The Caregiver... How are YOU doing today?

Hey guys good sugggestions...we used to do movie night with the kids when my hubby would come home every couple of weeks...auntie threw a big fit at breakfast one sat morning sarcastically saying "moooovie night" you guys had to have moooovie night!" Cause we slept in and it peed her off. I told her we had been doing that with the kids for years,at home. She told me that life changes...and I had her to take care of now....I told her she was welcome to stay up and join us...she had a three year old tantrum about it. I got up and walked out. She went on to complain about it for days. But ya know what we still have them. And I still sleep in on sat. Its been a big fight to get it that way, but I think she either understands or dosnt care anymore. Lildeb how aweful for your sister. That must be so hard on her. I'm glad to hear she is leaving him and didn't chooe his word over her daughters, that happens all to often. yes they get very very selfish. auntie is very jelous of my sister,my friend and haws tried to alliante everyone that comes around. Maybe if you know this might happen you can head it off at the pass. All you can do is be insistant that she needs you right now also.yes life around us dosnt stop when we are caring for them. Somehow they think it should.

church- i know what you mean dad has a drs appt tomorrow. And that will be nothing but a waste of time. Love and hugs everybody stormyyy

Notlikemom, sorry your mom gives you such a hard time, but it is her lost on a good home cooked meal and not to mention the enjoyment of the company. Try your best to just over look her as much as you can.

Jam, you got your hands full but try to look on the small bright side, at least the beast sleeps sometimes so you can get a breather or two. Have you tried to distract her with a old song she may have remember when she was a little girl to stop the constant repeating? Of course, she may get tired of hearing the song over,over,over,over... hang in their for I am going through similar situation with my mnl. some minuets are good and some are not, some hours are good and some are not. My mnl has a small organ and will play on it for a while and it helps her sometimes relax as well as I.

Allshesgot, I'm sorry you all are not able to sit at the table as one whole family anymore but you are doing an amazing job by just keeping the family together, and taking care of the Auntie not to mention giving up your time as well. Have you tried just a one weekend family dinner at the table but first get the Auntie in her room already eating so that she is not bothering the kids? Just maybe you can get one day in or maybe a one movie night in front of the tv set while eating popcorn. Okay, that may be stretching the limit but it's worth a try.

dchurchill, I do hope they find something that will help your mom and I don't think the dr sometimes know what a challenging it can be to get them to the dr and not to mention to sit and wait.

ladee, you always give me a laugh and I hope in return we do the same for you to help you out for we all know it's not all peachy king. ; ) I think the prize should be one huge fat golden coffee mug. This was a joke way back when I use to work and I actually got 'PAID' for it. The person who could not say, 'no' to the boss and just about making them-self sick by volunteering for the extra work that was their day off.

I am going to try to help ease some of y'alls worries by giving you some of mine.

I have to drag the mnl today with me to my dr appointment so I can get a refill on my Prozac so that I can handle whatever life situations throw at me. ; ) In the mean while, I will see if he can show me some stretching exercise help ease my lower back pain again. Jam maybe we can exchange stretch exercise to help each other. anyway, I got more for you gals & guys. I just got a call last week that my sister just found out after 17 yr of marriage that her daughter has been molested by her husband the step-dad throughout the years!!!! Now her daughter is already grown, married and has a child and I guess he gets away with no time in jail unless she presses charges but I don't see how that will work now that she waited a few years after she moved out. I don't think she wants to go through all that court stuff too. As for my sister she will be coming down and staying temporary into the mnl house that she once lived, diagonally down the street. I'm trying to get all the mnl stuffs that she has accumulated in order to give my sister room to get back on her feet. Now she has a small drinking problem but has been able to work as a manager or assistant all her life. I will have to set some rules of her not coming over here if she is drinking and she can smoke outside. She can smoke & drink in the other house. I have no idea how to give her reasons to live for except, that she does have family here that loves her. 17yrs of marriage and finding this out has to be very hard on her as much as it was on her daughter. The mnl was told what would be going on at her old house and now everyday she ask me didn't I tell her someone that is related to me will be staying over at the house. I told her yes and asked her does that bother her and she said no. She was upset that I will be spending my time with my sister all the time and none with her. ( a bit selfish if you ask me). But, I she is use to me right under her shadow or vice verses. : ( I try to explain that I will have to sit down and talk to her to help her help herself get back on her feet. Yet, I will be here for her too and maybe she could help give her some advice. (trying to help her be needed by others and purpose in life for the mnl).

