How can I discuss end of life with an elderly person that doesn’t feel they are at end of life?

Sotired, this is HIS mother right?

Have you given some thought to returning to your home and life, and letting the responsibility for caregiving fall on your husband's shoulders?

Your MIL has the right of self-determination. She can pay for transport to appointments and caregivers.

Wait, she has a hospice nurse currently. How can she be on hospice with all these appointments?

First of all you should NEVER pay for the care of an elder; you will have your OWN costs in future and it is crucial you save for them. If the elder no longer has any fiances it is time for them to apply for medical assistance such as is available in their area to them. DO NOT DO THIS.
Secondly, I will preface this comment by saying I am all for Hospice and end of life decisions. I was a nurse. I know the torment of not accepting a decent end. It is literally a physical and mental slow torture of yourself and your family if you cannot recognize that we all live and we all die. BUT, as a nurse, I will ALSO tell you that this is in the hands of the person him or herself, not family, not well meaning friends. This is for the patient and the doctor to discuss together about Palliative care, Hospice and etc. Has the doctor attempted these discussions? Have YOU attempted these discussions??????? And does the elder STILL wish to fight on.
Because this is a PERSONAL decision belonging to each of us as an individual. It is not the decision of our family, friends, or even of our doctors as long as we are competent to make our own decisions. Please NEVER push someone to "accept" an end they do not wish to accept.
If you are personally struggling in care, then you may be facing YOUR OWN limitations, not that of the elder. So you may need now to consider long term facility care. Again, YOU don't pay for this. The elder, and the State if they are broke, pays for this. But THIS is the ONLY decision that is yours to make. I wish you the very best and am so sorry for all the pain now.

This is a very good response to my question!! He goes to work, comes home, eats and goes to bed! I have had numerous talks with him about this.
She has no money hence why we moved in to care for her. These drs appointments are at OUR expense! She has an eye appointment next month. Are we supposed to purchase her new glasses when she is dying?
She has to have some clue what is happening. She does give others little hints that she is, just not US!
How can I discuss these things with her without her losing it?
I WILL leave it to my husband if he doesn’t step up for sure especially now that I’m burned out! But what will that do to help her? Nothing. This is incredibly sad.

I don't quite understand why her accepting her decline will make it easier for you. Is it because she supposedly won't be going to doctor appointments any longer?

Hospice comes with a doctor. That's her doctor now, not all these other specialists. I agree with Alva -- you should not be paying for there doctors, and frankly, I think it's unethical for them to be seeing her knowing she's on hospice care. That's just a money grab in my opinion.

Simply tell her that all medical care goes through the hospice doctor from this point on. That's paid by Medicare, so you don't have to break your finances over this.

Keep some compassion there, though. It's got to be tough being one of the last ones of your generation to go, having seen the ends of so many others before you. Death is scary for a lot of people, and merely snapping your fingers doesn't make that fear go away.

My dad had the same diagnosis' and would say he is going to live to 140. I would wonder why would you want to live another 65 years being so terribly sick. Then I would say, none of us will get out of here alive. Death and taxes, the only 2 things we can count on. Then we would talk about being with Jesus in a young healthy state. He did come to terms shortly before he died, that's when I rejoiced, because being afraid makes me sad for someone getting ready to die.

I would quietly call and cancel the appointments. Remove any reminder of them and give vague answers if she asks.

Hospice will cancel her if she starts going to doctors, Medicare won't pay for both. Does she know she will lose her in home help if she pursues treatment?

Does she have a pastor or believe? Maybe getting the hospice chaplain to visit could help her come to terms with what she is facing.

I wouldn't try to talk to her about EOL. She's not ready and there is really nothing to gain for you or her by talking about it. Learning to ignore the chatter that she is creating will help you.

My dad said to put him in the back of his truck and haul him to my house. My mom has said just flush her ashes down the toilet. Obviously, I couldn't do either one, so I am doing what I think they would like. My dad got scattered on the farm that held his heart and my mom will probably be scattered in a casino garden, because that's what holds her heart.

