Jill

I have some ideas. I am on my way to Colorado and will be traveling today. I will either give you a call today or we can set up some time to talk.

I am sorry this is so hard right now and it definitely is really fucking hard! You are doing the best you can with a really stressful situation. I'm so sorry.

Love you,

Paige

On Thu, Aug 29, 2024, 10:43?AM Jill via <jnienhiser=[email protected]> wrote:

Hi sisters,

I am struggling and I don't know whether to talk to a friend, ask for a circle of support (a zoom call with some of you?), get counseling, all of the above.

Mom has memory loss and cognition problems, severe anxiety, a limited lifestyle, and loneliness. So she wants to talk, but has nothing to talk about. And she has a million anxieties and memory problems. All that combines resulting in her repeat things over and over, asking things over and over.

Unlike Dane, I work from home so I'm here with her all day every day. I wake up with my patience bank topped off from the night off sleeping, and then it's chipped away at all day long. Some days I make it to evening before I get snappish, other days it wears out earlier. She also may have some "sundowning" making her more prone to confusion and anger in the evening.

Today is one of those "other days." It's only 9:22 am today and already I've gotten into a fight with her. I'm not nice, apparently want her to never speak, don't like anything about her, basically hate her, and probably never loved her. I pointed out that I moved to Lexington to take care of her, but she does not (at this moment) believe that. I guess I just moved from a city full of art, culture, theater, restaurants to a town of 4500 only for the big house I could buy. I'm going to move out and never come see her. She makes up these stories and they aren't true, but she hears anything I say that isn't 100% positive as critical of her.

Intellectually, I KNOW that she can't remember she's asked the same thing 3 times in 5 minutes, or the other thing 15 times today, or whatever. When we got snappish this morning, I made the mistake of saying that I just wanted her to understand, empathize a little, how hard it is to be with someone with memory loss, how it could be irritating to answer the same thing over and over. I should know better, she cannot hear or understand this. Doesn't believe she does it because every time she asks anything is the first time to her. To her (when we are fighting about it), she is just making conversation. (When we are not fighting, she is clearly anxious and asking again and again, worried about what day it is, what she has to do, when she has to be ready, whether she's taken her pills, and a million minor household things she sees and believes have to be taken care of right then.) Instead, it's all about her--she can't help it. Why don't I sympathize with how lonely she is, how she needs someone to talk to, etc. (Her lonelinees, and need for help, is why I moved home, but I'm not succeeding.)

I recognize in myself that from first moving in and beginning to experience this every day, I have been putting up my guard, doing things verbally and nonverbally trying to discourage conversation a lot of the time. I feel like my brain has been pricked full of pinholes having to revisit constantly things that don't matter (to me, and not really to her although she thinks they are important), that I have already put a plan in place to resolve ("Harold is coming to fix the screen next week...Harold is coming to fix the screen next week..."), or can't prioritize yet amidst everything else going on (what are we going to do about a few dead trees, who's going to do snow removal this winter, etc.). I have MUCH less time to my own uninterrupted thoughts, and am consequently struggling to keep all the balls I'm juggling in the air. The farm needs attention for sure and that's an area I have most neglected during this.

I am hopeful that when I move and start coming over here for visits, which will likely be almost daily, probably often more than once a day, that I can put on a happy face and be nothing but sweet, loving, attentive, positive, talkative, etc. Anything but that is likely to make her think I'm sullen, don't want her to talk, etc.

So for the next three weeks while stil living here, and for the future when I am just coming over frequently, I need some coping skills, and I'm still swamped with so many responsibilities even as certain big things have resolved (moving, selling my Virginia house, buying my Lexington house). So I'm just not sure what help to get and where.

Any thoughts?

Thanks,

Jill

From the extraordinary heart and mind of

Jill Nienhiser

via jnienhiser@...

Hi Jill,

Oh my heart and mind that sounds incredibly difficult.

A random idea came to me: would your mom like a pet? A cat or bunny to keep her company?

I'm also wondering what elder programs might be available? I know Jesse's grandmother had someone come over from the library once a week to bring large-print books and chat for a bit. Senior centers often arrange for visitors, as well. Or music? Maybe a singing lesson at the house? Something to look forward to??

Or maybe she could be dropped off at the senior center a few afternoons a week for bingo or something to give you a break? Or maybe a drop-off at your sister's? Creating chunks of time for my brain to think unto itself, without requests or interruptions, has been really important for me in parenthood. It creates stepping stones for me to get thru the crazy-making times.

With my kids we use the system of when the sound machine is on outside my study, it means I'm with a client and they cannot come in. It creates a non-verbal reminder not to interrupt. Maybe a sign would be helpful in the case of your mom so that she doesn't need to remember the system.

Best of luck!

Meggie

On Thursday, August 29, 2024 at 10:43:07 AM EDT, Jill via groups.io <jnienhiser@...> wrote:

Hi sisters,

I am struggling and I don't know whether to talk to a friend, ask for a circle of support (a zoom call with some of you?), get counseling, all of the above.

Mom has memory loss and cognition problems, severe anxiety, a limited lifestyle, and loneliness. So she wants to talk, but has nothing to talk about. And she has a million anxieties and memory problems. All that combines resulting in her repeat things over and over, asking things over and over.?

Unlike Dane, I work from home so I'm here with her all day every day. I wake up with my patience bank topped off from the night off sleeping, and then it's chipped away at all day long. Some days I make it to evening before I get snappish, other days it wears out earlier. She also may have some "sundowning" making her more prone to confusion and anger in the evening.

Today is one of those "other days." It's only 9:22 am today and already I've gotten into a fight with her. I'm not nice, apparently want her to never speak, don't like anything about her, basically hate her, and probably never loved her. I pointed out that I moved to Lexington to take care of her, but she does not (at this moment) believe that. I guess I just moved from a city full of art, culture, theater, restaurants to a town of 4500 only for the big house I could buy. I'm going to move out and never come see her. She makes up these stories and they aren't true, but she hears anything I say that isn't 100% positive as critical of her.

Intellectually, I KNOW that she can't remember she's asked the same thing 3 times in 5 minutes, or the other thing 15 times today, or whatever. When we got snappish this morning, I made the mistake of saying that I just wanted her to understand, empathize a little, how hard it is to be with someone with memory loss, how it could be irritating to answer the same thing over and over. I should know better, she cannot hear or understand this. Doesn't believe she does it because every time she asks anything is the first time to her. To her (when we are fighting about it), she is just making conversation. (When we are not fighting, she is clearly anxious and asking again and again, worried about what day it is, what she has to do, when she has to be ready, whether she's taken her pills, and a million minor household things she sees and believes have to be taken care of right then.) Instead, it's all about her--she can't help it. Why don't I sympathize with how lonely she is, how she needs someone to talk to, etc. (Her lonelinees, and need for help, is why I moved home, but I'm not succeeding.)

