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

He may have better days,but he"s not going to get better and it's not his fault, or yours.In the beginning with my mom, I cryed alot and couldn't understand why she did the things she did,it drove me crazy. This is not the person who took care of me and gave me unconditional love, Well now it is my turn to give back.We celebrate the "good" days and try to be patient and loving on all the other days. It can be taxing and darn right hard!, but can be done.I find if i think about,What if this was me?how would i want to be treated? I can find the compassion and keep on keeping on. Be kind to your self and you'll make it.

Sounds like he needs to be in Long term Care aka, nursing home. Chances are he is not going to get much better. Dementia affects more than the brain...but also balance, the ability to be motivated by one's self etc. My dad was also in rehab and assisted living would not let him come back so LTC was next.
I can understand your blurting out and regretting the hospice remark as we all get fed up with their inability to understand. But you need a care conference at this rehab with all the persons involved with his care. It is then that recommendations are made as to his next step in life. Such as progress made, where he should live etc. Have you asked for a care conference yet?
Hospice is decided upon by the person's conditions. Laying in bed is not enough to qualify. Medicare is quite exact and strict on what qualifies. And hospice can take place in the nursing home, not a separate facility.
first step; care conference
second step; deciding where he moves to
third step; hospice evaluation if his doctor thinks that is an appropriate referral.
I know what it’s like to be yelled at and blamed for their condition. And I'm sorry. Know that this is pretty normal.

I work in dementia and the best thing you can do is tell him where he is going and try to explain it. I have had so many residents that are so confused as to why they are at the home and their families don’t tell them which just makes them more upset. I’m not sure what it is like in what country you are in, but here in Australia, our homes still have as much good care as anywhere else whether or not the person can chew properly etc or not. We take care of every person with as much care as we can and treat them like humans, I would be looking into as much homes as you can for him if that is an option. I do believe that if somebody with dementia does deserve the right to know, however you definitely have to get the right timing to tell them. If your father believes he is still has young kids or is working etc, a good way to bring him back to reality is using things like photos and telling him the story behind it then getting him to tell you the story. Good luck with it all, I hope this helps you

My parents lived in their own independent living apartment in a senior community. Mom is still there.

Home health through their insurance has provided a visiting nurse, speech therapy, occupational and physical therapy in their apartment. This is Florida.

You could find a private caregiver to care for him at his home. I don't know what his finances are. He would have to accept assistance.

I am sorry he takes out his frustrations on you. That is very hard and gets old.

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.

That is probably what he wants is to be left alone to die. You can't be expected to bear this burden, it isn't fair.

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!

marydys - I was surprised by some to the replies that called you heartless. More like tough love in my opinion. I came to a time in my mother's care when I knew my Aunt and I could not care for her safely at home. She still wanted to go home so we gave her goals to reach to make that happen. Just like when raising children you give them choices but limit them to choices you can offer. You can offer different options for where he will live. Continue rehab so he can move to a less restrictive environment or stop rehab and move to a nursing facility where he will be safe but have limited options.

With my own dad I knew he reached a place where hospice was the only answer. His doctor was not very cooperative with this but when I could no longer get him up and down out of bed and he had to go to the hospital the doctors there saw what I was seeing and got him enrolled in hospice. I had done the PT and the OT and everything his doctor had required with him but it came to a point where his dementia progressed and he was just going to be bedridden. In some ways when we got to that it was a relief to him and me. With hospice he was made comfortable and the struggle was over. He only lived 2 more weeks but when it’s time it’s time.

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.

Just because he has dementia does not mean he is a candidate for Hospice, first of all.He has to be at the stage where the Doctor decides he has 6 months, or less to live. You cant expect HIM to make choices if he has dementia.Has a Dr. diagnosed dementia? His Dr. should make referrals as he should be able to best determine what kind of care he needs. You seem to be very disrespectful in regards to your Dad. If you are so resentful you should let someone else deal with the situation instead of treating your Father rudely. No wonder he doesnt want to live! Put yourself in his situation. Not easy, he needs emotional SUPPORT.

Please please try to put the anger you are feeling away. It does not help you at all and what your Dad is experiencing is so very normal for dementia. It sounds like is a lot like what Mother experienced, short term memory is very bad and long term (and I do mean long term) is a little better.

With Mom she also kept asking to "go Home". The more I talked with others and the staff at her care facility, the more I realized that Mom was both angry and confused. A lot of denial added to it. She didn't remember so much of her health challenges and abilities. When she was in rehab she would work hard. The second they stopped so did she. It was very frustrating for both of us.

