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Why am I so tense?
dutiful deb
Posted: Sunday, June 10, 2012 11:37 PM
Joined: 1/1/2012
Posts: 1856


I asked myself this recently. I have been clenching my jaw so much that I've done extensive damage to my teeth. My wrists, elbows, neck, and shoulders ache. I often ache all over, like my muscles are tired, but haven't done anything physically strenous. I find myself being very stiff and have to force myself to relax. I am irritable with my husband. If he tries to give me a little hug or asks me to go for a walk, I explode. This morning I actually told him that I'm tired of doing everything for everyone else but nobody can even do anything for me (translation: I am so overwhelmed with doing things for Mom that if you put the coffee cups on the same shelf as the measuring cups again I'm going to scream).  I can't stand being this way, and in an effort to change, I am asking myself that question.

 

Here is what I came up with: there so much emotional and mental stuff that goes on with caregiving. We have to use deception, bribery, avoiding certain subjects, changing the topic, redirecting conversations...it's making my head spin!

I constantly have to guard what  I say around Mom, and I always have to be aware of what others are saying. I wish I had a sign that said, "Don't bring up the subject of-----(fill in the blank)!"  I feel like I'm always avoiding or changing a subject, redirecting or distracting her, using some kind of bribery or trickery, yet she is also confabulating (Thanks, DZ, for that explanation!). I feel like she and I are in some kind of twilight zone of deception. The difference, I guess, is that I know when she's confabulating but she doesn't know when I am. . If I don't supply an adequate answer she just makes up her own. And then repeats it to everyone else as if it's fact, saying I am the one who told her. Then she'll repeat the "information" to me a few days later but can't remember who told her or thinks someone else told her.

 

Everywhere I go, Mom goes. I seldom go to the store alone anymore,and most of my other errands involve Mom--her appointments, her shopping, etc.  When we go someplace, it's a huge undertaking even if it's a short errand. It's like taking a child with me. The walker loading and unloading, telling Mom she has to take and use it, having her tell me where to park and how to drive and reading signs and humming for forty minutes there and forty minutes back...YIKES! Yesterday I took her dress shopping for my son's upcoming wedding, and I felt like a wrung out  dishrag when it was all over.

 

Mom has a habit  of asking questions for which I never have an answer. Our whole conversations revolve around her asking me things that I don't know about. "What's so and so doing today?" I don't know, I haven't talked to them. "Where's so and so?" Again, I don't know. "Have you talked to so and so lately?" No, I haven't. "Well what are they up to?" I don't know, because I haven't talked to them lately. "Where have they been?" I.Don't.Know. If I make something up, like so and so is out of town, she wants to know where they went and what they are doing there and when they will be back. If I say they are at work, she wants to know where and why and how and so forth. Sometimes I answer just right and it satisfies her. Again, the twilight zone...only in this episode I'm being interviewed by a demented Barbara Walters.  

 

I need help figuring out how to relax. It's nobody's fault Mom has dementia, so I shouldn't act like it is.

 

 I really think my mom is bored and not getting enough social stimulation, plus the memory issue and behavioral changes that go along with dementia. I have become her only form of socialization and not only am I failing miserably at it, I'm making myself miserable. Am I totally alone in this, or does anyone out there know what I'm talking about? I hope I don't sound like a really awful person.

 


lainey2602
Posted: Sunday, June 10, 2012 11:52 PM
Joined: 5/16/2012
Posts: 45


yes you need a break!.. is there any other family.. a sister or brother.aunt or uncle.. 

if not that.. how bout a day care place for alz.. if my mom would go i'd love to see her go there..  you need to get out or away with out her .. can your husband sit with her even if its for an hour or so.??  .. 

im not mymoms main caretaker and i honestly dont know how dad does it.. but I go there at least once a week.. and my sister trys the same.. 

my sister is fighting going i can sense it.. and i used to go twice a week and now go once but Dad said it was ok... if dad gets stressed again i'll be sure to back him up and be there more.. 

you should not have to do this all alone.. even if you have kids.. or she has a friend.. someone to give you a little time free.

??