So, I am working on that golden coffee mug but i rather go to "OZ' to see if the yellow brick road WITHOUT having to deal with the wicked witch please. Everyone try to have a nice day.

welcome bigpeg, sorry you are with the triplet to Notlike's Mom and the lady I take care of.... all of them are the same.... her husband has Alz, and is always tellling me thank you, telling me lunch was good, ect... not her, and him and I laugh all day about something.... not her.... it is so hard to be around people like that without getting down ourself... so come here and vent and find a few things to laugh about.... you are not alone.... we'll just compare grouchy charges and maybe set up a prize for the caregiver who can put up with the most and not go to jail....
DC, sorry it is Dr. day again today.... that in itself is exhausting.... come back and let us know how you are....
Need to get ready to go to the land of "OZ", and I get to see the wicked witch every day.... I am so blessed.... love and hugs to everyone...

Starting my third day in a row off at drs offices with mom. Seeing them isn't changing anything.

ASG-The playset sounds wonderful! Glad you found a solution for the summer. And hiding in your room isn't all bad- at least you get some peace! I've started to close the door to my room when I'm reading or watching tv. It's nice to be left alone for a bit.
BigPeg-welcome! You are not alone. It's very hard to stay positive when someone is so negative. Laughter helps, and we have alot of that here. Hugs. I try to get Mom to eat with us once in awhile. Sometimes I start to feel like she likes her tv shows more than us. Sometiimes she'll talk, but only if she wants to say something. We've had entire meals where she did not say a word. And it doesn't help that she refuses to eat almost everything I cook. Dad will usually eat what I'm making, and then she gets mad that he doesn't want a tv dinner with her.
Mom will spoil the kids, too, before spending a dime on my Dad. I think it makes her feel important to send boxes full of junk food, or pay for something they want. Dad and her went bankrupt just before they moved in with my sis years ago. Mostly because she refused to help him with his business at all, but expected him to provide for her big time. She's spent every dime they have since then, and keeps him on a tight budget for his wants/needs, as punishment. She sees the whole thing as his fault, and lets him know it almost daily.She could be difficult before that, but since the bankruptcy, she has gotten much worse. Some people do not deal well with life's troubles, and she is one of them.
Not pleasant thoughts to start the day. Switching gears...going to be busy at work today, which is good. Should be able to make up some of the time I was gone Tuesday. And it's almost Friday!

Jam...she was better...but in the last few weeks she's come alive again. Someone mentioned aricept to me...I thought hmm drag this out longer nope! Now if it had been caught in the beginning...before she turned mean...I only wish we had reconized it before she ever lived with me. Mil did say she was losing it before mil passed away. At this point, for her sake and ours, why even try to drag it out. Sorry if that sounds horrible. But this is a horrible situation for her and us.

And come vent here anythime. I know what its like about not staying in assisted living. Auntie spent one night in a nursing home for rehab and called the next a.m. screaming to come home. No thanks to a therapy girl who told her her she could go home and her family could bring her in for out patient...indecember!!! While sshe couldn't walk!!! I was furious, sad, confused all negative emotions I think I felt that week. I so so needed a break. And still do. One is yet to be seen. Tried to get her to stay, but when I walked in and found her that after noon, soaking wet(she is not incontinet) in a wheel chair..crying reaching for the bathroom...I said enough. Never mind I will bring her home. So here we are. Its so hard I know. And about nobody wanting to eat dinner with her. I know that to. I used to pride myself on ALWAYS eating supper with my children at the dinner table every night. That's something we didn't do as a kid, supper time with her here became so misrable last summer, I talked to the kids and tried and tried to get them to ignore her. One by one they started not coming to the table till she had eaten one by one I allowed them, when one wuld stop eating with us, the next would be her new target. Now she eats in her room most of the time, they eat outside, or sepratley. I just make their plates put them on the counter and let them come get it when hey are ready. I hate hate hate what happens to them when they get dementia. I only hope my kids aren't to old when she goes to a nh or passes on to get them back into a normal routine. Also mine gets angry as well if I leave. Some of the biggest tantrums have been because we had to be gone for a few hours. I miss school functions if she is in a bad mood, we rarely take the kids to do anything, I try to give them fun things to do at home. Its the best I can do.

