I now have an 82 year old disabled mother that I care for and her personality is the very opposite of my father’s when he was declining with dementia. My mom is stubborn, uncooperative and has done the opposite with any suggestions I make to her. So for now I am so glad to have found your channel. I feel like an awful person at times to my mom. The guilt and fear never go away. She is not safe to live alone and as an RN who should know to ignore family members who don’t walk in my shoes but can only criticize and critique my failures. It is mentally, physically and emotionally exhausting. My mother helped me take care of daddy but my only sibling who lives 1 mile from the house cannot be bothered because he is a functional alcoholic who can’t see past his own self absorbed behaviors. My adult daughters all live in 3 different states so the only help is the help from caregivers from agencies. My question is this…… I cannot work an outside job in a hospital as an RN because mother is not safe to be by herself. What do I do when I am constantly reminded that “I don’t have a job” and “I really don’t do anything all day”????? I went from having a great paying job to moving into my mother’s home when she drastically declined and now I don’t have the stability of any income at all. In many ways, I know in my heart that I am where I am supposed to be…..BUT the lack of working and the family comments have made me question myself! I know I am not, but I feel like an exhausted lazy azz…… who needs to find a way to work (for financial reasons) but more so for mental sanity and human interaction. Does anyone else feel this way????
You are anything but lazy! If your family has any more critical comments, tell them to come stay for a week with your mom and then see how they feel. I love the armchair critics who don't want to get involved. It's exhausting.
I have no patience and I feel horrible. Im trying to watch videos to understand. I’ve only been dealing with my dad for 6 months. I have so much respect for caregivers & medical professionals who have the patience & know how to talk to them. I filled out Medicaid application but not sure what to do next. Not sure what we can afford but I know I’m going to need help.
It is absolutely terrible the range of emotions you go through as a caregiver to a loved one with Alzheimer’s. I’m taking care of my mother now. You are in a constant state of how bad is it going to get before they pass.
Just today I told my mother that I can easily die before her, at my own hand, and THEN she'll know that I did my best for her...this was after a really bad verbal attack from her and having a container thrown at me. I have been her sole carer for 5 months. THANK YOU FOR BRINGING YOUR EXPERIENCES TO US! IT IS WORTH GOLD!!!
Dealing with the kind of situation you are talking about means one has to definitively steps back mentally from the children/parents relationship and abandon the need for any acknowledgement from them, the parents, of what you, the child, are doing is good and right. In a way, you have to be parenting your own parent(s). This is quite a revolution in one's psyché to suppress deep-rooted and legitimate affects but a necessary one if one wants to be efficient and last in this difficult task. It goes to "don't take it personnally" because anyway in a moment the person might have even forgotten the whole incident. Ps : and you will always be the child of your parents, anyway It is just that time, aging and illness affect in a terrible and unfair manner the person who happens to be your parent, and this is this new person one has to deal with in creative ways and in an adult and dispassionated approach. Which quite a challenge, indeed!
I feel all these things now. I don’t even know who my Mum is anymore. I never had a chance to say goodbye to that wonderful person. It’s like I woke up one day and she left, and this stranger took her place. Everyday my heart breaks a little more.
I am so glad I am not alone, my mom is 67 and has dementia and depression with anxiety, I was taking care of her but it was very hard because I work and also have an 8 year old daughter, I’m the youngest of three and had no help from my siblings. My mom would leave with out me realizing she was gone, one time she left in the middle of the night in winter and I didn’t know til I got up for work and saw the door was open. I have never been so scared in my life like I was that day. All I could think of was that I was a terrible person and if something would happen it would be my fault. That was the first of many times. My mom fell and fractured her humerus and for weeks I would have to get up in the middle of the night to her screams. I would jump out of bed and run to the room to find her trying to get out of bed to go to the bathroom. I would take her and then put her to bed and go back to sleep to wake up the next day to go to work. I was so exhausted, stressed, and so angry, so many times I sat in a hospital for hours with her my daughter and I were so stressed I finally couldn’t do it anymore and had to put her in a nursing home. I worry about all the time it isn’t easy because I sometimes want to bring her back home because I hate her being there around strangers and not with her family but I also have to think about myself and my daughter. I hate that my mom has dementia I pray and always ask God please give me my mother back. I feel so guilty and horrible.
I have recently moved in with my mother who was diagnosed 8 years ago. It has been extremely challenging.. I have contacted her doctor regarding her driving and they don't seem to care. She runs lights hits curbs and has completely damaged the front end of her car. I had to make a decision to hide her keys and I feel terrible. I drive her everywhere but she wants to have another key made from the dealership and has threaten to walk. Which she barely is mobile and has had several falls. I don't understand why dovtors don't take action when family calls. If I hadn't tookrn the keys my mom would probably have a terrible accident. She has about a 5 min short term memory span. She has completely forgotten how to use a toaster microwave or coffee pot. I have a lot of issues with her pacing nom stop . I have started doing puzzles kid ones and painting with water paints that helps a little but when I got up to use the bathroom I came back and she was trying to eat the paint thank god I caught it. I feel like a failure and not good enough. I cry for my mom she is physically there but not mentally at all
We had to do the same with our LO. You are not alone! I know how you’re feeling, please don’t feel terrible for taking her keys, if anything you probably saved her and someone else’s life. You’re doing the best you can and if your doctors don’t care you probably need to find another doctor who specializes in geriatrics. Stay strong, be encouraged!
