The Caregiver & Dysfunctional Families: How are you doing?

Hi everyone, my sis would not wake up at all today. My brother was also like this and ironically the only thing they could use to bring him around was Ritalin. He had to take Ritalin the rest of his life. My brother was at Stanford University. They had never had a situation like my brother which they consulted with drs around the country. The same is going on with my sis.

my niece is keeping me on standby because neither of us know when would be the best time for me to come. If I come out now, being at the hospital for 4 weeks where I’m there all day stimulating my sister and say it’s helps but then I have to leave. Is it best to wait until she is released to come home? We are playing it by ear.

I have decided I refuse to get a hip replacement unless they can numb me from the waist down while using a conscious sedation drug like they use with a colonoscopy. No general.

i

Looking on the BRIGHT side, Sounhappy, there IS this!
I had about the best parents in the entire world. And certainly the best bro.
I gotta say it hurt like Hades to see them go from me.
But my PARTNER???
Now he had the MOM from Hades. And when SHE went he just gave an odd kind of smile and said "Well, no more Sunday morning phone calls!", and went cheerfully on his way. Turned out he had loved Sundays, but the thought of getting through that short weekly call was so onerous it almost ruined his day. Now Sundays were HIS free and clear. And he made great use of them.

Not a lot of compensation for having had a Mom who threatened to commit suicide every day from his pre-teen years, and NEVER DID IT. But, some.................

Way, “I’m not so sure I would recognize what a normal family is.”

Just stay away from my “family”.

I’m not so sure I would recognize what a normal family is.

What a pity I wasn’t born into a normal family.

😉

I agree, sounhappy.
There should be SOME reward for putting up with dysfunctional families,
SO the Oscar for best supporting role for a caregiver in a dysfunctional family goes to.........................
SOUNHAPPY.
(clap clap clap)

Sorry about the best SUPPORTING thing, but we have had to give the Oscar for Best role for caregiver with Dysfunctional Family to Midkid, because she's been here longer, and dealing with it longer. Keep working. There's always next years Oscars. Start on the gown and acceptance speech now.

I’d like an award please, for being a survivor of one of the most dysfunctional families in the world.

🏆🥇🏆🥇🏆🥇🏅🎖️🏅🎖️

Bounce, thank you. My brother had delirium for a long time and he would revert to a delirium state when he became sick or was over tired even two years later. He was told it is the brains way of coping. Y brother had a double lung transplant and unfortunately he passed last year after falling and breaking his hip and his lungs failed.

My sis has times of delirium still. As far as I know she is in rehab now to continue physical therapy. The gangrene she has is what they say is dry gangrene and will not spread While they want to remove the toe, they want her to get stronger. I have no updates today.

ChoppedLiver,

Your poor mom . I just went back to read about the MRI attempt . So sorry .
Very stressful for you as well .

Update on my Mom: I was going through the endless loop in my head about my Mom, for instance, what are we going to do now? So this little voice said "get the pain addressed"

So as luck would have it, I suddenly realized that if she was taking her new pain med, then we should be close to getting it refilled. So I called up MC to find out how many pills she has left. Uh oh....I filled a prescription of 7 and she has 5 left...and they have had the prescription for over 2 weeks. No wonder she is in pain. So I called the Nurse.

Come to find out, the doctor's orders say "1/2 tablet as needed for severe pain". For those of you who have ever dealt with pain, you already know where this is going.

1. My Mom is in constant pain. She is really in pain now that we had to remove the Aleve due to the kidney issue (which is why we wanted the MRI). Yes, my Mom cannot concentrate on anything due to the pain...not even eating.
2. My Mom has moderate to severe dementia. She can't even point to where the pain is...she just knows she is in pain. Sometimes she cannot even form words. Yes, it occasionally gets worse...that is when the pain is sharp, then reduces to a dull pain, after she bends over from the pain.
3. Are you in pain? Yes On a scale from 1 to 10, what is the number of your pain? She never could answer the question due to her dementia. For those of you who know this question, only the answer of 10 will get you the pill. An answer of 12, 20, 100, or 9 will not get you the pill. Is this even a reasonable answer to ask a person with moderate dementia?

Ever since I found this out, the nurse has been willing to give her 1/2 tablet a day.

I'm working on the doctor's orders to change the directions to give 1/2 tablet every day. Its been 2 days. New prescription has the changed orders, however, I need a doctor's order in order to comply with the rules for the change in medication.

I'm starting to see the cooperative Mom returning. I don't know whether we will be able to get her to stay still long enough for the MRI, however, it is good that she is smiling now, rather than wincing and complaining about the pain.

Sharyn, so happy that your sister is doing better!

