The Caregiver & Dysfunctional Families: How are you doing?

Thank you everyone! I’m trying to get my mind around this even though he was dx about 6 years ago with interstitial fibrosis/pneumonia. A double lung transplant does not have a great 1 year survival rate. I’ll get more info from my sister-in-law after everyone has some time to process this news. I may go see him in October.

sharyn (((((hugs)))) and prayers for your bro and you and the family. I remember a year or so ago you mentioned he had lung problems.I hope he gets a transplant soon.

Sharyn, my thoughts are with you and your family at this time.

Sharyn, so sorry.

Sharon, Prayers. I'm so sorry that your brother and your family are facing this health crisis.

Prayers your way Sharyn.. This is scarey

My brother has 18 months to live without a lung transplant. He will placed on the transplant list in about 6 weeks or less. I can’t believe this is happening to him. Prayers and positive thoughts appreciated.

Duck-((HUGS))

Hi all, I missed you and I hope you are all well. I just looked at a few post on blood drawing. When I worked in ER I became very good practicing or rather taking every opportunity to start a line or draw blood from the AOB patients. The expertise came from voluntary patients at the methadone clinic, IV drug users who didnt mind fishing for a vein. They would tell me to go to feet and hands sometimesto find good spots. Just sharing. The most difficult for me and it was just a few times were young children for some reason maybe the viens being more supple.
I am not really caught up.
Golden Hooray for you to do you and know your mother is okay. As ususal that was golden advice to Gershun.
Gershun I am rooting for you. I am again just coming out of a funk. Some days my only thing to look forward to is what I am going to cook. And now that is all changed because my mother is worse and well, I just cant get used to the limitations of using the convection oven, then using a hotplate to boil stuff to make potatos or rice. One thing at a time or the skillet to make bacon andhomefries and eggs, unplug to use convection for cheese toast.

I didnt even realize it was Easter, thats how out of touch or maybe how solidary my life is until someone mentioned bringing psalms for my mother. Auntie J. So I did get a little joy out of buying my easter plants Which I do every year since I can remember. So HomD#$$#@ ot was out of the question this year because hardly any of the plants I bought blossomed and I didnt keep receipt. The evergreen bush I bought for a front yard pot started dying before the summer ended.

I picked out a white and deep pink azaelia and some purple hyacinths. Excuse spelling please. I would like to get a perennial garden where every thing pops up during each season. I planted some daffodils last fall I am looking to see what they do so that whole process helped me out of the funk.

I am reading this book the Celestine Prohecy. Its cool. Especially about how we embrace energy, love. Looking at a plant does wonders for me. I read long time ago how we should embrace trees also. They hold a lot of history a lot of life.

I have a colonoscopy and endoscopy this week. I will be glad to get it done and over. My therapist thing is working nice so far. Its helped already. Learning about my anger issues. I dont speak to my sister but he says I should voice that I am very angry which amazingly I have never said. I think that deep down I have rooted that I have no rights and real vultures can tapp in on that fast. Not a total push over just takes me a while to put things together which is not a pretty sometimes.

The cable box is back in the kitchen with plug and tv is on. I went to get a converter box that didnt work. Bought another one didnt work , took upstairs to my tv and it worked realized it had maybe be set to cable antenna down stairs. So now I have a new antenna and I will be returning one of the boxes. It made me feel a little better because it saddens me where my family is now. the hostility, the ugly that is extended due to misinterpretation. the ignorance. Then I look at my twisted and how she deals with my mother. how she talks to her. Seems there iw no patience and it like she gives orders to a dog. she comes home and goes straight upstairs sometimes she brings her tea.
meanwhile she walks past and over soaked pads of pee or do. Feels she does not have to go in the kitchen or bath where a lot of damage is done. Do not mop, weep , clean or even put sheet or change sheets. Then I get flash backs of her and my mother's actions and I feel they deserve each other. I talk to my mother like she is my baby there are moments though where I cant take the constant babbling, rummaging, and constant interferance when I am cooking or cleaning. then lately she is at the door when I leave and its a mild struggle. Then she is getting worse about this food stuff. I seasoned and set up a pan of turkey wings and chicken wings, next morning the wings were gone. A waste, I have to make more adjustments in my mode of operation but it is so tiresome and frustrationing. I mean I can't put anything down when she is around.
And when she does not eat, it scares me.because I dont see anyone else feeding her daily so when I work if she doesnt eat much of the breakfast I bring in or much of the dinner when I leave it means she not eating.
So even though I feel guilty some times I just take a needed break from her. I realize that she is a drain in every aspect and I am trying to build her up but not getting built up and when I reach a certain point I have to take a break. so I leave that dang pee and do in the hall and walk over it like everyone else. Even if I know in two days I will be cleaning and moping.
Then sunday on way to work my mom is in the living room not eating and my sister is upstairs iwth Auntij watching a moviwe. then she has her own fridge but empty a tray of ice and just leaves it. I had plant for AJ told her to take bag in hall when she leaves and wwent to work. Shedidnt understand me. left bag but thank goodness the icetray was back in fridge because I love my ice water and constantly turn trays and bag ice its very insulting to me when someone leaves an empty tray.