Thank you for sharing. It *is* awful, in the sense of being unfortunate to have to go through it at all -- for everyone involved! Know that you're no alone!
Thank you so much for for your kind and informative advice my wife suffered a vascular Stroke 5 years ago which caused APHASIA and she lost the ability to speak,her condition has deteriorated slowly but surely and some days i am in utter despair so your kind advice is very very HELPFUL thank you most sincerely
Same here, almost one year ago. They tell us - Altzheimer and Vascular (mixed dementia). Six more months?? Six more years?? No one can answer that question. I pray she passes before me so I will always be there to care for her. I have not yet found the resources to fully help me care for her. But I am searching. Our Doctors have nothing to offer. I only imagine that the care I am giving today is far less than the care I will have to give in the near future. While I assess my wife is in Stage 6/7, I read Vascular Dimentia will likely not spend much time in Stage 7. I have very dark thoughts as I watch my wife lose herself entirely. God help us all!
I am totally regretful for being a caregiver. I will have feelings of guilt with me for the rest of my life. I tried to do my best considering the circumstances. It’s actually turned out to be the worst experience of my life.
I am going through of these emotions. It’s been 4 and half years of taking care of my husband with FTD dementia and he is going downhill. I feel so guilty of the way I feel but I don’t think I can do it anymore! Thank you for this video
I'm always torn. In a sense, I'm relieved when people can relate. But, on the other hand, I'm sorry that they *can* relate -- because it usually means they are going through a terrible time. You're not alone!
I can relate to all of these comments. I am an RN who at one point was a Nurse Manager in a nursing home. So when my father (sadly declined from Dementia) he “acted out” and started “Sundowning” between 3:00-5:00pm. I knew exactly what to do. Most (if not all doctors will) prescribe Clonazepam and/or Risperidone to help with the mood changes and acting out behavior. I think the thing to suggest to caregivers is to start noticing are “what are the times of the day or certain triggers that cause the symptoms to occur and plan ahead to have a scheduled or “as needed” medication prescribed to give them. Many people may not like this idea but let me put it like this……. My dad was the best dad I could have ever ask for, but just like this video is explaining…. Your loved ones brain is changing. Their cognition is becoming more absent as this disease progress. I remember one day watching my dad figiting with his blanket. He was just rolling his hands in and out of the edges. I made a joke that it looked like he was knitting a blanket for a whole other country….. BUT the reality was that he was feeling anxious and was not able to verbally tell anyone. If anyone has ever has stress or anxiety you most likely have a clue with the internal level of stress that you feel. BUT his non verbal anxiety was obviously “through the roof” and I could not imagine just letting him continue to have these episodes everyday without any kind of relief. I shared all of this with the hospice nurse and it was best for him to have an anti anxiety medication as needed. Yes, I have quite a bit of knowledge with patients experiencing this but with my dad, it was a new found awareness. He did not ask for dementia! He didn’t hope to decline and he certainly would have never wished (anxiety and sundowning) to occur daily. It’s a terrible disease, the decline is so hard to watch….. so my hope is that if your loved one is anxious, combative or unmanageable as their advocate please don’t ignore these symptoms. Talk to their doctor and see what action can be taken to keep them as calm and stress free as possible.
This is one of the most helpful videos I’ve watched on this subject. I feel seen and understood. It really is excruciating to watch a loved one deteriorate and loose themselves. Thank you from the bottom of my heart❤️
Husband with Stage 5 like dementia. I am the 24/7 caregiver. This was super helpful to me. I'm in the "one day at a time stage". It's all I can do. He is still sleeping at night. We are slipping into 6😢. Thanks for sharing. 😊
Thank you so much for your video! I stumbled across it and will now be going back to watch all of your videos. I found myself sobbing watching this. It is the first time in a long time I have let myself have these feelings. I am an only child and have been caring for my mom for the last year basically alone. My kids try to help as does my husband, but mostly its me.