I’m so excited as my sis is responding to her daughter today. She is watching tv. She has no memory of her podiatrist appointment last Tuesday or the podiatrist telling her she has gangrene. She may eventually remember the dr appointment but will most likely never remember having to have surgery. Praise the Lord prayers are working and my niece is doing a great job advocating for her mom.

Ali, I am so sorry to read of your family member who took his own life. It’s not an easy subject for many to openly discuss. As you know my niece ended her life back in 2018. As a family we discuss it because it still hurts, with others it is hard to talk about and explain. Sending you best wishes and healing prayers.

DDuck, I went back and read your post from September 23. I want to tell you how much you have grown since coming on this thread. I’m so happy for that you have been helped here. This is a great thread. You are a great person dealing with your life, son, toxic sister.

Ali, thank you. It’s hard dealing with this after my brother went thru it for months after his lung transplant.

THEY PUT MY SIS ON A FEEDING TUBE DOWN HER THROAT BECAUSE SOME OF HER DAILY MEDS DONT COME IN LIQUID FORM.

Sorry for the caps, I’m not yelling or angry, lol!

They started physical therapy today since she has been bed ridden for a week now. Yes Ali, it can take a good week for all these meds to leave her system.

on Monday the 30th I’m getting a cortisone injection in my hip. If my niece needs help so she can go to work, I may fly out to Kentucky to be with my sis at the hospital. I believe strongly in talking positively to a person in these states to help bring them out of the delirium.

I was going to mention that, CW, Sharyn. Post-operative delirium can last up to a week. Hopefully, that's all it is and it will diminish soon.

Sharyn, it's really good to read some posts from you, but I'm sorry that it's under these circumstances. Hopefully, your sis will return to normal function in another day or two.

Sharon,

Keeping you and your sister in my thoughts.

My sister is about the same as yesterday. She has a mild pneumonia they are treating. A new Dr is on her care and doing a whole battery of tests including an eeg to rule out seizures.

thank you all for your input and support. Yes it is a shame they want to blame it dementia instead of looking beyond that.

Thanks Bounce for the support. It is very stressful. Every day is a blessing and a challenge. We all know elders are prey to scammers and thieves. They have regularly gotten harassing calls from people pressing them to sell their house, Mom’s car, etc. And have been on verge of calling APS b/c of the targeted scammers. By observation, I have very little doubt that their identities have been stolen and insurance fraud or worse going on. My identity 100% stolen. Reported multiple times. I am appalled that my sister would choose to align herself with people that do this kind of thing for a living. And for what? Money? Greed? You only get 2 parents in this world if you’re lucky. And we’ve been lucky to have good parents, so I really don’t understand my sister. Greed. Sickening.

Well, today my Mom went for an MRI in an attempt to find out what is going on with her kidney. My Mom has moderate dementia. She has severe arthritis in her lower back, therefore, we can't tell if the constant pain she is complaining about is just the arthritis pain, or if the pain is partially coming from kidney malfunction. Why kidney? In early September, they did a CT scan and it detected something in her kidney, however, they did not know what it was. Normally, they would do a contrast xray, however, the dye is too toxic for my Mom's age.

So today....

1) She didn't know what an MRI was, even though she has done them before. No amount of explaining helped.
2) She looked at the MRI-room-safe wheelchair and said she wasn't sitting in that thing as it was too ugly.
3) She looked at one of the people helping with the MRI and said "You are the one who stole my business!"...she's always worked for either a hospital or the state. My father only worked for the county. Neither of them owned a business. We have no idea what she was referring to.
4) She kept on getting off the table, so they couldn't get the MRI.
5) Later, she said she didn't want to go to that doctor again. I told her that it wasn't a doctor. We were there to try to figure out what was causing her pain. She said what pain? I'm not in pain ....then less than 10 seconds later, she starts whimpering because the pain is really, really bad. No memory of saying that she had no pain as "I'm always in pain."

Today, I have no patience. However, I had enough restraint to say "I'm sorry you are in pain and I don't know what is causing it". ...and I hastily made my way out.

Yes....that is why she is in Memory Care unit.

My sis is no longer moaning and calling out. They removed all pain meds as of 1: oomph yesterday. She is more relaxed but still having delirium. I believe she be even better tomorrow.

I hate how so many in healthcare see a confused older patient and immediately conclude dementia. Hospital delirium is a well known thing.

https://www.healthline.com/health/hospital-delirium#symptoms

Codeine is an opiod, but one of the oldest (100+years), and was developed as the least addictive and least ‘high’ producing opiod. I take it frequently for Scoliosis thoracic back pain, and have done for years now. It works for pain and also sends me to sleep. I am not addicted, and if I have no pain I don’t take the tablets. I know it can be abused, but to be honest I can’t see how or why!

