I assume there are already two people carrying out these changes? Do you and your mother have any other help, or is it just family trying to cope?
It is wrong for your mother to be at risk of harm. I realise that that sounds like a counsel of perfection - who else is going to care for your father? - but when it comes to weighing up the pros and cons of the family's options, your mother's wellbeing needs to be right at the top of the list alongside your father's. She mustn't see injury to herself as something she just has to put up with as part of the misery of dementia.
Normally I'd say go to alz.org and type "challenging behaviours" into the Search function, but don't do that when there's an immediate situation because the answers will just annoy you. Is your father in pain, frustrated, or not receiving enough social stimulation? - for example. All very valid questions, but no help at all when you need to get him cleaned up and he's just socked you in the jaw.
But going back to Square One is not the worst idea. Can you tell what it is that your father most objects to when he resists being changed?
Thank you for responding, He doesn’t like to be touched period. He can’t really speak except to say “no”. He won’t wear a “pull-up” he rips them off so we have regular boxers on him with absorbing pads, towels and sheets under him and he goes whenever. He has hospice care but we will not place him somewhere we don’t believe in doing that. We are considering using ties when we need to change him. When my mom yells at him and asks him to cooperate he eventually will calm down for about one minute but getting to that point is not good for my mom. His overall behavior is combative even though he was an excellent provider and father he has always been an angry person (my mom says)I am trying to find something that will work
Well, if you don't see or want to accept the need to place him in AL, you are on a slippery slope. He is abusing your mother. Your mother's well-being also should be considered, and at this point it is not, either by you or her. Possibly because you are following her lead to keep him at home no matter what, sometimes we get lost in others verbiage and can't see the forest through the trees. I hope that you can figure this out, before your mother really gets injured...then what?
Hi Tartan, sorry about your Dad, Mom and you and your children. Such a terrible disease you are all suffering through. Have you tried any calming techniques before changes with your Dad. Quiet environment, warm, dim lights, maybe some soft music? Over stimulation aggravates my Mom so I do all these things. Even distraction with a piece of candy. Whatever gets the job done. I’m not one to push pills but maybe an anti anxiety med is needed. Could your Dad be in pain that needs to be addressed? I hope something I said might be of some help. Good luck.
Since you have hospice involved, you should ask them to medicate your father for the aggressive behavior he's exhibiting. He's obviously upset at being touched, and your mother is obviously upset at being pinched and bruised, so, short of having him placed in a facility where they can care for him appropriately, your choices are limited. Refusing to place him is kind of like refusing to take a seriously ill person to the hospital when they are very sick. Hopefully it won't take a trip to the hospital for your MOM in order for both of you to start believing in care facilities for patients with serious dementia issues! Best of luck!
You don’t believe in placing him somewhere, but are here asking questions on what to do about abusive behavior. You want to tie him down to change him so he cant pinch or hit? He is combative and angry? What exactly are you waiting for to happen? I am not judging, just cannot understand why you do not do what is best for him AND your mother. He needs to be in a decent facility with staff who are trained to deal with such things... Your lives are being consumed and you really need to reconsider. I wish you luck in this. It is a tough journey for all to take.
I would add to this very reasonable statement the fact that if your mother is obliged to “yell at him” to change his behavior, she is being placed in an additional painful situation to attempt to get a desired outcome that might well be easier for one or more trained professionals who did not have an emotional stake in the outcome. Placement and professional observation might result in identifying physical or medical interventions that might help him be more calm and peaceful, but in your and his presently painful and unsettled surroundings, the job is always quick self preservation. Not at all conducive to observation and problem solving.
“We don't believe in that” is not a justification for attempting to avoid getting the best possible situation for not only your father, but also for your mother. Two vulnerable people who will continue to suffer.
What is it that you don't believe in when it comes to placing your father with advanced dementia in a facility where he can get professional care from three shifts of young, trained, rested and supervised caregivers?
Your mother yells at him to stop fighting? Maybe being touched is causing him pain? You left a job you love and feel resentment at giving up your life to care for him?
