The Caregiver... How are YOU doing today?

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The Caregiver... How are YOU doing today?

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This seems to be a question that is not asked enough or we think what we are feeling is not as important as what our loved one is going through. This job we have taken on is a tough one and there are days when I think my "stress rope" cannot be pulled any tighter. Then there are other times that make those bad days just a memory. Do you feel like banging your head against a wall one day? And then the next day your loved one is attentive and loving and comprehends whatever you say? There are some who keep those feelings bottled up within themselves; others take the time for outside resources and others who look at sites such as this for some understanding. I do better when I have someone else to bounce my feelings off of. Let's face it....we aren't superhuman and besides ourselves and perhaps a family to take care of we now have taken on the responsibility of another human who is incapable of taking care of themselves. Do you breeze through the care giving without a problem? If so, I would like to know how you do it, maybe you can offer some new ideas; do you have feelings of frustration and need to talk about those? Come and talk and know that you can speak freely and without judgement and without finger pointing.

I am caring for my mother-in-law and have been for about 1 1/2 years. She has moderate dementia and incontinence. Other than that she is very healthy. Sometimes that short amount of time feels like 10 years and I wonder how long I will be able to do this job. I get so very tired of hearing the same thing day in and day out, but I have to remind myself that to her, each time she sees me, she is offering new information. At times I have no problems communicating with her, but it seems like more and more she cannot retain a thought longer than 5 minutes. We have had to make signs for her so she will know what she can and cannot do. So far it's working, but for how long? Maybe I will have to end up making her a "Book of Do Nots". She is on memory drugs, which don't seem to make a difference. So why do I continue to dole them out to her? I guess I'm afraid of what might happen or how she might act without them. I might have to rent a boat or buy a helmet! Sometimes I see something in her that leads me to believe that she could get aggressive and what would be my reaction to that? At the end of each and every day, after she is tucked into bed, I breathe such a sigh of relief. The "inner beast" is quiet at last, or at least for a few hours.

Pull up a chair and visit........I would like to know how you are coping everyday..be it good or with handfuls of stress.

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V Veronica91 Oct 2016 · Answer 1 · 2016-10-18T12:46:40.000-0400

Hubby had his cardiac cath this morning and he has just called to tell me he OK although they did put one stent in but no more talk of heart surgery thank GOD. Everything is good and he should be home later this afternoon once the Dr gives his blessing. Unfortunately i could not go with him because I still can't that far and the time sitting in the hospital would be too much for me.

V Veronica91 Oct 2016 · Answer 2 · 2016-10-17T19:23:48.000-0400

Book someone on U tube has probably posted a video on how to fix a leaking toilet. They seem to have covered everything else. Go on the site and type in 'leaking toilet' and see what you come up with.

P pamzimmrrt Oct 2016 · Answer 3 · 2016-10-17T19:08:52.000-0400

well I passed inspection at the Dr;s today!! If I behave and no weight for on ankle for 3 more weeks then I should be able to get a walking cast!! And my boss called to see how I was and told me how much they all miss me, and not to worry about my job if things take a bit longer than estimated..WHEW!! now if I can get the Dr;s office to fax all the FMLA and disability paperwork by the end of this week I should be OK,, and not have to use too much of my PTO.

C cwillie Oct 2016 · Answer 4 · 2016-10-16T08:15:47.000-0400

I doubt you need to look any farther than the toilet leak Book, it is amazing how much water a slow leak there can waste. Thankfully it is almost always cured by putting in a new toilet flapper valve, cheap and easy!

S staceyb Oct 2016 · Answer 5 · 2016-10-16T01:47:14.000-0400

BOOKLUVR, thanks for sharing your back story a little more, I had no idea that this caregiving has been going on so long for you, and honey, I am so sorry! I honestly cannot believe that your siblings, especially your brother right next door is so completely useless to you! That Sucks, it really Sucks! I do not understand how he could ever feel right, taking your parents property right out from under you, when the time comes, shameless!

I'm glad you got good news at the Dr's, with your lesion, but still, if they don't all clear up, you be sure to do a follow up!

Your Dad andbhis urinary problems. How often does he have his catheter changed, or is that some that you have been trained to do? I'm sure that you know that those things can get clogged up and pretty junky, after 10-14 days, or at least that was my experience with my own Mom, when she was on Hospice. They changed hers out every 10-14. Yucky!