I recognize in myself that from first moving in and beginning to experience this every day, I have been putting up my guard, doing things verbally and nonverbally trying to discourage conversation a lot of the time. I feel like my brain has been pricked full of pinholes having to revisit constantly things that don't matter (to me, and not really to her although she thinks they are important), that I have already put a plan in place to resolve ("Harold is coming to fix the screen next week...Harold is coming to fix the screen next week..."), or can't prioritize yet amidst everything else going on (what are we going to do about a few dead trees, who's going to do snow removal this winter, etc.). I have MUCH less time to my own uninterrupted thoughts, and am consequently struggling to keep all the balls I'm juggling in the air. The farm needs attention for sure and that's an area I have most neglected during this.

I am hopeful that when I move and start coming over here for visits, which will likely be almost daily, probably often more than once a day, that I can put on a happy face and be nothing but sweet, loving, attentive, positive, talkative, etc. Anything but that is likely to make her think I'm sullen, don't want her to talk, etc.?

So for the next three weeks while stil living here, and for the future when I am just coming over frequently, I need some coping skills, and I'm still swamped with so many responsibilities even as certain big things have resolved (moving, selling my Virginia house, buying my Lexington house). So I'm just not sure what help to get and where.?

Any thoughts?

Thanks,

Jill

From the extraordinary heart and mind of

Jill Nienhiser

via jnienhiser@...

Thanks for the ideas. Susan and I have been suggesting a pet for two years but she keeps saying she is not ready. She's not that excited about my cat who is living here, although to be fair my cat has been wary of her walker, and so is not warm and loving but rather avoids her.?

Every other home activity we have tried, she says she is not interested in. Reading, adult coloring books, simple water coloring book, jigsaw puzzles, large print crosswords and circle words. She will watch a little news, maybe a game show, maybe one or two episodes of a sitcom. Doesn't have the focus or patience for a movie or a book. Will look at Facebook for 10 or 15 minutes once or twice a day.

She goes to church, bible study, and prayer service (Sun, Wed, Fri) at church every week; my aunt picks her up. My aunt tries to get her to go to the senior center for activities; usually mom won't but sometimes my aunt insists. For example my aunt volunteers to take the lunch donations once a week and takes my mom, and then my mom talks to people there. They do go together to eat the senior center lunch twice a month, when they have fried chicken, and when they have meatloaf, which seem to be the only meals they like, or at least the ones they like best. I am going to be angling to get her to go at least once a week for the lunch, once I am out of here. Hopefully then also staying a little while if there are activities after. They have a new director so I'm hopeful there will be more going on. The previous, lazy director acted like she was being paid to discourage use of the facilities, supposedly because she didn't want to have to straighten up after people played cards or whatever.?

If my aunt won't take her, I think I can arrange for them to pick her up. If she will let them. She doesn't seem to want anyone but relatives helping her. Mostly me, Susan, and my aunt (her sister).

She has several people who call regularly, even some daily: my sister, my aunt, my cousin, her old friend from high school, and two widow friends from church. When the phone rings she wants to know "Who is it?" and almost always wrinkles her nose. She doesn't want to talk to her. She talks too long. She only talks about herself. But if the person is one who asks questions or talks about other people mom knows, well, then they are too nosy or gossipy. She does?take most of these calls, "Ok fine, give me the phone, I'll get it over with." It sounds like she is enjoying these calls and they go on maybe 15 minutes typically.

From the extraordinary heart and mind of

Jill Nienhiser

via jnienhiser@...

On Thursday, August 29th, 2024 at 3:22 PM, Meggie via groups.io <meggiewinchell@...> wrote:

Hi Jill,

Oh my heart and mind that sounds incredibly difficult.

A random idea came to me: would your mom like a pet? A cat or bunny to keep her company?

I'm also wondering what elder programs might be available? I know Jesse's grandmother had someone come over from the library once a week to bring large-print books and chat for a bit. Senior centers often arrange for visitors, as well. Or music? Maybe a singing lesson at the house? Something to look forward to??

Or maybe she could be dropped off at the senior center a few afternoons a week for bingo or something to give you a break? Or maybe a drop-off at your sister's? Creating chunks of time for my brain to think unto itself, without requests or interruptions, has been really important for me in parenthood. It creates stepping stones for me to get thru the crazy-making times.

With my kids we use the system of when the sound machine is on outside my study, it means I'm with a client and they cannot come in. It creates a non-verbal reminder not to interrupt. Maybe a sign would be helpful in the case of your mom so that she doesn't need to remember the system.

Best of luck!

Meggie

On Thursday, August 29, 2024 at 10:43:07 AM EDT, Jill via groups.io <jnienhiser@...> wrote:

Hi sisters,

I am struggling and I don't know whether to talk to a friend, ask for a circle of support (a zoom call with some of you?), get counseling, all of the above.

Mom has memory loss and cognition problems, severe anxiety, a limited lifestyle, and loneliness. So she wants to talk, but has nothing to talk about. And she has a million anxieties and memory problems. All that combines resulting in her repeat things over and over, asking things over and over.?

Unlike Dane, I work from home so I'm here with her all day every day. I wake up with my patience bank topped off from the night off sleeping, and then it's chipped away at all day long. Some days I make it to evening before I get snappish, other days it wears out earlier. She also may have some "sundowning" making her more prone to confusion and anger in the evening.

Today is one of those "other days." It's only 9:22 am today and already I've gotten into a fight with her. I'm not nice, apparently want her to never speak, don't like anything about her, basically hate her, and probably never loved her. I pointed out that I moved to Lexington to take care of her, but she does not (at this moment) believe that. I guess I just moved from a city full of art, culture, theater, restaurants to a town of 4500 only for the big house I could buy. I'm going to move out and never come see her. She makes up these stories and they aren't true, but she hears anything I say that isn't 100% positive as critical of her.

Intellectually, I KNOW that she can't remember she's asked the same thing 3 times in 5 minutes, or the other thing 15 times today, or whatever. When we got snappish this morning, I made the mistake of saying that I just wanted her to understand, empathize a little, how hard it is to be with someone with memory loss, how it could be irritating to answer the same thing over and over. I should know better, she cannot hear or understand this. Doesn't believe she does it because every time she asks anything is the first time to her. To her (when we are fighting about it), she is just making conversation. (When we are not fighting, she is clearly anxious and asking again and again, worried about what day it is, what she has to do, when she has to be ready, whether she's taken her pills, and a million minor household things she sees and believes have to be taken care of right then.) Instead, it's all about her--she can't help it. Why don't I sympathize with how lonely she is, how she needs someone to talk to, etc. (Her lonelinees, and need for help, is why I moved home, but I'm not succeeding.)

I recognize in myself that from first moving in and beginning to experience this every day, I have been putting up my guard, doing things verbally and nonverbally trying to discourage conversation a lot of the time. I feel like my brain has been pricked full of pinholes having to revisit constantly things that don't matter (to me, and not really to her although she thinks they are important), that I have already put a plan in place to resolve ("Harold is coming to fix the screen next week...Harold is coming to fix the screen next week..."), or can't prioritize yet amidst everything else going on (what are we going to do about a few dead trees, who's going to do snow removal this winter, etc.). I have MUCH less time to my own uninterrupted thoughts, and am consequently struggling to keep all the balls I'm juggling in the air. The farm needs attention for sure and that's an area I have most neglected during this.

