"83 years old, living at home with age-related decline, alzheimer's/dementia, anxiety, depression, and parkinson's disease."
Yes, it will drive one crazy. I found Teepa Snow videos on YouTube that were very helpful. She's an expert in dementia and caregiving and provides great strategies for interacting with our LOs who are affected. This way you and your Mom can both have more peaceful and productive engagement throughout your time together. You are the only one that can change, so these ideas will really help.
It is so tough, and I couldn't myself ever have done hands on care 24/7 despite being a nurse and loving it. My brain would not have survived. It is where their brains are at, but for the caregiver it can be water torture. I think that you MUST find time for yourself to get a break from this, even if it amounts to time with a Licensed Social Worker in private counseling practice. I don't see how otherwise our own brains can survive it.
There is a time, also, when dementia has gone to this level, that I think in faciliity care is the only way to survive. We are not Saints and the job description for Sainthood isn't a good one.
I am so sorry. I wish I had a better answer to give you.
It has been shown that adults who spend a lot of time around someone with dementia or significant cognitive decline start exhibiting signs of it themselves. So yes, it negatively affects the normal brain.
You need to start doing something mentally stimulating for yourself. Start slow so as to not overwhelm yourself. Try crosswords, Sudoku, reading poetry, learning how to cook or bake something you'd like to eat, take up a new hobby, etc. But decide to set aside at least 15-minutes a day for yourself.
if it is hard to read (a screen or a book) try reading outloud. Your mouth and ears will encounter new words that are not part of your usual day. Poetry is meant to be read aloud, I think. Get someone to stay with her while you go out..if only for an hour. Find a safe quiet place to park, set your phone alarm, lock your doors, and get comfy. You might sleep..but even time with nothing to do but focus on relaxing can ease some of your stress.Or have a good cry in this setting.
Yes, I think repeating the same things 10,000x can negatively affect the caregivers brain. It's almost like torture. Which means YOU need to step back from 24/7 caregiving for dementia, it's too much! Sign your lo up for daycare, or hire in home help to give you respite, and look into Memory Care Assisted Living as an option. A few hours a DAY respite is what you need, imo. A few minutes is not Enough time for a bathroom break!
Your lo is not the only life that matters here. Yours does too! Please don't forget that as you attempt to be the saviour here.
Yes, it can make a caregiver loopy. Lot's of studies substantiate this,
IMO, that is why MC is the right place to be for a person who has dementia, they sit around telling the same stories over and over again and no one remembers what was said 5 minutes ago, it is all new to them, over and over again.
When I visit my step-mother in MC, that is exactly what happens, a lot of nodding goes on by me and the other patients.
1/2 hour of that and I am done, gotta go. i walk out the door and my step-mother doesn't even remember that I was there.
I believe your attitude has a lot to do with the impact of the repeated questions or comments. When our LO first begins displaying the repeated conversations, we are usually still expecting "normal" conversations which our LOs are not capable of anymore. Later the repeated conversations become a very visible symptom of ALL the cognitive declines and some of our frustrations boil over into our reactions to the repeated conversations. It's easier to cope with once you truly accept your LO cannot stop doing it and usually won't remember they have already asked this question a number of times. I started playing a mental game with myself: how can I word the answer a little bit differently this time?
One of the hardest transitions for me was giving up conversations about the family dynamics, politics, and books I had for a lifetime with my mother. We transitioned to conversations around the "historic" photos published in the paper and other topics in the paper. Mom still liked to view photos of her grand and great grands doing stuff and would always comment on how grown up they looked. I would use photos from old albums; Mom could usually tell several stories around the time and/or place of the photo. Her long term memory was intact, so I got some wonderful stories of her life growing up with her siblings and my older brothers' adventures.
For intellectual stimulation I kept up on my reading (always a favorite passtime) and called an aunt, cousin, nephew, or friend on a daily basis. I actually made a list and rotated through about once a month. I also began posting on several message boards: here for caregiving issues, some on local politics, a different board or forum for national politics, and even facebook for general keeping in touch with family and friends. It is different. In a way it is accepting one loss of a relationship before their death; one of many you will face as your LO's decline into illness and old age continues. If you can find a way to accept this isn't right and it isn't fair, but it is what life is at this moment you will be able to let go of the anger quicker, endure and sometimes enjoy the moment (between lots of deep breathing timeouts). I found a quick trip to the picture window or porch with a cup of coffee helped a lot.
