ND18, the responses are all very good. The thing that you wrote that stuck out in my mind is that your mother never showed the type of caring that you needed. I wanted to stop and validate (excuse the cliche') your feeling. I do believe that there are people who are not capable of feeling the type of love that children need. They can feed and house them, take care of them when they are sick, but the sweet type of love is not there. I don't know why some people either don't feel or don't show love.
If that is the case with your mother, she will not begin to feel it now that she has dementia. So it may be good to stop looking to her for what you hoped might be there. There is love all around you, though, so I hope you find it in other people. This doesn't mean that you have to stop loving and caring for your mother, only not to think her not returning the feeling has anything to do with you. You sound like a daughter who is seriously capable of love, and you sound like you're doing your best to take care of her. Go easy on yourself since it's not you. It's her.
Dementia slowly kills the brain off...they may not remember who you are at times. But by showing your love for them in little ways, they will feel secure and loved and will respond to it. My sweet mom was always a kind caring person. When the dementia took a drastic turn she was very mean and spiteful. I agonized over the change in her and took it so personal at times. After learning so much about this drastic disease it became clear to me that this was not mom talking..the disease had made her this way. I prayed for her and did what I could to make her feel loved. As hard as it was at times to do it...I made sure that every night before she went to sleep, I would kiss her on the cheek and told her that I loved her. She would smile or giggle..bet after a bit she felt the love, and started to be loving back. Some nights when she would wake up in the middle of the night we would just sit at the edge of the bed...I would rub her back and she would lay her head on my shoulder. Not a word was spoken..we just held each other. I love and miss her so much. I have purposely stayed out of the stores today on Valentines day because I don't want to cry when I pass the cards. I always gave mom flowers and a card. I am feeling a little sad today...cherish the times you have with your loved ones. God Bless.
I have dementia--FTD and LBD--going on 6 years now. I visually and congnitively know and remember my wife, my grandchildren, my children, my siblings, and I love each, some more than others. Yet I also encounter people who know me but who I don't or no longer know--people who I have forgotten their names, their faces and everything about them but they know me. When reminded I frequently remember, often well, things we did or enjoyed together and sometimes I know and remember them at the same time.
Confusing isn't it? --that's the world of dementia: my wife and I recently met our son to pick up our grandaughter for a weekend visit; while I was sitting in the car my wife and son talked outside; he bent down to talk to me and I visually recognized the 33 year old man he has become, but my mind told me he was supposed to be a teenager. That's memory and dementia!
I find, however, my capacity for loving others is unchanged; indeed it is larger than I ever imagined. Love is caring, and is not necessarily romantic. As I mentioned, my love for my wife and family is unchanged. I have come to realize my love and respect for God is greater than I ever previously thought possible, as is my dependence on and faith in Him, His Son and His Spirit. And I have a deep and abiding love for many other people; people who I have never seen, nor have I ever met--people such as yourselves with whom I have only had contact through the internet or facebook, yet with whom I feel a closeness and kinship, the kind only experienced through love for another person (e.g., through facebook I am acquainted with a couple in Canada who I would love to meet; I truly care for them, and love them, as much as any other member of my family. I only regret we will never actually come face to face in this life anyway)
Going places? I prefer to stay in my den, in my recliner, with my little carepartner - a 14 year old dachsund. My wife is a 36 year RN (great advantage when I have to go to see a doctor). She is a marketer for a psychiatric hospital and travels throughout west Texas: from Amarillo, to Lubbock, to Presidio and Del Rio, to Pecos and Van Horn, to Killeen and Ft. Hood, to Austin. Home base is in the middle, San Angelo, and we live just outside Midland. She covers an area larger than most states (check it out on a map) and is often gone for 2-3 days at a time! Yet I am fortunate enough, at this point, remain home, alone. Dr appointments are worked around her schedule. We have a couple of neighbors I can call on if I need something badly (I've only had to do that once). I can still drive the couple of miles to the Dollar General or the convenience store for milk or dog food, but I prefer to stay at home.