If she is on Hospice there are no more doctor visits. You are usually discharged if you go to a doctor. I am surprised this hospice is allowing it. Even Medicare. Or is that the problem, Medicare will not pay for the doctor visits because she is on Hospice. If so, then u don't either.

I also don't understand this "We went down the government assisted route with her husband and it isn’t that easy or cheap."

It cost nothing to fill out an application for Medicaid. I sat with the caseworker, he did everything on the computer and then gave me a list of things I needed to do. I did get a lawyer when Moms house was going to cause a problem. If she didn't have the house, I wouldn't have had a problem. This was LTC. Getting her health insurance is the same thing. You apply, give them info needed and get a letter if Okd or not. I did this for my disabled nephew.

I would call her doctors. Explain she is on hospice now as per recommendation of another doctor. Ask if there is a way that he can tell her there is no need for further appts. That she is now on once a year. Then somehow put in her records, that no more appts are allowed because hospice is now involved.

I think your husband is putting his head in the sand. Its not fair to you. He needs to deal with his Moms death. He needs to tell her no more doctor visits because the doctors can no longer help her.

Under Medicaid, she is absolutely still allowed to see her doctors while is hospice. The hospice company can not "disallow it". Your complaint has nothing to do with your in-law and how she may be feeling, and everything to do with how it is impacting you, and how you are burned out. Try seeing it from her point of view. This is her life we are talking about.

I know this is hard but you also have to look at it from this point "WHAT IF YOU WEREN'T THERE" she would be in a place where they would take care of her. In my state of Iowa if you are in a hospital you need additional help you go to a nursing home where you get that help then they learn that there is no one to take care of you at home or you don't have a home they will put you there until you pass. Medicaid steps in to pay for your place in a nursing home.

Doesn't she have Medicare or Social Security? Do you know if she gets either one of these? Social Security pays you a monthly income if she worked at anytime doing her life or if her husband worked she can get his social security which ever is greater. So if she does get this it will go for any of her needs not you paying for it at all.

I would calmly sit my MIL down and tell her we went to these doctors don't you remember this. I wouldn't pay for anymore appts or glasses medicaid will come in and pay for glasses I know this from experience my BIL is on it they paid for some very nice ones where I didn't have to pay for anything because I am his representative payee for his social security.

Prayers that you find a solution and that your husband steps up to help you in this he should be the one talking to his mother telling her to let hospice come in and help us help you.

Your question of "why" most likely can't be explained because none of us has yet to experience the end of life cycle. Years ago, an old guy passed at 85. I mentioned to a friend who is also a pastors that he was 85 and lived it out. He said well that's easy for us to say since we weren't the ones dying. Its different for everyone. My mother and brother did not want to die. Mom was 90 and brother was 78. My grandmother, my ex's grandmother actually but I was closer than my ex was, told me after my mother passed, "I'm older than your mother, I don't understand why the Lord hasn't called me home". She was ready and looking forward to the adventure. She passed about six months later. We can't "put ourselves in their place", its impossible to do and end of life mental simulation. I wonder if you could convince her if a NH is actually a hospital wing. a hospice cared patient can be in a NH will still in the program.

Are you living in her house … use her
$$$ to take care of her and get help

you may be left with less but you wouldn’t be so cranky and burned out and she’s entitled to make decisions on her life …

I can see both sides here....she is not your mom so you don't have that attachment to her and let's face it, caregiving is hard and most of us would prefer not to have to do it...especially at the expense of our own mental and physical health. On the other hand, if I were her and I was told I was dying, I don't know how I would handle it...would I accept it and just lay down and die or would I keep fighting for every minute I could get...I don't know.

Where is your husband in all of this? After all, it is his mother.