I honestly don't know how you can continue to do this long term, as you have been doing, its wrong on so many levels, how you been treated, and I hope that there is some Respite or Refuge in your near future! You have my utmost respect Girly Girl! I'm right there with you in that I feel like ive been in the trenches for more than 20 years, in some form or another, but only the last 13 with my FIL in our home. Still, I have my husband and I'm more his backup, than the main caregiver, and when it was my own parents declining health, all 6 of us kids shared equally in their care, and I know that you don't have that same level of support. Please know that I am thinking about you and sending you good vibes for a break in some way shape or form, coming up here soon, Love Stace!

B bookluvr Oct 2016 · Answer 6 · 2016-10-15T22:15:21.000-0400

Hey! That blue dye in the tank? It's working. The toilet water is turning blue. The water itself in the bowl isn't even moving at all but it's not turning blue for nothing. I've decided to put a brown large envelope beneath the shower head and the spout to see if there's a leak because obviously I can't rely on just seeing a leak since I failed that test with the toilet.

B bookluvr Oct 2016 · Answer 7 · 2016-10-15T21:59:23.000-0400

Our water bill tripled. So I went to the water utility company and saw customer service. She said yep, you have a leak. Then she gave me a baggie that has a cheap plastic-like shower head and a blue dye. She pulls out the dye and instructs me to put it in the toilet tank. I will know if the toilet is leaking by the dye. Wow.... Great customer service... I asked her if the company's website has information on how to find leaks. She said no. ... Sigh... So, when I'm done dealing with this, I'm going to send an email to someone there about putting Useful info in their website.... I did find one slow dripping outside faucet But it's so small a leak that would Not generate a loss of water to triple our bill. There's a much bigger leak than that. No leak that I can see from the water heater, washing machine, shower,etc.... May be a pipe leak between the house and the meter. I don't know. That's why I asked my brother to help me find the leak. Nothing.

B bookluvr Oct 2016 · Answer 8 · 2016-10-15T21:49:07.000-0400

Thanks, JessieB. Dad sundowning early this morning. He was struggling on the bed. I looked up and his right hand was clutching the front of his pants' zipper. I immediately thought he was trying to get his hand inside. I asked him what's wrong. He said he needed to pee and can't unzip his pant. He urgently asked me to help him unzip his pants because he needs to pee badly. Hence the squirming on the bed. I felt so bad for him but worried he would pull out the catheter so that he can pee freely. I got up, touched his leg and reassured him that he can go ahead and pee because the pee bag is there.... He didn't understand me. He kept struggling to unzip... Can't do anything for him if he refuses to go to the clinic. Can't get him evaluated without going to the clinic. It is what it is.

We have a water leak. I can't find where it is. Bro of next door... I'm just so tired of constantly worrying about everything. I really don't ask much from him.... I need to find an honest handyman who won't rip us off.....

J JessieBelle Oct 2016 · Answer 9 · 2016-10-15T12:38:06.000-0400

Book, that would p*ss me off so badly. You show kindness to someone, only to be considered their servant. Pfft! Your father doesn't deserve someone as wonderful as you.

B bookluvr Oct 2016 · Answer 10 · 2016-10-15T03:21:58.000-0400

Dad, "J, where's K?"
Me, "Why?"
Dad, "K needs to change my pamper."
Me, "Why?"
Dad, "Because it's her job."
Me, pissed off, "It is NOT my job!!!"
Dad - suddenly jerked and looked toward me. Oops, he didn't know it was me. He thought he was talking to my sister. He quickly said, "Well. You always change my pamper."

I hate changing pampers... even when I was a teenager babysitting my nieces/nephews. I always told my sibs that I don't do pampers. And I didn't. Now, I've been doing adult changing pampers for at least 16 years. It Is Not My Job!!!!

B bookluvr Oct 2016 · Answer 11 · 2016-10-14T09:14:13.000-0400

The community got together snd scheduled this weekend to do a blood drive for a 2 yr old cancer patient. They were hoping to find a bone marrow match. Unfortunately, he passed away today just short of his 3rd birthday. They're going to still do the blood drive to help other cancer patients.

