Hello! Charlie sounds like a lovely man. I have been looking around on different information sites to see about this very thing myself. My DH has had heart issues over thirty years with chronic arrhythmia . He had been on Anti A drugs and recently had his third ablation, which helps, but has not stopped it completely. They now know there are certain dementia's that can happen with these issues. Over the last few years and more recently, it seems our conversations have been as you describe, like Abbot and Costello. I said that just the other day. I feel as if I can not connect at times. Mid conversation he will answer me with another topic all together, having nothing to do with the conversation. If I remind him what we are talking about , he will either not remember or say , "I heard everything you said but thought about this." It can be something he was engaged in until that happens. Sometimes he just seems puzzled by it or laughs it off. There are other examples where we are talking and it seems all fine, he will be talking, pause, then totally out of the blue an answer to another topic as if we were in conversation about it and I should know what he is talking about. I'll ask what he is talking about and he becomes annoyed that I do not know what he means until I tell him to explain it to me. It is not only happening with me. His friend's tell him that he is so random, he needs to do one thing at a time, to slow down or they think he is being funny. Some of them get annoyed with him, not knowing that something is changed. I believe his business has suffered from this as well. He can converse for a long period of time and all of a sudden you realize a shift has taken place to another subject. He will joke about it when confronted. I don't find it funny so much. I am frustrated and not a little frightened by what is happening.He seems unaware at times and other times very aware that his thinking is not right. He calls it his senior moments. These are not senior moments. Other times you would not think anything is going on, that maybe it was the meds he was on , or tired but it has escalated. I need to find out what is happening but I am reluctant to make this a topic of conversation since being diagnosed would be for my own reasons. I feel he would be devastated by this being named. He has a yearly C scan coming up for the heart area, which also has an aneurysm they need to keep an eye on. I am wondering if it is possible to request a brain scan with this to see if there is something going on there. Would it show? My patience wears thin at times, and I feel distant from him in the frustration of the conversations. It feels lonely. I don't know where this is heading . I understand the feelings you explained, it is a nether world at times. A new way to understand someone who was once a partner or friend. They may still be there, but there is loss of togetherness. I was not prepared for this aspect of it or the other forms it takes. I still have a lot going on that is good and healthy. But as this progresses, there is a frustration and argument that takes place inside; to be kind, to be patient, to understand and not take it personally, that something is going on beyond his control. But then I feel that if he just pays more attention, he can stay on track, that it isn't in the brain, just a bad habit that has grown. Emotions are not logical. I would like to know more about this conversational style. How to deal with it, especially in a beginning situation, how to have it diagnosed. If they can do nothing for this, why confront this with the person? I fear shaming him, a proud and intelligent man who had so much control. I see this ebbing away little by little. Sometimes I am fine, sometimes irritated , but lonely in our conversation was surprising. I know I didn't help you, but I understand what you are saying and feel for you. I'm so sorry you are dealing with this loss in your loved one.
I can really relate to Phizphiz. As my husband's Alzheimer's increases, I find it increasingly difficult to communicate. I miss our real conversations. In my mind I've dubbed him, "the master of the non sequitur," since I often make a comment and he responds with a totally inappropriate remark. Yes, it is indeed lonely and sad to realize that the person we fell in love with and married is no longer here.
I have a 40 year old son that has Williams Syndrome. Developmentaly delayed (mentally) and have dealt with it since his birth, so it is a "normal situation" for 40 years. For me, my husband's Alzheimer's (diagnosed 1 year / 3 months ago) is something new to me and taking some adjusting to. I am working on it, but neither my husband or I would have never expected this disease. Both are adjusting and I'm having to realize how devastating this is for him too. Hope and pray we all can get through this. Thank - you all
Yes, we are not alone - in plenty of company. Always good to know, and does help in some small way... but at the end of the day, we are still sad, frustrated, lonely, exhausted, drained. (Sometimes even creeped out a bit, if I may add that one to the list.) Lifting all of you up in my constant prayers to get through each day! God bless our elders, and God bless all caregivers.
