Do you tell a dementia patient that they are going on hospice?

My dad was 90 when we learned his balance issues were due to a brain tumor that was likely going to grow and there would be nothing the doctor's could do to 'fix' him. He fought a good battle for 10 months; physical therapy, learning to walk with his walker (after he fell and broke his hip which led to finding that brain tumor), he kept his spirits high, he sweated bullets to regain his strength for my sake and for my mother's sake. For his sake, too, b/c he really wanted to walk again and not be wheelchair bound.

One day he started to slump over to the left in his wheelchair. My mother was screaming at him to sit up straight, for godsake, but he couldn't. I thought Stroke. I got him over to the ER and they did an MRI; the tumor had grown and that's why he was slumped over; it was killing him; seizures would be next. He could choose to fight on, or go onto hospice at that point, but the tumor was GOING to win. Dad was tired; exhausted; I saw it in his eyes. I was the one who had to tell him that there was nothing the doctor's could do for him at that point to stop the tumor from growing. No surgery or drugs; steroids were too dangerous at his age, which was 91 at the time. I told him he could fight or choose hospice care at his AL (he did not have dementia). He became very quiet. I told him that hospice was not a death sentence; that his friend Maria had hospice for 3 years!

He thanked me for all I'd done for him, for being such a good daughter and helping him for the years he & mom had been back in Colorado. He chose hospice. He went into his bed a few days later and never got back out. He passed away 19 days later. Dad was tired of putting up such a valiant fight against a tumor that was going to kill him, one way or another.

Your father has a very serious disease of pulmonary fibrosis. He too may be very tired and no longer wanting to put up a fight to extend a life that's boiled down to suffering with dementia and struggling to breathe. Honor that decision, if he chooses it, and help him accept the comfort care hospice will offer him.

We never want to lose those we love, but we also don't want to see them fight a losing battle and prolong their suffering.

Folks here's an update... apparently my "tough love" talked worked. Dad ate 3 full meals at 100%, did his shower mostly by himself and walked 92 feet one way, sat for a few minutes and 92 feet back the other way. The care staff is shocked but I know he's in there and that he can do it. Two things have changed. The hospital finally changed his meds to what I told them he needed to have day one (but what do I know?) and I gave him this tough love speech (ONLY because he was yelling and me and I lost my cool). Dad knows I do everything and anything for him. The only thing is, he can't come back to live here or to the assisted living place he was at for 3 whole weeks. He needs too much care.. but he also needs to care for himself!

Thank you for those who advised me on how to deflect as when he's in his "dementia mode", that's what I will do.. not try to argue or explain. However he was in his "take charge... I'm still the boss mode" where he was the dad and I'm the dutiful daughter. I knew he understood me and he knew I was telling him the truth.

But he isn't always rational enough for the truth and he certainly isn't capable of making a decision like hospice for himself. But when he is rational, I'd prefer to be honest about his prognosis and options.

Do you understand that although Medicare pays for hospice services Medicare does not pay for room and board which means you have to find a place for him to stay (whether he is on hospice or not.) I would not use hospice as a bargaining chip you are going to make the dementia patient feel unsafe and perhaps threaten by you. Only a doctor can approve hospice, not you. I think you need a social worker to explain and evaluate your father for appropriate residence determination and options.

Truly people Mary is doing the best she can!  I am one out of three siblings and the only one that helps my elderly parents.  And I still have a family of my own and a full time job.  Stop being so critical of Mary "yelling at her Dad".  My parents are 88 and 85.  Mom has dementia and Dad is her primary caretaker.  Not the best situation but I have done what I can to try and convince them to move into an assisted living center.  At the end of the day it is THEIR choice to live the way they want to.  I have engaged a home health service thru their doctor with THEIR permission.  I do all their shopping and go back and forth an hour away from where they live at least once or twice a week.  I do what I can and Mary is doing what she can.  At the end of the day it is up to the patient to do what THEY can.  My dad is Italian and very thick headed.  And yes, I have lost my cool with him many times.  He is 88 and my mom could get better care in an assisted living center.  My dad has physical issues and is ignoring his own issues to cater to my Mom, who is capable of caring for herself but won't.   Each family's story is different.  Mary I am thinking of you.  Every day I wonder when one of them will finally go to a hospital and then either pass away or go into hospice.  I'm in a stale mate right now.  I have POA but Dad is in charge.  It is frustrating as I'm on the brink of retirement and need to do my own planning.  I practice as much self care as I can and limit as much as possible the number of days I go out to their home.  They have a mobile home PACKED full of stuff, which I cannot help with as both of them have hoarding issues.  I do the best I can and communicate with their doctors and nurses weekly.  If I yell at Dad or lose my temper, I"M HUMAN!  I apologize and move on.  And  yes I pray.  Best wishes to you Mary.