I relate to so much of this. It's been a couple of years. Mom is 98. Health care professionals aren't well schooled in this. At times it's frustrating; at times I'm honored. Thank you for posting this. You're very clear and spot on. i ask myself what is she holding on for, she's had an extremely interesting life. Modern medicine (pacemaker) extends life. There are so many in this situation. 😢
When I went to bathroom, I saw my husband was drinking shower Gel, I had to take him to hospital he still alive and he’s 93 with 10 years Dementia, I feel i had enough I can’t take this anymore, social services in England is disaster
Not everyone has a choice. Not everyone has an option for hospice. My 84 year old mother had no plan for when she couldn’t take care of herself. I’m an only child and no family. I have been blindsided and I’m not up for the task any longer for a mother who was never a mother to me. She’s abusive. She has dementia and her family doctor will not diagnose her. She can barely get around. I’m lost.
This is such a good first step, and we need to have these conversations more... but we also need to talk about the deep concepts that are perpetuating these issues. Essentially, all of the things no one wants to hear.
Thank you *so much* for your comment. Deciding to move forward on this topic was a real nailbiter for me, frankly. As to your remark about "...all of the things no one wants to hear," I can only say: My sentiments, exactly! 100%
Thank you for speaking the words of support and exercising the notion of love, including self-love within this very difficult path of caregiving for a loved one on their path to their end. The psychological implications are bigger than I can put in words. Thank you for speaking of this.
Married to my husband for 31 years, separated for 8 years. We have two young adult children, Our daughter recently had her first child, so she has her hands full. My son 25 has moved home in the last year to help me take care of their Dad, but works during the day. I am the main care giver and I HATE him, this is so bad. If I wasn't here this would fall to my children and I am not going to let that happen. Looking back on the past I can see clearly that he has had this disease for at least 10 yrs. I just thought he was just being an asshole (and he is) . His reasoning is out the window, doesn't know that he is still married and has children but can still do ADR. He tell people, I am the woman they have hired to cook. The repetition of his stories is driving me crazy. How long is this going to last, or how long am I going to last?
I would add suggestions to caregivers to look for moments of JOY and to write them down and keep in a jar, to remind oneself it's not all bad and keep from being consumed by only negative emotions
I'm honestly sorry that anyone can relate. You know what I mean? At the same time, sometimes, this is what life gives us. Don't hesitate to let me know if there are specific concerns or issues you're encountering that you can't find resources on. If it's within my range of experiences / wheelhouse (and it may not be), I'd be happy to help if I can. And... Please know you and you family have all my very best wishes.
The reason you & the older gentleman don't understand each other's "nursing home" decision is because they are two completely different situations. I have done both. 20 years ago I was called on to move out of state leaving behind my home, my husband, friends, my job, my own life to care for my mom who was bedridden from a stroke for 2 1/2 yrs. My elderly dad promised that she would never be sent to a nursing home. I had no life of my own and felt like she was dying & taking me with her. Yes I was very resentful & I got so depressed. ( if it was my decision I would have admitted her to a N.H.) 20 yrs later I am again the caretaker of my husband with Alzhimers. Completely different scenario: Don't have to leave my home, my marriage mate, my friends or my job (I'm now retired). He's in middle stage & so far very tolerable & I don't have any thoughts of a N.H. I have hopes of keeping him at home till death. (OF course no one can predict the future. What's relatively easy now, could change for something I can't handle, I know.) Anyway, way different if you're asked to completely leave your life behind to care for them.❤
Thank you for sharing your perspectives. Let me say that I'm sorry about your mom and husband. You bring up a hugely important point regarding -- what we might call -- the difference in the "existential situations." It's virtually undeniable that a person's relationship with a parent is relevantly different than their relationship with a spouse. I'll have to reflect on this further. But, offhand, it occurs to me that differences could (and probably will) ramify. For example, a person's relationship with one parent might be strikingly different from their relationship to the other parent. And both parental and spousal relationships run the gamut from highly dysfunctional to healthy and positive. And we haven't even begun to factor in other familial or non-familial relationships for which a person could be called on to perform a caretaking role (in one capacity or other). An obvious case would be for a cognitively impaired child. But I'm sure there are people who have had to care for siblings -- or even close (non-romantic) friends. So, these are really thought-provoking complications that you mention. Thanks, again, for commenting. All good wishes for your caregiving which, I gather, is ongoing.
imagine all of the people who don't yet have a diagnosis yet are dealing with these behaviors.. such as in bvFTD where personality, inhibition and manners are the first to go.
Hey thanks so much for your information & time. I can use all I can get. My dad has just gone to a nursing home. This his second one.over the past 4years he has lost an eye.Shattered his left bottom half of his leg.Then he broke his left femur. After those two surgeries he has full blown Lewy Bodies Dementia. It got to the point where I could no longer maneuver to change his soil pull ups dress him ect. You are right it has been the most difficult, heart renching time in my life . I would do anything to trade places or just ease his pain. We have watched as he lost everything, all that made him feel like the man he was 😢.Now he is an hour away. I can’t get to him . My mother was diagnosed 2018 with dementia. When my father was home his nightly rants (I think) caused my mom to retreat to her bedroom and seclude herself. Ultimately pushing her disease further along. I am not sure of that? Would you happen to know if strife and yelling cause the dementia to progress
I'm so sorry! Both parents overlapping add layers of difficulty. Off hand, I recall that *isolation* and *seclusion* can precipiate (or accelerate) cognitive decline. I'm not sure about the effects of "stressors" and negative emotions. Intuitively, they'd raise cortisol levels. And that may well be a contributing factor. I'll make a note of your question, and try to look into it. You have all my best wishes in the meantime!