Stephanie Z
Posted: Sunday, June 10, 2012 11:58 PM
Joined: 12/15/2011
Posts: 4219


Hi deb, After caregiving for parents and in-laws all dying of cancer for over 10 years I found myself doing 24 hour care with my FIL who was anoxic from lack of oxygen due to lung cancer. He was confused as the day is long and I had to sit by his bed all the time to keep him from climbing over the bedrails. I could not watch TV as it confused him and could not keep the lights on because he was hallucinating. I was stressed beyond belief. When my husband came home from work I occasionally had an hour or two to myself and had to find ways to relax a little. A long hot bath, listening to a relaxation tape and treating myself to comfort food helped but the things that helped the most were physical. And I'm not talking about a walk or jog. I found a great release of tension tearing up newspapers. At first just to use in the guina pig cage, but realized I enjoyed it. Then I moved on to snapping bubble wrap. I also went outside and picked up a stick and hit a tree a few times. The other thing I liked to do was to take a ride in the car with the radio on loud and either sing or scream depending on my mood. Always came back in a better frame of mind. A little goofy, perhaps, but it worked. If you can think of something physical to expend the pent up energy and frustration, it might help.

Hugs,

Stephanie


JessieBelle
Posted: Monday, June 11, 2012 12:15 AM
Joined: 5/21/2012
Posts: 276


Dutiful Deb, you are so normal. Sometimes I think that everyone focuses so much on the LO, and the caregiver is left to feel like an instrument or hired hand. Things that drive me crazy are when people say I should take a vacation. Why don't my mother and I drive to ___. They don't understand the meaning of the word "vacation" evidently. I want to say, why don't YOU take her and I'll stay here to recuperate.

So often when a caregiver is in stress, they receive advice on how to take care of their LO better. And when the LO has bad behavior, it is because the caregiver did not do their job right. If they could smile more, say the right things, and be reassuring, then everything would be okay. Sometimes, maybe most of the time, it is really not the caregiver's fault. I want to tell these people, why don't YOU do it.

Sometimes I think it would be wonderful to do caregiving as a community. I have this ideal vision of the Waltons, where the whole family participated in the care and support of each other. I don't know how it ever got to be just one person doing almost everything. That one person ends up sacrificing so much, often for many years. Is it any wonder that the person suffering such loss would be irritable?

I deal with the anger and irritability by self-soothing. It is paradoxical, but I turn it around by doing things more kindly and with more affection. For some reason, it makes me fool myself into actually enjoying what I'm doing. It makes no sense, but it works for me. I guess one would say if I act like the person I want to be, I become it.
overwhelmed
Posted: Monday, June 11, 2012 8:08 AM
Joined: 1/23/2012
Posts: 152


JessieBelle wrote:
Dutiful Deb, you are so normal. Sometimes I think that everyone focuses so much on the LO, and the caregiver is left to feel like an instrument or hired hand. Things that drive me crazy are when people say I should take a vacation. Why don't my mother and I drive to ___. They don't understand the meaning of the word "vacation" evidently. I want to say, why don't YOU take her and I'll stay here to recuperate.

So often when a caregiver is in stress, they receive advice on how to take care of their LO better. And when the LO has bad behavior, it is because the caregiver did not do their job right. If they could smile more, say the right things, and be reassuring, then everything would be okay. Sometimes, maybe most of the time, it is really not the caregiver's fault. I want to tell these people, why don't YOU do it.

Sometimes I think it would be wonderful to do caregiving as a community. I have this ideal vision of the Waltons, where the whole family participated in the care and support of each other. I don't know how it ever got to be just one person doing almost everything. That one person ends up sacrificing so much, often for many years. Is it any wonder that the person suffering such loss would be irritable?

I deal with the anger and irritability by self-soothing. It is paradoxical, but I turn it around by doing things more kindly and with more affection. For some reason, it makes me fool myself into actually enjoying what I'm doing. It makes no sense, but it works for me. I guess one would say if I act like the person I want to be, I become it.

Boy oh boy, can I relate.  I get so tired of everybody telling me to take care of myself too.  Lots of talk, but no offers to help so I CAN take care of ME!  

 

And not to step on any toes on this forum either but where we live and with our personal situation I feel I have NO outside resources.  I have no family that has the time and/or desire to help.  No spare assets to cover hired assistance. No local resources.  No one that DH would accept  being left with. I can't even go to the once a month support group  that is half way close because I have no where for LO to go while I'd be getting supported!   And again, not to be rude, but IF I had an hour to myself, I think I'd want to be selfish and do what I WANT to do, not go listen to everyone else's woes and to hear more of "you need to take care of yourself first". I KNOW that ......I just don't GET to DO that. I'm sorry if that sounds over the top selfish.  Maybe I think I should be entitled to my wants too.