Welcome bigpeg......my heart goes out to you....taking care of an ungrateful person isn't easy. Did the assisted living not work out because it wasn't what mil wanted? Sometimes it just doesn't work out to have them in your home....as much as you may want that. Remember that the dementia WILL get worse and believe it or not I have seen some people go from being mean to little sweeties when the dementia goes into overdrive....getting old isn't for sissies and I'll probably be cranky too.....but there comes a limit to how much we can tolerate to keep our own sanity. The big question is what do you do for yourself? And what do you want to do with the living arrangements? Sending big hugs to you today and hope you find this a good place to come for support...we have a lot to go around.

ASG........sounds to me like Aunt is becoming a real handful.....next she'll start making those phone calls with heavy breathing....:) It's a shame you have to hide in your room.....on second thought maybe that isn't so bad.

Got the fabric yesterday to recover the col's dining chairs so will start that today after I get one coat of paint on another table. Or I guess I will get done what I can before my back starts screaming at me again.

Sending angels to all of you to help you through your day..........

Love and Hugz,
Jam

Bigpeg....has she always been that way? If not it may be from the dementia, I've learned that that flat effect, as well as apathy. Meaning they have no sense of what someone else is feeling or care what comes outta their mouth. Auntie has been doing that for the last several years, just being plain mean sometimes. She never was the huggy type, but she wasn't mean, she was nice to children, people but now. She just dosnt care.she was getting onto my nephew for dinking out of a bottle calling him a bottle baby and being mean about it. He was drinking outa a sports bottle. They do have meds for that. You might try speaking with her docotr.that's tougt.

Ooh we found a playyard off of craigslist....for two hundred dollars, for the kids, it was old but its huge, it has swingsets, monkey bars, 2 level playhouse its huge, and wooden. We put it in the front yard(outta aunties view and into mine)we painted it...replaced some broken ladder slats, put mulch all around and its as good as new. So now they have there own little playground in front so they won't get picked on by auntie this summer:) they already spent most of their free time out there. A little elbow grease, the kids all helped. I about went insane all last summer with them and her all on top of each other in the house. So hopefully this will help. They didn't want to go outside, in back where they played she had full view, would peck on the window at em, call for me a million times over nothing. Then she would yell at em for this or that when they'd come back inside. I think we all felt like prisoners last summer. I'm praying its better this year.

I really know how you are feeling!! I have had my mother-in-law now living with us for the past year....and some days I feel like Iam the one going nuts! She also has slight dementia along with other health issues. She fell back in summer again in December. After the fall in December she ended up in the hospital, skilled rehab and the we decidied to place her in assisted living. I felt so free during this time...however, the assisted living was NOT working out at all...so, Yes, you guessed it...shes BACK!!! I might add she has five children....not one of them call or come to visit?? My husband is her oldest son and would have nothing at all to do with her if I did not. My biggest problem is my MIL is one of the most miserable, unhappy, ungrateful person I have ever known. She NEVER smiles never!!!! She is one of these people that feels entitled...no thank yous nothing?? She has all her meals prepared for her along with the family...however, because she is such a miserable person, NO one wants to come to the table at dinnertime!!! I take care of every single one of her needs...meds, bills, medical care, showering, hair, nails etc!!! When I ask her why shes so unhappy...she just gives me the evil eye....and says Im not unhappy. She sits in her bedroom ALL day and night.....she has a very nice set up..however, she only comes out to eat or bathroom??? Our day starts out by her getting upset with me because I have to wake her for breakfast and meds (8:30).....go through same thing every morning....everytime I have to leave the house she gets mad.....most days Im ok...however, these past few days I have begun to feel great resentment. Just a simple smile or thank you?? Negative people are no fun to be around....and let me add that she has slight dementia......My MOM has no memory left and lives in assisted living for memory issues and not once in her 84years has the beautiful smile left her face!!! Im new here and just looking for some suggestions.....Have a great day!!!

