How to tell LO they have two choices: accept life as it is or give up and die?

I'm a deeply saddened that we caregivers miss the fact that our loved one's brains are changing. They are not immune to psychiatric illnesses such as depression and anxiety, and given the changes of their physical health, independence, and often, social network, it is reasonable to think depression might strike the elderly at much higher rates than we acknowledge.

Likewise, caregiving is hard work, intense time commitment, and severely socially isolating. Caregivers must not only be aware of depression in their loved ones, but also themselves. The idea that there is ever only two choices in life is almost a diagnostic criteria for depression in the author/caregiver.

My expressed hope is that both the caregiver and the loved one can receive a comprehensive evaluation to ensure their physical and mental health is cared for as the loved one ages and life, inevitably, changes.

look after you, and tell her her situation or being dead or alive is in her hands, but you cannot do anymore and her life is not going to improve if she is determined to keep thinking it is bad and refusing help. Don't support this behaviour - just tell her the choice is hers and go and get yourself a coffee or whatever. No matter what we do our parents have to accept the fact the life is not as good as it was when they were younger and either be positive about what she can do or choose to stop all treatment and not be here - the choice is hers, not for you to have to stress over

I think you need to take a step back and hands off approach. You’ve been her advocate, and have done a great job, but it seems as though you’re trying to maintain control in an uncontrollable situation.

I’m not suggesting that you cease caring - but perhaps you need to disconnect with the fight to keep her alive if it’s a losing battle.

Like, ask her if she wants to eat breakfast. If she will, great! If not, and it’s ongoing, perhaps she needs to have a port put in to be tube fed.

It also sounds as though she has another need not being met - she’s depressed. Perhaps speaking to a religious person, or a psychologist will help her process her feelings. If you can, sit in on the meetings to perhaps better understand her as well. And then just accept her for who she is right now, and not who she used to be.

Also, you also need to look after yourself, and one way or another make peace with this experience. Sometimes surrendering control can be cathartic and freeing.

Best of luck.

Get help for you as to "what to say". There is anger, tired of care, and you realize it is the end of life for your mother. She has stated her desire and changed...but it is still there because she may have unfinished business with you or God. If her Dr. refers her to Hospice the Psychologist and Chaplain can help her as well as yourself.

Sometimes it gets to the point where you do just have to say, "Enough already, just give up and die". Many times a bit of tough love like this is exactly what a person needs.
Your mother is elderly and does have health conditions. That is a fact.
Complaining can be a form of entertainment for her. She does it to get attention. Pay her none.
My mother is like this as well. She is elderly and does have some mobility issues (still walking though) and some health issues but always refuses any suggestions to help her. Most of her issues are related to old age. She is also a hypochondriac who has been actively "dying" for the last 40 years or so.
When she starts up with the complaining about her health problems and wants a mortality and morbidity conference with me about it, I completely ignore her. What usually follows is a performance about how she wants to die and no one cares about her. Sometimes I literally pull out my violin. When that fails to get her the entertainment and attention she wants, she will then try to instigate some kind of fight with me. I ignore that as well.
The only person that can pull someone out of this kind of misery is themselves. Sure, you can help them greatly but only if they're willing to help themselves. If they're not, then there's nothing you can do. As for elderly who are this way, there has to be a pattern of behavior established with them. That pattern is when the complaining and morbidity start up they get no attention whatsoever. This sounds a bit harsh, but I've been an elderly caregiver for years and this approach has always worked for me and it helps both the elder and the caregiver.

You don't have to be any where near terminally ill in my state to have a POLST. Mine is posted on the fridge on bright green paper do it won't be missed by emergency responders if that time should occur. Talk directly to the doctor about it, just don't take someone else's opinion on something like this.

Learn2Cope,
Only two choices?
Not true.
Not true at all.

Learn2Cope: Imho, perhaps she needs to see her physician or specialist.

I understand completely how your mother feels - sounds like me. I have the mind and motivations of someone 30 and at nearly 88, I do the impossible (even though I can't walk). I still work two jobs (51 years and 15 as a Power of Attorney), have tons of hobbies, handle 100% of my affairs. I do the impossible ignoring pain, time, frustration to keep my self-respect which is based on me being able to do what normal people do. The word can't is not allowed in my dictionary if I want a life of even the simplest level. But I get so angry and frustrated when I am constantly impacted by all kinds of problems, some quite major, that should not happen but do and I just want to give up - but I have my kitty so I can't. There is nothing you can do except listen - understand and be kind. Don't try to convince her this way or that way - won't help her. Try to understand - she is not normal, she has severe problems and it is impacting her life and making her miserable and yet she has what most humans want - the will to live. Just be quiet and listen and love her. It will end soon enough

Hi--You asked '' I would like to talk to some experts in this field. Where to start? With her primary care physician? Local hospice? Any online resources?''
First, read up on the difference between palliative care and hospice:

https://www.nia.nih.gov/health/what-are-palliative-care-and-hospice-care

https://www.cms.gov/Medicare-Medicaid-Coordination/Fraud-Prevention/Medicaid-Integrity-Education/Downloads/infograph-PalliativeCare-[June-2015].pdf

https://connect.mayoclinic.org/blog/take-charge-healthy-aging/newsfeed-post/paliative-care-vs-hospice-care-whats-the-difference/

Then I would talk to her PCP, telling them that with your mother's conflicting wishes you feel like it might be beneficial for you and your mom to talk with palliative care and determine what your mom feels would be a good quality of life for her in her current state of health. They will help and support you both.

