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...and I am weary.

I went to stay with her in order to take care of a legal matter (mine) in late '03. It was to be temporary, I thought. It took but a short time to realize she needed help.

I had had a falling out with her and with my sister several years before, so was dismayed to find she had been diagnosed with type 2 Diabetes and that it was out of control due to diet. I read up, and started preparing healthy foods and a sensible routine. My sister looked at me as an interloper from the start and within months she moved out.

I slowly began to realize my mom was experiencing memory loss. The sorts of things which tipped me off were kind of funny at first; she'd watch reruns of shows night after night and actucally bite my head off when I would say, "gee, they showed this very same rerun two nights ago; let's find something else"...no, she had not seen it and I was lying to her in order to watch what I wanted...I did catch on and of course learned to keep my mouth shut...

She'd get angry with me when I'd offer to do her (neglected) laundry. She'd get angry with me when I'd remind her the bills needed to be paid, or that she'd just eaten minutes before, or that she'd already fed her dog that morning...

I soon realized I must address all of the household tasks or they would go undone. That was fine with me, as I am helpful (bossy?!) by nature and a worrier to boot...plus, I was basically a guest in her home with time on my hands while I awaited resolution of my legal matter.

Cut to now...short version, we moved across country three years ago to be near my grown daughter, her two children and her husband. We had no more family nearby and I figured I could restart my work-life and life would be manageable, and maybe even pleasant to some extent.

She doesn't want to do anything with other seniors, which is probably a "good" thing, since she'd alienate them anyway; doing things together just the two of us is almost unbearble, as one or both of us is at any given time angry and/or hurt. Of course I remember the hurts and she doesn't...

You get my drift, I suppose. I have read all of the posts in this thread and almost feel like I'm complaining about a gnat to a refugee...

Reality here though is a constant battle of wills, emotions and pragmatic concerns. For instance, how can I make sure she eats what she should when she should...difficult enough when I'm here, as she will argue with me that I don't understand Diabetes and she simply must eat NOW...(25 minutes after a meal...); and why can't she find anything to eat... (because I have to hide her own meals in the fridge and the freezer so she won't eat more than planned for the day...);

I worked evenings for about five months, preparing her meals ahead, and a dear sweet neighbor who would phone and tell mom it was time to eat; which only worked at all on the days mom wouldn't throw away my note telling her to "call **** right after you eat breakfast"...so **** would be able to clock her next meal.

She began to treat **** the same way she teats me (and small children...); thank g-d we are friends and that we both have the ability to find some humor after the fact... But my mother had her in tears several times, as well as her young daughter who took it upon her self many evenings to come visit.

Ok, I have written way too much and it is still not enough somehow...<smile> and is disjointed and incomplete and not at all what I first thought I would say by way of introduction... Hi my name is Lea and I'm a tired, cranky, unappreciated, self-neglecting, miserable, hopeless and unfulfilled CARE-giver...who USED to laugh, make clever asides in conversation, behave in fun amd silly ways with my grand kids, dish the dirt with my daughter and actually care about my appearance enough to change clothes daily and enjoy a mystical, day-dreamy bent...

Thanks sooo much if you have read this far...
Lea

Lea

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Hi Lea,
and Welcome! I've no time to write a lot right now, but wanted you to know I did read your post straight through and believe me, I GET IT. My mom has Alzheimer's, diagnosed five years ago. What you describe is simply part of the dementia process. How your mom behaves is typical for someone with dementia. That is NOT to say that is isn't frustrating for you...oh gosh, do I know how maddening they can be!! You will realize in time that the only way to peacefully coexist is to not get into it with her, you will never win. She simply isn't thinking clearly any longer and sadly doesn't even know it. It is such a hard thing for us to wrap our brains around and the best thing you can do for yourself is to vent, come here and share with others as you have done. The worst that you can do for you is neglect yourself. As others have said so many times, if you burn out due to neglect, who will take care of your mom? You need to be healthy and strong...you need to find a way to make time for you.

I think I would call or write the American Diabetes Association and see if they don't have someone you can talk to about your predicament. I realize how important it is for people with diabetes to watch their diet, so maybe they will have some ideas for you.