I am hopeful that when I move and start coming over here for visits, which will likely be almost daily, probably often more than once a day, that I can put on a happy face and be nothing but sweet, loving, attentive, positive, talkative, etc. Anything but that is likely to make her think I'm sullen, don't want her to talk, etc.?

So for the next three weeks while stil living here, and for the future when I am just coming over frequently, I need some coping skills, and I'm still swamped with so many responsibilities even as certain big things have resolved (moving, selling my Virginia house, buying my Lexington house). So I'm just not sure what help to get and where.?

Any thoughts?

Thanks,

Jill

From the extraordinary heart and mind of

Jill Nienhiser

via jnienhiser@...

On Aug 29, 2024, at 7:11?PM, Jill via groups.io <jnienhiser@...> wrote:

?

I meant to say, so while I would love for her to look forward to whatever it might be, right now, she does not look forward to things on her calendar.?

Instead, she seems to merely obsess about what day it is, what she has to do today at what time, what time she has to be ready to be picked up or for me to take her. The anticipation of the activity for a day seems stressful. All day long she rehearses. I have Bible Study at 7:00. Mert's picking me up at 6:45. I have to be ready at 6:45. What time is it? Oh I have plenty of time. Mert's picking me up at 6:45. She rarely seems to really enjoy whatever it is.?

I guess she doesn't ask "What day is it, what do I have to do today, what time to I have to be ready" etc. any more often on days when she actually has something scheduled, maybe it just feels like it. Because she looks ahead on her calendar and often is wrong about what day it is. I am just as often to hear her saying she has to get ready for Bible Study when that's on Wed and it's only Tue.?

She also typically expresses a desire not to go to these things although she goes anyway, often because my aunt "makes" her.

If she were not doing the thing, she would not be doing anything else at home. Rise, dress, coffee, breakfast, pills, calendar, news, check the mail or ask me to, computer, nap (but probably can't sleep), lunch, pills, calendar, computer, nap, dinner, pills, calendar, tv, bed. Here and there she does a little housework but more often wants me to do it on her schedule. Mostly endlessly circulating around the kitchen island, with side trips to bathroom, bedroom.

From the extraordinary heart and mind of

Jill Nienhiser

via jnienhiser@...

On Thursday, August 29th, 2024 at 5:54 PM, Jill via groups.io <jnienhiser@...> wrote:

Thanks for the ideas. Susan and I have been suggesting a pet for two years but she keeps saying she is not ready. She's not that excited about my cat who is living here, although to be fair my cat has been wary of her walker, and so is not warm and loving but rather avoids her.?

Every other home activity we have tried, she says she is not interested in. Reading, adult coloring books, simple water coloring book, jigsaw puzzles, large print crosswords and circle words. She will watch a little news, maybe a game show, maybe one or two episodes of a sitcom. Doesn't have the focus or patience for a movie or a book. Will look at Facebook for 10 or 15 minutes once or twice a day.

She goes to church, bible study, and prayer service (Sun, Wed, Fri) at church every week; my aunt picks her up. My aunt tries to get her to go to the senior center for activities; usually mom won't but sometimes my aunt insists. For example my aunt volunteers to take the lunch donations once a week and takes my mom, and then my mom talks to people there. They do go together to eat the senior center lunch twice a month, when they have fried chicken, and when they have meatloaf, which seem to be the only meals they like, or at least the ones they like best. I am going to be angling to get her to go at least once a week for the lunch, once I am out of here. Hopefully then also staying a little while if there are activities after. They have a new director so I'm hopeful there will be more going on. The previous, lazy director acted like she was being paid to discourage use of the facilities, supposedly because she didn't want to have to straighten up after people played cards or whatever.?

If my aunt won't take her, I think I can arrange for them to pick her up. If she will let them. She doesn't seem to want anyone but relatives helping her. Mostly me, Susan, and my aunt (her sister).

She has several people who call regularly, even some daily: my sister, my aunt, my cousin, her old friend from high school, and two widow friends from church. When the phone rings she wants to know "Who is it?" and almost always wrinkles her nose. She doesn't want to talk to her. She talks too long. She only talks about herself. But if the person is one who asks questions or talks about other people mom knows, well, then they are too nosy or gossipy. She does?take most of these calls, "Ok fine, give me the phone, I'll get it over with." It sounds like she is enjoying these calls and they go on maybe 15 minutes typically.

From the extraordinary heart and mind of

Jill Nienhiser

via jnienhiser@...

On Thursday, August 29th, 2024 at 3:22 PM, Meggie via groups.io <meggiewinchell@...> wrote:

Hi Jill,

Oh my heart and mind that sounds incredibly difficult.

A random idea came to me: would your mom like a pet? A cat or bunny to keep her company?

I'm also wondering what elder programs might be available? I know Jesse's grandmother had someone come over from the library once a week to bring large-print books and chat for a bit. Senior centers often arrange for visitors, as well. Or music? Maybe a singing lesson at the house? Something to look forward to??

Or maybe she could be dropped off at the senior center a few afternoons a week for bingo or something to give you a break? Or maybe a drop-off at your sister's? Creating chunks of time for my brain to think unto itself, without requests or interruptions, has been really important for me in parenthood. It creates stepping stones for me to get thru the crazy-making times.

With my kids we use the system of when the sound machine is on outside my study, it means I'm with a client and they cannot come in. It creates a non-verbal reminder not to interrupt. Maybe a sign would be helpful in the case of your mom so that she doesn't need to remember the system.

Best of luck!

Meggie

On Thursday, August 29, 2024 at 10:43:07 AM EDT, Jill via groups.io <jnienhiser@...> wrote:

Hi sisters,

I am struggling and I don't know whether to talk to a friend, ask for a circle of support (a zoom call with some of you?), get counseling, all of the above.

Mom has memory loss and cognition problems, severe anxiety, a limited lifestyle, and loneliness. So she wants to talk, but has nothing to talk about. And she has a million anxieties and memory problems. All that combines resulting in her repeat things over and over, asking things over and over.?

Unlike Dane, I work from home so I'm here with her all day every day. I wake up with my patience bank topped off from the night off sleeping, and then it's chipped away at all day long. Some days I make it to evening before I get snappish, other days it wears out earlier. She also may have some "sundowning" making her more prone to confusion and anger in the evening.

Today is one of those "other days." It's only 9:22 am today and already I've gotten into a fight with her. I'm not nice, apparently want her to never speak, don't like anything about her, basically hate her, and probably never loved her. I pointed out that I moved to Lexington to take care of her, but she does not (at this moment) believe that. I guess I just moved from a city full of art, culture, theater, restaurants to a town of 4500 only for the big house I could buy. I'm going to move out and never come see her. She makes up these stories and they aren't true, but she hears anything I say that isn't 100% positive as critical of her.