How is this abusive, resentful "care" better than being in a care home?
I'm sorry if this sounds uncaring or mean. But sometimes people get these mantras in their heads...."our family takes care of its own"....."we would never do a thing like that"...."we'll see this through to the bitter end" without recognizing or re-evaluating the costs of those platitudes.
When was the last time your Dads seen a doctor? Aside from the dementia, is it possible that he actually does feel pain when touched? My Mom always hated taking a shower at the NH, but she loved to sing and the aides would get her singing on the way into the shower, and I could sometimes hear her singing all the way down the hall. It actually worked sometimes to get her mind off it. Maybe you could try that? And I have to concur with Barbs post... if your Mom is getting kicked and pinched and has to yell (to try to calm down a man who was always angry??) this is not certainly fair for her. Nor a healthy environment for grandkids to witness. Sometimes behaviors like this are too destructive for untrained people who are just trying to do the best they can, and may be better done by professionals for everyone’s sake. It’s not forsaking someone...it’s recognizing that a loved one deserves the best care possible, wherever that may be.
Have you tried one of you distracting him while the other deals with business? I can't imagine that tying him would work out so well, if he doesn't like to be touched, restraint is going to be difficult. Have the doctors tried chemical restraints? I believe that would be the 1st line of action.
I imagine that you have tried everything, so forgive me if this is redundant, can you tell him, in 3 minutes we are going to clean you up, when the alarm goes off we are going to clean you up and you need to lay still and be nice. Then tell him as he is being positioned to get changed that he needs to be still and be nice. Do this every time and when he starts getting agitated firmly tell him to lay still and be nice. I don't know, toileting is my line, I won't deal with that for my dad and if I did, his beating on me during the process would quickly put an end to it.
I am also curious if you have tried putting a diaper type depends under his regular boxers? I can't imagine dealing with a full grown man going everywhere and only using pads. That has to add to the work load like crazy. Maybe tell him that he needs to layer up with those whitey tighties under his boxers.
I know that you are apposed to facility placement, but have you considered that your mom could very easily be severely injured by a well placed foot or the resulting fall, also she could die 1st and then what would happen. Statistically roughly 40% of caregivers die before the person they are caring for. Is it really worth losing her to his disease?
Give him something to hold onto while he is being changed. My Husband never pinched but I would have him hold a washcloth that I had rolled up. This also helped with the contractures of his hands. It also absorbed sweat so it kept his hands dry. If a rolled up cloth does not work try a tennis ball or other object that he can focus on. If he is at all participatory in his care you could ask him to hold a clean wipe or a brief. This would make him feel more "purposeful". In any case it would take his mind off what is being done. Also talk to him in a kind pleasant way so that he does not feel that this is a burden on anyone. Also if the process of changing him causes pain or discomfort this may be his way to tell you that. You might want to try a different way of rolling him to change him. Hold at the shoulder and the hip. Have him reach for the side of the bed this will help with the rolling. Or use a sheet to help roll him, this will take almost all pressure off him. If you do not have Hospice in you might want to make a call. They can provide you with equipment that will make your life easier. Much easier to move someone and transfer with a Hoyer Lift. And there is a product called Lavin Lift Straps that allow you to use the Hoyer to lift the lower portion of the body to make changing in bed easier.
And I looked at your profile and if I understand this is your husband not your father correct? In any case is there any other help you are getting? It sounds like you could use a caregiver in a bit to help you and give you a needed break. Hospice would do that when you have a CNA come in a few times a week to bathe and order supplies and you would have the ability to have a volunteer come in and sit with him while you get out of the house.
One has to be careful about giving a person something to keep their hands busy. If a person doesn't like being touched, that item could become a projectile hurting the Mom or the daughter.