You're having a common experience. The emotions, struggle, and angst is just overwhelming for those people with cognitive decline. It's a mix of misery and memory loss until later stages. Their brain cells are dying and they can't make decisions, cope with change, or understand things as they once did.
Compassionate listening and loving is really hard when we are stressed, and emotionally charged with that cortisol coursing through us.
Try to take a deep breath, and just listen, touch or hold hands gently, tell them you love them, understand how hard this life is.
Pray for God's wisdom and comfort.
I am currently struggling with this very thing. Yesterday I yelled at my sweet mom. Then we cried and cried... It's all so so difficult and painful. I am praying for you ..

First, I want to caution you about a feeding tube. There might be legal ramifications in your state; for example, you might not be able to stop or remove the feeding tube, artificially prolonging her life/death.
Second, my mother was like this, too, calling me "I just want to die." In and out of hospitals, this crisis or that one. I am 1K miles away. She would call, I would jump on a plane. After years of this, I realized I can't FIX this. She is now in AL, and is well cared for. But my personal revelation was when I understood that I can't FIX this. I am not the FIXER. It is my responsibility to make sure she is well cared for, safe, etc. In AL, she is now on hospice and is receiving more attention and provisions than the AL can supply, and more medical attention than her HMO is willing to give her. Hospice has their own doctors, and even supply some medicines. (Ask hospice about feeding tubes.) I once tried to cancel hospice services because I misunderstood what their mission is, but then agreed to keep them, and I'm so glad I did! They have also given me peace of mind knowing they are there. I encourage you to find a recommended hospice service in your area and at least interview them. Your mother more than qualifies for it and it's paid through Medicare.
I wish you, my fellow caregiver, peace.

I found with my father that he really didn't want me to totally fix his problem because he would have no excuse to call. What he wanted was for me to be perpetually fussing over things in his life so he would have my attention. They forget that you have an entire other life (your own) that needs attention too. I learned that after I fixed something once or twice and he was still unhappy...I'd drop it back in his lap. Not satisfied with how I handled things? Well now you are free to handle it your own way...but understand, you have to handle it, not me.

Wait for a good day, a dat she is not in a lot of pain, ect.

Be upfront and tell her everything the Dr says about her.

Let her know her Choices, bur make sure mom knows that on Hospice Care, no more treatments, it is Comfort Care Only! They do their best to keep you comfortable with meds until you die.

Or she can chose to keep on with treatments, but keep in mind, option #2 is not you deciding which treatments your mom chooses to do or not do, it's your mom's life, not yours and she should have say on what is dine to it, rather it'a different then what you think she should do.

Make sure mom has a POA (Power Of Attorney) paper signed, allowing someone to make those decisions, Only if she's not mentally or physically able to.

POA needs to be someone to acr in mom's best interest in doing what they know mom would want, not what POA wants.

Prayers

MJ1929 hits all the points and I agree, including NO feeding tube. Your obviously love your Mom and want to do what's best for her. She is scared and fearful. Please look into hospice care. Let us know your Mom's and your decision.

I couldn't bring myself to tell someone to give up, as long as they have a will to live. And you don't need to say it if they have given up. Just accept that she's going through a difficult time. Try not to fight with her. Keep telling her that you're there for her and try to support her wishes. Does she have a living will with her medical directives? Has she expressed her end of life wishes? Make sure you understand if she wants to have heroic measures to stay alive (feeding tubes, ventilators, etc). My mother, who has dementia, wasn't happy every time she was taken to the hospital after a fall. She didn't understand what was happening and tore off the oxygen tubes, etc. I have medical POA for her and asked for "no hospitalization" except if it is an extreme situation. She's actually been more stabile and happier being left on her own without trying to "fix" things.

Sounds exactly like my situation. I’m wondering if all of this is just to be expected and there really isn’t a perfect solution. After dealing with both my parents ages 88 and 89, I’ve concluded “going out”, dying is very complicated, sad and painful for everyone involved. Sorry, no good answer here, just compassion and understanding from me about your situation. I constantly turn to God for support and guidance.