I am going through this exact situation now with my husband who has mixed dementia we are 5years down the line nearly I, I too have had those thoughts that it would be kinder for him and myself if the Lord took him instead of him having to get even more confused etc but then I think how I would miss him even though I am exhausted with all of it wondering when will it end 😔
You have my sympathies. It's absolutely exhausting; there's no question about it. I purposely avoided tackling the religious / spiritual dimensions of these issues in the video, because of the wide variation of perspectives. However, one vital component is (surely) one's perspective on suffering. In some traditions, affliction has (the potential to give) purifying effects on the soul. In my dad's case, for example, I believe that God had a purpose amidst all the agony. Tho, admittedly, it's hard to fathom. You and your husband have all my best wishes.
Yes you have said what I’m saying my husband had a heart op a few years ago and it would have been better if he had died because I because the poor man is so sad because he is aware of his condition and what it is doing to me I’m old also limited what I can do My dear daughter is considering a granny flat on her home for us both to help .Now her husband is having treatment for cancer so that is on hold So talk about pushing a rock up a hill . Thanks for touching on this.
I'm sorry sorry -- to all involved. I wish there were something stronger I could say. I've been considering tackling possible spiritual angles to these matters. But it could be polarizing. Some say that there's a purpose or reason to everything. Times like these test that sort of faith. Please know that my heart goes out to your family.
One day I was shopping and I was gonna buy some flowers at the grocery store. I remembered oh no he’s in hospice they’ve only given him a few days. I’m gonna have a lot of flowers. I did not buy any. That was a few months ago lol we’re still hanging on.
I've done this with my mother in law several times. She is in stage 6 vascular dementia and has psychotic episodes that are dangerous. He'll yes, call the police and have them taken to ER for meds. You and your family need to survive!
@NoFloridaMan my father died of dementia but we never ever thought to call the police. If absolutely necessary you call the medics. What can police officers do with a mentally impared person ? Push the patient on the ground and maybe break an arm as it happened to that poor lady with alzheimer who was accused of stealing a few dollars worth of garments in a megastore ? The police officers were fired and the agency had rightly paid some millions in damage. If this is what you want go ahead.
Hey thanks so much for your information & time. I can use all I can get. My dad has just gone to a nursing home. This his second one.over the past 4years he has lost an eye.Shattered his left bottom half of his leg.Then he broke his left femur. After those two surgeries he has full blown Lewy Bodies Dementia. It got to the point where I could no longer maneuver to change his soil pull ups dress him ect. You are right it has been the most difficult, heart renching time in my life . I would do anything to trade places or just ease his pain. We have watched as he lost everything, all that made him feel like the man he was 😢.Now he is an hour away. I can’t get to him . My mother was diagnosed 2018 with dementia. When my father was home his nightly rants (I think) caused my mom to retreat to her bedroom and seclude herself. Ultimately pushing her disease further along. I am not sure of that? Would you happen to know if strife and yelling cause the dementia to progress ? I was not sure but suspected that. That was part of my decision to place him in a nursing home. I am very curious to know because now my brother who lives in another state has begun to talk about their depleting bank accounts to my mother. I have told that can not be good for her mental state. Do you happen to know if that is true? Well thank you again for everything.
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I am guilty of feeling all these things and feeling like a bad person for it. Thanks for understanding.
It's heartbreaking -- even soul-crushing :( You're not alone
Thank you just thank you 🙏😔
I now have an 82 year old disabled mother that I care for and her personality is the very opposite of my father’s when he was declining with dementia. My mom is stubborn, uncooperative and has done the opposite with any suggestions I make to her. So for now I am so glad to have found your channel. I feel like an awful person at times to my mom. The guilt and fear never go away. She is not safe to live alone and as an RN who should know to ignore family members who don’t walk in my shoes but can only criticize and critique my failures. It is mentally, physically and emotionally exhausting. My mother helped me take care of daddy but my only sibling who lives 1 mile from the house cannot be bothered because he is a functional alcoholic who can’t see past his own self absorbed behaviors. My adult daughters all live in 3 different states so the only help is the help from caregivers from agencies. My question is this…… I cannot work an outside job in a hospital as an RN because mother is not safe to be by herself. What do I do when I am constantly reminded that “I don’t have a job” and “I really don’t do anything all day”????? I went from having a great paying job to moving into my mother’s home when she drastically declined and now I don’t have the stability of any income at all. In many ways, I know in my heart that I am where I am supposed to be…..BUT the lack of working and the family comments have made me question myself! I know I am not, but I feel like an exhausted lazy azz…… who needs to find a way to work (for financial reasons) but more so for mental sanity and human interaction. Does anyone else feel this way????