Hospice is not a "place you go." It is the approach to patient care. You still either need to take care of your dad at home or place him in a facility, whether he is "on Hospice" or not. Hospice supervises medications and provides some medical equipment, but YOU or someone you hire does the actual care taking.
Hospice does not just "put someone in a bed and let them wait to die." Hospice will suggest things to make the patient more comfortable, but you, or someone, must do those things.
If he needs more hands-on care than you can manage, you need to hire help in the home or he needs to be in a facility.

From the limitations you presented, it sounds like hospice would be a good place for Dad. It's important for you to know that Hospice service is wonderful, kind and covers a full range of services, including physical therapy. It doesn't mean he's going to rot in a bed, sad and alone. He can get his meds, have a nurse visit, a social worker, and even a clergyman. He will be treated with compassion and feel valued.
The 2nd thing is that hospice just means he wants no heroic measures to keep him alive - the supposition is that he will die within 6 months. However, he will be evaluated every 3 months. So that means he can go on and off hospice for years.
If he is on Hospice, since the care is the same, why tell him if it will scare him? A person with dementia won't retain this info anyway.
I've been a caretaker who "lost it" several times. It can make you feel like a terrible person - but we know you are filled with love and concern. Just try to think about how you would feel out of the home you lived in as an independent person, and stuck in an institution for your remaining days. It's so natural for him to be depressed. So think about that and put him where you know he will get the most compassionate care. Best of luck and keep us posted!

My heart goes out to you. Being a daughter, we have the current situation of our LO’s decline to deal with, together with intimate knowledge of our parent’s personality quirks that have been there for years. Our own anger, frustration and exasperation are not primary emotions, but rather a defense mechanism against the enormity of our fear, grief, and just plain sadness and loss.

Obviously our LO’s abilities are not always black and white. Perhaps you see patterns in his behavior, like giving up, and it’s part of his bigger personality. But from what I’ve understood from the professional nurses on this forum is that his health will probably continue to decline.

Your feelings are familiar to me. Several times, in the course of my work (I am a clinical hypnotherapist) a family member has asked me to work with a sick parent or LO to give them the “will to live” or to “stop being so stubborn” or to “try harder.” Several times, the LO was so far gone they were not able to participate in the therapy, and if they did have any cognitive ability, they would confess to me that they were “just done living” and that their family didn’t understand.

I came to understand in those instances that it was the grief of the caregivers that needed the most support. A loved one’s decline is not usually a straight line with signs that appear suddenly announcing there is no hope.

Mary, you’ve gotten a lot of flack here about sounding angry or snarky, and although you’ve reported things are better with him, that the tough love worked, I’m concerned about you more than him. You might want to set up weekly appointments with someone who can support you. Childhood issues may also need to be healed. But the most important thing is to be able to interact with your dad with the deep loving connection the two of you share. It’s there, otherwise you wouldn’t be so triggered by him.

That way, the next time he ‘gives up’ whether it’s sooner or ten years down the road, you will be able to process and sit with the disappointment, sadness, and also love and compassion in a more vulnerable and fulfilling way.

To the others that read this, denial is the first stage of loss, and loss begins in these cases long before the person actually passes. Please see through Mary’s anger and seeming harshness for the pain that’s under it.

Lots of love to you.

