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Bookworm...u r a very courageous woman..I admire ur commitment under extremely difficult circumstances..love n hugs
Vic...im so sry u r in such inner turmoil. All i can say is, as usual, ladees advice is right on. I will be praying for u that u find some peace...u deserve it...many hugs
Notlike...u realize that this t-shirt idea must now come to fruition!!! I'm lovin the chinese version and plastic idea...n i MUST insist on the diamonds. Afterall....i do have a reputation to uphold!!!!! lol .....huge hugs to u
Ladee....u go girl with ur wisdom.....it's priceless...LYL
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You all had me LOL here this morning! I love all your ideas for what a Caregiver is...and some of them made me think really hard about what we do every day. I'm thinking of a Chinese version, in plastic, with diamons studs on the collar! :)
Ladee-leave it to you to find a way to get your protein! Hugs.
lildeb-Wouldn't it be nice if we could schedule the good days and bad days? Why does a really good day always result in an equally bad one? Sigh...
bookworm-I have one word for you, with what you're goign through, and that's STRONG. Prayers and hugs. You are amazing for handeling all that so well.
Vic-Thinking of you and sending you hugs. Are you taking anything for how you feel? It gets overwhelming at times...we're here for you.
Hope everyone has a peaceful moment today. There's so much work to do here, I might just give up and go take a nap.
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beck, vic. Thanks. I just gotta do what I gotta do. Therapist did note that I don't know how to say No. He even questioned me several times why I don't leave the parents. I kept telling him repeatedly of God's command to Honor your father and your mother..and honoring them includes taking care them. Plus, if I left, and they died, I would feel so guilty. Cuz, I know that I can take care of them better than anyone. When he said that command of Honor the parents and my application of it...is a matter of interpretation. I was shocked (but didn't show it.) But in my head, I remembered thinking, "Oh boy! This is why my religion frowned upon therapy! Oh boy!" Uhmmm..I'm doing therapy without telling religion. Well, it's either suicide or therapy. I chose therapy...and you guys ...also frowned upon (online -that is). But, I'm no longer in the deep dark hole so I must have chosen right.

Stormy, several years ago, I was on a business trip. I met this older woman. I mentioned mom being bedridden. She told me about her grandma being bedridden too. Her relatives built this wooden structure that she layed on. They even cut a hole on it so that her butt goes on it. Then when she needs to use the "restroom" she proceeds to do so. When she died, they found ants on her bottom.The ants had eaten some of her flesh. She was crying when she told this story. She looked me in the eye and made me promise to keep a sharp eye on my mom. To watch out for the ants because they will eat her. So, I was on the lookout since then.
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Vickie Vic, maybe praying for forgivness with your brother will help you some.... this started when you realized the games being played, and your resentment that you are doing all of the caregiving is very normal..... go talk to your priest about this, it is eating you up from the inside... you get your own blessings here.... and yes that sounds shallow when you are in the trenches everyday..... you are hurt, acknoldege that hurt, it is reasonable and valid.... none of this makes you 'less than', and yes this is all words words words..... ask God to help you heal those feelings..... and if you can't move forward, then it's been past time for you to make other arrangments for thier care...which I know you won't do.... pick your pain here Vickie Vic.... you are so hurt and angry at your mom.... it's ok, there is reason to be hurt and angry... so are you going to let someone elses agenda ruin your health, your sanity???? You have an awesome husband that loves you more than words can say, children that love you, friends that love you... so pick out of the two, your mom or the others that love you, to validate your self worth..... finding out something like this in the middle of all your sacrifices is a very hard road to travel.... and I do understand.... you are loved by many, you are loved by your mom, but this is eating you up.... get some counseling... get on anti's, do something.... but I am worried about what all this is doing to you..... you are loved , you are awesome, you are Vickie Vic, not another like you on the planet.... I am blessed to have you in my life...... I wasn't the favorite either, and in the long run it turned out to be a blessing...... love you, and love you some more.....
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Bookworm Angels are taking care of you!!!!! Prayers prayer and more. I don't think I could do what u do in that situation. God bless.
Notllike for me would be caged trapped and lonely. Right now anger and resentful also comes to mind. Have been in a bad place for awhile...don't know why as this past week or so the day and night routines have not been too awful. Brother came yesterday so I had a night at my place away...been praying for.a.better attitude. Getting along with mom has been very trying lately. And feeling like I am an outsider when it comes to her and my brother. Seems to me they play little games and I am supposed to know what is.going on by osmosis.
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Forgot to mention...when referring to my father's as the "private part" instead of the "p----" because I'm really uncomfortable saying it. I've been abused as a child. When I change his pampers, I literally blank out my mind and clean him THERE. If I Really Look and See what I'm cleaning, I get all nauseated and I want to Hurt him. So, to help me get through this, I watch the TV while changing his pampers and I blank my mind to what I'm doing. When he gets mad because I don't Really Clean him down there, I blow up and tell him that if he's not happy about it, he can change his own damn pampers himself. He's learned to just shut up and show all these disapproving faces. He's one very dirty old man. So, please understand when I use those words...I'm not being a prude..I'm trying to handle a situation that I really, really loathe! ...I will write more but time to change their pampers..again..
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Angel..my dad pees a lot - prostate problem. I have to use double pampers on him. First of all, I strongly recommend for bedwetters, the washable bed pads. I found some very strong long lasting ones in Amazon.com under the company called BhMedwear. They still sell the good quality ones. Others are cheaper but they easily rip (hear the saying you get what you pay for?) I use this on top of the bed so that IF the pampers fail, it will only wet the bedpad and not the whole bed ...and then you won't have to change all the blankets/sheetings.