Hospice patients can see MDs for care unrelated to their hospice qualifying diagnosis. For example, if the qualifying diagnosis is heart failure - then no cardiology consults to see what more can be done. But endocrinologist for diabetes is permitted - though not clinically useful.
Strategies - Contacting those specialists and explaining that she is now on hospice and that she is homebound (cannot leave home without significant assistance), sleeps 18 hours/day, eats less than 2 full meals daily, and is exhausted by effort of seeing MD in office. Let them know that unless some urgent issue comes up, you would like to discontinue regular checkups but will call if an appt is needed.
Then tell your MIL that the appt. was rescheduled by the MD office, MD on vacation, car had a flat tire yesterday and you didn't think you could get here there this morning..whatever 'little fibs' you need to delay the outing. Reduce any signs that might remind her of what day it is, or names of other MDs, etc.
"Out of sight" more easily becomes "out of mind. "
If she gets really agitated about MD appt, go make a call and tell her you left a message at office...and get focus on something else.
On some level she understands what hospice means, and knows that her body and mind are failing. Struggling to maintain the illusion of improvement by continuing to see specialist MDs (who probably are not making any changes at all when she visits) is a way of holding onto hope.
Helping her let go of this hope can make space to have beauty and hope in some other way at home. Hospice social worker and spiritual care person can help with some life review which focuses on positive experiences.
You need a break. Can you and hubby arrange that you will have 24 hours once a week (so you can go home and stay there overnight), and a couple of half days off? If he can't manage her all by himself, then it is time to hire help, and hospice can suggest local agencies. Use your MILs funds to pay for it. And just tell her it has to be done. she will argue - but if you get exhausted and ill caring for her now...what will happen next?
Good luck. This is a very hard job and you are doing the best you can.

Maybe she wants to hold on until the Holidays are over.

This may sound harsh to you, but this is her life, as long as she has her mind, and wants to fight to live, let her. Death is scary to some; I see no reason to tell her to stop wanting to live. Each day is precious to those that are elderly with little time left to live. They need to be shown love, and respect. Far too often people want to rush the death of a family member, sorry but this seems selfish. If you can't handle the care, I do know hospice has nurses, nurse aides that come in and take care of the patient. Even provide ladies that will come and relieve you so you can go shopping to just get away. They provide ministers if the person wants to speak with one. Not sure of all beliefs. Search your heart, how would you feel if you were dying, while this changes when it is your own death. Now, one thing she should not want is new glasses. Saying all this with respect for both you and her.

During the last year of his life my mother noticed that my father was going downhill physically. She warned us all. When I would visit weekly, he seemed his old self except much thinner. But mom, who was living and caring for him, apparently noticed subtle signs. He did indeed die of a massive heart attack 2 weeks before his birthday in the middle of the night while going to the bathroom.

I am sorry you are struggling with your MIL. Based on other comments and replies, it appears you are living in her home with her, and she is considered to be in in-home hospice.

My dear, it is so hard for most people to admit they are dying. I believe the whole point of religions is to help people deal with their death someday. Some people have a hard time accepting it. Other peope know they are dying and get frustrated because it is taking so long to die (my FIL, who was very grumpy about how long it took him to die).

I know you are worn out. When my mother had a hip replacement, I stayed with her a whole month on 24/7 care. She would not follow the care rules layed out upon her release nor let me do the things I was shown how to do with and for her. I love my mom dearly but during that month she drove me nuts. (Very embarassing for me.)

It is now years later and she is still alive. It is much easier to visit her in her home than live 24/7 with her.

It sounds like since your MIL owns her own home and perhaps has other assets, that is the reason you have been unable to move her to a full hospice facilty.

You cannot force someone to come to terms with end of life. This is their choice. So you need assitance of an outside person to help you care for her so you are not so tired and worn out yourself. My cousin who died of a extremely rare brain tumor had someone like that, paid for by her medical insurance, to help her elderly mother care for her in home. It was not easy because the brain tumor both paralyzed her body and altered her personality so that she was raging angry at the whole world all the time. So they in home carer made if easier for her elderly mother (my aunt).

Please check to see if her medical insurance or she herself can afford such assistance for all or part of the day. It is cheaper the a hospice or elderly care home cost but still not free. It will take the stress off you.