On one hand I'm glad to hear all these comments and on the other it is so sad and frustrating. I'm going through all these thing withy husband 's Alzheimer's. Gone are the days of a "real" conversation. I too find myself just not talking as much. It's so lonely. Constantly repeating or making sure if he's doing a task he's doing the task. He always asks "what can I do to help? " so I give him just one simple job. Next thing I know he quits or is doing something totally different. If I tell him " just weed the dandelions- he gets upset or somewhat angry . I'd rather he just watched t.v. By mid-day I'm so drained mentally
Llamalover47 I thought she may have had some dementia, from stroke or other reason. Because you mentioned the repetition of stories over and over. It doesn't matter, you cared for her in her declining years, and that is admirable. I know you must miss her very much.
Llamalover47; I understand. Alzheimer's is a cruel disease, as is any form of dementia. My husband is the one, who has it, and it is difficult to see his memories disappear, now his long term is going, it was diagnosed in 2008', tho we knew it was more than just getting forgetful. He is 77 this month.
My mother also had dementia. But it was just her short term, I think may have been caused by a tumor from her breast cancer having metastasized into her bones and brain. She was in a nursing home, as at that time we couldn't care for her. She was a lovely kind woman, and worked so very hard all her life. She had grace, and when I asked her once, why she was so patient, she said there was no point in making other people suffer, by being bad tempered. She was 87 when she passed. I miss her every day. I learned from her dementia, and I am just trying to do what I would want to have done for me if I were in the same condition. Soon I will have to make more serious decisions. I know that everyone on this website faces much the same......thank you too..
To Llamalover47; I know how tiring it is to listen to the same stories over and over, you need some time for yourself, to decompress. To them, they are telling the story for the first time. It is their way of remembering, but the short term memory is gone, never to come back. Dear, their brain is dying little by little, cannot be regenerated. And after a while the stories change, they lose bits and pieces. How sad for us and them, it's not getting better. Just do the best you can for you and him. And pray that by that time maybe they aren't so aware of their loss. Try to remember you're life with them and all they did for us, your life with them. Try to be respectful and considerate. Remember, they don't..... remember.
And don't be so hard on yourself if you lose it!! Because believe me I've been there, and still am!! Research and get some help when you can join a support group, locally there should be one you can go to.
I like the comments from Denise56 about trying to make the connection and the person who said "enter their world". It's a different time/space continuum. If you are task-driven, it can be exhausting.
My mother has been in NH for 2.5 years now. She's 89 with parkinsons, numerous strokes over the years and dementia. She can barely speak ... the few words she can get out are garbled ... and has really gone down hill the last little while, hallucinating and delusional. She has been checked for a UTI.
When I visited a couple of days ago she said that morning two men dressed in black came into her room, put her on the floor and pushed her bed way against the wall. One was saying #1, the other #6. I suggested they were playing bingo which made her smile. She'd been determined she had a cat for some time and it was real. Two weeks at supper she bent down to give "the cat" some chicken and over she went, wheelchair and all - taken to ER for 10 stitches to a gash in her arm. I bought her 2 plush toys, a kitten and a pig which seemed to give her comfort and she hasn't seen "the cat" since. She's also worried that when my father comes to stay over the staff won't know who he is. He passed 16 years ago. She has the occasional lucid moment but things are deteriorating by the day.
With nicer weather now, the best I can do when I visit is push her outside onto the patio, point out the flowers, birds and victorian statues/whimsies to hopefully take her mind off her delusions. There is no hope of any conversation and I feel she is nearing the end of her time. She's very well taken care of and all I can do is go day by day feeling that I'm basically waiting for the other shoe to drop.
I too, am in the same situation my wife has dementia to were she sometimes don't know me and many other things at times I just want to walk out at times. but I still have to work and trying to find a live in or daycare is ruff she goes to her sisters house till I can pick her up when I get off. I'm on my fourth hip revision so I still have to do the laundry, dinner, cleaning, all the bills and shopping so living with a dementia person is a challenge.