 

 

So for now I get outside when I get the chance and try to relax a bit.  But can one really relax when you're constantly afraid to do or say the wrong thing and set off LO's mood swing?   So, I  keep calm and smile and be patient.........even if inside I want to scream......I don't.

 

 


Nora
Posted: Monday, June 11, 2012 8:08 AM
Joined: 1/23/2012
Posts: 2270


Dutiful Deb, it sounds like you are one raw nerve or a giant walking bruise...even the slightest touch or comment can set you off. Oh, so many of us know that feeling! And I am so sorry you are living it.

Your comment about being interviewed by a demented Barbara Walters made me smile and I needed that this morning. I know what you mean with the questions; I too have come up with so many ways of saying "I don't know." One of these days Mom is going to ask me, "Then what the heck do you know???"

As you note, you've become your Mom's only form of socialization and it is a role too great for one person to fulfill. We feel guilty for what we do and what we do not do; sometimes this guilt becomes so overwhelming. No one deserves to feel like this!

I offer no suggestions this morning, no answers, just prayers and sympathy and support. We are all walking through the fire and we will get through it, coming out the other side as better people.

Stephanie, the comment about bubble wrap, tearing up newspapers or hitting a tree hits home with me! I often visualize pitching something through a window and I am super strong when I do so. Watch out for flying TVs and bookcases at my house! 

Jessie Belle, the Waltons is a perfect example of what we wish could be! Instead we are John Boy and Mary Ellen and Jim Bob and everyone else rolled into one, all by ourselves.

I also liked your insight on how we get advice on how to care for our LO; no one ever seems to think we need to be cared for ourselves! 

Thank you all for posting this morning. I pray you find release from the stress, Deb, and the strength to take care of yourself. If only we were as kind to ourselves as we are to our LOs.

God bless, fellow caregivers!
librarysue
Posted: Monday, June 11, 2012 11:32 AM
Joined: 12/16/2011
Posts: 26


Deb, thank you so much for sharing your story as it gives insight into the struggle my mom is having with my dad.

 

She's developed so many 'rules' over the past few years we can't hardly stand to visit.  Exploding at us when the measuring cups are put in the wrong place is a perfect example.  She is right with you on the process of taking dad anywhere, it is exhausting.  Now, She can't turn off the responsiblity switch and now manages every tiny detail and gets furious with him (sounds like you aren't at the point of taking your frustrations out on your ADLO!)

 

I agree with the others that you NEED Day care or in home assistance or you are going to crack!!!

 

Re; the questions for which you have no answers---I got this kind of thing from my small children.  I was told to turn the conversation back to them by saying 'What do you think?"  They were quite content to either make up something creative!  Or you could make something up on your own.  What is so and so doing right now?  Well, I'm sure she just got out of bed, put on her makeup and went out dancing...let your imagination run with it and you both will be more entertained!  And so what if she tells someone else that so and so went dancing yesterday when it didn't really happen?

 

God bless!

 


MM
Posted: Monday, June 11, 2012 7:47 PM
Joined: 3/5/2012
Posts: 83


Hi Overwhelmed,

 

I don't know what town in Iowa you live in except you are in Central Iowa, but you should check out this link.  They would probably be a good resource for respite for you.

 

http://www.agingresources.com/ 

 

 

This link for the national agency on aging lists resources by state.  There might be something there for you too.

 

http://www.n4a.org/about-n4a/?fa=aaa-title-VI#IA 

 

It is so important to get respite for yourself!!  You might also try some of the local churches to see if they have volunteers that would be a companion for your DH for a few hours a week. 

The hardest thing for me to remember when I get a few hours to myself is to focus on myself and not what all needs to be done for anyone else.  The time is for me!!!!

 

I hope this helps you a little.

Big hugs to you!!!!

MM


MM
Posted: Monday, June 11, 2012 8:02 PM
Joined: 3/5/2012
Posts: 83


Hi DutifulDeb,

 

It so sounds like you've got more than your share of things you're dealing with!

 

I empathize with you in terms of going everywhere with mom, because I deal with the same thing.  My dad also lives with us and his idea of me getting a break is to take mom shopping with me so he can get a hair cut.  He doesn't realize I am on 24/7.  He has a hard time dealing with her so usually if I'm gone for an hour the proverbial **** has hit the fan!.  Then I'm left to smooth things over.  I feel much like a yoyo.