B bookluvr Oct 2016 · Answer 12 · 2016-10-12T06:29:34.000-0400

I had my follow-up appointment. Doc was really surprised that the one treatment worked. She really thought it would grow again. She did see all the new pop-ups dotted in the same area. She wanted to use that nitro thing on the small ones. I said yes. Didn't even hurt at all - not like with the big one. I'm soooo guilty of ...using home remedies this past week. Sorry guys. But she told me that if it grew back, she was going to do a biopsy. I don't want a biopsy. Soooooo..I've been throwing all kinds of home remedies on it... baking soda+water.. Vit C+water.... Vit E rubbed on it...banana peel. I'm positive one of those did halt the big one from growing because I saw it coming out on Friday. During the weekend was when I became aggressive treating it. Big one looks good, healing. I don't see that lump trying to grow out from the middle of the sore.

Before I left the doctor's office, I made sure to ask her specific things. Obviously, she thinks I know what to do - like the first visit.... I asked her that since she treated it with nitro, should I still use bandage tonight when I sleep. No. .... It gets itchy. She told me to take Benadryl. She said that touching it and covering it - will spread it. I must leave it open. Well, I will listen to her on this - since we have the big one healing. But if that small one that looks like it has an air bubble pops open, I'm going to have to cover it - because my bra strap will be rubbing it constantly, or my blouse will - and that will spread the fluid and affect other areas.

P.S.as I was leaving, walking down the hallway, I overheard her telling the nurse that the small ones are not warts. It's lesions. She was going to do a biopsy today but it's not needed. Yay! The insurance will at least cover this visit.

B bookluvr Oct 2016 · Answer 13 · 2016-10-12T06:08:36.000-0400

JessieBelle, I have no problem talking with dad. I just talk about Obama, Hilary and Trump. Most of the times, he has this blank look. But I've learned not to let this fool me. Later on, he would comment about it. He tends to comment more when I'm watching the animal channel. Fave niece told me recently that she was watching a horror movie. The thing is, when dad & I watch the sci-fi channel, I'm the one screaming and he's watching it calmly. I usually end up changing the channel. But niece must have been watching those really scary movies because she told me that Grandpa said, "That's a scary movie. It's scary. It's scary." She finally got the hint and changed the channel.

Patticake, my parents have 8 kids. Of those 8, I chose to stay home and help dad with mom (just diagnosed with dementia) when I was around age 24 (?). I'm now 50 and still caregiving. Mom finally passed away about 3 years ago. OMGosh, her dementia lasted over 20 years! I'm the middle child. I was not aware that my dad was telling everyone - behind my back - that I was a bad daughter. I started getting suspicious when someone approached my brother at the restaurant and asked questions about me. Then my sister-in-law's father had the nerve to tell ME, ME - not his daughter's husband - ME - that I needed to do more in helping my parents. My 7 siblings got married, had children and grands. All I had was work and home...because dad needed to be relieved from caregiving mom in the daytime. I had NO weekends. I put my life on hold and .. people, even my dad's sister - all thought I needed to do more. Then, my dad started telling me in my face that I was a bad daughter. I Hate Those Words!! It still gets to me. It still hurts - the Betrayal. He's now bedridden. And I can't stand him. .... He told me from the beginning when I was in my 20's that this house and land will be going to my brothers in the mainland. If I want land, I will have to marry a guy with land. Period.

J JessieBelle Oct 2016 · Answer 14 · 2016-10-11T23:20:14.000-0400

Patticake, glad to meet another slave. My mother does the same thing -- sits all day doing nothing. I feel like a slave around here. I've been living with her for almost 7 years now.

The part where you were going to buy your mother's house and then her saying she wasn't going to sell it reminds me of what happened to me a few years ago. Now I don't depend on anything. If I could get her to move into AL, I would gladly let the house go to help pay her expenses. Our freedom and happiness is worth so much more than money.

I'm terrible at small talk. I have to admit that talking to my mother is very hard for me. She has certain things she tells again and again from her younger years. She doesn't know much about anything that interests me. Well, really, she never has let me talk, so I don't even try. She knows almost nothing about me. We are worlds apart. I don't spend a whole lot of time with her, because it would be too hard on me. I feel bad leaving her alone so much. There is so much to do, though, and really not much connection between her and me other than living in the same house.