I wish you well,
Miriam
Hi, and thank you so much for your reply Miriam.

I took my mom to the grocery store this afternoon and was thinking the whole time how I don't have to tell all the details of this situation because everyone here is in similiar situations and how much that fact has lifted my spirit already.

I know I was hesitant to bring up the anger, even though I have read posts by others who have to face their own and face it in the person they are caring for. Until searching for a message board I didn't even realize that it is (seems to be?) so common. My underlying emotions are frustration and sadness; my mom's underlying emotion is rage. I get that; but I don't handle it well and she sucks me right into the anger-whirlpool with her.

I have "leftover" anger from my childhood, so I'm no stranger to my own; but I KNOW better than to exhibit it, though I fail almost everyday. How do I learn to bite my tongue when verbally attacked??? That is my biggest issue.

I'm angry at the disease, but the disease doesn't care. And though my mom "seems" to forget a go-round with me, I don't forget; so the hurt coupled with sadness, anger and guilt for my own angry responses is always lurking, almost always readily and swiftly engaged and used by her, hardly ever giving me time and space to respond to her in an authentic, sympathetic manner.

Ah, and yes...I have read you all reminding others to take care of self. I'm sporadic about that while I rationalize oh, who cares?

I used to be a good housekeeper...used to wear makeup...used to cook more real food...etc. Now I'm all about the basics...
; }
Thanks again,
Lea

[This message has been edited by Lea (edited 05-08-2008).]
Hi Lea,
Don't ever feel that you shouldn't tell all the details because others have "been there, done that"...if it makes you feel better, let it out, write it down. It is very cathartic and there are many here who will listen. We may not have all the answers, but we will listen and we do know how you feel and what you are going through.

Your relationship with your mom sounds very much like mine was with mine, so I really understand what you are feeling. Believe me, I am/was no better at keeping my temper when she pushes my buttons and boy, can she push them...and why not? She's the one that installed them!!

There is a book "The 36 Hour Day" that is a must read for you...it is all about dementia and what that person goes through, your feelings, etc...it is a wonderful resource book and you can pick it up for less than $10. Many people here highly recommend it.

I do know what you are saying about how different your life has become. When I had mom here, there were days that I just didn't get a shower in and I just couldn't believe myself...I would never have done that before. I was always good at taking care of myself. If you miss a shower, so what? If you miss a day of makeup, forgive yourself.

You will enjoy the people at this site and it will become a place for you to go to where people really understand. I'm not certain if it still exists, but there use to be a chat room on this site at nite...you might want to see if that is still up and running and then that would be another place for you to "unload"

You also might want to go back and read some of the previous posts. You can gain a lot of information from them.

My thoughts are with you
Miriam
Hi again.

I did sign into the chat room last night but no one else was there...

Yes, reading the threads here here has helped me a great deal already. I've read the entire "Introduce Yourself" folder and branched out last evening to read in others.

I'm going to find that book tomorrow; thanks for recommending it.

Having had a frankly crappy childhood, not being raised by either of my parents, I know creates an overlay of sorts in my current relationship with my mom. She doesn't remember those years except in a sort of crystalized way, one incident here, one there but rememberering her fantasized (sanitized...) versions of incidents.

Rarely anymore do either one of us mention the elephant in the room. Even when she was in control of her faculties, her crystalized version of events in her life bore little resemblance to fact. I have always found that more sad than anything else, for it prevented us (after I became an adult) from really bonding as two adult women with love one for the other. I had to watch her treat other people my age as though they were her *children*, sources of pride for her, parenting, almost, others whose accomplisments in life she could bask in as a parent might...
= }

Thanks for reading my thoughts, Miriam.
Lea
Hello Lea,

Having been raised myself by a very verbally as well as physically abusive mother, I can empathize with you. I keep telling myself that I should get back into therapy to work through some of my feelings, but then I think it would probably take a lifetime to straighten out my head and who has that kind of money???

As far as the chat room, you might want to try signing on every night and just see. If I remember right, I want to say Wed nites seemed to be a good night.

When reading the previous posts, you might want to go to "Caregiving for parents...". I believe you will find quite a bit on children caring for parents with memory loss/dementia.