We used to be devout church goers (Sunday AM, PM and midweek). I led singing, prayers, and served communion while my wife taught a class of kindergartners and first grade. Church attendance is still extremely important to both of us, but I rarely go now. I've found, though I enjoy the services as a whole and usually feel edified by being there, I tend to get confused and/or lost in the bible classes and sermons (I wish the teachers/preachers, when they cross reference other parts or verses, would finish with one before going to another), and sometimes the other attendees make me feel overcrowded which leads paranoa and disorientation, all of which results in general confusion, discomfort and "isn't it over yet?" Not worth the risk of disrespecting the Lord or any of his servants; He knows I haven't forgotten Him.
I usually force myself to go with my wife to pick up our granddaughters for a visit or to go to the grocery store; otherwise, I usually stay at home. Why? It's safe! I've had too many experiences of not knowing where we/I are; I've been lost, disoriented and paniced in stores, while standing next to my wife, too many times. I'm concerned about becoming lost while talking my care partner for a daily walk (I wear a medicalert dog tag and use a wonderful cell phone app--Watch Over Me--I highly recommend it) and though I am able to, I don't drive anywhere (including backing the car out of the driveway) unless I absolutely have to (might wind up somewhere I don't want to be and not know how to get back). In short, I have a tendency toward paranoia and panic (also parts of dementia) and prefer not to take the risks.
In addition, I've reached a stage where I sleep--12 to 14 hours at night and generally a 1-2 hour nap in the afternoon (sometimes after being up for only a couple of hours); and I'm becoming more and more incontinent of bowel and bladder (I carry extra depends in both cars). Those latter two things (sleeping and incontinence) are much more embarrassing than not recognizing someone.
I hope this all adds some clarity to your concerns ND-18. Dementia (all kinds), regardless of it's source (mine was triggered by surgical anesthesia in 2010) is a very complex disease, not restricted solely to memory, which is where most people, including us, tend to focus and expect problems. It is one l-o-n-g roller coaster ride that one must learn to enjoy; for there IS LIFE after dementia, and the patient and the caregiver should NEVER GIVE UP.
NEVER! Even the most demented person knows when they are being treated with love, respect and kindness. Dementia is a disease of the brain, not of the heart! Never does the heart stop feeling emotions on some level. As dementia progresses a person becomes more susceptible to emotions. When an angry or frustrated person holds an infant, the infant often becomes upset - dementia folks are just the same! Long and short of it: way after the ears and brain stop communicating the heart continues to feel!
I don't know if it will help to realize that even the most fundamental abilities and skils are eventually lost to the person with severe dementia- It may not be they don't care but they don't recognize, remember, or know how to show caring. I'm right now grieving my mom being unable to read, unable to dial me on a cell phone, and unable to make judgements about what she thinks she sees (her vision is poor). She still recognizes everyone and appreciates visits and getting new clothes and her favorite sugarfree candies and such.
Thank you both for your answers. They both make sense. I especially like the first one because I care so much about certain people and things that I can't imagine ever not caring any more, not as long as I have as much wits about me as she has. I have met all kinds of people during my lifetime but my mother is the first person, to my knowledge, that I've known that doesn't care about anything or anyone, not even herself, so I thought maybe the dementia was causing it. She has never been a person to show much expression of love but she always talked about it as if she felt it so I thought she did. I always thought I got my ideas about love from her. But now I see no signs of caring for anything or anyone, not even herself, in any way shape or form. A few year ago, someone (one of those pillars of the church) hurt me so bad that I was practically heartbroken. When I tried to talk to her about it (I expected some comfort), she just kept looking straight ahead at the TV, saying nothing. When I tried to get her to make a response, she said she didn't know what I wanted her to say. I bet most people could think of something to say if someone hurt their child or any loved one as much as that person had hurt me. I honestly believe that she would be just as satisfied with a mechanical robot here instead of me if it was able to do everything that needs to be done. And I don't think she would care if I sent her to the nursing home. I am doing everything in my power to keep her here at home, which I've explained to her, but she doesn't seem to care one way or the other. I was so frustrated and upset with her this morning that I was beside myself. She is deteriorating fast, both physically and mentally, and she doesn't seen to care, because all she does in sit in her chair with her hands in her lap and stare at the TV. No matter how much I beg or hollar, she won't even try to do something to help herself, something as simple as gettig up and walking with her walker back and forth through the house except when she has to go to the toilet. I told her this morning that she's worse off than Stephen Hawking (a severely disabled scientist) because even though he can't walk or talk, except through a computer, he still CARES. She doesn't. No matter what I say, she won't give any response. I told her that treating me like that shows exactly how much I mean to her - NOTHING. Still no response. When her eyes got so bad that it wasn't easy to see, instead of trying to use a magnifying glass (said it had a glare on it), she quit reading. If it isn't the dementia, what could possibly make a person so totally empty of feeling?? If she didn't have alzheimers, I'd take her to a psychiatrist.