It also works (somewhat) to say, "I don't know." There's a lot we don't have to know when the person isn't going to remember it for even 30 seconds anyway.
Two things usually happen when stories are repeated over and over. The caregiver either becomes numb or goes crazy from all of the repetitive stories.
Some people are able to ‘nod and say yes’ to the millionth time they heard something, others will ‘scream and go crazy.’ It’s hard to ignore this behavior day after day.
The flip side though is just as sad, if a person is isolated, they have nothing ‘new’ to talk about. If they are placed in a facility they are able to have interactions with others and the caregiver can visit on their own terms.
You do have to acknowledge that they are not going to change their behavior, so you will need to arrange for others to be their caregivers, placement in a facility or take frequent breaks to have a break from the monotony.
You are absolutely right. First a person goes numb from the constant repetitive stories and questions. That's usually when it's a good idea to bring in outside help, because the going crazy part usually follows. No one wants to place a "loved one" in managed care. Their reasons are their own. For some there is a financial incentive to be the caregiver so everything the elder has doesn't get spend down to nothing. Others because their family extorts the heinous promise from them that they won't put a LO in a "home". So they become care slaves and often die themselves before the person they've sworn to care for.
Yes, of course the same repeating over and over again can have negative effects on the caregiver's brain. You know one of the tactics used to extract information from terrorists and other criminals is to repeat the same thing over and over again. Police do this during the interrogation of a crime suspect because it wears a person down and messes with their mind. I was an in-home caregiver mostly to elderly with various forms of dementia for 25 years. I had to stop doing that line of work and went into the business and administration end of it. For my own sake I got out of it. I did learn over those many years, that you do not repeat or answer the same question or two over and over again. You answer or ask two or three times and then you completely ignore that topic. No more discussion on it. This is the only remedy other than distraction onto something else (which doesn't always work) that can break a dementia loop. Caregivers' minds can get adversely affected when they are subjected to other things like constant complaining, constant negativity,ungratefulness, constant misery, gaslighting, and constant fight instigating from the elder they have to spend so much time with. It is for these very reasons why my mother and I cannot live together and I cannot provide her care. I did it for several years. The constant misery, instigating, negativity, complaining, gaslighting, and villifying of me reached the boiling point and I am certain that something tragic would have happened if I didn't go. She has homecare aides now and other arrangements have been made. So, most definitely 'YES' caregivers' brains can be adversely effected by their experience. Their physical health can be too. Something like 40% or 50% of caregivers die before the people they are caregivers to.
Repeating the same thing over and over and over....
It is like the Chinese water torture technique. Water is dripped on the victim's head, slowly, continuously, one drop at a time. ..drip...drip... drip...until the victim goes mad.
Sometimes teenagers do this to their parents too! LOL 😆 I remember my parents telling me that if I played my favorite rock albums one more time that they would break them! I know that I drove my mom nuts playing my Led Zeppelin albums a bazillion times!
Actually, I DO think there is an effect. For me, I’ve noticed it more in conversations where I embed the answer in the question. “ when you went with Mary to the store, did you have fun.” “Shall we drive around the lake like we did yesterday?” I sometimes find myself doing that with friends. As well, repeating information part way through the conversation, in case a reminder is necessary…which of course it isn’t with friends. And no matter how often I remind myself…”for her, every time is the first time,” I fear I will go crazy. welcome to the vortex.
I have the same problem, but with my sister. She would ask me the same questions three times a day, so I wrote down the complete answers on a piece of paper that I keep near her. When she asks again, I tell her to check her answer sheet. She's finally, after about six months, started checking the paper for answers instead of asking. Alleluia!!
Try to arrange breaks for yourself where you are with other sound-minded adults, so you don't lose the habit of being able to function with peers. Ask for help with aides and adult daycare.