Just to share, I called my mom this afternoon, just to say hi and as usual, it becomes an impossible conversation. I guess because "her head is empty" as she puts it, it is extremely difficult for her to talk about anything, but she wants to stay on the phone and talk, so she repeats over and over "so when are you coming over?" and "when will I see you?" ...the conversations are not fun, to say the least, but my sister has told me how much my mom loves to get calls, so I continue to call. Alzheimer's/dementia is so much harder for everyone around the person with the disease. My mom, for one, is really quite happy in her little dementia world. She was always very manipulative, using guilt as a way to get me and my sisters to spend time with her and it is quite amazing that she still has that skill! When talking to her today, I told her I couldn't visit today, that I was at work and she would say "I'm so lonely, you have to come over" or..."if you loved me, you would come to visit me"...really amazes me how good she still is at that and yet her memory is gone. I mean, I can take her to dinner, have a meal, get back into the car and not three minutes from the restaurant, she will say "when are you taking me for dinner?" It's been five years since she was diagnosed and I still have a hard time with the disease.
Miriam
Hi Lea,

It's been ages since I've logged in, and I'm not even sure if anyone on the boards even remember me. I do check in every now and then, and your post especially tugged at my heart.

My mom has lived with us for over 21 years now, and she was always manipulative, verbally abusive, and preferred to recognize my brother's great achievements over mine. She, too, was great with my friends ... they all thought she was great! She was diagnosed with COPD about 9 yrs. ago, and in March 2007 we entered hospice because she absolutely refused to leave the house, even to see a doctor again, and they determined she was in the end-stage. This past year has been hell to say the least.

We all suspected she had some mild dementia. But each "nose dive" or "flareup" robbed her of more and more of her ability to reason and remember. A nurse told me that she suffers from hypoxia now because her lungs can no longer make the oxygen/carbon dioxide exchange. It can really do weird things to a person's mind.

She's also fallen several times, but fortunately sustained no serious injuries. She had no idea how or why she fell. We think it was the hypoxia.

In March, I applied for assistance through the state to try to get some additional help and possibly LTC in the event we could no longer take care of her. She can't clean herself, she only leaves her room to go to the bathroom (she refuses to have a comode in her room), or to yell at me to get her something.

In order to qualify, she had to be diagnosed with dementia. She scored over the top! Unfortunately, she didn't qualify financially because her life insurance had cash value ... a measly $3,000. So, it's up to us and hospice.

I guess what I'm getting at, Lea, is that dementia is a horrible disease in itself. Coupled with another life robbing disease is even more painful for the caregiver and those around her.

My mom lives in her own little world now. She has very selective memory, too. And, it's usually way off base from reality.

Being in hospice for little over a year now, however, has slowly taught me some sanity saving lessons. Well, sometimes sanity saving. The social worker very gently told me that little by little I can dust off a painful memory and and try to reconcile with it. Sometimes one brings forward another, and another. So, I either put them all back in the closet or figure if there's one I can handle. Sometimes I can, sometimes I can't.

Mom is always on my mind. Every day when I go to work, I wonder if that will be the day I get the call. With end-stage COPD it could happen at any time.

Dust off what you can, when you can. Don't try to force yourself. This goes for your relationship with your sister as well.

My heart goes out to you Lea. There are really wonderful people here. They will let you vent, rant, and rave. But more importantly, they will empathize because they DO understand.

Dee
Mimi and Dee and any/everyone else reading here, thank you so much.

It is late here in NC and I will respond to your posts tomorrow. Something got me into my office a few minutes ago and I thought - well, I'll check the board...
; }

Thank you so much for simply being...
Lea

P. S.
I ordered the book you (and others) recommended, Mimi; it should arrive in a day or two!

By the way, a great source for books - new and used - is ALibris; here is the link:

https://www.alibris.com/

[This message has been edited by Lea (edited 05-15-2008).]

[This message has been edited by Lea (edited 05-15-2008).]
"Having been raised myself by a very verbally as well as physically abusive mother, I can empathize with you. I keep telling myself that I should get back into therapy to work through some of my feelings, but then I think it would probably take a lifetime to straighten out my head and who has that kind of money???"