 

I don't know where you live but you might also try the link for your local area on aging. http://www.n4a.org/about-n4a/?fa=aaa-title-VI#IA  that I passed on to Overwhelmed.  There are so many resources out there!

 

We finally got a caregiver that comes to the house 2 days a week and is there mostly for companionship for mom.  The first week she was there it took everything I had not to call home and see how things were going.  I try very hard to make a date with a friend for lunch on those days, or sit in a park, read a book etc.

 

I also laughed at you comment about a demented Babara Walters.  At least your sense of humor seems intact.

 

Hang in there and big hugs to you!

MM

 

 


Still Waters
Posted: Monday, June 11, 2012 8:14 PM
Joined: 2/6/2012
Posts: 1092


 

 
 
I have the same symptoms you have. Add to that weight loss, hair loss, loss of concentration at work... etc.
 
 

 

My stress level decreased tremendously when my mother was forced into the SNF. However, my guilt increased so I am fighting that issue now.  
 
  
I started to feel better physically once I started cooking meals for myself again. Eating better increased my energy level. So far that is the only thing I have done for myself to help feel better. I spend 95% of my free time at the Nursing Home.
 
 
 

JessieBelle
Posted: Monday, June 11, 2012 10:28 PM
Joined: 5/21/2012
Posts: 276


Still Waters, concentration is a problem for me, too. I work from home, but my work is suffering. Sometimes when I need to take pictures and get them in the store, I am too emotionally weary to do it. And the quality of my photography is just not what it used to be. I know it is because all the things going on here have driven my muse into hiding. 

So much energy goes into this. Today I was rather snippish with my mother, but her "I'm feeling sick" wore me thin. The problem was horrible last week. She was sick every day and we were constantly in "going to hospital" mode. She never went to the hospital, but I felt like we went several times each day. Today when she started it, I had to tell her to stop complaining so I could get things done. I felt like a mean person, but I had to save myself. I just couldn't live with last week's drama any longer. (No, I was not unkind, but I was firm that I needed time for myself to get things done.)
dutiful deb
Posted: Monday, June 11, 2012 10:32 PM
Joined: 1/1/2012
Posts: 1856


Thank you for all the great responses. I read all of them and will go back and re-read. I take all advice to heart and even if I don't use a piece right away, I file it mentally for use when it's needed.

 

My mom has been painting me as the "villain" to friends and family. I haven't told a lot of people about her dementia, just doing it more on a case-by-case "as needed" basis. I was also waiting until after the neuro follow up visit, which is in a few days, to say much about Mom's condition. But people who don't know Mom has dementia are now hearing these shocking things about me and what I'm "doing" to Mom--taking away her rights, forcing her to do things against her will, trying to put her in a home, and so forth.  From what I'm hearing from those she talks to, it sounds like she has a lot of paranoia going on. She tells people there is something happening but I'm not telling her what, and that she thinks "we" know something that we're keeping from her. She is telling people that I am making up the dementia diagnosis.

 

You are all right; I need a break! I took the week following my son's wedding off so I can visit with out-of-town family. Hopefully I will be able to do that, or maybe some of them can take Mom for a day so I can get a break. One cousin is going to stay with my Mom, so that will help.

 

My daughter and I caught a good chuckle; we got a free trial of some channels we don't ordinarily get (HBO, etc). Somebody DVR'd a movie whose name I don't recall. Something about Two Ordinary Guys...I don't remember. I thought the movie looked kind of questionable but just kind of looked the other way when my husband and daughter played it. My daughter said "Mom, you have to watch this!" So there is this scene with Will Ferrell and Mark Walberg sitting at these computers and the Will Ferrell character is humming, and it sounded so much like my mom's humming! The other guy reacted, and they had this back and forth thing about it. I laughed my head off because I can totally relate to the Mark Walberg character! But I don't chew my mom out for humming.

 

Maybe I need to throw caution to the wind and just watch 90 minutes of Will Ferrell.

 

 

 

 


bela
Posted: Tuesday, June 12, 2012 3:45 AM
Joined: 12/15/2011
Posts: 4105


A smile; haven't had one of those in a while.  Thanks for the demented BW.

Like most everyone else i hate being told take care of yourself.  It is difficult at best when you do not have the financial resources to do that!

I also didn't like people suggesting that I take time for myself and go to the movies.  I couldn't have enjoyed a movie even if I tried.

So, I did get some respite on a few occasions using some of mom's money.