My boys found crawldads all over the property to. We have had a lot of rain, not sure where they come from but we find one or two here and there. Well they found a whole mess of them. They laid them right down on my table!!! Wasn't that sweet of them. I walked through there and was like...what on earth is that pile??? Yep crawel dads. I told em next time bring them to me and I would boil them so they could taste em. They looked at me and said oooh, I said well don't put em on my table then. Lol...not sure they realized how serious I was:)

Ladeeda!!!ROCKS!!! We were spring cleaning the yard this weekend, I'm cleaning the back around by where aunties room was built on, looked down and in a small gully where they had dug in the yard were 2 large size rocks, with Quartz stone all over it...like shiney diamonds:) ok like cloudy diamonds but beautiful to say the least. I thought of ya. They had dug into the ground and over the last couple years the rain had washed the dirt away to uncover it.

Angela...I'm glad to hear the family decided that, hang in there jam gave you some good advice. I didn't even know some of that. I'm not sure how long you have been cargiving but there is bound to be a light at the end of the tunnel, for you it sounds closer. Auntie told me, ok I could put her in a nursing home,if she dosnt know what she doing or where she is at.but she only has enough money o pay for one year.she just gets s.s. I'm not sure what happened to her veterans pay. It seems like she used to get a very small check from them. Her hubby was a world war 2 veteran, a prisioner of war. Does that make a difference? Nowing her problem is progressive, and probably long haul, I've been thinking at some point when she dosnt know where she is at anymore I might try to place her. The thing is, from what I've read, that point won't probably be here until the end. I think I. Could handle things better if she couldn't talk or walk. It dosnt bother me doing the physical part, its like the menatl stuff that drives me insane. She has a good room I could care for her in,and knock on wood my backs still good dispite years of lifting on people.anyways...sorry I trail of into stories to much. You will figure something out. Where there is a will there is a way.

Good morning caregivers!!! Notlike...my mil was that way. Shed go broke to buy new dresses for other grandaughters when they would have to go to a function. She dolled my daughter a a couple times shortly after we were married, when I realized on her small mothly check it made her run short I wouldn't allow it any more. I thought I was doing the right thing..she got such joy outta doing it, now that she's gone I think hmmm...if I hadda known those were going to be her last years I woulda had a different view oh well.Laddee thank you for your nice words, I do everything just like you and the other caregivers do...one day at a time. You cry, you wake up, you keep going. I've. Gotten to where I waste a good part of my afternoon while the kids arre gone to school hiding out in my room. Taking a nap, reading anything. Its my me time, sometimes I think oh I could be getting this done or that, but I make myself stay in there. If she hears me in the living room she comes out, if I don't. Stop what I'm doing and sit with her she gets mad and throws a tantrum, so I stay in my room. Yessterday while doing that I heard her ramsacking the kitchen(so unlike her) so I came out to see if I could get her something..she sets down at my table and calls this man in the city who is buying a house off of her, (he dosnt pay his payments like he should, but is in the process of paying the last couple payments) anyways, she tells him she has an attourney now(he's just handeling the final paperwork on the house) and she dosnt know what her attourney will do to him if he dosnt call her back. He might even thouw him in jail....I'm like holy cow!! Did she jjust say that? So after the very mean message, her cell phone rings, and rings and rings, I said your phone is ringing..oh she says. It was the mans ssecretary/wife...so she continues on her fit to her, says its a good thing you called me back, the cops might be on their way to pick ya up. And on and on. I just let her rage at the poor woman, figured at least I'm not her target. The woman told her she was gonna tell her attourney about the calls they have been receiving! Aunties like I don't care. Tell em, they might put you in jail too!!

Shelia-very nice. Thanks for the hope!
Ladee-Mom and Dad do pay utilities, and they actually buy most of their own food. But Mom is so tight with Dad that I often buy him things, including OTC meds. My sis sends a check every month for him too. I cash it and give him the money, so he has something in his wallet. Mom doesn't know about that, which is pathetic overall. I know that things do get tight around here if hubby doesn't get much spring work, and I guess I just don't want her to know. She would see it as a failure and I don't need that. So it puts me in the position of having to "keep up appearences". Not yipee.
Vic-hope you do get some answers. Hugs.
Radiation went well yesterday. Dad will take her to the appointments (whew!). I talked to the doc and she will call me if anything comes up. She would just like me to be there for the last session in three weeks for the wrap up. That's do-able.
Have a good day everyone!