You are anything but lazy! If your family has any more critical comments, tell them to come stay for a week with your mom and then see how they feel. I love the armchair critics who don't want to get involved. It's exhausting.
I have no patience and I feel horrible. Im trying to watch videos to understand. I’ve only been dealing with my dad for 6 months. I have so much respect for caregivers & medical professionals who have the patience & know how to talk to them. I filled out Medicaid application but not sure what to do next. Not sure what we can afford but I know I’m going to need help.
It is absolutely terrible the range of emotions you go through as a caregiver to a loved one with Alzheimer’s. I’m taking care of my mother now. You are in a constant state of how bad is it going to get before they pass.
There's no two ways about it: it's a horrible affliction. I'm sorry you're going through it with your mom. You have all my best wishes and sympathies!
That’s exactly it - I can’t stop thinking of just how bad it’s going to get and how many years it’s going to take.
Just today I told my mother that I can easily die before her, at my own hand, and THEN she'll know that I did my best for her...this was after a really bad verbal attack from her and having a container thrown at me. I have been her sole carer for 5 months. THANK YOU FOR BRINGING YOUR EXPERIENCES TO US! IT IS WORTH GOLD!!!
Dealing with the kind of situation you are talking about means one has to definitively steps back mentally from the children/parents relationship and abandon the need for any acknowledgement from them, the parents, of what you, the child, are doing is good and right.
In a way, you have to be parenting your own parent(s). This is quite a revolution in one's psyché to suppress deep-rooted and legitimate affects but a necessary one if one wants to be efficient and last in this difficult task. It goes to "don't take it personnally" because anyway in a moment the person might have even forgotten the whole incident.
Ps : and you will always be the child of your parents, anyway
It is just that time, aging and illness affect in a terrible and unfair manner the person who happens to be your parent, and this is this new person one has to deal with in creative ways and in an adult and dispassionated approach. Which quite a challenge, indeed!
If you feel like that overwhelmed in that short period of time you better get some help.
I feel all these things now. I don’t even know who my Mum is anymore. I never had a chance to say goodbye to that wonderful person. It’s like I woke up one day and she left, and this stranger took her place. Everyday my heart breaks a little more.
I am so glad I am not alone, my mom is 67 and has dementia and depression with anxiety, I was taking care of her but it was very hard because I work and also have an 8 year old daughter, I’m the youngest of three and had no help from my siblings. My mom would leave with out me realizing she was gone, one time she left in the middle of the night in winter and I didn’t know til I got up for work and saw the door was open. I have never been so scared in my life like I was that day. All I could think of was that I was a terrible person and if something would happen it would be my fault. That was the first of many times. My mom fell and fractured her humerus and for weeks I would have to get up in the middle of the night to her screams. I would jump out of bed and run to the room to find her trying to get out of bed to go to the bathroom. I would take her and then put her to bed and go back to sleep to wake up the next day to go to work. I was so exhausted, stressed, and so angry, so many times I sat in a hospital for hours with her my daughter and I were so stressed I finally couldn’t do it anymore and had to put her in a nursing home. I worry about all the time it isn’t easy because I sometimes want to bring her back home because I hate her being there around strangers and not with her family but I also have to think about myself and my daughter. I hate that my mom has dementia I pray and always ask God please give me my mother back. I feel so guilty and horrible.
❤️ your mother would wish that you put your daughter first. I know as a grandmother I would
I'm mad at your siblings for you-- this is why I don't mind being an only child.
I have recently moved in with my mother who was diagnosed 8 years ago. It has been extremely challenging.. I have contacted her doctor regarding her driving and they don't seem to care. She runs lights hits curbs and has completely damaged the front end of her car. I had to make a decision to hide her keys and I feel terrible. I drive her everywhere but she wants to have another key made from the dealership and has threaten to walk. Which she barely is mobile and has had several falls. I don't understand why dovtors don't take action when family calls. If I hadn't tookrn the keys my mom would probably have a terrible accident. She has about a 5 min short term memory span. She has completely forgotten how to use a toaster microwave or coffee pot. I have a lot of issues with her pacing nom stop . I have started doing puzzles kid ones and painting with water paints that helps a little but when I got up to use the bathroom I came back and she was trying to eat the paint thank god I caught it. I feel like a failure and not good enough. I cry for my mom she is physically there but not mentally at all
We had to do the same with our LO. You are not alone! I know how you’re feeling, please don’t feel terrible for taking her keys, if anything you probably saved her and someone else’s life. You’re doing the best you can and if your doctors don’t care you probably need to find another doctor who specializes in geriatrics. Stay strong, be encouraged!
I feel these emotions now. I feel so awful that I have these thoughts.