Sorry, but it is frustrating trying to figure out what word they are really trying to say. Last night Mom and I were watching TV. I was playing Solitare on my pad. It was close to her bedtime and she started to get up and said "what do I
You do with the cards". What cards? She kept saying it word for word. Tried to figure what she really meant. Of course she got mad because I didn't know what she was saying. She was still upset this morning. So we had a talk. She repeated word for word what she had said the night before. Then she said she just wanted to go to bed. It took me a long while but we think we figured it out. She was trying to ask me how much longer on my card game because she was ready for bed. It made her happy we figured it out but it wasn't easy.
This makes me SO SAD. Two delightful people wanting the same thing - to chat together in a companionable way ... yet misunderstanding one another. From your own example ... "The crows are eating the bread I threw out," I said. Charlie responded, "Those turkeys look small, they must be starving this winter." you appear to be missing the point. Charlie is talking about birds and so were you and he was talking about hunger/feeding and so were you. I really cannot see what your problem is ... he is joining in with your conversation the best way he can. He's got the jist of what you're saying. Please try and be in the moment with him ... The 'him' he is today. Because a time will come when he will have no language at all and you will think wistfully of today when he talked about turkeys instead of garden birds. Lets is all give each other a little wiggle room and lets us who still can, be kind to the other.
Thank you, ALL for your thoughtful comments. It's one day at a time, one moment at time. Just doing the best I can. AM starting to have trained help coming in couple times a month so my husband and I can get away - visit our grandchildren/children and/or just be ALONE for a day!!! It IS necessary to recharge physically, emotionally and spiritually and I have neglected ME for far too long. It's comforting to know there are others who actually understand - and care - this conversation has been SO supportive! Thank you!
Thank you for sharing your experiences with Charlie. I had to chuckle several times, because had you not mentioned Charlie's name, I would have thought for sure it was my mother! I'm relatively new at being a caregiver and I notice the rules can change daily or even hourly. When you mentioned his responding with a totally confusing reply to your comment really hit home with me. I stand there sometimes thinking, is it me, why don't I understand the reply? My mother will look at me like I'm the one who has lost it.(lol) There are some days when I can deal with it and move on, but there are other days when just the thought of having to get up and start all over gets me depressed. But, once again, thank you for sharing your wisdom. I don't feel so alone when I read articles like yours.
To brenda338, mom was a wanderer, and living with just or me, dad and my DH was not the answer. We visited her nearly every day. We found a home style nursing home with just 5-7 women and ample caregivers who loved, bathed and understood her. That may be something you could do. It's been three years now w/ o mom, and 30 days w/o dad now, and I miss them.
Oldestof3: I can relate! I would find myself angry with my mother since she didn't make a decision sooner to move and it inconvenienced me tremendously! Had to move out of state to live with her!
brenda338...I guess we all lose it once in awhile. Mom woke me up 4 times last night saying she was ready to get up. The first 3 times I asked if she had to go to the bathroom and then patiently and quietly explained it was too soon to get up and we needed to lie back down. The 4th time...well, sorry to say I was not so patient or quiet. I'm not exactly proud of how I responded that last time but I won't beat myself up about it. I'm not perfect and I'm doing the best I can and most of the time I feel I do pretty good by her. And I don't think there is anything you can do about the guilt....it's just there and will always be there. Take a deep breathe and be kind to yourself.
to Brenda338: It sounds like it might be time for you to find some other help, whether it be someone to come in for a couple of hours or maybe even a facility that can care for your mother. Yes we all would LOVE to have our parents with us, to help them, but under different circumstances. Don't feel guilty if you need time for yourself, IF you fall apart, then what? who will take care of your parent, will you end up in a facility sooner than your parent. My father went into NH back in August, my mother no longer capable of taking care of him, the constance calling for her, the losing things, the wandering, everything takes it toll. Whomever you pray to will NOT judge you for relinquishing your duty to take care of your parent, they would rather you be safe/healthy as well as your parent. I work so I couldn't take care of my parent, and honestly I would rather someone that knows how to lift, get medicine into them, bath them, etc to take care of them instead of me trying to do stuff and actually physically getting hurt myself. So please find someone else to help or find a nursing care facility that can help.
For those of you on Facebook, there's an amazing group called Memory People. All the people are caregivers as well as a few patients who have been diagnosed with dementia or early onset dementia. It's a life line of support.
