My dad wants to get out of rehab and go home. But he has no home at this point as he can no longer live where he lived before. I tried to explain to him that he had two choices: a hospital rehab where he is able to get physical therapy like where is is now, or if he is done trying to get better he goes to hospice which is just like this but no chance of getting better. He will just lay in bed watching tv and wait to die.
I know that was too harsh but he shut up and stopped yelling at me.
I said that the only way there is a third choice was if he worked hard at rehab and got better then he could go live at a nicer facility. But he can barely eat due to swallowing, can’t get out of bed, can’t go to the toilet or dress himself so it’s all up to him to get better or give up.
Of course this is my fault somehow. Seriously I’m tempted to just give up and send him to a place he can be on hospice.
I'm beginning to think that the hospice choice is more about when YOU as caregiver can’t deal anymore as it is making an informed choice that your LO just is not going to get better.
Anyway. He has dementia but not Alzheimer’s and not always very bad. Do you try to explain or just never tell them?
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.
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.
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 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.
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.
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.
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!
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.
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!
He's mostly been in a very good mood and usually has a good attitude about these setbacks. He's doing much better physically now that they put him on the meds I was requesting (that helped him in the past). So maybe memory care is the right place versus skilled nursing. Without him doing PT, I couldn't send him to the memory care and feel he would be ok.
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.
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 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.
first step; care conference
second step; deciding where he moves to
third step; hospice evaluation if his doctor thinks that is an appropriate referral.
when the decision was made to move dad to a LTC facility, I asked the doctor at the rehab to explain to him why he had to move, while I was present. Then I chose dad's room, moved him and that was that. You will have to make this decision. Your dad has dementia and is not capable of decisions like this. Will he be happy? Who knows? But life in LTC is not just laying in bed. My dad was wheelchair bound and went out to meals, played games, etc. Medicare will not pay for PT if the patients doesn’t progress...another of their rules.
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 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
I understand what you're saying. No judgment here because basically I am feeling the same way about my husband. He has Parkinson's and wanted home PT And OT, well when they came this week, he acted like he didn't care whether they were here or not. Mind you there is nothing wrong with my husband's mind. I told him that if I didn't see him trying then I will discontinue the therapy. There's no sense in wasting the therapists time if they can work with other patients that want to get better. So, you gotta do what you feel is right in your heart. Don't listen to others that don't know your situation. God bless you whatever your choice may be. Being a caregiver is really hard and watching people we love going down hill is hard.
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