Now for his pampers...I borrowed this from when he was in the hospital, which uses Unigard Plus (adult incontinent briefs). My SIL showed me how to wrap his "private" with the Unigard. It's already folded from the warehouse. All you need to do, is make a long slit on the center of it, insert his private in, and THEN, you tape up his Depend pamper as you normally do. Oh, I use the Depend pamper that has tapes on the side....It's the pamper with the ORANGE color with the words, "Adjustable with TABS."

KMart ran out of the Medium/Small size Depends. So I bought the Large. I'm finding that the Large is not so good at all. His pooh/pee tends to leak on the side because it's a bit big on him. KMart is the only one on island who sells the pampers with the Adjustable Tabs. All other stores sells the Pull-ups.

The red color with words Adjustable Underwear is the Pull-ups. I made the mistake of buy 3 pkgs. It's currently sitting in the room being unused. I'm planning to donate it to the respite caregivers. Because dad is bedridden, I have no use for the pull-ups. Can you imagine how messy it would get if he poohs? Ugh!!! I hope this helps you.
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Bookworm- Lord i know you were having a fit with them ants. My dad has a trach and a feeding tube also. I don't know what i would have done if i would have walked in and saw ants crawling all over him I probably would have thought that he had died. I know that was something trying to get ants from around the trach. And the machines, dad has those too. I just about looks like a hospital at his house with all the machines he has everywhere. And he misses the trash can too all the time. I have my little puppy lily that goes with me everyday over there and she is constantly getting his spit napkins and running all over the house and tearing them up. So i chase her and spit napkins for part of the day at dads (for my exercise). I have a tall kitchen trash can (a extra one) at my house and i keep saying that i am going to carry it to dads house and put it by his chair so maybe then he can get those spit napkins in the trash instead of on the floor. Huh. It is so gross having to pick those things up. So i know where u are coming from with the trach stuff.
Girls, i love the t-shirt ideas. When can i pick my up? Love and hugs to all of ya'll. Stormyyy
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ladee...hahahahahahahahahahahahahahahah...(breath)..hahahahahahahahahahahah
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Beck, come on now, it was CHOCOLATE, you know I was gentle........!!!!!!!!
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Thank you very much for your comments. They helped a lot. I know that I shouldn't put my life on hold, but on the other hand, I don't know how not to. I didn't even get a haircut for the first 6 months or go to the doctor. I need to somehow find time for me. We found out we were infertile 2 months before my Dad got sick. Ever since I feel like I barely have time to shower. Oh yeah I forgot to mention I also take care of my 3 year old nephew during the week so I am super busy between the both of them. I just haven't figured out to get some of my life back yet. Hopefully since all the house selling, buying, and moving is over I will. OhioGal I can't imagine taking care of somebody with Alzheimer's. I have seen how it changes people. Thank you for your comment. I am so glad to know other people understand. Are there depends that are good for night time by any chance? I do use the pull up kind but he leaks through them frequently. Thanks again I appreciate your comments and support.
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OMG....bookworm.....u deserve more than this earth could possibly give you in return for all you do as a caregiver. That is some rough stuff...i don't know if i would be strong enough to handle that.....God love ya....Stay strong....hugs, hugs, hugs
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Ok, Notlike...here's my contribution to the lists...love this idea:
I am a Caregiver:
Compassionate
Adaptable
Responsive
Energetic
Grateful
Intuitive
Vocal
Ernest
Respectful

