Fuuuuuuuuuuuuuuck.

I've been wanting to blog for awhile, but I prefer to do it at 3am while I'm laying in my bed surfing before I go to bed. However, the laptop has been out of commission and my attention has been torn in so many directions at once lately that I can barely string together a sentence.

My mom's been in the hospital or a nursing home now since mid-December, with a 2-day break for Christmas. She finally came out of the hospital and was put in a nursing home about a week and a half ago.

While in the hospital she became delusional and ended up having a severe breathing attack and ended up on 100% oxygen ventilation with a BiPAP machine. Those last few days in the hospital had me on edge and truly scared, more than I was when she was in the ICU. In the ICU she was sick but lucid, and I was handling that okay. I expected her to be that sick. I was prepared for it. Seeing her get worse, specifically, seeing the essence of "her" disappear into delirum over that last week in the hospital scared the shit out of me. I watched it build over a period of days until one day she was actively hallucinating, fixed pinpoint pupils, and only semi-lucid. It was scary because she was like my father when he was dying-- there but not all there. I didn't want to watch my mom slip away like that.

The nurses and doctors seemed relatively unconcerned, and I finally insisted that they call in a neurologist. The neurologist was a smarmy old prick of the worst kind, and he didn't seem all that concerned either, citing my mother's mental health history (which never involved hallucinating or delirium). He and one of the nurses were of the consensus that she needed to get up and walk more to get better, which made me furious since she was completely batshit crazy and her oxygen sats were dropping when she walked even though she was on a high amount of oxygen. I knew she was doing her best, and they wanted to blame her for being sick.

The day she had to be put on ventilation, apparently one of the orderlies turned off her oxyegn tank and forgot about it, so she wasn't getting oxygen until she had an attack. That was the day she was supposed to be released, and no one told me about the oxygen tank mishap until my mother did. Seeing her breathing get to a crisis like that for seemingly no reason shook me. Just the day before the delirium seemed to have been passing.

They moved her to a nursing home the next day once they got her off of the ventilator, which I thought was really premature. Once they moved her, we were no longer hampered by visiting hours and rules about kids. For two weeks we'd been rushing to the hospital the second my husband got home and we'd take shifts-- one with my mom, one in the lobby herding the kid while he got stared for being a toddler. Finally we could go in a bit later, not rush, and take the baby which was good for us and for my mom.

The change in her when she went from the hospital to the nursing home was shockingly sudden and unexpected. I imagine it was because her medication was changed once she was discharged from the hospital. The hallucinations stopped, she was lucid, and for the first time in a month she was my mom again, not a sick shell of herself. I met her physical therapist who commented to me that my mom was working hard instead of bitching that she wasn't doing enough. Hearing that really did my heart some good.

Along with all of this, we've had my mom's very elderly dogs who have managed to track in about 3 tons of dirt and eat through a six-panel door and doorframe. Our house is for sale (still), and as the economy tanks, things get more and more grim. I've had to refuse all showings because we're simply not here and the house is in a shambles. We reduced our price by $10K, but to be honest, I'm ready to reduce it as low as we can go to just get out. The cost of gas and the stress of everything isn't worth it to me. I just want out of this house-- I'm sick of scrounging to pay a mortgage that was somehow affordable for the last 5 years and now has us stretched to the limit. I don't know what happened, really, except that taxes, insurance, and energy went up all at the same time.

All of this has been crashing down on me today. Then I spoke to my mom and they are trying to send her home on Saturday. She's on 5 liters of oxygen still 24/7-- I have no idea how the insurance company thinks she's going to make that workable. She's have to change tanks every 1-2 hours, and those things are dangerous and heavy. Her therapist yesterday said she expects that my mom needs at least 4 more weeks of rehab in the nursing home. Now the insurance is pulling the plug on that, wanting to send her a visiting nurse instead. My mom isn't ready to go home and she's said so.

So to cap all this off, I had a stress meltdown and ate about 17 million calories because I'm also stressed out that I didn't make it to the gym today and the whole process of getting in shape has taken 15 months so far, and this home stretch is just awful.