Mimi, your quote here had me smiling in agreement. I actually am somewhat of a self-guided student of Jung, and around two years ago I decided I'd go back to college, get my degree then apply to the Jungian Institute and become a Depth Psychologist...
in my next life...

All my reading throughout my life has been about human behavior and human belief systems, even the fiction. I know this began as a search for my self, and a perfectly natural response to having ascertained at a terribly young age what I perceived to be my *difference*.

I believe we find mirrors in everyone we meet, and that may indeed be the most difficult - as well as fascinating - aspect of living with my mother at this time in my life. It's as though the universe is saying...hey...this is a splendid opportunity to know yourself, to acknowledge and be re-introduced to facets of your self you have disowned or tucked away. Not easy, but necessary.

:::sigh:::We are not our mothers, of course; but they are no less mirrors than the other humans we interact with. It's taking the sentimentality out of it all that is the most difficult, I think. And in a case like mine and yours and so many others, we have the added difficulty of knowing we are mirrors for them as well but the odds are it is not a fact which offers much opportunity to them...mainly because they aren't going to remember a special insight if they get one...
= /
Lea

[This message has been edited by Lea (edited 05-15-2008).]
Dee,
You have a heavy load indeed. Please know I am just amazed at the strength exhibited by so many people here.

Having this *space* is miraculous, and I think must be a sign of Grace.

You are right about pulling out the memories and examining them if possible. Her version of events and mine were not the same, and now the only versions I really must examine are my own...
; }
Hello Lea,

I am glad you have found us... you have much to offer.. You are doing so much for your mother? while she may not appreciate it on this plane, her soul knows of your caring... now that you are dealing with a dementia... as well as diabetes, there is a part of you that will need to find a delicate balance as to where and how you can let go of the things you cannot control... yes, you know what is right.. our parents thought that when we were growing up and how many times, did we not listen to them?

But the situation is even more different now with your mom and dementia.. so if you look at it as the disease vs your mother, you might be able to let go of the attacks, hurts, etc. that you get plugged into.. journal writing on a daily basis can be extremely carthartic... either at the end of the day or the beginning... because it can give you a clean path to sleep with, or to set you up for a good day..

While people may not be able to communicate intelligently on the surface with dementia, human still respond to vibration.. to energy.. to love vs frustration, anger and hurt.. You have the choice to process and forgive.. if you continue to care for her... choose to do it from your heart ... even if she was not there for you... if you can't, then you have other options that you can decide upon.. it won't make you a bad person if you decide to go this route.

Please keep us posted...

richest blessings

gail
Hi Gail and all ~
Thank you for your message.

There is some synchronicity in reading your reply today. I was just on the phone a few hours ago with my nephew. I asked him if he and his wife could take mom for awhile. There has been a development in my daughter's life...she and her husband are getting a divorce after 18 years.

She's in bad shape. It wasn't her idea and frankly she's just spinning.

She has asked me to come up a few times in the past few weeks and it hurts so much for me to have to say I just don't see how I can for more than an hour here or there. She's not sleeping, cries so much, doesn't eat; two days ago she asked a neighbor to take her to the hospital because she knew she was dehydrated and plainly an emotional wreck.

I can't leave my mom for more than a couple of hours at a time - mainly the food thing - and the drive is 45 minutes each way. The kids (16 and 11) are pretty good at scrounging for food...lol but the 11-year old has type I diabetes and is so devoted to sticking close to mom that she has been neglecting her own routine with food, pump etc.

Anyway, it seems many things are converging and it is time for me to plan my own future. In a few months or so my dauhgter will be in less need of me, I'm sure. She's a strong, bright woman with her head on straight and will eventually thrive in her new chapter.

I have been thinking the past month that I'd like to move to Arizona after my mom passes, and of course that could be years...but I've been mentally planning various ways I might be able to support myself in this idea for my own future.

My nephew will be calling me back this evening or tomorrow morning after discussing the idea with his wife and children.

I have thought before it could be a nice experience for her, as she would be able to bond with three great-grandaughters she's seen little of. She would never be bored... and I think the youngest one - who is her namesake, btw, - would particularly care for her. She is a sweet, introverted type, perceptive and kind. Plus she would get a break from me, of course...
: ]

I can use the relative freedom to spend some of the tough times with my daughter and her kids. I also need to address a few issues here at the house. (Minor repairs and improvements, with an eye toward the day I will either rent it out or sell it.) Plus, I have to get a job and put some money aside. I think I told above how my working was not, um, *working* with my mom's situation here...
= ]

Ok, well, I'll let you nice people know what happens.