Hey thanks for letting me vent. I Hope all is well and I get a chance to catch up more soon.
Rays of love and light to all.

Mom is happily watching Call the Midwife on Netflix right now. She could watch it endlessly, I think. It's pretty good, but I've seen all the episodes a couple of times now....

Gershun, I don't know the password for mom's pay-per-view channels, and she has forgotten it! Fortunately she has a lot of "on demand" movie channels, and I have a Netflix account, so I'll keep my eye out for that one.

Tonight, I am going to watch The good doctor" on t.v.
Maybe I can figure out what to do for my own savant in the house.

Speaking of good movies. I like the quirky ones that don't make the headlines usually. Hubs and I rented a good one the day before he left for work again. It was called "Brad's Status" Ben Stiller was the main character in it. He usually does comedic roles but he is a great actor in serious ones too. This was a comedy/drama I guess you would call it. Not a lot of women in it but it was good. I'd highly recommend it. You can rent it on pay per view.

Oh my gosh, Gershun! Was your mom scared? And yup, my bro's time with mom - or me - has often been about him. What he likes is to watch movies, so that's what he's planned whenever he's seen us. Which would be ok if he didn't always choose the movies! They're usually so....male, lol.


Today on the way to dialysis, I said to mom, "So I guess (Bro's name) is gonna make us watch the new Star Wars movies."

"Oh," she said. Then after a pause, "Sh*t."

Lol! I guess her mind isn't all the way gone yet!

I said, "It might not be too bad - at least the main character is a girl this time." And that got her a little bit interested, at least!


Have you guys ever heard about the "Bechdel Test"? It's from a comic written and drawn by Alison Bechdel, but it's become kind of popularized.  To pass the Bechdel Test, a movie has to 1) have at least 2 women in it, 2) who talk to each other, 3) about something besides a man.

Sepsis is what causes my Mom's ultimate decline too. She recovered but was really never the same after that.

My brother's visits with my Mom were always mostly about him. The comment about brother bringing Star Wars tapes kind of reminded me about one time Hubs and I went to visit Mom in rehab. My brother happened to be there at the same time. He decided it would be great fun pushing my Mom in her wheelchair around the facility. Pushing her forward really fast like kids do with shopping carts while Hubs and I do what? Run behind............?!!!!

This one I could not pass on I learned the word dysfunctional family at 24 when my first visit to the physiatrist. After talking for a few minutes he asked me what I wanted from my life. I Wanted to be normal with a happy normal life. Then he asked what I thought normal was? I remember thinking he's in worse shape then me. I had problems but he seemed lost an he was the expert.well 30 years later I get it. There is no such thing as perfect or normal really. An we make our own normal no one is exempt from life an it's upheavals. I know that I've raised a 4th generation of a dysfunctional family but the difference is I educated them on dysfunctional as well as thaught them that crazy is OK too. Laugh when ever possible be kind to yourself and others. Always do the best you can be responsible for your actions. honest to yourself an others. That way no matter what comes your way you'll be ready an when it passes because all things do. You will know you gave it your all. That goes for caregiving as well if not even more. Try to always remember they are first our love ones. Some of their behavior comes from the guilt of putting us in this place they think is so horrible, witch really isn't if we just had the right support.