Intellectually, I KNOW that she can't remember she's asked the same thing 3 times in 5 minutes, or the other thing 15 times today, or whatever. When we got snappish this morning, I made the mistake of saying that I just wanted her to understand, empathize a little, how hard it is to be with someone with memory loss, how it could be irritating to answer the same thing over and over. I should know better, she cannot hear or understand this. Doesn't believe she does it because every time she asks anything is the first time to her. To her (when we are fighting about it), she is just making conversation. (When we are not fighting, she is clearly anxious and asking again and again, worried about what day it is, what she has to do, when she has to be ready, whether she's taken her pills, and a million minor household things she sees and believes have to be taken care of right then.) Instead, it's all about her--she can't help it. Why don't I sympathize with how lonely she is, how she needs someone to talk to, etc. (Her lonelinees, and need for help, is why I moved home, but I'm not succeeding.)

I recognize in myself that from first moving in and beginning to experience this every day, I have been putting up my guard, doing things verbally and nonverbally trying to discourage conversation a lot of the time. I feel like my brain has been pricked full of pinholes having to revisit constantly things that don't matter (to me, and not really to her although she thinks they are important), that I have already put a plan in place to resolve ("Harold is coming to fix the screen next week...Harold is coming to fix the screen next week..."), or can't prioritize yet amidst everything else going on (what are we going to do about a few dead trees, who's going to do snow removal this winter, etc.). I have MUCH less time to my own uninterrupted thoughts, and am consequently struggling to keep all the balls I'm juggling in the air. The farm needs attention for sure and that's an area I have most neglected during this.

I am hopeful that when I move and start coming over here for visits, which will likely be almost daily, probably often more than once a day, that I can put on a happy face and be nothing but sweet, loving, attentive, positive, talkative, etc. Anything but that is likely to make her think I'm sullen, don't want her to talk, etc.?

So for the next three weeks while stil living here, and for the future when I am just coming over frequently, I need some coping skills, and I'm still swamped with so many responsibilities even as certain big things have resolved (moving, selling my Virginia house, buying my Lexington house). So I'm just not sure what help to get and where.?

Any thoughts?

Thanks,

Jill

From the extraordinary heart and mind of

Jill Nienhiser

via jnienhiser@...

Greetings Jill?

After reading this email which sounded way too much like my last year being with Ceil and I tried to make it everything that Ceil liked and the last two years she started to fall and she struggled with me to get up.

The last fall we did together on memorial Day. She laid on the floor and I put the pillows under her and helped her drag her to the bathroom when we finally got to the bathroom we realized we couldn't even get on the toilet. I asked and asked let's call an ambulance. I'll be fine in the morning, you go to bed I had to painful for me to see it all when I came down. She was still in the bathroom on the floor. I said we have to struggled out of the bathroom and as she was lying in front of the stove and the refrigerator she said OK call the ambulance .?

Ceil had a major accident and she never came home from hospital people I know, and Ceil knows started to go to the rehab centers where she was and visit. She started to get her strength back and it was obvious to everyone. I know that if she comes home. I am not strong enough to help her and she's not strong enough to stay standing up. You might know right now. I am crying and sad as I really trust you I wish we could live together, but she was on me. I was getting no satisfaction living with her. Shannon came to visit and we went to look for , what was available in the outside world we could stay happy. It was difficult and necessary for her health and well-being and mine I will also tell you that we ( the family and friends that stepped up ) and are still helping me get used to the fact Ceil doesn't live here anymore.?

It wasn't easy finding the exact right place for Ceil because (as you will find out ) there isn't an exact right place at this moment in time for Ceil her New Home at Nevins Health and nursing care was the best we could do that is still not good enough for me or her and we're making do.

Kate z

I have written this sharing with a lot of tears because this has been a very dramatic experience for me and I'm really glad that Shannon and I started early in finding a place where Ceil could be living in the future while she was recouping from her fall on the kitchen floor fall.?

Ceil was in the hospital recouping and than went to rehab for a few weeks after the fall and ?most of the time we looked for a place that was close to home. My drive of 10 minutes to visit with Ceil, is welcome?

Having friends and family close by I admit is key to my sanity in so many ways: Kelly and Diane and Meggie & Noreen & Shannon & Will have been back & forth multiple times in June, July, August for helping Ceil and myself.

And to?

Jill & Matooka I send You Hugs full of Love

Thank you for speaking your truth which gave me the courage to share mine

Kate z

Allowing for the Possibility

978 884-6712

Zehnergy.org

On Aug 29, 2024, at 7:11?PM, Jill via groups.io <jnienhiser@...> wrote:

?

I meant to say, so while I would love for her to look forward to whatever it might be, right now, she does not look forward to things on her calendar.?

Instead, she seems to merely obsess about what day it is, what she has to do today at what time, what time she has to be ready to be picked up or for me to take her. The anticipation of the activity for a day seems stressful. All day long she rehearses. I have Bible Study at 7:00. Mert's picking me up at 6:45. I have to be ready at 6:45. What time is it? Oh I have plenty of time. Mert's picking me up at 6:45. She rarely seems to really enjoy whatever it is.?

I guess she doesn't ask "What day is it, what do I have to do today, what time to I have to be ready" etc. any more often on days when she actually has something scheduled, maybe it just feels like it. Because she looks ahead on her calendar and often is wrong about what day it is. I am just as often to hear her saying she has to get ready for Bible Study when that's on Wed and it's only Tue.?

She also typically expresses a desire not to go to these things although she goes anyway, often because my aunt "makes" her.

If she were not doing the thing, she would not be doing anything else at home. Rise, dress, coffee, breakfast, pills, calendar, news, check the mail or ask me to, computer, nap (but probably can't sleep), lunch, pills, calendar, computer, nap, dinner, pills, calendar, tv, bed. Here and there she does a little housework but more often wants me to do it on her schedule. Mostly endlessly circulating around the kitchen island, with side trips to bathroom, bedroom.

From the extraordinary heart and mind of

Jill Nienhiser

via jnienhiser@...

On Thursday, August 29th, 2024 at 5:54 PM, Jill via groups.io <jnienhiser@...> wrote:

Thanks for the ideas. Susan and I have been suggesting a pet for two years but she keeps saying she is not ready. She's not that excited about my cat who is living here, although to be fair my cat has been wary of her walker, and so is not warm and loving but rather avoids her.?

Every other home activity we have tried, she says she is not interested in. Reading, adult coloring books, simple water coloring book, jigsaw puzzles, large print crosswords and circle words. She will watch a little news, maybe a game show, maybe one or two episodes of a sitcom. Doesn't have the focus or patience for a movie or a book. Will look at Facebook for 10 or 15 minutes once or twice a day.