I understand your feelings about placement of your parent, and many people have given you advice, so I just say this to you. Your father is at a stage where he requires a lot of care. You and your families job is to love him as you have always done. With the situation you are facing you are putting yourselves in a dangerous situation, it is also one where anger and frustration comes more easily than love. You all need to give yourself permission to love this man and hand the frustrations of the primary care to others who are trained to deal with it. This will free you and your family up to return to the proper relationship with him during this difficult period of his, and your lives. You can concentrate on making memories with him and not conflicts. I wish you luck with your decisions but you obviously care very much, you just need to give yourselves permission to show it in the best manor.
So your saying cause he gets combated for them to put him in placement !!?? Smh no you can distract him with giving him something to Occupy his hands why you do what you need to do
By chance are your Tartanfirl's daughter? And you are writing for your Mom at this time?
I see from your Mom's profile, she is caring for her husband who has dementia, she had to resign from her job, and that her daughter has moved back into the house to help her along with her daughter's two youngest children, high school and college age. Am I reading that correctly?
May I ask how much formal caregiving training you, your Mom have had? Like most of us here, we have had zero training. There does come a tipping point.
There also comes a time where dementia patients needs a village to take care of them. My Mom went from home, to hospital, to long-term-care. No way could I do the hands-on care at home that was needed. I was senior age which I feel that your Mom is also a senior.
As Isthisrealyreal has noted in her post, up to 40% of caregivers die leaving behind the person they were caring. Those are NOT good odds. And how fair would it be for the rest of the family if Mom passes or becomes ill from the stress, which isn't uncommon?
Then you will need to do the work for 3 full-time caregivers daily, that's 168 hours per week, no time off. That will have a major impact on your children.... and now you will be looking at the 40% odds on yourself.
There is nothing wrong with assisted living/memory care nor with a skilled nursing home. Now a days there are even Hospice facilities where the professionals deal only with hospice patients.
Is cost a factor? If your parents are not able to budget for a hospice facility, then Medicaid [which is different from Medicare] can kick in to pay for Dad's care at a nursing home. Then Mom can once again be the Wife again, and you once again be the daughter.
"He has hospice care but we will not place him somewhere we don’t believe in doing that. We are considering using ties when we need to change him." What exactly do you think restraints are going to do for his behavior besides agitate him more??
Your father's brain is diseased and there is nothing you or your mother can do to change that fact. Right now it's your mother who is suffering both physically from the punches and kicks and emotionally from the stress of watching her husband go through this disease.
There are no happy endings here. It is time for you to help your mother make the difficult decision of getting your father the pain and agitation medication he clearly needs either at home through hospice or in a nursing home.
My father had extremely bad pain in his tail bone. Cleaning my father up put him in more pain. He was able to talk to us about it. When asked where the pain was he said “right between the buns“. If your dad is in that kind of pain & not able to tell you that may be why he fights getting cleaned upped. I know everybody’s different but it maybe something to look at.
Tartan girl I'm going to pretend that I didn't read that you and your mother are considering tying your father down while you see to his personal care, and that your mother's current method of getting him to cooperate is to yell at him.
But if those things were happening, *any* trained person involved in care of older people or people with dementia would have kittens. They are plain abusive. If they form part of the only way that your father can be attended to at home, in what way is the care he is receiving better than that you would demand for him in a facility?
You MUST get help from trained providers. This can't continue. Both your mother's and your father's welfare are suffering, and you do not need permission from your mother to seek help.
Some good feedback here but the one I would echo you do as well as any of the other ideas you like is consult with the Hospice caregivers you already have coming in to help. They deal with this kind of stuff all the time, work with family like you doing the care giving at home and if they are a good Hospice organization they should be providing support and care for you and mom as well. Maybe they will say let's coordinate with the doctor to both make sure something new isn't going on that's causing pain and explore medication to make him more comfortable, maybe they will have methods they can teach you for making this less stressful and doable for all. That's what Hospice is all about, making the patient comfortable during the end stages of life. But while I absolutely understand how you get to the point of frustration that has you considering restraining him I urge you not to do this, it's obvious you and Mom love him and want to do everything you can for him and I think witnessing never mind being a part of the horror restraining him to accomplish something he is fighting against already may leave you with lasting guilt and regret you can't forget. It just isn't worth the risk IMHO. Try getting help from the professionals first and really try their suggestions, even if you aren't crazy about them weigh it against restraining and fighting with this person you love on a regular basis before passing. Hopefully the Hospice people will do some changes/clean-up's with you both as they evaluate things and figure out the best things for you and mom to try as well as training you to do it. Hang in there!
