what “they” wanted she would have been dead over a year ago. I’m just sayin if she is motivated to try, I think she should have the chance IMO.

I would suggest talking to the hospice nurse about the situation. If she says she needs to eat, I would offer her a small portion of something she would enjoy. Is it possible for her to have some medication for pain relief prior to her request to stand? Maybe a just a stand pivot transfer to chair if the nurse feels it's okay. I'm wondering if her thinking she is going to get better is her version if denial. Denial is one of the five stages of death and dying. Her believing she us going to get better may be her way of self protection too. Your mom may stay in denial or eventually experience the other stages. Use the hospice staff as your resource on how to navigate the conversation. Take good care.

My husband (91) is under the care of hospice, which was his choice rather than standard medical care for congestive heart failure following a mild stroke. He has severe aortic stenosis which would require 2 risky surgical procedures in the hopes of repairing the heart, as well as a pleural effusion of one lung (lung fills with fluid making it impossible to function properly). His state of mind has been all over the map, from acting totally normal to the depths of despair. Recurring UTIs have caused dementia-like symptoms of agitation, anger, combativeness, etc. But the biggest issue we face is his severe depression which waxes and wanes depending on the time of day.

His depression affects his willingness to take the meds prescribed to alleviate the mood swings and agitation. I find it hard to be encouraging when he won't do anything to help himself--he's given up and has moments when he wants to die. I've tried to remain positive, knowing the outcome is not in my control, but it doesn't make the journey any easier. I agree with the others who have posted to keep your Mom's spirits up and let her feel like she's in control as much as possible. At least she's willing to try, which is half the battle.

Hospice means palliative care. Some people rally during hospice. If she wants to rally and try to get up, let her. Be positive and just love on her.

Really it is best not to say anything but little encouraging kindnesses which will help her feel better and you as well. If need be you can get her a hospital bed with bollards -- triangular-shaped pillows lining the outside perimeter of the small hospital bed which for my mother was shaped like a mummy-sleeping bag. The patient sleeps on her back and cannot roll out--
Now what I found is that because of beds like these-- it is harder to give sponge-baths and easier for the patient to develop a UTI which eventually is what kills the patient as it did with my mother. First she was taken off food, then water because she would aspirate-- breathe it down into her lungs and develop pneumonia. It took 3 days and she was gone after a brief last morning of agitation due to a very confused brain that could not understand one bit what was going on. This is a painful time for all involved. My prayers go with you and your mother.

When my father was "dying" he was so down. As a personal trainer and nutritionist, he always valued my opinions. I bought some one pound weights and right until he could no longer move, he "exercised". And you know what? The sense of control and positive outlook it provided him was immeasurable. Of course I knew it wasn't physiologically helping. But for him, to "go down fighting" let him do it his way. Reverse the roles for a minute and think about how you might feel. I'd want to do whatever I could to hang on. If I expressed that to my child and they prevented me from even trying, I can't imagine how depressed that would make me.

Don't focus on the future. Focus only on the present. If she wants to try to get up, let her. If she wants to eat something with more calories or nutrients, let her. If she talks about doing better, focus on whatever is achievable in the moment. She is living in the midst of decline. Celebrate the time she is with you: play the favorite songs, watch the favorite movies, eat the favorite foods, and allow her to tell stories of her favorite memories.

Since she is declining, you and your family and friends must decide on end of life matters, the after she is gone time. She is focused on living.

Your Mom has positive spunk and a will to survive... please do not throw cold water on it. My husband was in hospice last year... and turned around and is not longer on hospice, and is alive, doing better and at home with me while we journey through this dismal world crisis of Covid 19 and economic collapse. Your Mom's attitude is a diamond to treasure. Do your best to be your best for her, the family and yourself.

Very tough situation. Perhaps you can tell her she must completely heal those bones before getting up in her weakened condition risking more broken bones. Tell her to make the most of each day- I mean honestly, isn’t that all any of us can do? Remind her you love her, you’re proud of her courage and will be with her each step of the way. If her financial affairs and personal wishes aren’t in order that will need to happen ASAP, but otherwise, tell her it’s important she stays comfortable to heal. You have a team to help her be comfortable and make the most of each day. Why mention dying again?

Why burst her bubble? I would play along that she should eat to get her strength up so she could hopefully be able to get up with PT, whether that’s a reasonable belief or not. I didn’t notice how long she’s been in bed but I think they say 1day of PT for every three days of bedrest ( or vice versa , I can’t think now lol) so maybe tell her that and do some gentle Bed stretches with her?

If she says she needs to eat, then feed her. If she asks to get up, bring her back around to you need to eat to get better. There are a lot of people who get better while on hospice care. Maybe her mind is clearer now and she would like to try to live. I'm not sure I understand why 'she is not going to improve' - maybe other issues??? Whatever the reason, I certainly would NOT tell her - did you forget that you are supposed to die??? There has to be something I've missed in this question.

My heart goes out to you and your Mom at this difficult time. Is there a social worker with the hospice provider you can talk to? I would think they’ve encountered this situation before.
If this were my Mom, and all situations are different, I’d let her attempt whatever she wanted, of course protecting her from injury. At some point she’ll recognize her own frailty. These situations are never easy, we can only try make them “easier”.

You do not need to remind her that she's going to die. If she will try some in-bed exercises, you can encourage her to do those as "pre-walking" exercises. Let her eat or not eat as she wishes. Treat each day as it comes. When she talks about doing things "when she gets stronger," agree that that would be nice. Don't worry about whether it is likely or not.

These are days to live in the moment, one day at a time.

Say “I love you so dearly, and I will be with you whenever you need me to be here”.

Then converse about whatever she’d like.