Thank you for sharing. It *is* awful, in the sense of being unfortunate to have to go through it at all -- for everyone involved! Know that you're no alone!
Thank you so much for for your kind and informative advice my wife suffered a vascular Stroke 5 years ago which caused APHASIA and she lost the ability to speak,her condition has deteriorated slowly but surely and some days i am in utter despair so your kind advice is very very HELPFUL thank you most sincerely
Same here, almost one year ago. They tell us - Altzheimer and Vascular (mixed dementia). Six more months?? Six more years?? No one can answer that question. I pray she passes before me so I will always be there to care for her. I have not yet found the resources to fully help me care for her. But I am searching. Our Doctors have nothing to offer. I only imagine that the care I am giving today is far less than the care I will have to give in the near future. While I assess my wife is in Stage 6/7, I read Vascular Dimentia will likely not spend much time in Stage 7. I have very dark thoughts as I watch my wife lose herself entirely. God help us all!
I'm so sorry. Dementia is merciless. Feel free to vent here. There's a lot of people who understand.
I am totally regretful for being a caregiver. I will have feelings of guilt with me for the rest of my life. I tried to do my best considering the circumstances. It’s actually turned out to be the worst experience of my life.
I am going through of these emotions. It’s been 4 and half years of taking care of my husband with FTD dementia and he is going downhill. I feel so guilty of the way I feel but I don’t think I can do it anymore! Thank you for this video
I'm always torn. In a sense, I'm relieved when people can relate. But, on the other hand, I'm sorry that they *can* relate -- because it usually means they are going through a terrible time. You're not alone!
I can relate to all of these comments. I am an RN who at one point was a Nurse Manager in a nursing home. So when my father (sadly declined from Dementia) he “acted out” and started “Sundowning” between 3:00-5:00pm. I knew exactly what to do. Most (if not all doctors will) prescribe Clonazepam and/or Risperidone to help with the mood changes and acting out behavior. I think the thing to suggest to caregivers is to start noticing are “what are the times of the day or certain triggers that cause the symptoms to occur and plan ahead to have a scheduled or “as needed” medication prescribed to give them. Many people may not like this idea but let me put it like this……. My dad was the best dad I could have ever ask for, but just like this video is explaining…. Your loved ones brain is changing. Their cognition is becoming more absent as this disease progress. I remember one day watching my dad figiting with his blanket. He was just rolling his hands in and out of the edges. I made a joke that it looked like he was knitting a blanket for a whole other country….. BUT the reality was that he was feeling anxious and was not able to verbally tell anyone. If anyone has ever has stress or anxiety you most likely have a clue with the internal level of stress that you feel. BUT his non verbal anxiety was obviously “through the roof” and I could not imagine just letting him continue to have these episodes everyday without any kind of relief. I shared all of this with the hospice nurse and it was best for him to have an anti anxiety medication as needed. Yes, I have quite a bit of knowledge with patients experiencing this but with my dad, it was a new found awareness. He did not ask for dementia! He didn’t hope to decline and he certainly would have never wished (anxiety and sundowning) to occur daily. It’s a terrible disease, the decline is so hard to watch….. so my hope is that if your loved one is anxious, combative or unmanageable as their advocate please don’t ignore these symptoms. Talk to their doctor and see what action can be taken to keep them as calm and stress free as possible.
I found this honest, sensible, understanding and, oddly, comforting. Thank you.
This is one of the most helpful videos I’ve watched on this subject. I feel seen and understood. It really is excruciating to watch a loved one deteriorate and loose themselves. Thank you from the bottom of my heart❤️
Husband with Stage 5 like dementia. I am the 24/7 caregiver. This was super helpful to me. I'm in the "one day at a time stage". It's all I can do. He is still sleeping at night. We are slipping into 6😢. Thanks for sharing. 😊
Thank you so much for your video! I stumbled across it and will now be going back to watch all of your videos. I found myself sobbing watching this. It is the first time in a long time I have let myself have these feelings. I am an only child and have been caring for my mom for the last year basically alone. My kids try to help as does my husband, but mostly its me.
I relate to so much of this. It's been a couple of years. Mom is 98. Health care professionals aren't well schooled in this. At times it's frustrating; at times I'm honored. Thank you for posting this. You're very clear and spot on. i ask myself what is she holding on for, she's had an extremely interesting life. Modern medicine (pacemaker) extends life. There are so many in this situation. 😢
Esp when my Mom tells me she wishes she was dead. And my first thought is that i agree. That's scary.
I've been there :(( I'm so sorry! #YouAreNotAlone
When I went to bathroom, I saw my husband was drinking shower Gel, I had to take him to hospital he still alive and he’s 93 with 10 years Dementia, I feel i had enough I can’t take this anymore, social services in England is disaster
Not everyone has a choice. Not everyone has an option for hospice. My 84 year old mother had no plan for when she couldn’t take care of herself. I’m an only child and no family. I have been blindsided and I’m not up for the task any longer for a mother who was never a mother to me. She’s abusive. She has dementia and her family doctor will not diagnose her. She can barely get around. I’m lost.