Sue,I think you are beating your self up to much,and possibly expecting to much from your mom.You have to stop expecting a sick person to react the way you see fit.My dad did not have ALZ ,BUT I did struggle with what you are going through.From what I understand it is not the same with each person that is sick,you can do the best you can do and thats it.I remember shamefully for the first time my dad acted [weird] I said are you tripping on acid.The second time,I said your losing it daddy.When I realized how sick he was,I felt very guilty,but I responded out of ignorance.The last few months he stopped watching TV,HE stopped petting his best friend Lucky dog,WHICH was always one of the first things he asked about.MY daughter his granddaughter was the last thing he talked about-Take care of his little angel,he said and died 10 minutes later.
I think it depends on the type of dementia, but a geriatric expert could help you determine that. Some types of dementia will cause the personality of the sufferer to develop a kind of blunted effect, so it SEEMS like they don't love or care like they once did. But it is just the disease of the brain causing this.....inside they still do love and care. There is still a heart and a soul in there, and dignified care is still what they need. After a while, we the caregivers get used to not "getting back" what we used to "get" from our parents who have dementia. It helps to recall the distinct memories we have of the parent, as his/her younger and healthier self--- mentally whole, compassionate, and empathetic.
To be honest, this comes and goes, but I found familiarity breeds contempt, and I am praised everytime I visit Mom now, whereas I was demonized when I had the round-the-clock care of her.
My dad had Alz and I don't think he ever quit feeling. He always smiled at me when he saw me and held my hand. I was a daddy's girl, I think he knew who I was. One evening I bent down to kiss him and said, see ya later dad, I'm leaving and wanted to say goodbye. He looked me in the eye and said in a couple of weeks we'll all be saying goodbye. Two weeks to the day and hour, he passed away. I truly believe his mind was still working, he was just "locked up" in there somewhere. Dad had always been a gentle person but the last few yrs of his life, he fought my mother with a vengeance. He was sweet as pie to everyone else but her. We think he was getting back at her but who knows and it doesn't matter now. I miss him terribly.
If that is the case with your mother, she will not begin to feel it now that she has dementia. So it may be good to stop looking to her for what you hoped might be there. There is love all around you, though, so I hope you find it in other people. This doesn't mean that you have to stop loving and caring for your mother, only not to think her not returning the feeling has anything to do with you. You sound like a daughter who is seriously capable of love, and you sound like you're doing your best to take care of her. Go easy on yourself since it's not you. It's her.
Confusing isn't it? --that's the world of dementia: my wife and I recently met our son to pick up our grandaughter for a weekend visit; while I was sitting in the car my wife and son talked outside; he bent down to talk to me and I visually recognized the 33 year old man he has become, but my mind told me he was supposed to be a teenager. That's memory and dementia!
I find, however, my capacity for loving others is unchanged; indeed it is larger than I ever imagined. Love is caring, and is not necessarily romantic. As I mentioned, my love for my wife and family is unchanged. I have come to realize my love and respect for God is greater than I ever previously thought possible, as is my dependence on and faith in Him, His Son and His Spirit. And I have a deep and abiding love for many other people; people who I have never seen, nor have I ever met--people such as yourselves with whom I have only had contact through the internet or facebook, yet with whom I feel a closeness and kinship, the kind only experienced through love for another person (e.g., through facebook I am acquainted with a couple in Canada who I would love to meet; I truly care for them, and love them, as much as any other member of my family. I only regret we will never actually come face to face in this life anyway)
Going places? I prefer to stay in my den, in my recliner, with my little carepartner - a 14 year old dachsund. My wife is a 36 year RN (great advantage when I have to go to see a doctor). She is a marketer for a psychiatric hospital and travels throughout west Texas: from Amarillo, to Lubbock, to Presidio and Del Rio, to Pecos and Van Horn, to Killeen and Ft. Hood, to Austin. Home base is in the middle, San Angelo, and we live just outside Midland. She covers an area larger than most states (check it out on a map) and is often gone for 2-3 days at a time! Yet I am fortunate enough, at this point, remain home, alone. Dr appointments are worked around her schedule. We have a couple of neighbors I can call on if I need something badly (I've only had to do that once). I can still drive the couple of miles to the Dollar General or the convenience store for milk or dog food, but I prefer to stay at home.