Beautiful Shelia, thanks for sharing this, gonna put this in my 'favs'...... a butterfly, yeah, like that a lot.... hugs...

The Brain of the Alzheimer's CAREGIVER


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By Claudia Marshall-Apers
Alzheimer's Reading Room

A spider sits in the middle of its web, spinning.

That spider is the brain of the Alzheimer's sufferer.

You jump into the web to help free the Alzheimer's sufferer. Instead you become trapped in the web as well.

The spider wraps you around and around with its amyloid plaques and tangles. You suddenly feel like a cocoon, unable to move. Oddly, no one is jumping in to free YOU, the accidental caregiver.

This makes you angry.

But you are too busy dealing with the situation to dwell on it. Yet you don't know how you can keep this up and for how long. What if something happens to me? You feel pretty sure that it will.

Slowly, you figure out how to function in this position in which you find yourself.

Somehow you learn how to breathe, move and meet your own needs as well as those of the Alzheimer's sufferer that you are helping.

You find out that the more you smile and create positive fun experiences for both you and the Alzheimer's sufferer the better they are and the better you are.

They smile. They laugh. They say things that make you smile and laugh.

You begin to break free.

You have figured out how to provide Sustainable Caregiving.

The spider has not devoured you. A wing emerges. You have become a butterfly.

That is terrible in this day and age that you have to wait for results when they are available so fast to the docs.

D- know what you men about the pollen! It has been terrible here too. Dad gets sinus crud easily so I havent been able to get him out much so I can play in the yard. Today wind was down .. So I have dad and mom both sitting on porch. Nice!

Well dad had appt today to get procrit shot ... His red blood count was good so he didn't need shot. But they didn't get other bloodwork from primary doc.. So no answers about inflammation .. Just feel down and like I am getting a run around. Hematologists nurse was real sweet and understanding of the situation..she is going to call the other docs office to get the bloodwork ..talk to the doc and call me to let me know what is going on. Not really going to hold my breath for any answers. Figure I am going to have to take dad to see primary doc for him to check him out again before I can get any help. Such is life...
Hope everyone is hanging in there and having the best day possible.

Sonny and I even worked in the yard yesterday, we pulled weeds, he hasn't been very active this winter, so we pulled a few and sat for awhile, he seemed to enjoy being outside... he has had this bad cold too, she finally was giving him his meds like she was supposed to, so he is much better now....
Notlike, do your parents not contribute to the family income??? I would think they would at least pay something to help with lights and gas. Much cheaper than a NH....Will hubby and son be able to take some of the traveling stress off of you by taking parents to Dr. and radiation???? Sorry things are so onesided for you, you will definately need a vacation soon... love and hugs...
Austin, sorry to hear about your friend Winnie, you are in my prayers and enjoy working in the yard...
Everyone else, have a good day if you can, get outside for a little while if you can, let the sunshine hit your face for a few minutes... love ya'll....

I did pick daffodils and put them in a vase, but it's March again here and colder. No more June 80 degree days for awhile. Still need to finish raking, so it's good weather for that.
Both hubby and son are laid off. It happens this time of year in construction. I knew it was coming, but I'm stressing anyway being the only one working with 5 mouths to feed. This too shall pass.
Dad's leg looks alot better. The calander is FULL with Mom's radiation every day and all the other appointments. April will be a busy month.
Hugs to all!

I have been working out in the yard pruning the snowball butrees and the butterfly bush and racking and weeding and will be starting the sunflower seeds soon but last night we had a freeze so will have to check the baby rhubard plants that just came up but there are lots that I have not uncloverd so they should be ok-my lawn needs mowing allready-lots of work to do outside-at least I was able to sleep last night after being out in the fresh air.