My brother in law, whose father had a non-Alzheimers form of dementia and lived in another state, was able to get one of these carers too for his father. The woman hired cared for the father the last two or three years of his life. The father was happy with the arrangement as was my BIL and my sister and BIL's sister.

It could be a life saver for you because you are obviously extremely stressed yourself which is not good for your health.

(I used to have a lot of relatives. Many have died. Many made it into their 90s and two lived to 100.)

My FIL fought death until the absolute last second. He was actively dying in the hospital, we were all there and the doc gave him a large dose of morphine. That allowed him to stop struggling to breathe and let him 'let go'.

I truly think that his kids thought he would never die. He fought it tooth and nail. I know he had some issues he hadn't dealt with--and he died with these on his conscience.

And 3 months after he died, I had to go pick up his 'new dentures' that cost $800. Totally useless.

He never once, to my knowldege, made a comment about dying....I never brought it up ( not my dad, not my responsibility). I just felt bad, like he left some stuff undone.

This woman is old, scared to death and in denial and she has dementia. Too much for her to face. YOU have to stop tending to her as you have done as you are slowly destroying yourself and those around it. She is NOT going to give in and suddenly see the light. So now you have to set the new rules and enforce them - it is beyond her to do this. If you can't get caretakers to relieve her, just find a way to place her and let them take over. Please don't wait - save yourself while you can.

sotired2022: You should NEVER pay for a LO's care. You are going to need the money that you spent on your MIL's care for your own elder years.

I wouldn't insist that she 'accept' she is dying. That and you being tired are separate issues, I think. It's time to get you some help as far as going back and forth to the bathroom. Does she have the finances to pay for about 8 hrs a day and let someone else handle the heavy work? If not, can you locate a porta pot closer to her recliner so all she has to do is stand and sit? If there are other siblings to your husband, tell them you need regular scheduled help. -- I will add, if you moved in to mom's home, some of her kids MAY think you're getting a house later in in exchange for the labor you're doing now....don't be surprised.

As for the dr appts, what are they for? If you have any home health services like visiting nurse - the agencies usually have a doctor to do home visits, podiatrists to keep the toe nails trimmed, etc. Or let the hospice people come in and let her know they are the medical team now. If she is going to drs to get treatments and medicines, that probably won't work with hospice.

Who is taking her to these doctor appointments? You? Solution is - cancel the appointments. Call and say she is on hospice care. Problem solved. Theraputic fib - she only has one doctor now. She doesn't have to accept the reality of the her situation. That's OK. It will be what it is regardless of whether she admits it or not.

Why are her appointments at your expense? Doesn't she have medicare and supplemental insurance?

I think 3 months is a pretty long time for you to be providing so much care for her. You're struggling. Maybe it's time to get some help? Does she have ANY $? If so, hire care with her money. Or maybe it's time for a nursing home where she can get 24/7 care for the rest of her life. Does hospice provide any care? Aides? See if they can do more than they are or can suggest how to give you a break?

As long as your MIL or mother is mentally competent, she can make decisions for herself. The problem is that her decisions don't just impact her - they impact you and your family as well. It seems you and your spouse need to have a serious heart to heart talk with her about your concerns - how she is burning you out. It might be best to have this meeting with a health care professional so you can outline options she can take.

Talk about your end of life wishes as a conversation opener.

”On board” with what, the fact that the end of her life is near or living what time is left the way everyone expects? Sometimes we get tunnel vision when we are so invested in making our loved one comfortable and miss what they want. My mother has all but one of the maladies you list for your MIL, just not as advanced yet so I’m guessing your MIL has been seeing each of these specialists for quite some time. These doctors and the appointments often become their contact with the outside world, their social circle if you will and certainly the people they know and trust. Your MIL may very well being seeing each of these important people in her life for the last time and she knows it. She may just choose to live life as normally as possible, this is her normal, for as long as she can and she may be doing both.