I did either one of two things:

1.  Go to my room, make a cup of coffee and just sit there in a slightly darkened room to just ponder or sleep

2.  Go to a park, pack sleeping gear and alarm clock, drinks and go to sleep.

I also worked full time, whew.  The above is all i could muster when it came to caring for myself.  And, it wasn't available to me very often.  Mom could not be left alone.  she was my constant companion.  she wasn't difficult it just made the tasks take longer

My chief complaint: I was so so tired.


bela
Posted: Tuesday, June 12, 2012 3:51 AM
Joined: 12/15/2011
Posts: 4105


You are so tense for all the reasons you stated and more!  I am so bottled up that i haven't cried in 5 years and I have had every reason to; i had a few tears a few weeks back but no real crying.

My body has just gone into numb mode.  I can do what i need to do for mom and love and I show that and feel the love and I am grateful but otherwise just a machine taking care of business. Numb.

My birthday was last month so I got an hour massage...yep all tight in the left shoulder area...one hour was too much.  Start at the low rate and pay for more if needed.

There's no time, at least for me, to get ahead let alone catch up and that caused alot of tenseness for me..if it wasn't medical, it was financial, emotional aways something that had to be done.

I would never send my mom back to So CA but there was a time when i fantacized about dropping her off at my sisters front door and leaving mom there with her suitcases.  OMG.  How bad was that?


JessieBelle
Posted: Tuesday, June 12, 2012 10:26 AM
Joined: 5/21/2012
Posts: 276


Last night I did something relaxing. I subscribe to Netflix instant viewing. I found a comedy about Alz with Matthew Broderick and Alan Alda, Diminished Capacity. It was kind of dumb, which made it more relaxing. If you have Netflix and 90 minutes to spare, you might enjoy it. I wish Alz could be so much fun as Alan Alda made it look.
dutiful deb
Posted: Tuesday, June 12, 2012 10:03 PM
Joined: 1/1/2012
Posts: 1856


I'll have to look into that one! There was a movie out a few years ago, with James Garner and some other actors whose names escape me. It was called The Notebook, and I'm sure I'll get "booed" here () but I really didn't like it that much. It was really popular and had a few good moments, but for the most part it just wasn't my thing.
firestar802
Posted: Tuesday, June 12, 2012 10:27 PM
Joined: 6/5/2012
Posts: 51


 Sometimes I think it would be wonderful to do caregiving as a community. Written by JessieBelle.

How much I agree with that. I saw my aunt take care of her my grandparents and she always had advice from her brothers. Of course they didn't participate in the care of their parents then I saw my own mother take care of my father who was such an angry person and who drained my mother. I literally saw my mother dying before my eyes and she was the caregiver. I actually prayed one day for God to take my dad. So understand how worn out you are dubtifuldeb. I was there at the end of my 16 months and I can tell you that even as my little friend is in the nursing home I'm still dealing with feeling like a soldier who has come out of a war zone. I still exhausted and I don't feel like talking to alot of people not even at my church.

You need a break possibly time for a vacation if it's possible... I won't say anything else because I didn't have to make the hard choices for my little friend but I'm the caregiver holding the bag of negative emotions. God bless you..


firestar802
Posted: Tuesday, June 12, 2012 10:31 PM
Joined: 6/5/2012
Posts: 51


Hey Stillwaters

I didn't get the benefit..mine was weight gain, exhaustion and I'm having a hard time focusing and sleeping and add the pain I feel in my body. I can barely walk now because taking care of Ms. A aggravated my back and knee again.

I must admit though I love to cook and bake it's like therapy for me

 


overwhelmed
Posted: Wednesday, June 13, 2012 7:45 AM
Joined: 1/23/2012
Posts: 152


MM wrote:

Hi Overwhelmed,

 

I don't know what town in Iowa you live in except you are in Central Iowa, but you should check out this link.  They would probably be a good resource for respite for you.

 

http://www.agingresources.com/ 

 

 

This link for the national agency on aging lists resources by state.  There might be something there for you too.

 

http://www.n4a.org/about-n4a/?fa=aaa-title-VI#IA 

 

It is so important to get respite for yourself!!  You might also try some of the local churches to see if they have volunteers that would be a companion for your DH for a few hours a week. 

The hardest thing for me to remember when I get a few hours to myself is to focus on myself and not what all needs to be done for anyone else.  The time is for me!!!!

 

I hope this helps you a little.

Big hugs to you!!!!

MM


 

 

 

Thanks for the info but the closest in distance is Waterloo and it doesn't cover our county and it is still almost an hour drive from here.  Kind of a long trip for a few hours of day care for DH unfortunately.