She goes to church, bible study, and prayer service (Sun, Wed, Fri) at church every week; my aunt picks her up. My aunt tries to get her to go to the senior center for activities; usually mom won't but sometimes my aunt insists. For example my aunt volunteers to take the lunch donations once a week and takes my mom, and then my mom talks to people there. They do go together to eat the senior center lunch twice a month, when they have fried chicken, and when they have meatloaf, which seem to be the only meals they like, or at least the ones they like best. I am going to be angling to get her to go at least once a week for the lunch, once I am out of here. Hopefully then also staying a little while if there are activities after. They have a new director so I'm hopeful there will be more going on. The previous, lazy director acted like she was being paid to discourage use of the facilities, supposedly because she didn't want to have to straighten up after people played cards or whatever.?

If my aunt won't take her, I think I can arrange for them to pick her up. If she will let them. She doesn't seem to want anyone but relatives helping her. Mostly me, Susan, and my aunt (her sister).

She has several people who call regularly, even some daily: my sister, my aunt, my cousin, her old friend from high school, and two widow friends from church. When the phone rings she wants to know "Who is it?" and almost always wrinkles her nose. She doesn't want to talk to her. She talks too long. She only talks about herself. But if the person is one who asks questions or talks about other people mom knows, well, then they are too nosy or gossipy. She does?take most of these calls, "Ok fine, give me the phone, I'll get it over with." It sounds like she is enjoying these calls and they go on maybe 15 minutes typically.

From the extraordinary heart and mind of

Jill Nienhiser

via jnienhiser@...

On Thursday, August 29th, 2024 at 3:22 PM, Meggie via groups.io <meggiewinchell@...> wrote:

Hi Jill,

Oh my heart and mind that sounds incredibly difficult.

A random idea came to me: would your mom like a pet? A cat or bunny to keep her company?

I'm also wondering what elder programs might be available? I know Jesse's grandmother had someone come over from the library once a week to bring large-print books and chat for a bit. Senior centers often arrange for visitors, as well. Or music? Maybe a singing lesson at the house? Something to look forward to??

Or maybe she could be dropped off at the senior center a few afternoons a week for bingo or something to give you a break? Or maybe a drop-off at your sister's? Creating chunks of time for my brain to think unto itself, without requests or interruptions, has been really important for me in parenthood. It creates stepping stones for me to get thru the crazy-making times.

With my kids we use the system of when the sound machine is on outside my study, it means I'm with a client and they cannot come in. It creates a non-verbal reminder not to interrupt. Maybe a sign would be helpful in the case of your mom so that she doesn't need to remember the system.

Best of luck!

Meggie

On Thursday, August 29, 2024 at 10:43:07 AM EDT, Jill via groups.io <jnienhiser@...> wrote:

Hi sisters,

I am struggling and I don't know whether to talk to a friend, ask for a circle of support (a zoom call with some of you?), get counseling, all of the above.

Mom has memory loss and cognition problems, severe anxiety, a limited lifestyle, and loneliness. So she wants to talk, but has nothing to talk about. And she has a million anxieties and memory problems. All that combines resulting in her repeat things over and over, asking things over and over.?

Unlike Dane, I work from home so I'm here with her all day every day. I wake up with my patience bank topped off from the night off sleeping, and then it's chipped away at all day long. Some days I make it to evening before I get snappish, other days it wears out earlier. She also may have some "sundowning" making her more prone to confusion and anger in the evening.

Today is one of those "other days." It's only 9:22 am today and already I've gotten into a fight with her. I'm not nice, apparently want her to never speak, don't like anything about her, basically hate her, and probably never loved her. I pointed out that I moved to Lexington to take care of her, but she does not (at this moment) believe that. I guess I just moved from a city full of art, culture, theater, restaurants to a town of 4500 only for the big house I could buy. I'm going to move out and never come see her. She makes up these stories and they aren't true, but she hears anything I say that isn't 100% positive as critical of her.

Intellectually, I KNOW that she can't remember she's asked the same thing 3 times in 5 minutes, or the other thing 15 times today, or whatever. When we got snappish this morning, I made the mistake of saying that I just wanted her to understand, empathize a little, how hard it is to be with someone with memory loss, how it could be irritating to answer the same thing over and over. I should know better, she cannot hear or understand this. Doesn't believe she does it because every time she asks anything is the first time to her. To her (when we are fighting about it), she is just making conversation. (When we are not fighting, she is clearly anxious and asking again and again, worried about what day it is, what she has to do, when she has to be ready, whether she's taken her pills, and a million minor household things she sees and believes have to be taken care of right then.) Instead, it's all about her--she can't help it. Why don't I sympathize with how lonely she is, how she needs someone to talk to, etc. (Her lonelinees, and need for help, is why I moved home, but I'm not succeeding.)

I recognize in myself that from first moving in and beginning to experience this every day, I have been putting up my guard, doing things verbally and nonverbally trying to discourage conversation a lot of the time. I feel like my brain has been pricked full of pinholes having to revisit constantly things that don't matter (to me, and not really to her although she thinks they are important), that I have already put a plan in place to resolve ("Harold is coming to fix the screen next week...Harold is coming to fix the screen next week..."), or can't prioritize yet amidst everything else going on (what are we going to do about a few dead trees, who's going to do snow removal this winter, etc.). I have MUCH less time to my own uninterrupted thoughts, and am consequently struggling to keep all the balls I'm juggling in the air. The farm needs attention for sure and that's an area I have most neglected during this.

I am hopeful that when I move and start coming over here for visits, which will likely be almost daily, probably often more than once a day, that I can put on a happy face and be nothing but sweet, loving, attentive, positive, talkative, etc. Anything but that is likely to make her think I'm sullen, don't want her to talk, etc.?

So for the next three weeks while stil living here, and for the future when I am just coming over frequently, I need some coping skills, and I'm still swamped with so many responsibilities even as certain big things have resolved (moving, selling my Virginia house, buying my Lexington house). So I'm just not sure what help to get and where.?

Any thoughts?

Thanks,

Jill

From the extraordinary heart and mind of

Jill Nienhiser

via jnienhiser@...

On Aug 30, 2024, at 11:27?AM, Jill via groups.io <jnienhiser@...> wrote:

?

Thanks Kate, and to others who have replied to the list and privately!

From the extraordinary heart and mind of

Jill Nienhiser

via jnienhiser@...

On Friday, August 30th, 2024 at 9:22 AM, Kate via groups.io <kzehnter@...> wrote:

Greetings Jill?

After reading this email which sounded way too much like my last year being with Ceil and I tried to make it everything that Ceil liked and the last two years she started to fall and she struggled with me to get up.

The last fall we did together on memorial Day. She laid on the floor and I put the pillows under her and helped her drag her to the bathroom when we finally got to the bathroom we realized we couldn't even get on the toilet. I asked and asked let's call an ambulance. I'll be fine in the morning, you go to bed I had to painful for me to see it all when I came down. She was still in the bathroom on the floor. I said we have to struggled out of the bathroom and as she was lying in front of the stove and the refrigerator she said OK call the ambulance .?