"Those turkeys look small, they must be starving this winter." When he said this I bet he was just at a loss for the word crow even though you had just said it. And even if it wasn't winter when he said it, he may have been relating back to when feeding the birds was to help them through the winter. It's frustrating at times, but when my mom does things like this, I quickly try to relate what she said to what I said and if I can't find a connection, I just agree with her and repeat the statement back at her like: "You're right those turkeys do look small and I hope the bread will keep them from starving." Then add to the conversation with something like, "Do you think they like the bread." The best advice I received was from Bob DeMarco who is the founder of the Alzheimers Reading Room who said that he 'enters Alzheimer's world' before he begins a conversation with his mother. It has helped me not to make facial expressions that show my mom I don't understand her. It might help you to know that as confusing it is for you when you are trying to talk with your husband, that's how confusing it is for him. God bless you and remember, as Teepa Snow has told us, BREATHE.
Just had a breakdown tonight over the constant miscommunications, same stories thousands of times, "lost" items/money/schedule - I actually brewed a cup of coffee for myself without the coffee cup under the Keurig! I am an only child - mother is living with us - vascular dementia AND Alz. So frustrated! Feel guilty when I get annoyed - feel guilty for taking an afternoon off and leaving her with my husband (my responsibility - not his), she's physically healthier than she's ever been while I am falling apart. And, it's not going to get any better..........
for someone without insurance for nursing home, check into medicare or medicaid, contact an Elder attorney, they are a great help. My parents didn't have insurance either for NH coverage, got Elder attorney, my father now meets medicaid approval.
42 Comments
First Oldest
First
Conversations with a Dementia Patient Can Be Frustrating
Charlie sounds like a lovely man.
I have been looking around on different information sites to see about this very thing myself.
My DH has had heart issues over thirty years with chronic arrhythmia . He had been on Anti A drugs and recently had his third ablation, which helps, but has not stopped it completely.
They now know there are certain dementia's that can happen with these issues.
Over the last few years and more recently, it seems our conversations have been as you describe, like Abbot and Costello. I said that just the other day.
I feel as if I can not connect at times. Mid conversation he will answer me with another topic all together, having nothing to do with the conversation. If I remind him what we are talking about , he will either not remember or say , "I heard everything you said but thought about this." It can be something he was engaged in until that happens. Sometimes he just seems puzzled by it or laughs it off. There are other examples where we are talking and it seems all fine, he will be talking, pause, then totally out of the blue an answer to another topic as if we were in conversation about it and I should know what he is talking about. I'll ask what he is talking about and he becomes annoyed that I do not know what he means until I tell him to explain it to me.
It is not only happening with me. His friend's tell him that he is so random, he needs to do one thing at a time, to slow down or they think he is being funny. Some of them get annoyed with him, not knowing that something is changed. I believe his business has suffered from this as well. He can converse for a long period of time and all of a sudden you realize a shift has taken place to another subject. He will joke about it when confronted.
I don't find it funny so much. I am frustrated and not a little frightened by what is happening.He seems unaware at times and other times very aware that his thinking is not right. He calls it his senior moments. These are not senior moments. Other times you would not think anything is going on, that maybe it was the meds he was on , or tired but it has escalated.
I need to find out what is happening but I am reluctant to make this a topic of conversation since being diagnosed would be for my own reasons. I feel he would be devastated by this being named.
He has a yearly C scan coming up for the heart area, which also has an aneurysm they need to keep an eye on. I am wondering if it is possible to request a brain scan with this to see if there is something going on there. Would it show?
My patience wears thin at times, and I feel distant from him in the frustration of the conversations. It feels lonely.
I don't know where this is heading .
I understand the feelings you explained, it is a nether world at times. A new way to understand someone who was once a partner or friend. They may still be there, but there is loss of togetherness. I was not prepared for this aspect of it or the other forms it takes. I still have a lot going on that is good and healthy. But as this progresses, there is a frustration and argument that takes place inside; to be kind, to be patient, to understand and not take it personally, that something is going on beyond his control. But then I feel that if he just pays more attention, he can stay on track, that it isn't in the brain, just a bad habit that has grown. Emotions are not logical.