So just, fuck fuck fuck.

Comments

Snoozan, I'm sorry things aren't go so well. I wish I could help.


Hugs and love

Mandee
 
Snoozan ... I'll make a quick. First, sorry that so many stressful things are happening at once. Not that I can really do anything for you, but just wanted to say keep the hope and look forward to things getting better. Yes, sounds like your mom may have a little more (uninsured) time before she is a lot better, but at least she is getting better. And if you think going down a bit more on your house will get you out of it faster, then do it (unless you totally lose your shirt on it). Unless you are ok to lose it. I've always rented so it's not like I've ever had equity in anything, but I am ok by that. And as for the calories? Well, you probably deserve them today. Sometimes you have to take a break from the stress. Doesn't sound like you've given working out for good, but the fact that you are upset that you couldn't go should indicate how much you really want to do it ... and you will. Anyway, not sure if any of this helps, but just thought I'd comment.
 
It really makes my heart sink to read about what they're doing to your mother.

Insurance companies are EVIL!!!! Our health care system is a profiteering monster!!

In the meantime, is there any other outlet you can take, other than the calories?

And to lighten your mood -- check out this thread. It did me good! :tongue: (My post was #13 or 14)
 
babe. :hug: I feel your frustration, anxiety, and am familiar with the mind thoughts that seem to never shut off and you wish for an on/off switch long enough to perhaps relax awhile and get a bit of sleep.
I hate to respond with the usual 'it'll get better' verbage- so perhaps if I direct my opinions to a few key issues?
try to find time for you FIRST, and immediately. you can't think straight or at all rationally when you are as stressed out as you sound.
Tackle each issue one at a time- dont try to do it all at once. you're one of the smartest women I know... prioritize what needs your attention most and just rationally work thru potential solutions
O2 tanks don't have to be huge and heavy, even at that rate of dose. And they make them easily changeable, my grandma was on oxygen and ventilators the last 15 yrs of her life and managed to live in her own apt (an assisted living community) til the last few months or so before she died.
Keep up to speed on the medications and don't let any ass weed with M.D. behind his/her name bully you. You know your mom better than he/she ever will.
Same advice regarding insurance companies. They're out to save themselves a dollar, not save anyone's life. Don't let them do it without a fight.

Only 17 million calories? BFD. You've burned them just writing this blog don't let it bug you.

and let me know if I can help, inane offer I know! but I've a lot of medical and social work experience , and personal history with the same sort of stuff you're dealing with.


 
I am so outraged on your behalf right now I can barely think! How dare they drug her to the point of hallucination & cut off her oxygen in the hospital. :aargh4: Why would you want someone on oxygen in a hallucinogenic state to walk around? :confused: :eek:

I wish I were closer so I could help you out. Though I'm not sure what I could do to help.:redface: It sounds like you may need a patient advocate. Apparently every state has them. I found this info by googling Pennsylvania patient advocate, hope it helps.

njqt466

Further Resources:
Center for Medicare Advocacy
(860) 456-7790 (202) 216-0028 www.MedicareAdvocacy.org

Center for Patient Advocacy
(800) 846-7444 (703) 748-0400 www.patientadvocacy.org

Citizen Advocacy Center
(630) 833-4080 www.citizenadvocacycenter.org

Patient Advocacy Coalition Inc.
(303) 744-7667
www.patientadvocacy.net

Patient Advocate Foundation
(800) 532-5274
www.patientadvocate.org

People's Medical Society
(610) 770-1670
www.peoplesmed.org

Society for Healthcare Consumer Advocacy
(800) 242-2626 (312) 422-3999
 
Nothing I can say, you're having a terrible time, but I hope you find some comfort knowing that you can unload your darkest thoughts and your deepest worries on here without worrying that you're affecting the people in your real life.
 
:hug: Snoozie, I'm here for you. I hated getting out of our dream house only to move to a smaller home. All of that with what is going on with your mother can be very stressful and even drive someone to mental breakdown. I honestly don't know how you do it and keep your wits about you.

I'm with SP, you got people. And not just any people, you got people who care.