P Patticake2 Oct 2016 · Answer 15 · 2016-10-11T19:50:30.000-0400

John's girl thank you for responding. It was nice to be able to say how I felt without someone telling me I'm a bad daughter. My fear is that ... I can't bring myself even to type it. Wishing myself out of this only translates that I want my mom to pass away and that isn't what I want. I am resenting I guess that I sold my home and moved to another state so I could buy the family home and let mom live with me until she could peacefully pass away. I guess I had a dream that got put down when my mom told me she would not sell me her house until she was unable to take care of herself. At the time she was pretty healthy so I decided I couldn't live up there just waiting for that in the little farm we bought. So I bought a home by my daughter only to have my mom fail and now is in my dining room because she won't be in an upstairs bedroom. My husband and I take care of all her needs and have to make trips to clean and pack up my mom's home which has 53 yrs of stuff in it. Since taking over her finances I see she has been giving large sums of money to my non working brother. He talks on the phone to her as little as 1 minute and the most 8 minutes. He does nothing else. My sister is dead and she got the royal treatment when alive. I have been waiting my turn and now mom isn't mom but this woman who sorta looks like mom and barely speaks to me. I feel like a creep complaining. Thanks for listening.

P pamzimmrrt Oct 2016 · Answer 16 · 2016-10-11T17:41:00.000-0400

Thank you Book! Yep, the casts come in all colors now.. they wrap them around your leg and they get hard,, fiberglass! Sort of like an ace bandage. no more plaster casts here.

B bookluvr Oct 2016 · Answer 17 · 2016-10-11T17:20:00.000-0400

Pam, hot pink cast? I'm trying to vision it. So far, I've only seen the normal white ones. I wonder if they also offer purple as options.

Trying to stay off it completely is going to be difficult. If I never had my heart infection and had a long thin stent inserted from my inner elbow and up towards the shoulder for the antibiotic IV, I wouldn't know how difficult it is with your situation. Mine was trying to not get it wet while showering, figuring out how to bend the arm despite the pain and remaining completely bedrest for 6 weeks. They didn't even want me to do my laundry! (Not that I listened) I only lasted 3 weeks home. My dad drove me crazy - to the point I was hiding in my bedroom much of the time. I didn't last long staying home because the sound of his voice calling my name caused my heart rate to increase fast. I couldn't drive daily to fave sis house because she lives on a bumpy curvy road. Driving was difficult period with an arm that couldn't bend much and ohhhh the pain to bend and move it while driving! I went back to work to get away from dad. Work was not as stressful as staying home - I told the doctor- despite her advice of not going back to work.

Hehe, I don't think your home life is stressful enough for you to want to flee it. But to learn to do things one-legged and/or sitting is something else! I hope you won't need surgery, too. 4 weeks. You can do it! You take care and be careful with that leg. {{{Hugs}}}}

P pamzimmrrt Oct 2016 · Answer 18 · 2016-10-11T09:05:43.000-0400

Oh yes I saw the xrays...LOL Broke the fibula at the top and bottom of my the ankle. But it;s still together so we're hoping it stays that way! Thats why no weight,, nothing to stress it or shift it.

A anonymous281963 Oct 2016 · Answer 19 · 2016-10-10T18:58:43.000-0400

4 weeks, no weight bearing at all! That would be hard. This advice from your orthopedic, right? Interested, do you know which bone/bones you broke?
You saw the x-ray? Tell me, cause mine was broken, then again a year later, opposite side, same left ankle.
How are you feeling? Hot pink, that is at least some fun. Maybe others will notice and help you with some chores?

P pamzimmrrt Oct 2016 · Answer 20 · 2016-10-10T18:27:21.000-0400

Well I have a hot pink cast and a nifty wheelchair(knee scooter onThur thanks to friends!) If it still looks good next Monday I avoid surgury... but no weight on it atall for 4 weeks. That is alot harder than you think,, But I am going to be as good as possible.. don;t want surgury!

B bookluvr Oct 2016 · Answer 21 · 2016-10-09T03:42:56.000-0400

I've been talking to my nieces about their grandpa. His mouth is very terrible with them. Abusive. Nurse-to-be niece said that with her, it's also sexual comments. Fave niece said for her - it's only the verbal abuse, no sexual ones. Other niece-in-law absolutely refuses to now visit us - due to dad's sexual comments.