Jennybayer: Your post brings to mind a conversation/more of a debate that my mother, my DH (Dear Husband) and I had about the difference between a teapot and a tea kettle. After it went on for a hour and a half unresolved, we shut down the discussion, else it drove us mad.
Oh, how familiar! I used to help care for an old British lady who was sliding into dementia. Mostly I read to her in the afternoons. One book had the word "blackguard" (pronounced "blaggard") in it (they were all British books from her youth) and she demanded to know what I, an ignorant American, thought that word meant. I said "cad?" and she went into a screaming fit about how wrong that was. I tried to apologize, be soothing, etc. but the argument went on and on until she ordered me out of her house permanently. She then told other caregiver friends that she had left me some books in her will (I collect books and she had some beautiful old first editions) but as a result of this "elder abuse" by me she was striking me from her will and her life.
At the time I took it quite personally, but time has made me understand that it's a brain disease issue. A few months earlier she was not like that. After I left the caregiver group (she didn't have family here) the others started complaining of the same thing -- idiotic arguments that went on and on and sometimes resulted in screaming fits. Fairly soon she had to go into a home, where she died of other physical issues.
You can't have a real conversation with someone who has brain atrophy. I only talk about the weather, her pretty sweater, how good the lunch is and that is about it. Even those limited topics cause her to repeat...is it cold outside? what's it doing outside? Did it rain? repeat, repeat, repeat. Some days I handle her repeats ok and some days I cut the visit short because it drives me mad.
There are other residents in my moms memory care unit who don't speak at all. Once I took note of that, I tell myself that I am still glad that she can speak to me and I take solace in that even if it is a repeated sentence that has no meaning. As we near the last segment of moms long journey, I am happy to still hear her voice.
Your feelings are normal. Stay a little longer on the good days, cut the visit short on the bad days. Your mental health is important too!
"83 years old, living at home with age-related decline, alzheimer's/dementia, anxiety, depression, and parkinson's disease."
Yes, it will drive one crazy. I found Teepa Snow videos on YouTube that were very helpful. She's an expert in dementia and caregiving and provides great strategies for interacting with our LOs who are affected. This way you and your Mom can both have more peaceful and productive engagement throughout your time together. You are the only one that can change, so these ideas will really help.
There is a time, also, when dementia has gone to this level, that I think in faciliity care is the only way to survive. We are not Saints and the job description for Sainthood isn't a good one.
I am so sorry. I wish I had a better answer to give you.
You need to start doing something mentally stimulating for yourself. Start slow so as to not overwhelm yourself. Try crosswords, Sudoku, reading poetry, learning how to cook or bake something you'd like to eat, take up a new hobby, etc. But decide to set aside at least 15-minutes a day for yourself.
Get someone to stay with her while you go out..if only for an hour. Find a safe quiet place to park, set your phone alarm, lock your doors, and get comfy. You might sleep..but even time with nothing to do but focus on relaxing can ease some of your stress.Or have a good cry in this setting.
Your lo is not the only life that matters here. Yours does too! Please don't forget that as you attempt to be the saviour here.
IMO, that is why MC is the right place to be for a person who has dementia, they sit around telling the same stories over and over again and no one remembers what was said 5 minutes ago, it is all new to them, over and over again.
When I visit my step-mother in MC, that is exactly what happens, a lot of nodding goes on by me and the other patients.
1/2 hour of that and I am done, gotta go. i walk out the door and my step-mother doesn't even remember that I was there.
One of the hardest transitions for me was giving up conversations about the family dynamics, politics, and books I had for a lifetime with my mother. We transitioned to conversations around the "historic" photos published in the paper and other topics in the paper. Mom still liked to view photos of her grand and great grands doing stuff and would always comment on how grown up they looked. I would use photos from old albums; Mom could usually tell several stories around the time and/or place of the photo. Her long term memory was intact, so I got some wonderful stories of her life growing up with her siblings and my older brothers' adventures.
