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Update . Here it is , the hospital called my nephew wanting to discharge my sister and expected him to be her 24/7 caregiver . The guy works to provide a home for himself and her. I told him the other day if they try that to tell them it’s an unsafe discharge. He said the PA told him she’s not having delirium today and my nephew told him about the phone call today that I received and he said he could tell that she got caught in a lie , and then acknowledge some noted but that she thought he was going to be her 24/7 caregiver at home. Uggh .
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Way,

I will share with you about how my mom was dealing with her journey of declining health.

As you know, she had Parkinson’s disease. Depression occurs in Parkinson’s disease. When her doctor or nurse would question her on this topic, she would deny it. I couldn’t force her to be honest.

It’s hard to deal with this situation. We can sometimes feel like we are walking on a tightrope waiting to fall off.

She was afraid of mentioning her depression or anxiety to the staff because she had a fear of meds.

Fear is natural for us to have but it is also crippling. It will prevent finding solutions for our problems.

I tried being patient. She didn’t always listen to my point of view. Fortunately, my brother was able to get through to her and she went on Ativan and Seroquel.

The difference in her behavior after she was on meds was amazing! She had been trying to escape out of the front door in the middle of the night.

Did I get upset because mom listened to my brother’s point of view and not mine? Absolutely not! I didn’t care who got through to her. I was just glad that she finally heard someone.

Maybe one day someone will be able to get through to your sister. It may not be you. It may not be her son either. I hope she will hear something from someone else who will cause her to understand that she needs to be honest with herself.

A person has to learn to calm their fears and be honest with themselves before they are capable of being honest with others in order to receive help.

Going through these difficult situations is a process and usually takes time. Nothing gets resolved overnight. The waiting part is always unnerving for everyone. I feel for your nephew. I’m sure that he’s having a rough time.

He is fortunate to have an aunt that he can share his feelings with. I’m glad that you are there for him. I’m sure it helps him not to feel so alone during this difficult time in his life.
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Sp196902,

I agree. Here is the problem , Sis has no money , just gets her SS check . AL here is all private pay , Medicaid won’t pay .

My aunt died over 3 years ago , had no children of her own . She had two sisters , one of which was our mother who died before my aunt. My aunts trust was to be split between her two sisters . But since my mother died , the trust says that my mothers share is to be split between her children . So still waiting for that . Nephew wants to use sis’s share for AL .
My obnoxious PIA brother is trustee and claims it’s all tied up with an IRS issue from income tax filing with errors done previous to my aunt dying .
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WaytoMisery it sounds like newphew needs to strongly consider moving his mom to a facility where she can get the care she needs.
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Need,
I think if sis was more honest about ALL her symptoms she would get to the bottom of this . Unfortunately I think it’s too late to hope for honesty . She did tell me a year ago she thought she was getting dementia but told me not to tell anyone . I of course told her son ( POA) . I fear she has gotten worse lately where she most of the time does not recognize she is having problems . According to my nephew , she showtimes well with doctors , no cognitive tests have been done . I suspect at this point she may refuse to do them anyway . IMO Nephew is going to have to start giving a heads up before doctor appts of what he sees at home . But he is POA. I’m not driving the boat . He’s been treading lightly with sis for quite some time , he says so he can bear to live with her . However I do believe he is getting to the end of his rope . He says she’s been getting more difficult at home .
He is going to push to put her in rehab for now , he needs a break .
oh , my previous post I wrote doctors are aware of cognitive problems , that was incorrect , I meant to write ARE NOT . I type too fast .
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Way,

Hoping they find out what is going on with your sister soon. Not having any answers is the worst!
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sp196902, I do think I need to make a list. Otherwise, it's going to be overwhelming. There are currently no beds in the entire state, so am discouraged about getting him placed. I hate to go the APS route, but at some point I may have to. Thank you!

BarbBrooklyn, yes, the ex has the money for someone to haul his stuff away. He's still thinking he can take some of it with him! He sometimes loses the thread that he's going to a place where you have very few personal items. I know that I'm not paying for it!

waytomisery, thank you! I appreciate it and (((Hugs))) to you, too!