I do not know if this is helpful or not. My mother was having severe problems for a while. When dicussing this with the NH, they informed us that they are NOT ALLOWED LEGALLY to restrain a patient, tie them down in any way, for any reason, and they are not even allowed to SEDATE them when they are agitated. Even if they are combative, they have rules and laws that allow them certain liberties to help the patient to be calm, safe and secute and not hurt others, but they arent allowed to "do anything they want"...so you may want to consider whether, if you are at a point that you need to "tie him down" in order to change him, if you and mum are the best caregiver for him. I mean nothing offensive by saying this. Everyone must do what they need to do. But it is humiliating and demeaning for people to be changed, wiped, and if they are also in pain while it is happening, well...I might kick and yell a bit too. You need help, from professionals, dad needs a kind doctor to do a checkup, even constipation and or diaper rash can be terribly painful, as well as an enlarged prostate...I wish you the best and hope you all get help. It is a hard situation.
Please under no circumstances tie him down..i am a RN and i took care of my mom with dementia and I know it's not easy...but if you tie him down and he passes away gets hurt or anything happens....or you get turned in to elder protective services then you go to jail for unlawful imprisonment and abuse..you need to call 911 and send him to the er have him worked up for a uti and other things and then have him placed,,, if you can't take care of him his safety and well-being are most important so place him with professionals....i know your intentions are good but..don’t put yourself in a position to where you cant handle him anymore and try to solve a problem that is more than you can handle..this problem has gotten bigger than your coping skills..send him 911 to the er and have him worked up..lots of prayers headed your way,,, I know your pain..
My mom would do the same thing. She would yell, curse, bite at us and threaten us. We found that having someone in the room they are still familiar with and trust and have them talk them down from their frustrations and have them explain the he needs to be changed worked for us. But they must sty in the room with you while you do the changing. The other person can carry on a conversation to distract them.
I thought a forum was a place where you could get and give strategies, a place to learn from those who have traveled this road before. For those of you that suggested “distraction” thank you. The Hospice nurse suggested the same, today after she told my mother and myself that we were giving my father excellent care. I was surprised by the assumptions and judgment that was expressed regarding my fathers care, like I stated above the hospice team feels we doing a great job. But you assumed something different and ran with it. Isn’t a forum a place where you can go and just spew out the negative thoughts and feelings without fear of being judged? About nursing homes, I think I may have touched a sore spot by saying that we would never place my father in one. Do I see a need for justifying placing a loved one there? Would you want to go yourself into one? One of the saddest places to be, ice cream socials, crafts, Valentine’s Day card making, really??? No individual one on one care, no one to hold their hand and say I love you at 3 am, this disease robs them of who they were don’t you think we can at least keep them in their own home and give them a dignified way to die, with their loved ones around them. It is a lot of work, but we wouldn’t have it any other way, we couldn’t live with ourselves. But then again that is the way we were raised. When I found this website I thought it was fabulous, but the response to my question was so negative and judgmental that I won’t return. I wish you well everyone
I think you've gotten LOTS of helpful/useful/well meaning answers here. If you re-read your question and subsequent reply to Countrymouse, looking at it objectively, what sort of answer would YOU give someone else asking the same question? You ask about tying your dad down, an RN gives you helpful feedback on that subject and you tell her to 'calm down'. I don't think we feel 'important' or try to be judgmental, we just attempt to share our own experience with the care giving journey. A forum format isn't for everybody........it's for those who can weed out the comments they find helpful and ignore the rest. I doubt it was anyone's intent to make you so angry. Wishing you all the best of luck.
You have a lot of answers here, so I just have a tip that worked my mom. I gave her a Tootsie Pop & she immediately settled down and allowed her to do whatever task, that we were trying to do. Sweet Distraction.