Gail, I used to journal. Now I do the work but don't commit it to paper much.
; }

Lea

[This message has been edited by Lea (edited 07-25-2008).]

Hi all ~

It's been quite a long time since I have visited the site -- almost six years!  I came back today so that I might get and share the site url with a couple of people who have recently entered my life.

 

My mother passed August 8 of last year, at our home.  Hospice nurses had been visiting her three times a week for about seven weeks.  Mom and I made our peace the night before her first *official* Hospice visit.  I believe she heard me as I apologized for my ineptitude and my old anger, and asked her to forgive me.  I also told her I had rid myself of any lingering anger toward her.  She had tears in her eyes -- as did I -- and reached to touch my face.

 

Those seven weeks, I cannot lie, were the hardest weeks of my life.  There were a few sweet moments, there were many frustrating moments, for both of us.

 

I just wanted to say again here that I appreciate this community.  You all gave me so much by simply existing!  You are all amazing -- strong, brave and good.  I will check in now and then, too.  I am caring for someone else's mother now, a few hours each week, and I am giving the site link to the daughter so she may feel the goodwill and some relief herself as she embarks on the dance with her own mother's dementia.

 

Thank you all.

Lea

 

Last edited by Lea

Hi Lea:

 

Welcome back… I am so sorry about the loss of your mother! I, too, lost my mother recently. I do wonder why mother/daughter relationships so complex? It must be due to the bonds of love! We all wish to protect our babies…

 

I am so glad for you that you had that hospice time. Hospice is so helpful! We were lucky that my mother spent one night at the Hospice House and they provided a small ceremony which gave us some peace. I think going through that period is one of the most difficult times of all. Your mother was blessed to have you by her side at home.

 

Your friend and her mother are also blessed to have you in their life. Support is so important in the world of caring for a loved one especially when the signs of dementia appear. That is the hardest part of all - just heartbreaking. It’s like “HEY, we can get through cancer” but not this!

 

Anyhow, enough of my prattle about the effects of old age. I just know that I have tried to learn to enjoy the moment whenever possible. The years of anger and resistance are meant to be shed in the end as you have shown us here. I, too, would have been lost without this site. Somewhere we have to lay our burdens down… Blessings to ýou all!

 

Love and Hugs, Glenda

Last edited by glenderella

Hi Lea:

 

I thank you for your kind words. It is amazing how a few words can be so healing...

 

This weekend I finished cleaning up my mother's apartment. This past two weeks have been such a whirlwind and now her home is cleaned out. She lived in her own apartment at an assisted living complex. She made the move on her own in 2002 and she was independent to the very end and so "with it". She was such a blessing in my life.  

 

If nothing else, I have learned that being proactive about our own care is so very important. She had everything in order which was so thoughtful and wise. One thing we did was watch a movie together right before the end. I will always treasure that... As I treasure your warm and wonderful response Lea. I am still struggling to come to terms right now!

 

Love and Hugs, Glenda 

Last edited by glenderella

Thank you Lea! Posting about it helps me to accept the reality of it. It's just so hard to believe that it wasn't just a bad dream... Mother passed so quickly that it seems like it happened overnight!

 

The one thing that she made sure of is that everything was in order. Mom was never afraid to face her own immortality.  It has made things much easier.

 

So, lately, I have been throwing myself into projects which seems to help. Heaven knows I have many of those right now. My brother is planning to put together a celebration of life event in her honor. Thank you Lea for being here - it helps so much!

 

Love and Hugs, Glenda

Last edited by glenderella

Hello Lea,

 

Welcome back. I am sorry to hear of your loss but happy to know you are adjusting...

 

Glenda, we have spoken and it is wonderful to know that you spent such quality time in the past year or so reconnecting. She was remarkable in having all things prepared for you and your brother to clear her estate etc.

 

I am here although I don't always get a chance to respond promptly.

 

Richest blessings to you both.

 

Gail

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