Becky — such a sweet tribute to Pam. 💛

Sat down with 69 year old friend and her mother this morning. I've decided to take the bull by the horns - if they want me to help, it is on my terms. 91 year old mother is now consolidating her assets - she has some stock in 2 companies and investment portfolios that are small and in 5 places. I suggested that at this time, it was worth cashing out the stocks while market is high; put the cash against the balance on home equity loan; and pay off outstanding credit card debt. The 91 year old pays for 98% of the household. If she goes first, 69 year old friend is *hosed*. They have so entwined their finances that I'm not sure the 91 year old would qualify for Medicaid...Today we are checking to see about closing out the investment accounts that she can't track and is not willing to let me help administer. Her 69 daughter cannot remember her bank password when sitting next to me (but supposedly is checking every day). I copied and printed out Do Not Resuscitate forms, Durable Power of Attorney forms, and Sample Wills that are legal in our state. I told them both my assistance requires these be filled out as well as HIPAA so that someone can talk on their behalf if one of them goes down. The 91 year old can't hear or see well (macular) and the 69 year old is definitely showing signs of metabolic dementia after poorly controlled diabetes and high blood pressure for 30 years. However, it was great to talk with husband about what I was doing. If you are serious about boundaries, this is what it looks like. If you aren't serious, keep on the way you are and I'll watch you and your brother flail around like Flipper. Have fun!
Hope that all of you out there have a better week. Not bad here, just boundaries, boundaries, boundaries!!! Hubs is having lunch with bro this week to discuss. HA.

Happy Everything - didn't make it into the forum yesterday, as I had a completely lazy day.

Trying to eat my disappointment in bro. Convinced him (sweetly) to give mom a call himself Saturday evening, so he did. Swears he is coming on Friday. Apparently he's bringing all the new Star Wars movies to watch.....I can't imagine mom even understanding them, but I don't think he realizes that yet. (Plus I'm sure she'd much rather watch Some Like it Hot for the 187th time!)  It actually snowed on the highway yesterday, so I hope it's clear by the weekend. He hasn't driven on snow in decades.

One of my girlfriends was here from out of town on the weekend, so she and BFF came over Saturday afternoon, and we destroyed one of the pans of brownies. Me, mom and the home support ladies have just about demolished the other (they're only 8x8 pans, lol).

My friend is caring for her schizophrenic adult son, BFF has her mom living with her.....we all understand one another well enough not to break a socializing date, lol. Mom was asleep, so I closed her door, and we had a nice venting session in whispers.

Mom is off to dialysis shortly....no holidays for kidney patients. Hope you are all having a lovely long weekend!

Happy Easter! Happy Passover!
I brought dinner to my folks last night and we celebrated the holiday then. Mom was on her best behavior so it was a nice visit. Sis and her family planned to take them to a restaurant today. I hope it went well.

Dad is so weak now, he can only walk a few steps without wanting to sit down. Last night his legs were shaking when he stood up from the table. All he wants to do is sleep. He never used to complain about physical discomfort but now he often says he is not feeling well. It's like he is slowly fading away. To be honest I did not think he would last this long but he is a tough bird.

My husband and I were going over how much things have changed since Dad had sepsis 4 years ago. Before Dad got sick, my folks were completely independent. Dad beat the sepsis but he quickly went downhill and so did Mom. They are now under 24/7 care. Guess I'm feeling a bit blue about it all.....

Happy Easter everyone! I hope everyone has had a good weekend. My weekend has been pretty good although my brother has created a little drama. We had 49 for dinner. Everything went smoothly and the food was good - except the usual strange concoction from a friend who is a terrible cook. Good to be at the lake with the big commercial kitchen and plenty of room. Guys are still over there watching baseball (and probably eating leftovers). Enjoy your time with whoever is around. I really miss Pam. She always sent me a box of the Czech pastries she made every year for Easter.But, I miss her more than the pastries.

It will be fun once I decide on the plan. Now I can make mudpies. 😕 And came out the other side f caregiving, though a bit scathed.

