The Caregiver & Dysfunctional Families: How are you doing?

Hey everyone, my has had an awaking this afternoon. Very lucid aware. My niece brought in her daughter from Florida. She played beagle music while my great niece danced. My sister was laughing at her granddaughter enjoying the Beatles music. It’s a victory as we all know mornings snd evenings are the hardest times with delirium and dementia.

ChoppedLiver: "get the pain addressed"

I think about this aspect of elder care, as part of considering more overt behavioral issues in gerontology folks. I think physical discomfort (and confusion, of course, and other things... but, yes, PAIN) is a big piece of elders' noncompliance with care in general.

How do we better assess and treat pain in the elderly when they can't speak directly to their discomfort? I don't know, but I want to learn more about any research supporting improved assessments here. I think back to my time as a caregiver, both to GM, who couldn't verbalize her pain, to my dad, who could speak to his but most often it just came out as him being a big jerk and blaming everything except the pain/discomfort. lol Does that make sense? Post-surgery was always the time when he was crankiest and most likely to behave badly.

Looking back, I missed the signs in my GM, because I didn't know what I was looking for. Good on ya for picking up on it, and being an advocate for your mom.

Sharyn, I'm so sorry your sis is still doing so poorly. You already know this forum is so helpful in suggesting things to look into, so after you go there and get a better idea of what's happening, maybe start a Q&A thread about your sister's situation on AC...? I hope things turn for the better soon. (((((hugs)))))

Hi everyone, my sis is not much better. My niece wants me to come out next week. I told her of course. If I can provide emotional support and help stimulate my sisters mind,I will do it in a heart beat.

we are waiting for results from MRI and ct scan that a new hospitalist ordered.
this dr feels there is an underlying issue causing the delirium. This will be done on her legs. Keep you posted

I ignore the toxic part of the situation I'm in. I do what I need to do and have for over two decades. My peace is my gold and I cultivate it daily.

Oh, Sharyn! I'm so glad your niece realized that and they got Sis to the hospital.

Hi everyone, my sis was transferred back to the hospital. My niece is doing a great job advocating for her mom. My sis is spitting out her oral meds that don’t come in a liquid form. She refuses to eat or drink. Back at the hospital they discover my sis has a severe UTI. We all know a UT with older people means hallucinations, wild talk. I pray this is a big part of my sis’s issue

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