For intellectual stimulation I kept up on my reading (always a favorite passtime) and called an aunt, cousin, nephew, or friend on a daily basis. I actually made a list and rotated through about once a month. I also began posting on several message boards: here for caregiving issues, some on local politics, a different board or forum for national politics, and even facebook for general keeping in touch with family and friends. It is different. In a way it is accepting one loss of
a relationship before their death; one of many you will face as your LO's decline into illness and old age continues. If you can find a way to accept this isn't right and it isn't fair, but it is what life is at this moment you will be able to let go of the anger quicker, endure and sometimes enjoy the moment (between lots of deep breathing timeouts). I found a quick trip to the picture window or porch with a cup of coffee helped a lot.
Some people are able to ‘nod and say yes’ to the millionth time they heard something, others will ‘scream and go crazy.’ It’s hard to ignore this behavior day after day.
The flip side though is just as sad, if a person is isolated, they have nothing ‘new’ to talk about. If they are placed in a facility they are able to have interactions with others and the caregiver can visit on their own terms.
You do have to acknowledge that they are not going to change their behavior, so you will need to arrange for others to be their caregivers, placement in a facility or take frequent breaks to have a break from the monotony.
You are absolutely right. First a person goes numb from the constant repetitive stories and questions. That's usually when it's a good idea to bring in outside help, because the going crazy part usually follows.
No one wants to place a "loved one" in managed care. Their reasons are their own. For some there is a financial incentive to be the caregiver so everything the elder has doesn't get spend down to nothing. Others because their family extorts the heinous promise from them that they won't put a LO in a "home". So they become care slaves and often die themselves before the person they've sworn to care for.
You know one of the tactics used to extract information from terrorists and other criminals is to repeat the same thing over and over again. Police do this during the interrogation of a crime suspect because it wears a person down and messes with their mind.
I was an in-home caregiver mostly to elderly with various forms of dementia for 25 years. I had to stop doing that line of work and went into the business and administration end of it. For my own sake I got out of it.
I did learn over those many years, that you do not repeat or answer the same question or two over and over again. You answer or ask two or three times and then you completely ignore that topic. No more discussion on it. This is the only remedy other than distraction onto something else (which doesn't always work) that can break a dementia loop.
Caregivers' minds can get adversely affected when they are subjected to other things like constant complaining, constant negativity,ungratefulness, constant misery, gaslighting, and constant fight instigating from the elder they have to spend so much time with.
It is for these very reasons why my mother and I cannot live together and I cannot provide her care. I did it for several years. The constant misery, instigating, negativity, complaining, gaslighting, and villifying of me reached the boiling point and I am certain that something tragic would have happened if I didn't go.
She has homecare aides now and other arrangements have been made.
So, most definitely 'YES' caregivers' brains can be adversely effected by their experience. Their physical health can be too. Something like 40% or 50% of caregivers die before the people they are caregivers to.
It is like the Chinese water torture technique. Water is dripped on the victim's head, slowly, continuously, one drop at a time. ..drip...drip... drip...until the victim goes mad.
Sometimes teenagers do this to their parents too! LOL 😆 I remember my parents telling me that if I played my favorite rock albums one more time that they would break them! I know that I drove my mom nuts playing my Led Zeppelin albums a bazillion times!
I sometimes find myself doing that with friends. As well, repeating information part way through the conversation, in case a reminder is necessary…which of course it isn’t with friends.
And no matter how often I remind myself…”for her, every time is the first time,” I fear I will go crazy.
welcome to the vortex.
-Hire a Visiting Angel or a companion through Care.com, with experience with a dementia patient.
At the time I took it quite personally, but time has made me understand that it's a brain disease issue. A few months earlier she was not like that. After I left the caregiver group (she didn't have family here) the others started complaining of the same thing -- idiotic arguments that went on and on and sometimes resulted in screaming fits. Fairly soon she had to go into a home, where she died of other physical issues.
There are other residents in my moms memory care unit who don't speak at all. Once I took note of that, I tell myself that I am still glad that she can speak to me and I take solace in that even if it is a repeated sentence that has no meaning. As we near the last segment of moms long journey, I am happy to still hear her voice.
Your feelings are normal. Stay a little longer on the good days, cut the visit short on the bad days. Your mental health is important too!