I am also:
Cranky
Angry
Ragged
Exhausted
Grumpy
Isolated
Vacant
Explosive
Resentful

Thats my contribution....can't wait to wear 1 of these. Does it go with diamonds??...lol ...hugs
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I must have been more than tired than usual yesterday. I knocked out and slept through the whole night. Didn't even wake up for restroom break or for mom's coughing up phlegm. I woke up at 615am, and found lots of black ants all over her...there was a Trail of them! I tried not to panic...at least this time, I didn't find them all over her eyes, not moving (busy eating her eyes) or at her G-tube in the stomach. Today, they were all over her trache area. I had to clear them all as much as possible off the bed, then took the baby oil (just for this situation) and wiped down all the bed legs, suction machine and all tubes and wiring connected or touching her bed. The ants like my dad. He feeds them with his water/vinegar/honey mixture. They find him, then eventually they find mom. When he eats, he wipes his fingers on the bedsheet and not on the napkin. I have put 2 small trashcans beside his bed, side-by-side, and he still misses it and his dirty napkins fall on the floor.

notlike...does any of these help with your T-shirt for caregiver...1st caregiver (positive -front view?) A for Accessible....E for Efficient....then 2nd caregiver (backview?) V for Victimized (by family members)...?? I like your idea.
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ladee.....NOW i understand where the "problem child" in u comes from.!!!! Didn't ur mother ever tell u that squeezin anything too hard.......well......its gonna blow...lol
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OMG, I almost had a major crisis here..... it's so hot in my crummy Grapes of Wrath Wagon, that my whole bag of Dark Chocolate Kisses, (full of protien i might add!!) were too soft... so I opened the tops, squeezed it like toothpaste and had my nightly dose of protein.... never ever ever underestimate a caregiver to problem solve...... NEVER...
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I am thawing out hamburger patties for dinner and just relaxing but still tad tired from my drinking and venting with my best friend ...and she needs some venting too. I can almost guaranteed that before my son is in school he will be ready to listen to his teachers but the school didnt send me paperwork for my son. on a good note got one of my 2 tax refunds to go towards bills and then after i pay off my credit card and have some left over gonna buy my psp for them long drives to the doctors with hubby that goes to phoenix...will update ya on what the pumonlogist has to say regarding his emeyma come sometime after next wednesday.
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Today was a very bad around the mnl n y'all may have seen my venting on other places. She started off first thing this morning with the hubby. All he did was asked her to fix herself a bowl of cereal so she could take her meds. I know she don't like to eat much at breakfast or really anything so we try to get her to eat at least a half bowl of cereal n she gets all pissy over that. I try to explain if she don't eat enough the medicine will make her sick. I even told her that I am not a breakfast eater but if I don't won't to get sick I have to eat a certain amount. It didn't help. I guess yesterday was such a good day that, for sure we r not allowed have another one in a row. no,no,no..
The rest of the day she just been this person with several nasty remarks. I decided to cut grass to relieve my stress. I must had been more stressful than I thought for I cut backyard n the front/back yard where she use to live. I am feeling it now. Hubby used the weed wacker to help himself. Their was just no talking to her today. She finally took her a so call non-naps that she don't never do. Oh please. I made her one of her favorite meals-mac/cheese n chicken fingers for I figure that comfort food might help her to settle down. She did somewhat n hopefully tomorrow will be a brighter day for all of us.
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brandywine, your sister don't know diddly squat of the stuff that u do, give up n gain as a caregiver. You r not 'poor' nor 'stupid!' You r the caregiver, whom has passion, loving, hard-working, inspiring and giving. Your sister cannot buy any of these great qualities that you have within yourself, for you r a very 'rich-person.' ; )
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I am also the counselor, the caregiver, the chauffeur, the dishwasher, the housecleaning lady, the parent, and the nurse just to name a few. ; )
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Notlike, I am wanting the last one.... give me a day to regroup and I will add to this.... yes we need shirts.... that are plastic so nothing can stain them, they need to have earbuds on little wires that stick up from the collar, and it needs to be written in Chinese so our charges don't get what they say..... so yeah, give me some time... good idea here..... love ya'll
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Okay, my brain is stuck on t-shirts and I love words. So this popped into my head. Anyone want to add to it? Feel free to change mine...I'd love to see what everyone comes up with.
Once we design them, we can wear them in the Laundry Room! (for newer people, that's a place in our heads where we can hide and be silly. Comes from me having to hide in the laundry room to talk to my sis, so Mom wouldn't hear me! )
I am a CAREGIVER:
Compassionate
A
Resourceful
Energetic
Giving
Inspired
Vocal
E
Respectful