Your father is 93, sick, with dementia, swallowing issues, immobilized in bed, unable to toilet or dress himself and you're telling him he has a choice of lying in bed, waiting to die or working his butt off to get better?

I can see why he 'shut up and stopped yelling at you'. The man is probably scared to death and needs a bit of compassion and understanding right now, in the midst of his confusion.

Dementia but not Alzheimer's is still dementia, and the level of confusion always waxes and wanes. That doesn't mean it isn't real.

This isn't really about you at all, but about your father and what's best for HIM now. Please speak to his doctor to determine the best course of action moving forward and try not to scare him to death with threats of hospice if he doesn't get his act together.

You probably mean well but the 'tough love' tactics sound like they're back firing. Try another approach.

Okay you lost your cool - that is to be expected. You are faced with making hard decisions for a parent that doesn’t understand their reality. Take a deep breath- you are only human! I have yelled at my mother too. Being in this position can be crazy making.

I don’t know the right answer to this one. There are some that believe the dementia patient has the right to know - I am not in that camp. My mother doesn’t understand her own situation at all and even though she has advanced dementia and is debilitated she thinks she is going back to work and driving. She thinks she is being persecuted and that we stole all her money. She thinks there are people in her room and bed that aren’t there.

When I first had to find a place for my mother after she landed for the third time in rehab following a hospitalization, I worked with the rehab staff and doctor to try and get their assessment of her level of care needs. When my mother kept insisting she go “home” and that she wanted her car and her “boyfriend” (imaginary), I tried to understand that as her wanting things to just go back to the way they were before she was sick and confused. But they are never going back. Rehab will only take them so far. Rehab may only help them with gaining enough strength to help with their basic needs. She would fight with me too.

I stopped explaining things to her and told her that the plan was for her to move closer to me and be in assisted living. She didn’t like that but I just said that was “the plan and there is no other option” and I wouldn’t support her going back to her apartment. Then I would either leave the room or say goodbye on the phone. Somewhere deep down I believe she understood. And I had to accept the role of being the bad guy.

As her health declined I opted for hospice for several reasons. They provided additional help, hospice would keep her from cycling in and out of the hospital for every little thing, they had a handle on comfort care, and they also helped pay for some of her personal care items and medications. It was NOT about giving up as a caregiver. It was about giving her some dignity and stopping the vicious hospital stays that just cost a fortune that would not stop her from aging! And I didn’t tell her I was placing her on hospice.

As my mother’s condition worsened, I had to move her to long term care. I didn’t tell her. Her dementia was at the point of being non-verbal and she was very weak. It was really the best decision I made. The facility staff really understands aging care and made some medication and other changes that have been beneficial. She has adjusted very well - it’s surprising.

Now - the long term care does wheel her in to monthly care plan meetings. She only becomes agitated and tries to grab papers from the staff so she can stop them from reading her information. I find this practice ridiculous. I participate by telephone and my participation only upsets my mother because she thinks I “caused” all her aging. I ask to be taken off speaker phone when I am asked a question. I have had to discuss some issues that I feel would be embarrassing to my mother and with our history (long story) she would never have wanted me to know her weaknesses.

My choices to not try to explain every decision I make is something I am comfortable with. Trying to reason with my mother was impossible when she was lucid and healthy. She made bad decisions all of her life. Dementia didn’t change that. My mother doesn’t recognize her decline or needs. This is
not an easy thing to deal with as a caregiver. These are hard and painful decisions to make. I wish it was different. But it’s not. Your father will continue to decline. If he is having difficulty swallowing, getting out of bed, bathing, toileting and dressing, rehab may only help a tiny percent.

Work with his doctor, find an aging care specialist to talk to, talk to the current nursing staff and maybe get some counseling. I did all of that and I still have dou

My mouth literally dropped open when I read this post. It's the mort heartless and tone deaf thing I've ever read.

If you can do one last thing for your father, get him moved to a nursing home where he'll be cared for, then sign over his care to someone else and walk away. No one deserves to be treated like that, especially an elderly, terrified person with dementia.

I'm just sickened.