Did you read my response? WE HAVE PROFESSIONAL HELP. I don’t even know why I checked this site again. I was showing my daughter what a forum is not. I’ve figured it out, it’s a place for powerless people to feel important, and that is proved by the lack of attention to entire thoughts, assumptions, and the overall need for validation anywhere they can get it.
According to your profile, it's your H who has dementia: "My husband was diagnosed with Dementia five years ago but I began seeing the signs 5 years before that. I care for him at home, I had to leave a job I really liked to care for him. My daughter has moved back into the house to help me along with her two youngest children, high school and college age. I’m tired, frustrated, angry that my life has been taken over by this disease."
Are you the daughter who has moved back into the house and left a job she really liked, and you filled out the profile for your mother?
Hi Tartangirl. I hope you return to this forum just one more time to read this post. I felt the same way when reading some of the responses and your response to those posters was spot on in my opinion. I couldn't agree with you more and feel the same away about caring for my mother at home. It's a lot of work for sure but I too wouldn't have it any other way. I do not judge anyone for their choice and in turn would expect the same courtesy. You were not asking to be convinced to put your Dad in a facility. You clearly stated that is not what would be done and were clearly asking for advice on how to manage his current behavior. I too thought I had found a wonderful forum but not so much anymore. I have been a caregiver for my Mom for over a decade. I do get it...all of it. Best of luck to you and your family.
It is wrong for your mother to be at risk of harm. I realise that that sounds like a counsel of perfection - who else is going to care for your father? - but when it comes to weighing up the pros and cons of the family's options, your mother's wellbeing needs to be right at the top of the list alongside your father's. She mustn't see injury to herself as something she just has to put up with as part of the misery of dementia.
Normally I'd say go to alz.org and type "challenging behaviours" into the Search function, but don't do that when there's an immediate situation because the answers will just annoy you. Is your father in pain, frustrated, or not receiving enough social stimulation? - for example. All very valid questions, but no help at all when you need to get him cleaned up and he's just socked you in the jaw.
But going back to Square One is not the worst idea. Can you tell what it is that your father most objects to when he resists being changed?
Best of luck!
Placement and professional observation might result in identifying physical or medical interventions that might help him be more calm and peaceful, but in your and his presently painful and unsettled surroundings, the job is always quick self preservation. Not at all conducive to observation and problem solving.
“We don't believe in that” is not a justification for attempting to avoid getting the best possible situation for not only your father, but also for your mother. Two vulnerable people who will continue to suffer.
Your mother yells at him to stop fighting? Maybe being touched is causing him pain? You left a job you love and feel resentment at giving up your life to care for him?
How is this abusive, resentful "care" better than being in a care home?
I'm sorry if this sounds uncaring or mean. But sometimes people get these mantras in their heads...."our family takes care of its own"....."we would never do a thing like that"...."we'll see this through to the bitter end" without recognizing or re-evaluating the costs of those platitudes.
((((((hugs)))))))))
My Mom always hated taking a shower at the NH, but she loved to sing and the aides would get her singing on the way into the shower, and I could sometimes hear her singing all the way down the hall. It actually worked sometimes to get her mind off it. Maybe you could try that?
And I have to concur with Barbs post... if your Mom is getting kicked and pinched and has to yell (to try to calm down a man who was always angry??) this is not certainly fair for her. Nor a healthy environment for grandkids to witness. Sometimes behaviors like this are too destructive for untrained people who are just trying to do the best they can, and may be better done by professionals for everyone’s sake. It’s not forsaking someone...it’s recognizing that a loved one deserves the best care possible, wherever that may be.
I imagine that you have tried everything, so forgive me if this is redundant, can you tell him, in 3 minutes we are going to clean you up, when the alarm goes off we are going to clean you up and you need to lay still and be nice. Then tell him as he is being positioned to get changed that he needs to be still and be nice. Do this every time and when he starts getting agitated firmly tell him to lay still and be nice. I don't know, toileting is my line, I won't deal with that for my dad and if I did, his beating on me during the process would quickly put an end to it.