 

And unfortunately our churh friends have gone the way of all our other friends......they all are just too busy to be botherd with us, I guess.


cb55
Posted: Wednesday, June 13, 2012 8:18 AM
Joined: 4/6/2012
Posts: 67


I had to laugh when you said you keep saying " I don't know".  That is my response to 80% of what my mom says.  I couldn't keep up with what she "wanted" to hear and it was exhausting. And like you if I said the wrong thing it brought even more questions that I had no answer to. 

  I tell everyone I've become the stupidist person on the planet cause "I don't know" anything anymore. 

 

I ache, hurt all over most of the time, it's the stress, it just builds and builds.   When I can find time to work in the yard or something physical I feel better, least I know why I hurt after mowing the yard.   I go to a chiropractor that helps out alot. Used to get a massage once in a while but don't find time for that anymore. 

 

I have a chin up bar that I actually used to be able to do 10 chin ups on,  weight gain has put a stop to that but every day I just hang on it, stretch out some muscles. 

 

Just wanted you to know you're not alone, stay strong!


JAT
Posted: Wednesday, June 13, 2012 11:42 AM
Joined: 6/12/2012
Posts: 2


I literally feel your pain.  I, too, am tense all the time, which is causing me physical pain.  I am the sole caregiver for my 91-year-old father.  I am divorced, no kids, and the rest of my family lives thousands of miles away.  I retired last year (although I'd been off work on disability for three years).  I've been caring for my dad for 2 1/2 years, the last 18 months of which he has lived with me.  He is the sweetest, gentlest, most easy-going person I've ever met.  Yet, sometimes I feel like I'm losing my mind.

 

I can handle the big things with ease....the accidents, the weeping, the reminders.  But the restlessness, the Sundowning, is driving me nuts.  I'm having a very difficult time hiding my frustration from him.  I know I shouldn't break down in front of him, but at times I get to the point that I don't care what he sees.  I take him to an adult day care twice a week.  With the round trip drive, it leaves me four hours to myself, which I use to run errands and do things at home I can't do when he's here.  I do have a care agency I use when I do have a chance to get out, but of course, the agency and the day care all cost money (it ain't cheap!). 

 

Since retiring (I spent almost 39 years at the same organization), it seems I have lost who I am and I've lost the people I interacted with daily.  My circle of friends has shrunk.  I've lost several very dear friends (one to cancer and a couple to apathy).  I take my dad back to his church every Sunday (a half hour away) and the people there are wonderful, but they're all very elderly (70's and up) and cannot make the drive out to see us.

 

I know you're all probably bored by now, but I just feel so alone.  I cry waaaay too much, I "scold" him way too much, and I "shut down" way too much. 

 

My Alzheimer's support group says I'm way too hard on myself but I feel like a failure.  I was so successful at my job and yet I suck at this.


dutiful deb
Posted: Wednesday, June 13, 2012 12:00 PM
Joined: 1/1/2012
Posts: 1856


I feel such empathy for those in the same boat, and I can't imagine what I'd do without my work. I am the head teacher at a childcare facility. I manage the curriculum, plan and oversee activities, direct staff, assist in coordinating the staff schedules, discuss situations with parents regarding their children, and a lot more. I love it all. I have planned out the whole summer program, which will include things like Farm week where we'll make butter and have a stick-horse rodeo, circus week where we'll make Elephant Ears (fry bread) and a lot of other fun things. I feel like I pour my creative juices into my job. The thing about my job is, if I am swamped with work I can get someone else to help. There are times when I have a staff member on site to be with the children while I catch up on my work in the office. If I need a lesson plan done, I can get another staff member to do that for me. If I need a day off, I can tell my boss and she'll arrange it. But with my mom, it's a different story. I don't have anyone I can call on to take Mom for the day. I have a niece who takes her out for dinner or shopping which gives me a break, and Mom's neighbor is taking her to afternoon appointments all this week, and I feel like I've been given a great gift there. But I still have the bulk of things, and I'm the one Mom is villainizing. She is nice to me to my face and says she appreciates me, but she's telling other people that I'm making up this dementia thing and trying to put her into a "home".