I remember comments from Ladee about one of her clients. Her client was becoming violent and only showed it to Ladee. But not to her daughter. Even though Ladee warned the daughter about this, the daughter didn't believe her - because her mom was 'normal' when around her. I worry about this and dad. If you all recall, he was abusive to me until recently. I've mentioned here how he has changed a lot! Now, with my 3 nieces telling me how he is towards them, I now wonder if he's pulling the wool over MY eyes. And I fell for it - hook, line and sinker. Fave niece already told me that she's not foolish to go near grandpa. He's threatened violence to her. Now.... I... I'm just tired of it all.

I took leave for this Tuesday to Saturday. I told oldest sis that I'm off on Tuesday. So, she's off on Tuesday, and I will cover for her. She needs a vacation from her daily boring grind of not-doing-much job. But I also don't want her to have another nervous breakdown while living here. She needs time off from dad and jumping to his every demands. {{{eyes rolling}}}

By the way, Veronica, I did think of ear plugs except I have tinnitus. "beeeeeeeeeeeeeeeeeeeeeeeeeeeeeep" nonstop. You know when you go to the clinic and they put you alone in that exam room waiting for the doctor to come in? I hate that because I can hear that "beeeeeeeeeeeeeeeeeep" is really really loud. {chuckling} However, when dad started the sundowning, I Did dig up my earplugs that I bought for my trip last year. It's on the shelf - in case I get desperate enough to try it. =)

B bookluvr Oct 2016 · Answer 22 · 2016-10-09T03:25:11.000-0400

Patti, John's girl - unfortunately,I didn't thin the same when it came to dad. Mom was hard - from the beginning. She was feisty, violent. From the time she was diagnosed with dementia to her death, it took about 23-24 years. So, when dad became bedridden (along now with bedridden mom), I knew what was ahead with dad's situation. hrmph! He was abusive before his senility. {shrug} I had no red-colored lens glasses on what's ahead with His situation. I'm just so glad that you both had it good with your mom. Envious, but glad. =)

As for siblings... yeah, you read about them all over this website. BUT, there are some great non-24 hour siblings here who do help as much as they can. I think they're great to try to help out.

Veronica, yeah... 2 more baby ones popped up late this morning...along the band-aid's line! Your comment just reinforced what I Suspected. I'm really really trying not to panic because my imagination is just flying all over the place. You know what's so terrible? I already Knew I was going to find the new ones even before I saw it. I get this 'tingling' underneath the skin area. Even though I looked at it - nope did not touch it - this morning - I saw nothing. I was not one bit surprised when it finally popped up. Right where the 'tingling' was. I still have a large box of 4x4 non-woven sponges when I stocked up for mom's trache/stomache tube care. Thanks for reminding me that I can use those to cover it tonight when I go to bed.

V Veronica91 Oct 2016 · Answer 23 · 2016-10-08T21:09:10.000-0400

Book you have had good advice about your wart(s) I think you are probably sensitive to the adhesive on the band aids and the baby warts took advantage of the inflamed skin. Next time use a plain gauze pad and keep it on with paper tape.
The cancer rate on your island is probably due to the nuclear tests done in the vicinity years ago. This stuff can take thousands of years to go away. As you may recall some of the islands still can't be inhabited.
Can you try ear plugs so you can sleep during the sundowning. You know he won't be able to fall out of bed everything else can wait till you wake up.

J John's girl Oct 2016 · Answer 24 · 2016-10-08T18:57:35.000-0400

Patticake- felt like I was reading my own words reading yours.... my dad passed quickly and had so many who loved him I had more help than I needed. Mom, slow... first 3 years back and forth staying at her house and running there several times a day, then two years in my house- where I really felt like I lost my friendship with her and became her servant, and now 4 months into her having to be in nursing home that is so close I am called by her all day to fetch things. My brother gets to visit and play games with her and laugh. I feel like no matter where I am, how I distract myself, I feel dread. It's harder and harder to focus at work. I have kids and a spouse and he's a Saint for standing by me and helping so much. He handles her laundry because the stress has taken its toll on my immune system. This site has been the only place I feel not so alone. My parents were about 40 when they had me so my friends aren't going through this yet.