CW, my sis is not on any opiates other than morphine. Is codine (so) an opiate and is not as strong so my sis can get back in her normal brain function. Right now they are saying she has a dementia which we know she does not. I will ask my niece tomorrow if they have her on Ativan or other anti anxiety drug that may be contributing this this state of mind she is experiencing.

Nice to have a forum to express and vent. I am of a family of four, the younger sister. I moved back to my parents’ home a year and half ago, to rebuild myself, but also knowing that when the time came, I would be the primary caregiver. Both my parents recently took ill and have both been in and out of hospital. My older sister, who lives in Hoboken, NJ, has been here past month and half, and she does help, particularly with the driving. I manage all their Doctor appointments, medications, housekeeping, helping them with OT, PT, and make sure the bills get paid (with either one of my parents there or walking through the steps). My Dad was recently diagnosed with multiple melanoma, I dialed 911 to send him to hospital thinking it was a stroke. Nope, he had emergency brain surgery to remove a large mass. My mom has has pneumonia, autoimmune liver disease, now affecting her kidneys and vasculitis, diabetes and a whole slew of competing medical issues. It seems when we try one med to fix on thing, it makes something else worse ( diabetes, high blood pressure).

Here’s where it gets sticky. I am the family scapegoat. I haven’t had the clear, straight success path that my older sister has, but at whatever I’ve done I have worked so so hard. I just am really bad at office politics and diplomacy, and I have an overdeveloped sense of justice and very high ethical standards. Honesty is important to me, and given a history of very bad past experiences, I am not inclined to trust people until I have thoroughly vetted them. This discernment I have developed has saved my life, and probably my parents.

Here’s the rub: my sister, though very successful, is a narcissist. As an aunt says “She provokes me, and I retaliate”. I lived with her in Hoboken for a year and half which was a terrible mistake. Beyond our bickering, she has physically attacked me in the past three times. At her narcissistic rage moments when she looked like she might again or scream at me to get out of the car, I have told her point blank I will not hesitate to call the police. It has gotten a lot better, but I think that is because I stand up for myself, and am sure to have witness when possible.
I am more concerned that her primary interest is on my parent’s finances, making sure she has POA when they die, and her motivations. As I said, it has improved greatly, but mainly b/c I said point blank, that if my parents lose competency due to health, I would not hesitate to call Social Sevices to request Case Worker or Guardian Ad Litum to protect their interests.
Add to this that my family has been undergoing severe identity theft, harassment, gang stalking and I am 100% sure insurance fraud as the same rounds of people show up at the same times at the Dr. Offices, Hospital, etc. My Mom’s last hospitality (that followed her to rehab as he has permissions there) prescribed her a new blood pressure med which elevated her creating. The kidney specialist said she lost 50% kidney function in 10 days, and were it not for an outpatient Dr. appt that result in her readmittancecto hospital well… by the Grace of God we caught the kidney decline in order to begin treatment. There are some other questionable decisions and incidents by medical staff, combined with the ongoing harassment/ gang stalking/organized crime effort in my neighborhood (all true, I have proof and plenty of photos), thinking these people tried to push my parents into the grave to steal their money.
As the harassment, etc started for me prior when I lived in NJ, sadly I have no doubt that my sister is connected. Has provided info to these people and aided them, most likely have probably harassed her too. Here’s the challenge. I report everything I can, multiple identity theft reports to FTC, IC3, and attempted about 5 times to report to police but was told they would not investigate it (organized crime =payoffs). Have been living in an altered state of hypervigilance and trying get bedt care for parents and protec

C willie, all test are showing the gangrene is not in the bone or bloodstream. Her bloodwork shows no infection. My sister was a function person before the surgery.

SharynMM - I understand what you are saying about the opiates but it's my understanding that gangrene is excruciatingly painful, I wouldn't encourage any action in that direction unless they have a good alternate plan in place. And I'm sorry your sister is going through this, hopefully the surgery is successful.

Coming back to say - ask about a nerve block.

Trying again. My sister has gangrene in her toe from diabetes. They did a peripheral artery by pass to try to save toe on Friday. My sister is in her own little world calling out for our mom and not a functional person. My brother who had the double lung transplant was given phentinal (sp). He had a sensitivity to it. My sister is now in her own little world calling out for out mom. They have her on morphine which is similar to phentinal. My niece at crying not knowing what to to. I am helping to empower her. I was given permission to talk with my sisters dr….not saying I’m an expert. I suggested they get my sister of the morphine. She was a very independent person 5 days ago. It’s is a problem with pain medication you are giving her.