 

So. Today I went to Wal-Mart and figured out how to use the photo machine. I printed three 4x6 pictures for a grand total of 84 cents. I also discovered that I can get pictures made into these nifty little photo albums for pretty cheap, which will save me a lot of time and money doing up a bunch of albums. So there is a fun project in the future. When I went to Wal-Mart, I was alone! How cool is that! So I took time to buy things using coupons. I had a coupon for 3 dollars off a box of canning jars, so I used that. They will probably sit in my basement along with the other things in my procrastination pile, but hey , it's a start. While at Wal-Mart I browsed through the clothes and bought an outfit. Brand-new. Not off a clearance rack or from the thrift store. Yay Me!

 

So, I am proof that there is hope. Early mornings at Wal-Mart may not be on our bucket list, but it was enough for me today. I think there needs to be a caregivers "bucket list", not necessarily the things we want to do before we die but the things we would do if we could just have a whole day, or even a couple of hours, to ourselves.  


daughter taking care of mother
Posted: Wednesday, June 13, 2012 7:35 PM
Joined: 12/18/2011
Posts: 315


dutiful deb, I have to say THANK YOU for starting this post. It was almost like reading my story. Then when I started reading some of the other posts I started laughing and the more I read the more I laughed. My mother said I need you to read out loud what you are reading. 

I thought this isn't really funny, but it just hit me in the face because of how I was feeling and made me laugh.

My neck, shoulders, and into my skull has been hurting me like crazy and I went to a chiopractor (sp) for four treatments and then I found out I had a kidney infection and cancelled my next appointment. When I went to my MD she said why don't you go and get a massage and see if that helps. Well, the past three weeks I have been getting a massage once a week. The first week for one hour, the second week thirty minutes, and this past week  for one hour. Next week I will have a thirty minute one.  The hour long was 55 and the thirty minute was 30. I thought this is for ME. The lady giving me the massage told me I am so tight especially in my left side. She will tell me I need to relax as she is working on me, I CAN'T. I feel like I am about to break into. I have told her about my situation.

GO AND GET A MASSAGE and maybe that will give you a little time to just relax. I feel like I am relaxed even if I am not because at least I am in a semi dark room, with soft music playing, and getting someone working on my tense muscles.


JAT
Posted: Wednesday, June 13, 2012 7:53 PM
Joined: 6/12/2012
Posts: 2


It's funny you should mention a massage.  My Alzheimer's support group all told me today that I need a massage.  Anybody know how to go about finding a reliable one?
JessieBelle
Posted: Wednesday, June 13, 2012 8:57 PM
Joined: 5/21/2012
Posts: 276


JAT wrote:

...

I can handle the big things with ease....the accidents, the weeping, the reminders.  But the restlessness, the Sundowning, is driving me nuts...

The restlessness is very difficult. When my father was alive, he would go to bed at 6:00, and I knew the rest of the evening was mine. After he died, my mother went to bed at 8:00, and I knew the rest of the evening was mine. Now she gets up every few minutes on some nights and I hear her moving through the house. She doesn't come in my room usually, but I am still listening to make sure she's okay.

I am very selfish with my evening hours, since they give me time to do what I want to do. My father never wandered. He was not very mobile. Sometimes he would wake up and quote Bible verses, then go back to sleep. My mother, however, gets up and down. When I come in I ask her what's wrong. It is always something like she has to go to the bathroom. But I know she just went. The next morning if I mention her being up and down the night before, she doesn't remember.

There is something particularly frightening feeling about having a parent wandering around the house in the wee hours. It is like waiting for something awful to happen.
bela
Posted: Friday, June 15, 2012 12:47 AM
Joined: 12/15/2011
Posts: 4105


they have baby monitors with video now; would that help you?  I would never let my mom walk around alone; too many ways she could trip so i sleep with her so i know when she gets up but she doesnt get up.  she's like a bug in rug when she sleeps with me
JessieBelle
Posted: Friday, June 15, 2012 12:52 AM
Joined: 5/21/2012
Posts: 276


My mother is still fairly independent, so I listen and watch, but try not to interfere with her. A monitor wouldn't be too useful right now, but it might in the future if she starts to wander or do unsafe things. Except for one or two unusual things, her getting-up-and-downs have been uneventful. (One time she got lost in the hall, so I told her to always turn on the light. She has been doing that most of the time since then. Maybe it will become a habit she'll keep. She couldn't do it before my father died, because the light would have woke him up.)
lainey2602
Posted: Friday, June 15, 2012 1:09 AM
Joined: 5/16/2012
Posts: 45


would it help to give her something to help her sleep? even melatonin?or something over the counter.. natural?  chamomile tea? I know its a symptom .. and my mom gets up at night from what my dad says but i read all over about these sorts of things if its causeing the caretaker to not sleep and therefore end up having more issues?
slewis
Posted: Friday, June 15, 2012 9:36 PM
Joined: 1/10/2012
Posts: 1