I am also curious if you have tried putting a diaper type depends under his regular boxers? I can't imagine dealing with a full grown man going everywhere and only using pads. That has to add to the work load like crazy. Maybe tell him that he needs to layer up with those whitey tighties under his boxers.
I know that you are apposed to facility placement, but have you considered that your mom could very easily be severely injured by a well placed foot or the resulting fall, also she could die 1st and then what would happen. Statistically roughly 40% of caregivers die before the person they are caring for. Is it really worth losing her to his disease?
My Husband never pinched but I would have him hold a washcloth that I had rolled up. This also helped with the contractures of his hands. It also absorbed sweat so it kept his hands dry.
If a rolled up cloth does not work try a tennis ball or other object that he can focus on.
If he is at all participatory in his care you could ask him to hold a clean wipe or a brief. This would make him feel more "purposeful". In any case it would take his mind off what is being done.
Also talk to him in a kind pleasant way so that he does not feel that this is a burden on anyone.
Also if the process of changing him causes pain or discomfort this may be his way to tell you that. You might want to try a different way of rolling him to change him. Hold at the shoulder and the hip. Have him reach for the side of the bed this will help with the rolling. Or use a sheet to help roll him, this will take almost all pressure off him.
If you do not have Hospice in you might want to make a call. They can provide you with equipment that will make your life easier.
Much easier to move someone and transfer with a Hoyer Lift. And there is a product called Lavin Lift Straps that allow you to use the Hoyer to lift the lower portion of the body to make changing in bed easier.
And I looked at your profile and if I understand this is your husband not your father correct? In any case is there any other help you are getting? It sounds like you could use a caregiver in a bit to help you and give you a needed break. Hospice would do that when you have a CNA come in a few times a week to bathe and order supplies and you would have the ability to have a volunteer come in and sit with him while you get out of the house.
I see from your Mom's profile, she is caring for her husband who has dementia, she had to resign from her job, and that her daughter has moved back into the house to help her along with her daughter's two youngest children, high school and college age. Am I reading that correctly?
May I ask how much formal caregiving training you, your Mom have had? Like most of us here, we have had zero training. There does come a tipping point.
There also comes a time where dementia patients needs a village to take care of them. My Mom went from home, to hospital, to long-term-care. No way could I do the hands-on care at home that was needed. I was senior age which I feel that your Mom is also a senior.
As Isthisrealyreal has noted in her post, up to 40% of caregivers die leaving behind the person they were caring. Those are NOT good odds. And how fair would it be for the rest of the family if Mom passes or becomes ill from the stress, which isn't uncommon?
Then you will need to do the work for 3 full-time caregivers daily, that's 168 hours per week, no time off. That will have a major impact on your children.... and now you will be looking at the 40% odds on yourself.
There is nothing wrong with assisted living/memory care nor with a skilled nursing home. Now a days there are even Hospice facilities where the professionals deal only with hospice patients.
Is cost a factor? If your parents are not able to budget for a hospice facility, then Medicaid [which is different from Medicare] can kick in to pay for Dad's care at a nursing home. Then Mom can once again be the Wife again, and you once again be the daughter.
Just food for thought.
Your father's brain is diseased and there is nothing you or your mother can do to change that fact. Right now it's your mother who is suffering both physically from the punches and kicks and emotionally from the stress of watching her husband go through this disease.
There are no happy endings here. It is time for you to help your mother make the difficult decision of getting your father the pain and agitation medication he clearly needs either at home through hospice or in a nursing home.
But if those things were happening, *any* trained person involved in care of older people or people with dementia would have kittens. They are plain abusive. If they form part of the only way that your father can be attended to at home, in what way is the care he is receiving better than that you would demand for him in a facility?
You MUST get help from trained providers. This can't continue. Both your mother's and your father's welfare are suffering, and you do not need permission from your mother to seek help.
Wishing you all the best of luck.
Are you the daughter who has moved back into the house and left a job she really liked, and you filled out the profile for your mother?