JAM...I have not heard of that but just hearing a NEW IDEA gives me hope!! I will look into this! Thank you so much! Its 2:30am and I am awake stressing about this....but your information gives me hope...so Im going to bed now!!! Thank you for the "tuck in" haha! Goodnight all! or good morning to some of you. THIS CARE GIVER IS POOPED. zzzzzzzzzzzzz

Welcome D! Glad to see you here and hope you will find this a comfortable place to come. When my mil was still living here I would have my hands full with her wanting to be right in the middle of what I was doing outside. Even when I insisted she just sit at the table and look pretty while I worked, she still wanted to lie on the ground and pull weeds. I like to be outside also puttering around in my garden. And I will even get the riding mower out and before you know it I have the whole yard mowed....we live in the country and have about a 5 acre yard, so I have lots of room to think.....lol

ASG......isn't it funny to hear Aunt tell you she knows she has mental problems? I have to laugh when the col says "I have Alzheimer's, that's why I can't remember things"........
ladee.....hope Marie was good today. How are you feeling? Much better I hope......

I worked outside in the yard for most of the day. We set the dried grass on fire around the inside of the pond.....have tried to get the darn stuff to burn for 5 years and finally this year it took off. The Canadian geese "regulars" weren't very happy that we disturbed momma's nesting but they settled back down to business. So I'm taking it easy tonight with very sore muscles.......

Hope everyone has had a great day and will soon have a peaceful night....hugs to all!

Vic- Thanks for the suggestion. I've thought about taking her outside while I work but the pollen is so bad right now and I'm afraid it would make her breathing worse. I was able to get the grass cut and it felt great. I enjoy working in my yard, it seems to clear my mind.

Angela.....you might want to talk with an elder care attorney about your options. Here is what we did for the col because she has SS, her retirement, plus a widow's military pension. We set up an Irrevocable Trust with both of us listed as the Trustees. We are the only ones who can remove any funds.....technically she no longer owns the account, we do. Her monthly income goes into the account but since she doesn't "own" it she can become eligible for Medicaid. The hitch is that Medicaid will pay for her stay in a home.....when she dies then we will get a bill to reimburse Medicaid for everything they paid on her behalf. If the money is not there then the bill is forgiven, but we have to be able to show that the money is not there because it was spent on her care. That means clothing, meds if needed, diapers, doctor visits, eye glasses...anything for her care. And yes, funeral arrangements could be included. And believe it or not you can buy a vehicle with their funds as long as it's outfitted with something to make it handicap accessible so that it's easier for your loved one to get in and out of it. An elder care attorney can explain all of your options. Don't let this get you down.....it's workable.....sending a hug your way!

Im overwhelmed to say the least today. The family finally came to the conclusion that we need to place grandma in a facility. It was hard enough to make the decision but after much research we find out she makes TOO LITTLE money from Retirement and SSI to pay for assisted living or nursing home. She makes TOO MUCH to get approved for Medicaid. What in the world do they expect us to do???? 4 or 5 places keep saying, use her spend down. How do I spend down $1600/month in Medical when she has no other issues besides severe dementia? IS THERE NO HOPE??? and no she is not a Veterans wife....that was our last hope.

Catching up on the posts always reminds me that I am not alone and that Mom is not the only horrible patient in the world. There is strength in numbers.
Vic-sorry your dinner got interrupted, but at least it wasn't a major crisis. Hugs.
ASG-Glad you got some answers! Those are some strange foods. And I thought Mom was bad with her name-brand-only and can't-eat-this-and that routine!
Burned-At least someone is making use of the laundry room. LOL Most days, I'd like to start there in the morning and stay all day.
Well, another weekend is over. And it was pretty much the same as the others...a bit of niceness from Mom, and alot more meaness and foolishness. Oh well. I find myself being very crabby lately. It's like I can take only so much, then something pushes me over the edge. I'm hoping this is just a phase for me. At least it's better than before, when I wanted to scream every day.
Radiation starts tomorrow. Three weeks Monday-Friday. I will only go on Tuesdays when the doctor rounds, otherwise Dad will take her. And as soon as that's done, she has another brain MRI. I sure hope all this radiation isn't a waste because she's got more brain tumors. But she knew that was a risk, and wants to do it anyway.
Hope everyone is having a good day.