This is such a good first step, and we need to have these conversations more... but we also need to talk about the deep concepts that are perpetuating these issues. Essentially, all of the things no one wants to hear.
Thank you *so much* for your comment. Deciding to move forward on this topic was a real nailbiter for me, frankly. As to your remark about "...all of the things no one wants to hear," I can only say: My sentiments, exactly! 100%
Such honesty….and so appreciated
Thank you for speaking the words of support and exercising the notion of love, including self-love within this very difficult path of caregiving for a loved one on their path to their end. The psychological implications are bigger than I can put in words. Thank you for speaking of this.
Married to my husband for 31 years, separated for 8 years. We have two young adult children, Our daughter recently had her first child, so she has her hands full. My son 25 has moved home in the last year to help me take care of their Dad, but works during the day. I am the main care giver and I HATE him, this is so bad. If I wasn't here this would fall to my children and I am not going to let that happen. Looking back on the past I can see clearly that he has had this disease for at least 10 yrs. I just thought he was just being an asshole (and he is) . His reasoning is out the window, doesn't know that he is still married and has children but can still do ADR. He tell people, I am the woman they have hired to cook. The repetition of his stories is driving me crazy. How long is this going to last, or how long am I going to last?
Thank you for your insights..yes I have..been through these things..seen so many different season of alz for 10 years..yes I'm tired..
I would add suggestions to caregivers to look for moments of JOY and to write them down and keep in a jar, to remind oneself it's not all bad and keep from being consumed by only negative emotions
Very topical for my family right now. Thanks for sharing the voice of experience.
I'm honestly sorry that anyone can relate. You know what I mean? At the same time, sometimes, this is what life gives us. Don't hesitate to let me know if there are specific concerns or issues you're encountering that you can't find resources on. If it's within my range of experiences / wheelhouse (and it may not be), I'd be happy to help if I can. And... Please know you and you family have all my very best wishes.
@@alzheimersproof8211 Thanks, I will. Just knowing it's not us/me helps, as it's always said - and turns out to be true! ✊🏼
You are fantastic!!! You are a big help to me!!!!!!
The reason you & the older gentleman don't understand each other's "nursing home" decision is because they are two completely different situations. I have done both. 20 years ago I was called on to move out of state leaving behind my home, my husband, friends, my job, my own life to care for my mom who was bedridden from a stroke for 2 1/2 yrs. My elderly dad promised that she would never be sent to a nursing home. I had no life of my own and felt like she was dying & taking me with her. Yes I was very resentful & I got so depressed. ( if it was my decision I would have admitted her to a N.H.)
20 yrs later I am again the caretaker of my husband with Alzhimers. Completely different scenario: Don't have to leave my home, my marriage mate, my friends or my job (I'm now retired). He's in middle stage & so far very tolerable & I don't have any thoughts of a N.H. I have hopes of keeping him at home till death. (OF course no one can predict the future. What's relatively easy now, could change for something I can't handle, I know.) Anyway, way different if you're asked to completely leave your life behind to care for them.❤
Thank you for sharing your perspectives. Let me say that I'm sorry about your mom and husband. You bring up a hugely important point regarding -- what we might call -- the difference in the "existential situations." It's virtually undeniable that a person's relationship with a parent is relevantly different than their relationship with a spouse. I'll have to reflect on this further. But, offhand, it occurs to me that differences could (and probably will) ramify. For example, a person's relationship with one parent might be strikingly different from their relationship to the other parent. And both parental and spousal relationships run the gamut from highly dysfunctional to healthy and positive. And we haven't even begun to factor in other familial or non-familial relationships for which a person could be called on to perform a caretaking role (in one capacity or other). An obvious case would be for a cognitively impaired child. But I'm sure there are people who have had to care for siblings -- or even close (non-romantic) friends. So, these are really thought-provoking complications that you mention. Thanks, again, for commenting. All good wishes for your caregiving which, I gather, is ongoing.
Thank you for your great advice. Very helpful as we are entering the end stage and need more help.
Thank you for watching. I'm sorry for your family's difficulties!
imagine all of the people who don't yet have a diagnosis yet are dealing with these behaviors.. such as in bvFTD where personality, inhibition and manners are the first to go.