Sendhelp, I love your story about the engraved card! I might just do that myself once I land somewhere. I guess it's times like these when you know who really cares, and I've gotten a lot of caring on this forum. I plan to do a lot of quiet time, meditation and prayer over the next couple of weeks and will hope for the best. If there is a door somewhere, I'm paying that it will open. Thank you!
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A bittersweet milestone ThisIsNotMe.

Some things to be encouraged about, and other things to endure and heal.

Your friends/family may not know what to say, as divorce is a very personal thing. Thank you for sharing with friends here on the forum.

Over two decades ago, I sent out a tiny announcement (engraved), as an address change when finalized and moved in. It read like this:
"(My new name), (dog's name), (second dog's name)
are happily ensconced in our new home
(address)".

Just getting that done helped in the process to make my new life real.
Very few replied, except for that good friend (yay!) and sister (yay)
who were there to walk me through every step of the way.

Ten years later, I remarried my husband-a very kind and unique man!

Give yourself some time to adjust to the new you, and to become who/what you want to be now that chapter is ending and winding down for you.

💯
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Bounce ,

Update . Sis called me . She’s not right in the head again today . I suspect it’s because they cut her Seroquel dose in half last night at her request because she complained about feeling twitchy with it . She’s been having arm/ hand tremors anyway and gait problems , speech problems , as well as cognitive problems ( which doctors are aware of ) . Parkinsons was very recently ruled out . I do believe they need to consider that this may be Lewy Body .
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ThisIsNotMe

Good luck moving forward . (((Hugs)))
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ThisIsNotMe; congratulations on a big first step.

Does ex DH have the funds to pay Junkluggers or 1 800 Junk to haul away?
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Congratulations ThisisNotMe on taking the first step indeed to your new and better life. It is exciting, scary and daunting all at the same time.

I love to make a list with goals that I can check off as I accomplish so that I feel like I am moving forward and not as overwhelmed by all the tasks/things that need to get done.

I hope the next couple of weeks you can get your now ex husband out of the house and into a facility.
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I just walked out of court appearance to finalize my divorce from the man I never should have married and to whom I've been caregiver for 18 months. I should feel better than I do - I'm free. At least legally. But nothing else has changed for me. Still waiting for placement for him. Still have to find a way to clear a house full of his junk so the landlady won't be stuck with it and I can get a good reference from her to find a new place for myself. Still have to figure out what the hell I'm going to do or where I'm going to go! The divorce was a step in a long line of steps, and I'm burned out waiting for this to finally end. At this point, I feel like driving my car into the river. On the bright side, my therapist texted me "good luck" and the judge told me that hopefully I can put start a new page, and have a new beginning, which he didn't say to any of the other plaintiffs. But nothing from anyone else in my life. Which is typical.
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Bounce,

They have sis on Seroquel . I saw her on Wednesday and Thursday . I saw significant improvement yesterday compared to Wednesday . And overall much better than the craziness that was described about Monday and Tuesday which I did not see first hand because I worked, but those two days she was calling me leaving crazy messages . It’s over an hour drive each way the hospital. Not going today . I’ll go tomorrow .
I’m glad she is more herself and not trying to escape. I hope she did not screw up her back surgery fighting them .
She said they have her walk alittle each day but no other PT yet .

Thanks for asking .
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Need: You're welcome. Could be arthritis.
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Drosie,

My caregiver days are over but I remember feeling exactly like you do now. Do you have any outside help?

I cared for my mom for many years. She had Parkinson’s disease and later developed dementia.

I’m so sorry that you are going through this.

Sending many hugs your way.
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Thanks, Llama. It’s better but still hurts.
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I'm just plain burnt out. I want my life back. I'm tired of the looks of him at times. I know it's the disease, but it doesn't make it any easier. I want to be happy again. I want to do what I want to do, not what I HAVE to do.
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Need: Prayers for your thumb to feel better.
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HappyRobin,

Thanks.
I’m merely speculating but she lives with my nephew who said he was seeing some cognitive symptoms and gait issues that got worse during a bout of COVID last Fall , and seemed to not get better . Then she ended up in the hospital last spring with pneumonia and metabolic encephalopathy and almost died .
She has a myriad of other conditions prior to this including , Sjrogren’s , which caused COPD ( never smoked ) . They just ruled out Parkinsons disease prior to this back surgery . She has been having gait problems and falls which lead to bad compression fractures in her spine leading to this surgery she had to prevent paralysis .