You are dealing with her fears and maybe some passive aggressive behavior. It might be worth have a series of frank discussions about what she wants her life experience to be at this point. You may not be able to make is happen, but you will have a reference point.

I understand that you have been through a lot.

Can you take a day or two to step back and rest? Take a bit of time for yourself to process everything? You must be exhausted.

And there is so much pressure (on you) in helping her make actual life and death decisions. At some point she will not keep surviving and you should be proud of all that you’ve done to extend her life. I write this because you never should feel guilty when there is a point (that although you are doing your best) it becomes impossible under all circumstances for her to survive.

And it is not surprising that she keeps “changing her mind” about end of life wishes. Without the context of being in that crisis, none of us know what we would really pick until it happens. And we might change our mind too.

I understand you have whiplash from this terrifying rollercoaster. I’m sorry.

Thinking of you.

I agree with MJ1929. She's likely exhausted but scared of the alternative.
You can help her by getting her a palliative care consult, who could determine if she really wants that feeding tube, and her wishes moving forward. If she decides she doesn't want the care, then they can refer/transisiton her to hospice. Either way, you have a person trained to help your loved one decide what their end of life decisions are now, rather than it being you second guessing yourself. Her physician shouldn't be reluctant to do the consult.

I finally told my mom “if you really want to die lets stop all meds!! That is why you are alive..nonstop doctor visits and the pills they gave you”. “You decide”. I learned from my counselor my job is NOT to try to make her happy. That is impossible. I chose a lovely assisted living situation for her. Attention all day long. When I hear complaints I repeat..”we can call your doctor and stop the meds…your choice”. They just want us to feel sorry for their old age..I remind my mom I am 70 and getting old myself! She is 88yr old. Good Luck! Tough job we have..

Find guidance at endoflifewa.org.

What health problems does she have? You list anxiety, arthritis, depression, and vision problems, all super common and treatable ailments, but stated below they want to put in a feeding tube?

I don' think she'd even qualify for hospice with just what you listed.

I took my mother at her word, and found her a hospice, and as difficult as that week was, it was the best decision I ever made. She died in peace, and without pain, and it was a place where her young grandchildren felt comfortable being and spending time with her in her last days. While I am struggling with caring for my Dad now I know exactly what he wants when this time comes because he told me afterwards it was exactly what we did for Mom.
He asked one of the hospice nurses, in a raw moment as we were moving here there, "how do you do this? how do you watch people die?"
And the nurse said, "after a career of telling patients no, you can't have that, no you can't eat that, even if they were dying, now I get to give my patients whatever they want. I get to make them happy."

I agree with Daughterof1930's suggestion of meds for mood/depression is a good next step. I'm hoping she's amenable to that suggestion. I don't think it'd be wrong to diplomatically point out to her that dealing with her depression will help the both of you. Sell it as "what do you have to lose trying it?" If it doesn't work, she can stop taking the meds, if it works, yay! Giving her as much info about it and what to expect (side-effects, having to be patient with trying differing meds and dosages, etc). It's as much for her quality of life as any other therapy or meds she would take. Blessings! Wishing you success in helping both of you!

Stop trying to fix everything. If you're fighting with doctors, pharmacists, and insurance companies to fix what cannot be fixed.

Make one more call -- to her doctor for a reference for hospice. Life gets much calmer for everyone when everyone stops trying to make the patient get "better." Hospice focuses on improving quality of life, not quantity.

Mom is tired, feels lousy, and is over it all. She's also scared of the other option. That's all OK, so that's when hospice helps her live (and die) as her body wants to while controlling pain. No more trips to the doctor or the hospital -- the hospice nurses come to her.

Also, getting off a lot of those meds can make a world of difference in Mom's comfort. Hospice won't take her off everything, but sometimes there are just too many meds getting in each other's way. My mother had terrible edema in her legs and was on diuretics for seven years with little effect except endless trips to the bathroom. We took her off them, and her legs returned to normal within days. I know that had she known, my mother, a former model, would have been thrilled to die with slim ankles once again. :-)

We also discontinued her BP meds with no effect. That told us that all those meds that were keeping her going really weren't doing anything anyway. She died about three weeks after we discontinued her meds, but she'd been on hospice for seven months. We didn't withdraw the meds until it was clear they weren't working at all and Mom was merely existing. She had Covid while on hospice -- and recovered -- but just having made the decision that we weren't going to the hospital anymore somehow made it easier to deal with.

Hospice is an absolute godsend, and you should look into it.

I don’t see where there is a decision to be made. Your mother will pass exactly when she’s supposed to, and no deciding to live or die is going to change that. It seems cruel to discuss with her. Of course she’s sad, she’s watching her abilities and life slipping away. Perhaps a med for anxiety and depression would be a kindness for her. Let her choose without cajoling or discussion which meds and treatments she wants, and it’s okay if that changes with the wind. I wish you both peace