I had to put her into Hospice the last year of her life (she made it to 98) and I knew it was the best option for her - She too could not dress, toilet, up and down alone. It all took care. We were fortunate enough to have her in a facility that kept her busy as much as she allowed. She was never allowed to just lay in bed - until the very end when she tried to pick something up from the floor while in her wheelchair - fell out and broke a hip. Nothing could or would be done by doctors, she was too frail and in ill health.

Try, as hard as you can, to remember that your Dad, does not remember nor really understand what is happening to him. I did tell Mom about Hospice coming in, but put it in a way that it was for extra help for her to not be in any kind of pain, etc. Put it is a positive light and it will help. Because, as I found, Mother didn't remember the conversation shortly after it happened.

Good luck, prayers and God bless, caring for a parent is not easy and takes its toll on us too. Love him, and remember that does not mean you must "like" his attitude or behavior. Love him just because he is your DAD!

In desperation I tried tough love with my husband and got the same reaction as you. However, It didn't last long at all. He pulled himself together as much as he could but he couldn't sustain it. I hate to tell you this but I suspect you may find this too. I hope not. Hospice is a blessing.

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.

It was our experience that as soon as our loved ones stopped making progress, they could no longer stay in rehab. So it is likely an alternative placement will need to be found for your dad. My FiL was is in a memory care facility when he was placed into Hospice. It also does not mean he is at the end of his life. It just means that the focus on care is comfort rather than cure. My FiL was on hospice care for 1 1/2 years before he passed. It was one of the best decisions the family made for him. Medicare pays for all his needs. He had a nurse who visited weekly and got him any equipment he needed, an aide who came in 2-3 times a week to care for him and keep him company, a chaplain and social worker were made available to him as well. It was all additional care above and beyond what the facility did for him. They also proved to be a big support for the family. I would recommend any family in a similar situation to look into it.

Caring for a loved one is stressful on a good day and we can all benefit from some extra understanding and education for ourselves. Please seek counseling from a qualified source with experience dealing with dementia. A good social worker may be able to refer you to other options. Palliative care may be one. The "home" your dad mentions may not be the same one that comes to mind. It's often a childhood home or even their home in the great beyond. Hospice isn't necessarily the end of the road as in the past. There are different types and some patients have "graduated" out of hospice. Give your dad a hug and take care of yourself. My deepest wishes for strength and wisdom in dealing with this journey.

Placement in a facility is based on level of care needed and who or how that care can be provided. It is a separate issue from Hospice.
It does not sound like you are prepared or willing to take care of your father in your own home or his, so you need to make other arrangements for his day to day care. Hospice does not take over these needs for you. With or without Hospice overseeing his medical needs, you need to provide and pay for day-to-day hands-on care for him either at home or in a facility.

Placement in residential facility should be based on his current needs. If he does not succeed in rehab, he will need more care than 1 person can provide 24/7. That means he will need a placement in a residential facility. If he succeeds in rehab, an evaluation must be made prior to release from rehab about what situation best meets his needs. This means he may still need placement in a residential facility or he may be able to manage at home with regular help. Please check his insurance to see what types of home help he qualifies for before offering this option to him.

My mother has had Vascular Dementia for over ten years. She was in Hospice for 6 months, in 2014, after a stroke, and then taken off, because she hadn't continued to decline. She is 86 now, with no signs of terminal illness. After my dad died, she lived with me for one year and has now been happy in Memory Care for 5 years. She does not know me, but we have nice visits.

You might want to know what type of Dementia your Dad does have, so you will have an idea of how your Dad's illness may progress. I agree with the others' description of how Hospice works. And I agree that your Dad should be in a facility sooner than later, especially if he is not willing or able to improve with Rehab. He could have P.T. in a Memory Care facility, but Medicare will pay only as long as he is making improvement.
Just know that you cannot force him to participate, and your frustration does not help either one of you. His brain is sick & not allowing him to be his normal self.
It is time to love him as he is now, and make decisions to allow his final years to be as comfortable as possible, in whatever facility suits his needs.
When you do, you will have much less frustration and anxiety.
This illness is not fair to the patient or the caregivers!
May God Bless you and your Dad.

Imho, a gentler approach is typically best with an individual who has dementia.

Sounds like dad has given up. He doesn't see any point to rehab, no matter what you tell him. You can't make him "want" to "work" at getting better when he doesn't feel there is any reason to. It's hard to see a man who has been strong and motivated in the past (and perhaps a motivator to his children) reach the point when he doesn't seem to want to try. But it happens... frequently, as people reach advanced age. So don't let anyone guilt you because of your frustration. It's quite understandable. And don't let yourself feel guilt because you can't seem to motivate him.