Ceil had a major accident and she never came home from hospital people I know, and Ceil knows started to go to the rehab centers where she was and visit. She started to get her strength back and it was obvious to everyone. I know that if she comes home. I am not strong enough to help her and she's not strong enough to stay standing up. You might know right now. I am crying and sad as I really trust you I wish we could live together, but she was on me. I was getting no satisfaction living with her. Shannon came to visit and we went to look for , what was available in the outside world we could stay happy. It was difficult and necessary for her health and well-being and mine I will also tell you that we ( the family and friends that stepped up ) and are still helping me get used to the fact Ceil doesn't live here anymore.?

It wasn't easy finding the exact right place for Ceil because (as you will find out ) there isn't an exact right place at this moment in time for Ceil her New Home at Nevins Health and nursing care was the best we could do that is still not good enough for me or her and we're making do.

Kate z

I have written this sharing with a lot of tears because this has been a very dramatic experience for me and I'm really glad that Shannon and I started early in finding a place where Ceil could be living in the future while she was recouping from her fall on the kitchen floor fall.?

Ceil was in the hospital recouping and than went to rehab for a few weeks after the fall and ?most of the time we looked for a place that was close to home. My drive of 10 minutes to visit with Ceil, is welcome?

Having friends and family close by I admit is key to my sanity in so many ways: Kelly and Diane and Meggie & Noreen & Shannon & Will have been back & forth multiple times in June, July, August for helping Ceil and myself.

And to?

Jill & Matooka I send You Hugs full of Love

Thank you for speaking your truth which gave me the courage to share mine

Kate z

Allowing for the Possibility

978 884-6712

Zehnergy.org

On Aug 29, 2024, at 7:11?PM, Jill via groups.io <jnienhiser@...> wrote:

?

I meant to say, so while I would love for her to look forward to whatever it might be, right now, she does not look forward to things on her calendar.?

Instead, she seems to merely obsess about what day it is, what she has to do today at what time, what time she has to be ready to be picked up or for me to take her. The anticipation of the activity for a day seems stressful. All day long she rehearses. I have Bible Study at 7:00. Mert's picking me up at 6:45. I have to be ready at 6:45. What time is it? Oh I have plenty of time. Mert's picking me up at 6:45. She rarely seems to really enjoy whatever it is.?

I guess she doesn't ask "What day is it, what do I have to do today, what time to I have to be ready" etc. any more often on days when she actually has something scheduled, maybe it just feels like it. Because she looks ahead on her calendar and often is wrong about what day it is. I am just as often to hear her saying she has to get ready for Bible Study when that's on Wed and it's only Tue.?

She also typically expresses a desire not to go to these things although she goes anyway, often because my aunt "makes" her.

If she were not doing the thing, she would not be doing anything else at home. Rise, dress, coffee, breakfast, pills, calendar, news, check the mail or ask me to, computer, nap (but probably can't sleep), lunch, pills, calendar, computer, nap, dinner, pills, calendar, tv, bed. Here and there she does a little housework but more often wants me to do it on her schedule. Mostly endlessly circulating around the kitchen island, with side trips to bathroom, bedroom.

From the extraordinary heart and mind of

Jill Nienhiser

via jnienhiser@...

On Thursday, August 29th, 2024 at 5:54 PM, Jill via groups.io <jnienhiser@...> wrote:

Thanks for the ideas. Susan and I have been suggesting a pet for two years but she keeps saying she is not ready. She's not that excited about my cat who is living here, although to be fair my cat has been wary of her walker, and so is not warm and loving but rather avoids her.?

Every other home activity we have tried, she says she is not interested in. Reading, adult coloring books, simple water coloring book, jigsaw puzzles, large print crosswords and circle words. She will watch a little news, maybe a game show, maybe one or two episodes of a sitcom. Doesn't have the focus or patience for a movie or a book. Will look at Facebook for 10 or 15 minutes once or twice a day.

She goes to church, bible study, and prayer service (Sun, Wed, Fri) at church every week; my aunt picks her up. My aunt tries to get her to go to the senior center for activities; usually mom won't but sometimes my aunt insists. For example my aunt volunteers to take the lunch donations once a week and takes my mom, and then my mom talks to people there. They do go together to eat the senior center lunch twice a month, when they have fried chicken, and when they have meatloaf, which seem to be the only meals they like, or at least the ones they like best. I am going to be angling to get her to go at least once a week for the lunch, once I am out of here. Hopefully then also staying a little while if there are activities after. They have a new director so I'm hopeful there will be more going on. The previous, lazy director acted like she was being paid to discourage use of the facilities, supposedly because she didn't want to have to straighten up after people played cards or whatever.?

If my aunt won't take her, I think I can arrange for them to pick her up. If she will let them. She doesn't seem to want anyone but relatives helping her. Mostly me, Susan, and my aunt (her sister).

She has several people who call regularly, even some daily: my sister, my aunt, my cousin, her old friend from high school, and two widow friends from church. When the phone rings she wants to know "Who is it?" and almost always wrinkles her nose. She doesn't want to talk to her. She talks too long. She only talks about herself. But if the person is one who asks questions or talks about other people mom knows, well, then they are too nosy or gossipy. She does?take most of these calls, "Ok fine, give me the phone, I'll get it over with." It sounds like she is enjoying these calls and they go on maybe 15 minutes typically.

From the extraordinary heart and mind of

Jill Nienhiser

via jnienhiser@...

On Thursday, August 29th, 2024 at 3:22 PM, Meggie via groups.io <meggiewinchell@...> wrote:

Hi Jill,

Oh my heart and mind that sounds incredibly difficult.

A random idea came to me: would your mom like a pet? A cat or bunny to keep her company?

I'm also wondering what elder programs might be available? I know Jesse's grandmother had someone come over from the library once a week to bring large-print books and chat for a bit. Senior centers often arrange for visitors, as well. Or music? Maybe a singing lesson at the house? Something to look forward to??

Or maybe she could be dropped off at the senior center a few afternoons a week for bingo or something to give you a break? Or maybe a drop-off at your sister's? Creating chunks of time for my brain to think unto itself, without requests or interruptions, has been really important for me in parenthood. It creates stepping stones for me to get thru the crazy-making times.

With my kids we use the system of when the sound machine is on outside my study, it means I'm with a client and they cannot come in. It creates a non-verbal reminder not to interrupt. Maybe a sign would be helpful in the case of your mom so that she doesn't need to remember the system.

Best of luck!

Meggie

On Thursday, August 29, 2024 at 10:43:07 AM EDT, Jill via groups.io <jnienhiser@...> wrote:

Hi sisters,

I am struggling and I don't know whether to talk to a friend, ask for a circle of support (a zoom call with some of you?), get counseling, all of the above.

Mom has memory loss and cognition problems, severe anxiety, a limited lifestyle, and loneliness. So she wants to talk, but has nothing to talk about. And she has a million anxieties and memory problems. All that combines resulting in her repeat things over and over, asking things over and over.?