You can always find me on Yahoo if you need an ear.
 
Hi Snoozan. I haven't visited this forum for a while but it's good to see that you're still around. I so relate to your situation. About 4 yrs back, my dad was admitted to hospital. He'd been living on his own since mum died of breast cancer back in '95. Dad had Parkinson's disease and was managing less and less well, and eventually he collapsed. Luckily I lived only a few miles away so I was able to look in on him fairly frequently. When he didn't answer his 'phone I raced round and found him lying in a pool of piss on the floor where he'd fallen some 24 hours earlier. He was very weak but calm enough. I got an ambulance and they rushed him into hospital where they started getting fluids into him. He almost immediately started hallucinating. He had had a few hallucinations previously at home. Apparently it's quite common for Parkinson's sufferers to hallucinate small animals or children - isn't that strange? The stress of being on the ward was more than he could cope with. Sometimes when I visited, he told me about how the old guy in the bed across the ward from him was controlling everything. Other times Dad told me about the troupe of little furry animals that had come round the ward to perform on people's beds. But his halicinations became more paranoid and the times when he was normal, or lucid, became fewer. One time I came in and they had just brought him back to the ward. He'd jumped out of bed and gone running all over the hospital trying to evacuate the place because he thought there was going to be a gas explosion. Jeepers! I didn't know whether to laugh or cry. In fact, when I got back to my car I cried. He was losing his mind and I was losing him. They gave him a zimmer frame, probably to slow him down, but the inevitable happened: He fell, and broke his hip. The surgeon and doctors were worried he wouldn't survive the operation, and as he would be extremely unlikely to walk again even if they screwed the top of his femur back on (an awfully painful operation) everyone, including Dad, decided that it would be better to put the leg in traction and let it heal as it was. So he had to face the rest of his life helpless, bedridden and incontinent (Parkinson's does that too!). He spent the next few months in a convalescent ward where he was their most abusive and uncooperative patient. It was a real nightmare for me too. He'd always been so polite and generous all his life and now the poor old guy was really psycho. My wife and I managed to find him a really nice nursing home not 10 miles from our place. It took a few weeks for a room to become available, and they weren't sure they wanted him because of his behaviour, but we got him in.

Within a few weeks he was much improved. He decided that he liked the place. Of course, the nursing home staff were used to dealing with the elderly and infirm. They soon got his drugs under control and he was a lot more lucid and calm. His room had a view of the lawns and trees. He could listen to the radio. My feeling of relief was enormous. He was there for 2 years, during which he came to terms (a little) with his situation. He still had some delusions - like he kept on pestering us to find his new sneakers. I'd have to say "I'm sorry Dad, you don't have any sneakers. You can't walk any more. Remember?" Then he's go quiet and I'd have to try to cheer him up by telling him about all the positive things in our lives. I'd shed tears as I drove home after those conversations. But the Parkinson's disease overtook him and he became weaker over a few months until he passed away - quite peacefully.

My feeling of relief was enormous. I think I'd been going through the grief in stages ever since he started to become dependent upon me. It had been going on for nearly ten years, and it was over. I still miss him, and Mum, but now I can put it in a bit more perspective because I can remember when they were interesting, sophisticated, respected, cool people, and I can nurture that memory and try to get it to displace my memory of the horror I had to endure as my parents struggled in the last few years of their lives.

Snoozan. I just want you to know that I understand your anguish. It's absolutely terrible when hospital staff don't seem to be understanding or even be interested. We had LOT of that. Some of the doctors and nurses were brilliant, but some of them are really out of their depth when faced with a frail and seriously stressed out patient.

Try to take yourself out for regular long walks. It will help you sleep. You need sleep.

Love X
 
Fuck, fuck, fuck. My wife's mom has Alzheimers and having a sick elderly relative is a BITCH. I'm sorry you have to go thru what you're going thru.

<<big brotherly hugs if thats OK>>
Kris
 

Blog entry information

Author
snoozan
Read time
4 min read
Views
358
Comments
10
Last update

More entries in General

More entries from snoozan

Share this entry