You are not an awful person at all - you are such a good person because most people would never endure what we have to endure with our parents. My Dad has Alzheimer's and I moved him to live with me in Houston from NY (because he stabbed my brother that lived with him) and most days he's pretty ok - but these past few days - he has really been testing my patience and working my nerves so bad that I could barely work yesterday. I had to come home and sleep because my head was pounding and my stomache aching (stomach still is). I think I'm getting ulcers.

 

So hang in there - and don't be down on yourself. You are the best child a parent can have!


conniejane
Posted: Friday, June 15, 2012 11:36 PM
Joined: 5/28/2012
Posts: 13


Dear Deb, Your situation touched my heart.  My mother had A for almost fifteen years.  She too tried to keep up with everything.  Have you read the 36 hour day?  It was recommended by my mother's physician when he diagnosed her A.  It is a terrific tool.  Full of things that help.  When needed, I would tell my mother that I did not know but I would find out, and that she needn't worry.  This was often a lie that was kind and relieved her of the need to control.  They can't and we do them sweet kindness when we use the tools to relieve anxiety.  My mother lived in her home until I moved her to Memory Care, in her home town, in the county where she was born.  She never wanted to leave, so I did the long distance, three phone calls a day, packages, frequent 500 mile trips.  And I would do it all over again.

 

You may be on to something about your mother needing more social interactions.  The last fifteen months that Mother lived in her house alone--she was my Pajama Girl.  She felt bad and mostly stayed in bed.  My three brothers in the same city were very little help.  Four months after she moved to Memory Care, she had roses in her cheeks again, she dressed and interacted with others every day, she was "at home", and never remembered the house that she and my dad had built and lived in for sixty years.  She was using all the social skills that had been a joy to all around her before A.  She died last November, at home, as she wanted.

 

So, try the book if you haven't.  It will make you cry, but is worth the start and stop it takes to get through it.  I felt like I lived with one foot out the door, ready to leave in a moments notice.  I truly believe that God forgives all A lies that bring peace to our loved one. 

 

For me, like it sounds it is for you, it was a reversal of talents and energy.  My mother and I filled out a book about her life.  I happened to see it in Barnes and Noble.  I would ask the questions and write down her answers.  Sometimes she and I would talk over two or three questions a night.  It was fun for her and I loved it.  When her memory faded, we could pick up the finished book and "talk" about it again.

 

Enough from me.  I wish you good choices.  In my heart and action I felt such responsibility to make the right choices, be there at the right time, keep Mother in the world she loved.  The truth is we can only do the best we can with the information we have.  I wish your mother love--and I think you give her that. 


mrsrich
Posted: Sunday, June 17, 2012 7:24 PM
Joined: 6/17/2012
Posts: 3


don't feel bad.  I'm going thru the same thing with my mother-in-law with the exception that she goes to an adult day care facility daily because I work from home and cannot care for her. My husband has his own business and she lives in an in-law apartment in our home.  Two things, is there a possibility of A. putting her into a day care facility that deals with dementia/Alz or having a care giver come to your home a few hours so that you can have a few hours a week to yourself? Just this weekend, the two people we have who helps us on the weekends, one is my husband's step sister (this is not her mom) who is a lovely woman and she herself is 70, she takes mom to the family lake house sometimes in the summer is starting to have difficulty taking her and my mother in laws sister who takes her to church on Sundays told us today that she didn't think she could do it anymore.  My mother in laws behavior has become so nasty and aggressive it's hard to be around her.  She is very bossy and yells and screams at my husband all the time.  Those of us who are caregivers must take the time or find the resource to get help because if we don't; we will need help ourselves.  Caring for someone with Alz/Dementia is extremely stressful and when your own life becomes a prison sentence you must act to reach out. There are all kinds of organizations - Catholic Charaties Respite program does a fee scale based on their income.  that might be an option for you a few days a week since it sounds like your mom is mobile enough.  I wish you lots of luck - as i pray for my own patience each day.  I have three teenages, two in college and one still in high school; the stress of caring for my mother in law has affected my heath too.  my blood pressure is high and i was just put on medication. I also started therapy to talk to someone.  Caregivers need a lot of support... Again, lots of luck to you...