I am also:
Crabby
Angry
Resentful
Exhausted
Grieving
Isolated
V
Empty
Righteous
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brandywine-whatever your sis thinks, we know you are NOT stupid! You are a Caregiver, which means you are wonderful, hard-working, giving, and one of the special people on this planet. Hugs.
We really need those t-shirts...LOL
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Thank you not, for saying such kind things. Sister would definitely not go for the letter thing. It has to be her idea, her way and nothing more. Me, being a Protestant and poor, then I am stupid according to her. So thanks for the suggestion.
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Hi beckncall, I like many types of music but pop/rock is my favorite, especially 80s. I like to see local live cover bands play near our home and take photos of them when I can. (I've been a serious amateur photographer for a few years.) I have a driving fear so I don't get out much, but we have a small stage area just around the block where bands play in the summer for free. We also have lots of pretty flowers around the house that I photograph.

My grandma is 87 and hasn't been diagnosed with Alz or dementia that I know of, but she can be a handful at times, and I'm not the easiest to live with either because of anxiety and depression. I worry about her all the time, but she doesn't want me to hover around her and watch what she does. She is very opinionated and feels she needs to write letters to anyone who will listen. (I won't listen anymore.) She can do some cooking, & wash dishes, and get to the restroom on her own, but needs help dressing, opening bottles, and grocery shopping. Her eyesight has gotten worse in the past few months, which really disturbs her because she wants to read all the time. I think its caused from cataracts and medication. When a friend or family member calls, she acts fine and cheerful like nothing is wrong. They don't know what we go through daily. Weekends are tough because there isn't much on tv to keep her occupied.
Thanks for the hugs & best of luck with your father also.
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Musiclover......b4 i respond to ur post....wat kind of music do you love?? I'm curious becuz i have the same love for music n i should have thought of that name to describe myself...instead i chose to be known as the "parentals slave 24/7"..lol
Anyway, i can only imagine the tension that u must be living with. I don't think i would leave her alone for more than an hour...i would b really nervous. My father, who is 82 n has ALZ, still lives at home with mom, n he still puts on an act that he can be left alone, but i just don't trust the situation. Go with ur gut on that one...it has never failed me. Wat ur doing is a wonderful thing. I kno it doesnt feel like it, especially wen u r so isolated from others and your home doesnt really feel like home becuz of the situation. Keep posting here. This group is a riot, and everything in between. Bring ur problems here n any one of the ladies n gents that hover this thread will be glad to help u out. We can make u laugh, too.....but that cost extra!!!!! Hang in there...Let me hear back..i'm interested to know about ur music. Huge hugs...
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My grandmother can get so irritable in the mornings. If I come in to check on her while she is listening to radio news in bed, she gets upset. When I walk past her, she hides what she is doing, which makes me want to investigate more. She wants to be left alone to read and write religious and political things during the day, and when she gets angry, she walks quickly to her bedroom and slams the door because she says she wants privacy. She is on blood pressure medication and a tiny dose of Seroquel in the evenings.The Seroquel causes her to have slight lip and tongue movements, but she can't sleep without it. I worry about leaving her alone for more than an hour or 2 even though she says she feels ok. We live together and there is a lot of tension in the house. We rarely leave home and friends only call once in a while, so I'm glad to have the internet to vent.