Sharyn when my kids started soccer, about four I guess, like watching swarms of bees running with that ball. Happy memories. Have fun and enjoy it, the bee swarms only last a couple of years.😉

Glad, I’m so happy about your plans for a new home! I know how happy I am with our home. Our old home had a lot of great memories, but I just could not get hubs to repair things. Plus there was there issue that the few repairs we did do over the years, uncovered bigger issues like the bathrooms were tiled right on the sheet rock with no barrier to protect the sheet rock from moisture. Anyway, you will have so much fun picking out your counters, cabinets, planting your gardens.

My mom would ask often about the twisteds. I never let her know how absolutely crazy they were and how completely unpredictable and difficult my life, so of course mom's, had become. When she asked about them and when she would see them I found that a good time for a therapeutic lie. I would tell mom that twisteds were just there to see her yesterday. It was hard to do because it would have been much nicer for me if mom was just as angry and hurt by their behaviors and vindictiveness as I was. But, really, what would have been the point? Who would have benefited from that? No one. So those of you hurt by sibs, just try to let it go, it will be better for everyone.

Dori, sorry to hear your brother did that. So frustrating.

Those who do not provide the care don't understand how important these things become - and what a terrible position it puts the caregiver in to have to deal with the fallout.

Gershun, Your Mom was smart. One foot in front of the other. Good advice for anyone.

Yeah, so this happened. Went in to check on mom. She was sitting up on the side of the bed. Note that it was about the time my bro could be expected to come over, being all checked in to the hotel across the parking lot.

Me: "Whatcha doing?"

Mom: "Contemplating."

Me: "Contemplating what?"

Mom: "Oh, nothing. Getting up."

Me: *breaks the news very gently and "positively" ("He's coming Friday.")*

Mom: "Oh." *decides to go back to sleep till dinner*

She wants to see her son so badly. Who could blame a mother for that. Jeez, I could kick his behind right now.

Doriane, your brother sounds like my brother was with my Mom. My Mom felt the sun and moon shone right out of his butt. But he can be such a jerk. You are right.........people who are in nursing homes and isolated, count on the visits and it's mean to let them down. I remember one time just after my Mom was transitioned to nursing care. I always phoned the day before to let her know I'd be coming. There was this one day when I woke up and wasn't feeling like it but I went anyway. My Mom was sitting there all spruced up. She had actually gotten dressed that day which was very rare for her. She usually was in her gown all the time. When I saw her sitting there looking so pleased with herself, I had to leave the room for a minute to cry cause I had come so close to not coming that day and I can imagine how disappointed she would have been. I still get teary -eyed when I think of that day. It was one day in a sea of days but it stands out for me for some reason.

Golden, my sister dressed our mom according to sis’s taste not what our mom would have picked out for herself. Same with our mom’s hair. I guess I shouldn’t have let it bother me but it did because if our mom was able to stand up for herself, she would not wanted it. Yes I agree, this aid at your mom’s facility is being intrusive...beyond the bounds of her position.

Soccer was fun, mostly at this age it is team building skills, not actual games. Dd is co- coaching with 2 other ladies. I went to help keep an eye on those who lost interest and would run away from the group. Then we came to my house and colored eggs in whipped cream with food coloring added. We did it outside, the boys loved the whipped cream, lol!

Dori, (((hugs)))!! The disappointment is hard to take. I’m sorry your brother isn’t up to visiting.

Dori,

I am so sorry your brother let you down. I know the feeling well. I love my brother Jay, but right I would love to bash him good. Sometimes he an irresponsible idiot and sometimes he doesn't stop to think how his plans and choices impact the lives of those around him.

Now my brother says he isn't well enough to come today so he is coming next Friday and will stay till Sunday. And I know it's less than a week, but I could frickin' KILL him!

I texted him back that she'll be disappointed, so maybe he can call her when she's up (I can text him when), and he's like "I'll call Sunday, but it's only a few days." So I texted back that mom has little to look forward too, and her whole face lights up any time someone mentions him coming to visit, so she'll want to hear his voice after getting so excited....he hasn't texted me back again.

It's not "only a week" when you're mind is confused and like a little kid's. And jeez, I wish I got time to feel unwell and not have to get up anyway and drive her to dialysis....

I know he probably doesn't understand how badly she is doing, or how her mind is. But I just.....URRRRGGGHHH!!!!!

Edit:  plus I made 2 pans of brownies.....

Edit again:  I know I said I wanted to rebuild my relationship with my bro, but I really do hate my family sometimes.....