Hey thanks so much for your information & time. I can use all I can get. My dad has just gone to a nursing home. This his second one.over the past 4years he has lost an eye.Shattered his left bottom half of his leg.Then he broke his left femur. After those two surgeries he has full blown Lewy Bodies Dementia. It got to the point where I could no longer maneuver to change his soil pull ups dress him ect. You are right it has been the most difficult, heart renching time in my life . I would do anything to trade places or just ease his pain. We have watched as he lost everything, all that made him feel like the man he was 😢.Now he is an hour away. I can’t get to him . My mother was diagnosed 2018 with dementia. When my father was home his nightly rants (I think) caused my mom to retreat to her bedroom and seclude herself. Ultimately pushing her disease further along. I am not sure of that? Would you happen to know if strife and yelling cause the dementia to progress
I'm so sorry! Both parents overlapping add layers of difficulty. Off hand, I recall that *isolation* and *seclusion* can precipiate (or accelerate) cognitive decline. I'm not sure about the effects of "stressors" and negative emotions. Intuitively, they'd raise cortisol levels. And that may well be a contributing factor. I'll make a note of your question, and try to look into it. You have all my best wishes in the meantime!
I am so sorry for you. 🙏
Your insights and suggestions are spot on, thank you for sharing your experience
Thanks for such a great video
All 3 generations before me had Alzheimers. I’m trying to figure out how to hasten my death when it’s my turn. I’m got some time😀
I am going through this exact situation now with my husband who has mixed dementia we are 5years down the line nearly I, I too have had those thoughts that it would be kinder for him and myself if the Lord took him instead of him having to get even more confused etc but then I think how I would miss him even though I am exhausted with all of it wondering when will it end 😔
You have my sympathies. It's absolutely exhausting; there's no question about it. I purposely avoided tackling the religious / spiritual dimensions of these issues in the video, because of the wide variation of perspectives. However, one vital component is (surely) one's perspective on suffering. In some traditions, affliction has (the potential to give) purifying effects on the soul. In my dad's case, for example, I believe that God had a purpose amidst all the agony. Tho, admittedly, it's hard to fathom. You and your husband have all my best wishes.
@@alzheimersproof8211yes I agree there must be a reason thank you for your response ❤
I'm so worried my 45 year old son has wet brain syndrome it's just me I don't know what to do
Yes you have said what I’m saying my husband had a heart op a few years ago and it would have been better if he had died because I because the poor man is so sad because he is aware of his condition and what it is doing to me I’m old also limited what I can do My dear daughter is considering a granny flat on her home for us both to help .Now her husband is having treatment for cancer so that is on hold So talk about pushing a rock up a hill . Thanks for touching on this.
I'm sorry sorry -- to all involved. I wish there were something stronger I could say. I've been considering tackling possible spiritual angles to these matters. But it could be polarizing. Some say that there's a purpose or reason to everything. Times like these test that sort of faith. Please know that my heart goes out to your family.
My husband is just lying in bed he can not move my Hart is breaking taking him to n hospis this week do I the right thing 😢
I'm so sorry! You're not alone :(
One day I was shopping and I was gonna buy some flowers at the grocery store. I remembered oh no he’s in hospice they’ve only given him a few days. I’m gonna have a lot of flowers. I did not buy any. That was a few months ago lol we’re still hanging on.
Horrible end of life. My husband was a stranger....
It's so tragic :( I'm sorry!
Weather report like that analogy 🙄 how's he /she doing today
So treu i ask for help not to get insane
What do you do if no family member can take care of them?
OMG.! Call the police ??? How crazy an advice 😢
I've done this with my mother in law several times. She is in stage 6 vascular dementia and has psychotic episodes that are dangerous. He'll yes, call the police and have them taken to ER for meds. You and your family need to survive!
@NoFloridaMan my father died of dementia but we never ever thought to call the police. If absolutely necessary you call the medics. What can police officers do with a mentally impared person ? Push the patient on the ground and maybe break an arm as it happened to that poor lady with alzheimer who was accused of stealing a few dollars worth of garments in a megastore ? The police officers were fired and the agency had rightly paid some millions in damage. If this is what you want go ahead.
Thank you for this video. I care for my husband of 53 years who now has Lewy Body Dementia.
Hey thanks so much for your information & time. I can use all I can get. My dad has just gone to a nursing home. This his second one.over the past 4years he has lost an eye.Shattered his left bottom half of his leg.Then he broke his left femur. After those two surgeries he has full blown Lewy Bodies Dementia. It got to the point where I could no longer maneuver to change his soil pull ups dress him ect. You are right it has been the most difficult, heart renching time in my life . I would do anything to trade places or just ease his pain. We have watched as he lost everything, all that made him feel like the man he was 😢.Now he is an hour away. I can’t get to him . My mother was diagnosed 2018 with dementia. When my father was home his nightly rants (I think) caused my mom to retreat to her bedroom and seclude herself. Ultimately pushing her disease further along. I am not sure of that? Would you happen to know if strife and yelling cause the dementia to progress ? I was not sure but suspected that. That was part of my decision to place him in a nursing home. I am very curious to know because now my brother who lives in another state has begun to talk about their depleting bank accounts to my mother. I have told that can not be good for her mental state. Do you happen to know if that is true? Well thank you again for everything.
Yes. Her dementia was probably furthered along from the stress.