K kellse Oct 2016 · Answer 25 · 2016-10-08T11:16:54.000-0400

Book, try reading something trashy or fluffy, something that doesn't need a lot of concentration. I found reading stuff like a book of bloopers or cartoons works for me

P Patticake2 Oct 2016 · Answer 26 · 2016-10-08T10:03:05.000-0400

I am two years with my mom living with us because of mental and physical decline. I disappoint myself daily with my attitude. I thought I would rise to this as I did with my dad, but I am not. My dad's was different in that it was faster and more severe. This with mom is creepingly slow and I wonder if I can do it. We don't talk much since she has moved into my dining room. Just basics. Mom gets along wonderfully with my husband. I am truly blessed by his care of her. I am the maid and house keeper. Ha, saying that I see why she doesn't talk with me. How many people talk to your service people. Seriously, it is my fault with the talking issue. I'm not a talk about nothing person. I want meaningful conversations and mom won't do that.i thought at this time of life I would get time with my mom and I am mad I am not getting to know her. My sister and brother got her best and I am left with this person who sits in her chair all day and watches the birds. My sister is dead and my brother has nothing to do with her but two minute phone calls to keep his money coming. I don't like this and yet I am bound to take care of my mother and to honor her.

B bookluvr Oct 2016 · Answer 27 · 2016-10-08T06:45:01.000-0400

Thanks Stacy, Send. I really do appreciate it more than you all think.

Sorry, all. Lately I've been having one problem after another. I think it's the constant stress all these years, and it doesn't help with dad now into some minor sundowning - it's finally affecting my immune system. I can't believe how constant this thought has been floating in my head lately, these past few weeks: "I'll take the daily migraine headaches anytime." Having new health issues - one new stuff after another is frustrating me. I can honestly say that I am just so miserable .. as in the tummy area and now the warts. And those warts are sooooo itchy. Wednesday seems too far away.

I tried reading my ebook, reading here, but.. I just can't concentrate.

Oh.. fave niece and I had more ... oh! gotta go! Please don't let this mean I now have diarrhea!!! I really need to work on de-stressing and building up my immune system....

A anonymous281963 Oct 2016 · Answer 28 · 2016-10-07T22:07:33.000-0400

Wow Stacey! You are a real friend to answer for Bookluvr, and it sounds so professional and just right. Now, I don't think it is cancer!

See Book, We've got your back!

Caregivers together, heloing other caregivers-really nice!

Thanks everyone!

S staceyb Oct 2016 · Answer 29 · 2016-10-07T21:54:02.000-0400

BOOKLUVR, 1st off, I doubt very much that its cancer! I worked in Dermatology and it is not at all unusual for a "MOTHER WART" to sprout babies in the near vacinity, if they are bothered, picked at or treated. You have to remember, that Warts are a virus, and if disturbed, can and will spread, but now that it is red and angry at the site of the treated original wart, it is no longer a Cosmetic thing it's a wound, and should be billed to your insurance as such! Make sure you ask the Dr to code it this way at your follow up! She may wish to treat the new "Baby Warts" with the liquid nitrogen once again, but again, they are a virus that will eventually run their course and go away on their own, its up to you, if you can stand the sight of them, and if you won't pick at them. Now, I'm only going by what you/your Dr said, that the original bump was a Wart. After Liquid Nitrogen treatment, its not unusual for the bump to become inflamed and red, but it does sound like you have had a tape reaction, and possibly there has been a spread of the virus. I definitely would get it checked again!

When my daughter was little, she had a wart virus pop up up on her tummy. There was one bigger one, the about 10 more little ones that popped up near it. Then the big one got scratched somehow, became red and angry, then it disappeared, and then all the little ones did too, over the course of about 4 weeks time. It is of course difficult to diagnose over the Internet, and I'm no Dr, but it does sound familiar! Get it rechecked by your Dr! 😀 I hope this helped!

P pamzimmrrt Oct 2016 · Answer 30 · 2016-10-07T18:03:43.000-0400

Good luck with the wart thing.. I had some pre cancers frozen off my thigh last year and got hives from the stuff.. but better than cancer! It should be covered by your insurance if she codes it as pre cancer . I had a wart once and the OTC stuff worked pretty well.. Compound W ? But it;s not fast, took a few weeks.

as for my travel duties,, I am running low on patience some times! I tend to "hoover" and it stresses us all out! Mom is going to Aunts next week for 2 weeks again, and this really helps!

The Caregiver... How are YOU doing today?

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