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Ladee I wory that you are getting to worn out with the split shifts-wish I was near you to give you a great hug and help in some way.
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Have a few minutes before heading out to make M happy today.... I did feel so bad for her yesterday, bad reaction to the transfusions.... hope she got some good rest last night, know she is going to be tired and weak today.... S was a little agitated yesterday when M wasn't home , he does that sometimes, but was too tired myself, and I tried to set on my money maker as much as I could catch a break yesterday...this is bringing back memeories of being a live in... words can not express how much I respect those that do this 24/7..... I've done that, said I would never do it again... so extra angels and prayers to all of you never getting a break..... God please have Mercy on all caregivers.... we are so tired, so numb, so stressed, and thank You for letting us find each other... I could NOT do this without ya'lll......... so much love and respect for each and every one of you..... hugs across the miles in all directions......
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brandywine-Please tell your sis that there are no "shoulds." There is I "want", "can", "might" and "won't," but should? - it should not be in the vocabulary! LOL If I can ask, how often is she planning on visiting? if she's going, maybe you can send her a letter to read to Mom, with updates about you so she has topics to talk about. (not badly, but sometimes it's hard for people to know what to say during a visit). That might be a bit of a compromise. Hugs.
cadarn-Hugs to you for being in this situation. If her wishes are no feeding tube, you can rest easy knowing that is what she wants. Your support for her choice is worth more than letting them put one in and keeping her alive a bit longer. Focus on what can be done to keep her comfortable instead.
Ohio-Love the sun and glasses!
hadassah - good for you! You got done what needed to be done. And it's not lying - it's creative fact management :)
lildeb-do you feel the storm building? I worry, too, that any good times will be shortly followed by Mom's version of thunder and lightening. Because we are all still trying to all live together and get used to each other, I'm not sure if the next storm will be over something small, or if the really big storm will come next time the cancer pops up. Either way, I know it's coming.
Been a rough week here for Hubby. My normally sane, good guy finally hit a wall of stress. Some of it is work - he has to go out of state again tomorrow for a few days, and that's really not normal for his job. Alot of it is the parents. I swear, if we hear one more complaint about the TV's, I'm goign to toss them all out and buy radios! We can only have 4 TV's on at a time, or 3 and a recording. I don't even have cable on mine - just an antenae for local stations so I can watch one of my shows. The rest I have to tape and watch when I can "borrow" hubby's TV. You'd think they were missing War of the Worlds if one of them can't watch because both hubby and son are watching and something's taping. And for whatever reason, some channels black out when Mom is watching. We've even tried switching boxes. So she can watch 500 other stations, but whines because C-Span 3 won't work! The phone is another issue. We were goign to go to cell phones only before they showed up. No one we want to talk to calls us on the land line anyway. Hubby's out in the yard, digging a trench, covered in mud, and Dad brings him the phone because the nice voice asked for him! It was the Cancer society, askign for a donation. The last time I talked to them, I told them I was already supoorting 2 cancer patients, and didn't have any more money. I thought they'd go away. Next time I'm going to ask them to send me some money, since I'm knee-deep in this!
Venting....and worried about hubby, too. Yup, never a dull moment around here.
Ladee-can S shake his money maker for all of us? Or better yet, a nap or peace and quiet maker? :)
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