The fact that you and your husband uprooted your lives to move in with her indicates to me that you care very much about her and want to make things as easy as you can for her but that doesn’t mean it should all fall on you or lives should be on complete hold indefinitely. I’m not sure what initiated the move exactly or what Hospice told you when they evaluated and accepted her but qualifying for Hospice doesn’t always mean the patient will pass in a matter of weeks, some patients are on Hospice for a year or more and some go on and off multiple times. It doesn’t really sound like your MIL is fighting her passing, she accepted Hospice and isn’t fighting her body’s needs for rest or her need for help. It is very possible though that she isn’t going to pass quickly or soon and you do t need to shoulder it all until that happens nor should you. Part of the process is going to be MIL accepting more services and you finding a balance between your hands on help and your life.

How was MIL managing before you moved in? Who was taking her to doctors appointments? When you say “at our expense” do you mean physical, emotional expense or financial expense? Does she qualify for more assistance? Even if it’s someone to care for her 8-12 hrs a day and you can alternate that between day and night shifts with you and hubby getting nights at home together and maybe splitting the night shifts you take with her. Maybe it’s time to talk to Hospice about an in facility placement if they have a residential Hospice facility. How big apart of these decisions is MIL able to be and where does she stand? As much as you want to help and care for her through the end I’m sure you don’t want to lessen that feeling of love and compassion for her or resent the things you gave up or things she wouldn’t when you remember her so take the steps you need to to prevent that. You will be doing right by her doing the things you need to to preserve her memory and your family life. Sacrificing is fine but love and caring doesn’t mean sacrificing everything for someone else, in fact sometimes it means making sure you don’t.

Try to choose the things that truly uplift her spirits and self worth right now which may include these doctors appointments as well not wearing your spirits down to nothing. This includes your husband though you may have to help navigate for him. Providing the care she needs doesn’t mean you have to be the only ones cleaning up after her or wheeling her to the bathroom, in fact helping her stay as self sufficient as possible and providing professionals to do the rest might even be better for her and is still taking care of her.

If she wants to go to all these doctor appointments, give her the contact information for local medical transportation. I am not sure she needs to "accept" that she is dying in order to have to deal with the reality of difficult transportation issues.

the local EMT had a transport service and they took my mother to dr appt.
Better suited anyway to lift her and help her.
her dr ordered home health nurses to visit an hour a day. And we called Home Instead and they were ready to come for 4 hour shifts.
There are options. Ask her dr.

First of all, maybe she’s scared and not “ ready to accept death yet”. She’s probably in denial and grieving. None of us know how we would handle our coming demise unless we were REALLY faced with it. You definitely sound burnt out and I totally understand being my husbands caregiver. It’s time to pass the torch to someone else so you can have a break. If she’s on hospice, she can not keep going to specialists and tests. She will no longer qualify for hospice benefits if she does. Cancel the appointments and have her primary care doc sit down with her and tell her the truth. If it comes from a doctor she may accept it better. It’s not your JOB to talk about the end of life care with her. Also the hospice nurse can talk to her . That is their expertise. Good luck and hugs to all of you. This is not fun💜

Go home.

I goggled at your question when I saw it in the news feed. If your MIL doesn't want to address her end of life situation, nobody should be rubbing her nose in it and I couldn't think what you were thinking. But actually the real issue is a different one and it's about your level of responsibility for providing hands on care (if you're also funding this futile exercise that's a different issue again but a trickier one ethically and to be discussed with your husband).

You are NOT responsible for providing hands-on care in your MIL's home and if you have reached your limit you should go home. Who appointed you to this role, please?

I am dealing with a very similar situation, it is just another family member that will not give up. a-Fib... very similar except also kidney failure. I can relate so very much to just wanting their pain and suffering to end. It is hell to watch the ones we love so much in this kind of state and also have our lives crumbling before our eyes because we cannot take care of ourselves if we are fully caring for another person. It would be different if there were a HOPE of them recovering... but when it has come to this point it just feels like prolonged misery for every single individual involved. I do not have the answers, and I am sorry, I wish I did. I just wanted to tell you, you are NOT alone. <3