It is difficult to know how much of her issues is oxygen deprivation that she had during pneumonia , the seizure from the encephalopathy last spring and how much or if it could be dementia. But she has not gotten back to baseline since then . They have not done cognitive testing . Haven’t gone that route yet . Nephew says she showtimes well with the doctors and we are assuming she would refuse cognitive testing , and certainly during delirium is not the time to do cognitive tests .

Sadly she has no money just SS check . She had two really bad exes . My poor nephew takes it one day at a time and is assuming one day he will have to ER dump her to get her placed. My nephew is single , has to work and sis is home alone . Nephew has been having a neighbor check on her during the day , sis thinks the neighbor only comes to walk the dog .
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Way, oof, Lewy is tough. Mom was misdiagnosed with Lewy, but it turned out she had bad medication reactions. She definitely has some form of atypical dementia, but not LBD. Sending you all my best.
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HappyRobin,

thanks for the tips .
I do believe she may have undiagnosed dementia possibly Lewy Body as well.

I’m not driving the boat . Her son is .
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Need, why is it that the stupid bottles with the pain meds give us such a pain to get into?!! My thumbs are in solidarity with your thumbs.
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Way,
when you go see your sister, make sure the hospital is following delirium protocol. A surprising number don’t.

Lights need to be on and bright near sunrise, on throughout the day, then off to near darkness at night. If they can medically, request they not wake her during the night for vitals or blood draws and turn off the beeps in the room for the monitoring gear. Ideally curtains open at dawn as well and drawn at dusk.

We also requested coffee with the lid off first thing in the morning even if she was not awake because the smell sense is powerful.

use sound as well: noisy during the day, TV or radio on, then in the evening start winding it down and TV off and gentle music until quiet by about 10.

if you can get her there, sit in the full sun with her for at least 20 to 30 min before noon every day. exercise if she’s in rehab is also good.

Reorient her constantly. Make sure her board has the correct day and date. Add the weather.

My mom had hospital or post-surgical delirium every time. She once tried to escape a hospital because she thought she was late to an MRI. Nurse said they’d never had someone trying to escape to go TO the place they were!

Hospital delirium often can be managed by environmental and social cues and does not always need or respond well to medication. Glad she has folks to be with her!
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Way,

This just started so, I will wait and see how I feel later.

We tend to take things for granted until we are in pain. Could be a lot worse. I shouldn’t be complaining about it.

I am going to finish listening to the podcast that I fell asleep on last night when I get in the tub.

I have a very comfy tub with whirlpool jets so I think it will relax me even if it doesn’t alleviate any pain.
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Need,

Oh geez. The use of the thumb is so important to be able to use your hand in general . Uggh .
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I just tried to tear a paper towel off of the roll and couldn’t manage to do it. Pain shot up my hand.

Oh well…I am going to try soaking it in a hot bath to see if that relaxes me.

The Advil liquid gels aren’t working. They work for my headaches. Was hoping that they would help ease the discomfort.

I had a really tough time opening up the Advil bottle. I couldn’t pull open a ziplock bag either to get an English muffin out for breakfast. Will eat cereal.
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Way,

It certainly does sound like she needs Ativan to soothe her anxiety. Ativan definitely helped my mom’s anxiety.
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Need,

My nephew told me what the nurse said.
Luckily she can’t get very far with her walker and moving really slow like she does . The nurse also said she was carrying her overnight bag . It’s a pretty big cloth duffel bag . That must have been a sight , the walker , the bag and in a hospital gown . She even hooked her foley bag onto the walker , but she had ripped out her IV . She told the nurse she was going home . She was so resistive , they called security and my nephew. Then they brought in a one on one nurses aide for her . This is really bad . I hope they can give her Ativan or something .
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Way,

Oh wow, that’s disturbing that she tried to escape.

True, you don’t know what her reaction will be.

I understand that you want to see your sister though. I would feel the same way as you.
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