Whether your father's lack of motivation is due to dementia, depression, illness or weakness due to aging (or a combination), there is likely little you can do to change his state of mind.
If hospice is offered, remember it is to make his remaining life more comfortable. That does not make it a death sentence by any means. Despite the arbitrary 6 mo. time frame, some have remained on hospice for years because the emphasis is on comfort, not longevity!

You need to let go of the anger. At least the anger at your dad. You can keep it at this terrible disease, as long as you don't let it bleed through.

Sone days with my dad it is so frustrating. He doesn't cooperate at at all. He asks repeatedly to go home. For him, his home no longer exists for a different reason. Because he has forgotten it. He still lives in the house that he has lived in for 30 years.

We move pictures around. Put a sign on the wall that says "Weaver's Home" Put things nearby that we hope will make him feel like he is supposed to be here. And remind him endlessly that this is his home.

Somedays he is fairly alert. Interacting (at a toddler level) others he is somewhere in the back of his mind, and we don't seem to exist. Sometimes both in the a Anne day. It's like flipping a switch. Which man will be here today, or this afternoon.

We are learning to accept more, and work with his rhythms. But for a long time we tried to fight to bring him back out of wherever he had gone.l when it was time for PT or time to to eat. Time to go to bed. My mom especially struggled to accept That sometimes he couldn't go upstairs to sleep. Or come down in the morning for breakfast. That sitting back down when she needed him to stand up wasn't a code he was making. That maybe someone in his head really was telling him to sit down when she was begging him to stand up so we could clean him up and change him.

But i understood That she is fighting to keep him alive. She loves him. She doesn't know life without him. Logically she should have accepted hospice care at least 2 years ago. He shouldn't be here, no one believed he would make it thru last year. But she just now agreed to put him in. After a very rough 5 months.

There have been days when I don't believe the at he will last the week. It seems like all we have is a shell or a puppet who stares blankly, but will eat and move a bit on command... Times we told the family "If you want to see dad you need to come now." Then suddenly the switch flips and he wants peaches. Asks to go places. Wants a shower. He will get up and walk to the bathroom. To the car... Where we struggled earlier to get him to walk the few feet between his chair and his hospital bed. He asks about the distant past, but there is someone home again. A child in a man's body, but some shadow of my dad. At least for a little while...

The past 2 months the bad days have been more frequent and longer. Until then he slept upstairs with my mom. (We have a stair lift. ) came down almost every day. After his last hospital stay my mom had to accept that he can only go upstairs for a shower on the best days. (The handicap bathroom is up) When he decides that he wants to go.

A lot of his care has been accepting the at he isn't making a choice to ignore you. He isn't throwing his pills or other items to be mean. He isn't refusing to stand because he wants to hurt you. That he really believes That at my 13 year old and I kidnapped him. That everything is hard. But in some ways every day is a blessing.

My dad would die in a nursing home. He was in rehab after hospital stays in the past... 2 different ones almost killed him. He will NEVER go back to one, nor to a nursing home. At least not as long as my mom is able to figure out a way to keep him home. Which hopefully will be until he passes. I am looking for some more ways to help her when I am not here.

Dad is doing better physically eating, walking, going to the bathroom (with help).. but his mental state now comes and goes more dramatically than before. He will be leaving the inpatient rehab this week and going to a skilled nursing rehab for a time because his health isn't good enough for the memory care I really liked and wanted him to go to. But he is better and maybe it's still possible after he finishes at skilled nursing home rehab.

His dementia before the accident was fairly invisible... but now when he's having a bad day it looks like dementia to everyone. It is so hard to even have a conversation but I try to understand what he is attempting to communicate. I knew that this was the risk when we decided to get him the surgery and try to have him rehab...that he could have more severe dementia from the brain damage. We don't know what his new normal looks like.

Do you have POA, if he is released from rehab because he has reached his potential, then either he stay at that facility and pay privately or go onto medicaid (I would see an Elder Attorney asap). IF he can't stay at that facility because only for rehab, then you better start checking around for a place that will take him and be sure they accept medicaid. Again seek out an Elder attorney. And why would he need to be on "hospice" unless he is close to end of life or whatever? just because he doesn't want to do rehab doesn't mean he needs hospice. I understand the point of getting "cross" with him to get him to be quiet. I have yelled at one point in the past to my father also, which I would have Never done in my life to my parent. but he quit the "negative arguing". I felt bad afterwards and asked God for forgiveness. To answer the question: why bother telling him he is going onto hospice......does it matter......no. Take care of things and if he questions why going into a NH, tell him until the doctor says he is good enough to go home, then that is where he has to be. (we never did tell my dad that he was in a NH, he thought he was still in hospital)........it didn't hurt him to know where he was at. wishing you luck.

It’s difficult, but in the end you are not responsible for extending you dad's life. You can’t force someone to get better if they are not, or cannot participate.