Unlike Dane, I work from home so I'm here with her all day every day. I wake up with my patience bank topped off from the night off sleeping, and then it's chipped away at all day long. Some days I make it to evening before I get snappish, other days it wears out earlier. She also may have some "sundowning" making her more prone to confusion and anger in the evening.

Today is one of those "other days." It's only 9:22 am today and already I've gotten into a fight with her. I'm not nice, apparently want her to never speak, don't like anything about her, basically hate her, and probably never loved her. I pointed out that I moved to Lexington to take care of her, but she does not (at this moment) believe that. I guess I just moved from a city full of art, culture, theater, restaurants to a town of 4500 only for the big house I could buy. I'm going to move out and never come see her. She makes up these stories and they aren't true, but she hears anything I say that isn't 100% positive as critical of her.

Intellectually, I KNOW that she can't remember she's asked the same thing 3 times in 5 minutes, or the other thing 15 times today, or whatever. When we got snappish this morning, I made the mistake of saying that I just wanted her to understand, empathize a little, how hard it is to be with someone with memory loss, how it could be irritating to answer the same thing over and over. I should know better, she cannot hear or understand this. Doesn't believe she does it because every time she asks anything is the first time to her. To her (when we are fighting about it), she is just making conversation. (When we are not fighting, she is clearly anxious and asking again and again, worried about what day it is, what she has to do, when she has to be ready, whether she's taken her pills, and a million minor household things she sees and believes have to be taken care of right then.) Instead, it's all about her--she can't help it. Why don't I sympathize with how lonely she is, how she needs someone to talk to, etc. (Her lonelinees, and need for help, is why I moved home, but I'm not succeeding.)

I recognize in myself that from first moving in and beginning to experience this every day, I have been putting up my guard, doing things verbally and nonverbally trying to discourage conversation a lot of the time. I feel like my brain has been pricked full of pinholes having to revisit constantly things that don't matter (to me, and not really to her although she thinks they are important), that I have already put a plan in place to resolve ("Harold is coming to fix the screen next week...Harold is coming to fix the screen next week..."), or can't prioritize yet amidst everything else going on (what are we going to do about a few dead trees, who's going to do snow removal this winter, etc.). I have MUCH less time to my own uninterrupted thoughts, and am consequently struggling to keep all the balls I'm juggling in the air. The farm needs attention for sure and that's an area I have most neglected during this.

I am hopeful that when I move and start coming over here for visits, which will likely be almost daily, probably often more than once a day, that I can put on a happy face and be nothing but sweet, loving, attentive, positive, talkative, etc. Anything but that is likely to make her think I'm sullen, don't want her to talk, etc.?

So for the next three weeks while stil living here, and for the future when I am just coming over frequently, I need some coping skills, and I'm still swamped with so many responsibilities even as certain big things have resolved (moving, selling my Virginia house, buying my Lexington house). So I'm just not sure what help to get and where.?

Any thoughts?

Thanks,

Jill

From the extraordinary heart and mind of

Jill Nienhiser

via jnienhiser@...

On Aug 30, 2024, at 11:27?AM, Jill via groups.io <jnienhiser@...> wrote:

?

Thanks Kate, and to others who have replied to the list and privately!

From the extraordinary heart and mind of

Jill Nienhiser

via jnienhiser@...

On Friday, August 30th, 2024 at 9:22 AM, Kate via groups.io <kzehnter@...> wrote:

Greetings Jill?

After reading this email which sounded way too much like my last year being with Ceil and I tried to make it everything that Ceil liked and the last two years she started to fall and she struggled with me to get up.

The last fall we did together on memorial Day. She laid on the floor and I put the pillows under her and helped her drag her to the bathroom when we finally got to the bathroom we realized we couldn't even get on the toilet. I asked and asked let's call an ambulance. I'll be fine in the morning, you go to bed I had to painful for me to see it all when I came down. She was still in the bathroom on the floor. I said we have to struggled out of the bathroom and as she was lying in front of the stove and the refrigerator she said OK call the ambulance .?

Ceil had a major accident and she never came home from hospital people I know, and Ceil knows started to go to the rehab centers where she was and visit. She started to get her strength back and it was obvious to everyone. I know that if she comes home. I am not strong enough to help her and she's not strong enough to stay standing up. You might know right now. I am crying and sad as I really trust you I wish we could live together, but she was on me. I was getting no satisfaction living with her. Shannon came to visit and we went to look for , what was available in the outside world we could stay happy. It was difficult and necessary for her health and well-being and mine I will also tell you that we ( the family and friends that stepped up ) and are still helping me get used to the fact Ceil doesn't live here anymore.?

It wasn't easy finding the exact right place for Ceil because (as you will find out ) there isn't an exact right place at this moment in time for Ceil her New Home at Nevins Health and nursing care was the best we could do that is still not good enough for me or her and we're making do.

Kate z

I have written this sharing with a lot of tears because this has been a very dramatic experience for me and I'm really glad that Shannon and I started early in finding a place where Ceil could be living in the future while she was recouping from her fall on the kitchen floor fall.?

Ceil was in the hospital recouping and than went to rehab for a few weeks after the fall and ?most of the time we looked for a place that was close to home. My drive of 10 minutes to visit with Ceil, is welcome?

Having friends and family close by I admit is key to my sanity in so many ways: Kelly and Diane and Meggie & Noreen & Shannon & Will have been back & forth multiple times in June, July, August for helping Ceil and myself.

And to?

Jill & Matooka I send You Hugs full of Love

Thank you for speaking your truth which gave me the courage to share mine

Kate z

Allowing for the Possibility

978 884-6712

Zehnergy.org

On Aug 29, 2024, at 7:11?PM, Jill via groups.io <jnienhiser@...> wrote:

?

I meant to say, so while I would love for her to look forward to whatever it might be, right now, she does not look forward to things on her calendar.?

Instead, she seems to merely obsess about what day it is, what she has to do today at what time, what time she has to be ready to be picked up or for me to take her. The anticipation of the activity for a day seems stressful. All day long she rehearses. I have Bible Study at 7:00. Mert's picking me up at 6:45. I have to be ready at 6:45. What time is it? Oh I have plenty of time. Mert's picking me up at 6:45. She rarely seems to really enjoy whatever it is.?

I guess she doesn't ask "What day is it, what do I have to do today, what time to I have to be ready" etc. any more often on days when she actually has something scheduled, maybe it just feels like it. Because she looks ahead on her calendar and often is wrong about what day it is. I am just as often to hear her saying she has to get ready for Bible Study when that's on Wed and it's only Tue.?

She also typically expresses a desire not to go to these things although she goes anyway, often because my aunt "makes" her.

If she were not doing the thing, she would not be doing anything else at home. Rise, dress, coffee, breakfast, pills, calendar, news, check the mail or ask me to, computer, nap (but probably can't sleep), lunch, pills, calendar, computer, nap, dinner, pills, calendar, tv, bed. Here and there she does a little housework but more often wants me to do it on her schedule. Mostly endlessly circulating around the kitchen island, with side trips to bathroom, bedroom.