I would like to know more about this conversational style. How to deal with it, especially in a beginning situation, how to have it diagnosed. If they can do nothing for this, why confront this with the person? I fear shaming him, a proud and intelligent man who had so much control. I see this ebbing away little by little. Sometimes I am fine, sometimes irritated , but lonely in our conversation was surprising.
I know I didn't help you, but I understand what you are saying and feel for you. I'm so sorry you are dealing with this loss in your loved one.
It doesn't matter, you cared for her in her declining years, and that is admirable. I know you must miss her very much.
My mother also had dementia. But it was just her short term, I think may have been caused by a tumor from her breast cancer having metastasized into her bones and brain. She was in a nursing home, as at that time we couldn't care for her. She was a lovely kind woman, and worked so very hard all her life. She had grace, and when I asked her once, why she was so patient, she said there was no point in making other people suffer, by being bad tempered. She was 87 when she passed. I miss her every day. I learned from her dementia, and I am just trying to do what I would want to have done for me if I were in the same condition. Soon I will have to make more serious decisions. I know that everyone on this website faces much the same......thank you too..
Try to remember you're life with them and all they did for us, your life with them. Try to be respectful and considerate. Remember, they don't..... remember.
And don't be so hard on yourself if you lose it!! Because believe me I've been there, and still am!!
Research and get some help when you can join a support group, locally there should be one you can go to.
When I visited a couple of days ago she said that morning two men dressed in black came into her room, put her on the floor and pushed her bed way against the wall. One was saying #1, the other #6. I suggested they were playing bingo which made her smile. She'd been determined she had a cat for some time and it was real. Two weeks at supper she bent down to give "the cat" some chicken and over she went, wheelchair and all - taken to ER for 10 stitches to a gash in her arm. I bought her 2 plush toys, a kitten and a pig which seemed to give her comfort and she hasn't seen "the cat" since. She's also worried that when my father comes to stay over the staff won't know who he is. He passed 16 years ago. She has the occasional lucid moment but things are deteriorating by the day.
With nicer weather now, the best I can do when I visit is push her outside onto the patio, point out the flowers, birds and victorian statues/whimsies to hopefully take her mind off her delusions. There is no hope of any conversation and I feel she is nearing the end of her time. She's very well taken care of and all I can do is go day by day feeling that I'm basically waiting for the other shoe to drop.
You do with the cards". What cards? She kept saying it word for word. Tried to figure what she really meant. Of course she got mad because I didn't know what she was saying. She was still upset this morning. So we had a talk. She repeated word for word what she had said the night before. Then she said she just wanted to go to bed. It took me a long while but we think we figured it out. She was trying to ask me how much longer on my card game because she was ready for bed. It made her happy we figured it out but it wasn't easy.
From your own example ...
"The crows are eating the bread I threw out," I said. Charlie responded, "Those turkeys look small, they must be starving this winter."
you appear to be missing the point. Charlie is talking about birds and so were you and he was talking about hunger/feeding and so were you. I really cannot see what your problem is ... he is joining in with your conversation the best way he can. He's got the jist of what you're saying. Please try and be in the moment with him ... The 'him' he is today. Because a time will come when he will have no language at all and you will think wistfully of today when he talked about turkeys instead of garden birds.
Lets is all give each other a little wiggle room and lets us who still can, be kind to the other.
It's frustrating at times, but when my mom does things like this, I quickly try to relate what she said to what I said and if I can't find a connection, I just agree with her and repeat the statement back at her like: "You're right those turkeys do look small and I hope the bread will keep them from starving." Then add to the conversation with something like, "Do you think they like the bread."
The best advice I received was from Bob DeMarco who is the founder of the Alzheimers Reading Room who said that he 'enters Alzheimer's world' before he begins a conversation with his mother. It has helped me not to make facial expressions that show my mom I don't understand her.
It might help you to know that as confusing it is for you when you are trying to talk with your husband, that's how confusing it is for him.
God bless you and remember, as Teepa Snow has told us, BREATHE.