We used to be devout church goers (Sunday AM, PM and midweek). I led singing, prayers, and served communion while my wife taught a class of kindergartners and first grade. Church attendance is still extremely important to both of us, but I rarely go now. I've found, though I enjoy the services as a whole and usually feel edified by being there, I tend to get confused and/or lost in the bible classes and sermons (I wish the teachers/preachers, when they cross reference other parts or verses, would finish with one before going to another), and sometimes the other attendees make me feel overcrowded which leads paranoa and disorientation, all of which results in general confusion, discomfort and "isn't it over yet?" Not worth the risk of disrespecting the Lord or any of his servants; He knows I haven't forgotten Him.
I usually force myself to go with my wife to pick up our granddaughters for a visit or to go to the grocery store; otherwise, I usually stay at home. Why? It's safe! I've had too many experiences of not knowing where we/I are; I've been lost, disoriented and paniced in stores, while standing next to my wife, too many times. I'm concerned about becoming lost while talking my care partner for a daily walk (I wear a medicalert dog tag and use a wonderful cell phone app--Watch Over Me--I highly recommend it) and though I am able to, I don't drive anywhere (including backing the car out of the driveway) unless I absolutely have to (might wind up somewhere I don't want to be and not know how to get back). In short, I have a tendency toward paranoia and panic (also parts of dementia) and prefer not to take the risks.
In addition, I've reached a stage where I sleep--12 to 14 hours at night and generally a 1-2 hour nap in the afternoon (sometimes after being up for only a couple of hours); and I'm becoming more and more incontinent of bowel and bladder (I carry extra depends in both cars). Those latter two things (sleeping and incontinence) are much more embarrassing than not recognizing someone.
I hope this all adds some clarity to your concerns ND-18. Dementia (all kinds), regardless of it's source (mine was triggered by surgical anesthesia in 2010) is a very complex disease, not restricted solely to memory, which is where most people, including us, tend to focus and expect problems. It is one l-o-n-g roller coaster ride that one must learn to enjoy; for there IS LIFE after dementia, and the patient and the caregiver should NEVER GIVE UP.
Hope this helps. God bless you all.
She has never been a person to show much expression of love but she always talked about it as if she felt it so I thought she did. I always thought I got my ideas about love from her. But now I see no signs of caring for anything or anyone, not even herself, in any way shape or form. A few year ago, someone (one of those pillars of the church) hurt me so bad that I was practically heartbroken. When I tried to talk to her about it (I expected some comfort), she just kept looking straight ahead at the TV, saying nothing. When I tried to get her to make a response, she said she didn't know what I wanted her to say. I bet most people could think of something to say if someone hurt their child or any loved one as much as that person had hurt me.
I honestly believe that she would be just as satisfied with a mechanical robot here instead of me if it was able to do everything that needs to be done. And I don't think she would care if I sent her to the nursing home. I am doing everything in my power to keep her here at home, which I've explained to her, but she doesn't seem to care one way or the other.
I was so frustrated and upset with her this morning that I was beside myself. She is deteriorating fast, both physically and mentally, and she doesn't seen to care, because all she does in sit in her chair with her hands in her lap and stare at the TV. No matter how much I beg or hollar, she won't even try to do something to help herself, something as simple as gettig up and walking with her walker back and forth through the house except when she has to go to the toilet. I told her this morning that she's worse off than
Stephen Hawking (a severely disabled scientist) because even though he can't walk or talk, except through a computer, he still CARES. She doesn't. No matter what I say, she won't give any response. I told her that treating me like that shows exactly how much I mean to her - NOTHING. Still no response.
When her eyes got so bad that it wasn't easy to see, instead of trying to use a magnifying glass (said it had a glare on it), she quit reading.
If it isn't the dementia, what could possibly make a person so totally empty of feeling?? If she didn't have alzheimers, I'd take her to a psychiatrist.
Dad had always been a gentle person but the last few yrs of his life, he fought my mother with a vengeance. He was sweet as pie to everyone else but her. We think he was getting back at her but who knows and it doesn't matter now. I miss him terribly.
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