From the extraordinary heart and mind of

Jill Nienhiser

via jnienhiser@...

On Thursday, August 29th, 2024 at 5:54 PM, Jill via groups.io <jnienhiser@...> wrote:

Thanks for the ideas. Susan and I have been suggesting a pet for two years but she keeps saying she is not ready. She's not that excited about my cat who is living here, although to be fair my cat has been wary of her walker, and so is not warm and loving but rather avoids her.?

Every other home activity we have tried, she says she is not interested in. Reading, adult coloring books, simple water coloring book, jigsaw puzzles, large print crosswords and circle words. She will watch a little news, maybe a game show, maybe one or two episodes of a sitcom. Doesn't have the focus or patience for a movie or a book. Will look at Facebook for 10 or 15 minutes once or twice a day.

She goes to church, bible study, and prayer service (Sun, Wed, Fri) at church every week; my aunt picks her up. My aunt tries to get her to go to the senior center for activities; usually mom won't but sometimes my aunt insists. For example my aunt volunteers to take the lunch donations once a week and takes my mom, and then my mom talks to people there. They do go together to eat the senior center lunch twice a month, when they have fried chicken, and when they have meatloaf, which seem to be the only meals they like, or at least the ones they like best. I am going to be angling to get her to go at least once a week for the lunch, once I am out of here. Hopefully then also staying a little while if there are activities after. They have a new director so I'm hopeful there will be more going on. The previous, lazy director acted like she was being paid to discourage use of the facilities, supposedly because she didn't want to have to straighten up after people played cards or whatever.?

If my aunt won't take her, I think I can arrange for them to pick her up. If she will let them. She doesn't seem to want anyone but relatives helping her. Mostly me, Susan, and my aunt (her sister).

She has several people who call regularly, even some daily: my sister, my aunt, my cousin, her old friend from high school, and two widow friends from church. When the phone rings she wants to know "Who is it?" and almost always wrinkles her nose. She doesn't want to talk to her. She talks too long. She only talks about herself. But if the person is one who asks questions or talks about other people mom knows, well, then they are too nosy or gossipy. She does?take most of these calls, "Ok fine, give me the phone, I'll get it over with." It sounds like she is enjoying these calls and they go on maybe 15 minutes typically.

From the extraordinary heart and mind of

Jill Nienhiser

via jnienhiser@...

On Thursday, August 29th, 2024 at 3:22 PM, Meggie via groups.io <meggiewinchell@...> wrote:

Hi Jill,

Oh my heart and mind that sounds incredibly difficult.

A random idea came to me: would your mom like a pet? A cat or bunny to keep her company?

I'm also wondering what elder programs might be available? I know Jesse's grandmother had someone come over from the library once a week to bring large-print books and chat for a bit. Senior centers often arrange for visitors, as well. Or music? Maybe a singing lesson at the house? Something to look forward to??

Or maybe she could be dropped off at the senior center a few afternoons a week for bingo or something to give you a break? Or maybe a drop-off at your sister's? Creating chunks of time for my brain to think unto itself, without requests or interruptions, has been really important for me in parenthood. It creates stepping stones for me to get thru the crazy-making times.

With my kids we use the system of when the sound machine is on outside my study, it means I'm with a client and they cannot come in. It creates a non-verbal reminder not to interrupt. Maybe a sign would be helpful in the case of your mom so that she doesn't need to remember the system.

Best of luck!

Meggie

On Thursday, August 29, 2024 at 10:43:07 AM EDT, Jill via groups.io <jnienhiser@...> wrote:

Hi sisters,

I am struggling and I don't know whether to talk to a friend, ask for a circle of support (a zoom call with some of you?), get counseling, all of the above.

Mom has memory loss and cognition problems, severe anxiety, a limited lifestyle, and loneliness. So she wants to talk, but has nothing to talk about. And she has a million anxieties and memory problems. All that combines resulting in her repeat things over and over, asking things over and over.?

Unlike Dane, I work from home so I'm here with her all day every day. I wake up with my patience bank topped off from the night off sleeping, and then it's chipped away at all day long. Some days I make it to evening before I get snappish, other days it wears out earlier. She also may have some "sundowning" making her more prone to confusion and anger in the evening.

Today is one of those "other days." It's only 9:22 am today and already I've gotten into a fight with her. I'm not nice, apparently want her to never speak, don't like anything about her, basically hate her, and probably never loved her. I pointed out that I moved to Lexington to take care of her, but she does not (at this moment) believe that. I guess I just moved from a city full of art, culture, theater, restaurants to a town of 4500 only for the big house I could buy. I'm going to move out and never come see her. She makes up these stories and they aren't true, but she hears anything I say that isn't 100% positive as critical of her.

Intellectually, I KNOW that she can't remember she's asked the same thing 3 times in 5 minutes, or the other thing 15 times today, or whatever. When we got snappish this morning, I made the mistake of saying that I just wanted her to understand, empathize a little, how hard it is to be with someone with memory loss, how it could be irritating to answer the same thing over and over. I should know better, she cannot hear or understand this. Doesn't believe she does it because every time she asks anything is the first time to her. To her (when we are fighting about it), she is just making conversation. (When we are not fighting, she is clearly anxious and asking again and again, worried about what day it is, what she has to do, when she has to be ready, whether she's taken her pills, and a million minor household things she sees and believes have to be taken care of right then.) Instead, it's all about her--she can't help it. Why don't I sympathize with how lonely she is, how she needs someone to talk to, etc. (Her lonelinees, and need for help, is why I moved home, but I'm not succeeding.)

I recognize in myself that from first moving in and beginning to experience this every day, I have been putting up my guard, doing things verbally and nonverbally trying to discourage conversation a lot of the time. I feel like my brain has been pricked full of pinholes having to revisit constantly things that don't matter (to me, and not really to her although she thinks they are important), that I have already put a plan in place to resolve ("Harold is coming to fix the screen next week...Harold is coming to fix the screen next week..."), or can't prioritize yet amidst everything else going on (what are we going to do about a few dead trees, who's going to do snow removal this winter, etc.). I have MUCH less time to my own uninterrupted thoughts, and am consequently struggling to keep all the balls I'm juggling in the air. The farm needs attention for sure and that's an area I have most neglected during this.

I am hopeful that when I move and start coming over here for visits, which will likely be almost daily, probably often more than once a day, that I can put on a happy face and be nothing but sweet, loving, attentive, positive, talkative, etc. Anything but that is likely to make her think I'm sullen, don't want her to talk, etc.?

So for the next three weeks while stil living here, and for the future when I am just coming over frequently, I need some coping skills, and I'm still swamped with so many responsibilities even as certain big things have resolved (moving, selling my Virginia house, buying my Lexington house). So I'm just not sure what help to get and where.?

Any thoughts?

Thanks,

Jill

From the extraordinary heart and mind of

Jill Nienhiser

via jnienhiser@...