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2 hospitals, 1 week
Posted: Sunday, September 1, 2019 11:05 PM
Joined: 6/11/2019
Posts: 511

So last Monday we went to get brain MRI. Tonight we've been in the ER for about 5 hours after she's been having severe abdominal pain all day. They are checking blood snd urine too. So far, white count is 28K indicating infection. Now to pinpoint snd treat. Meanwhile bp shot up to 217/98. So here i sit. I'm betting they won't keep her. Hope we at least go home pain-free. What a way to start the month!
Posted: Monday, September 2, 2019 12:05 AM
Joined: 6/11/2019
Posts: 511

II'd have lost that bet. She has diverticulitis and they're admitting her. She has a perforation and may need bowel surgery.
Posted: Monday, September 2, 2019 2:08 AM
Joined: 5/2/2019
Posts: 214

Geeesh..I hope this is the worst for the month...maybe it is smooth sailing from here...I hope so...


Posted: Monday, September 2, 2019 4:40 AM
Joined: 3/6/2017
Posts: 2155

I'm sorry you lost the bet.

I hope things are better going forward.
Posted: Monday, September 2, 2019 8:30 AM
Joined: 3/7/2012
Posts: 2482

Oh dear, I'm so sorry to read this. You LO will certainly feel better once this is under control.

I know you are doing this, but I can't help myself. You are making certain the physicians, nurses, aids, med techs, etc - anyone whom comes into the room know of her condition. The number of times you are ask you name and birth date is overwhelming, I can't imagine how stressful it is to a LO whom can't 'recall' that information.

Keep us posted on the situation.


Posted: Monday, September 2, 2019 10:07 AM
Joined: 6/11/2019
Posts: 511

Thanks, everyone, I appreciate it! I got home at 3 and the hospital just called a bit ago to say the surgeon has seen her and they are going to try to correct first with intravenous antibiotics and hope it heals on its own. Surgery if not.

Not sure how long that hospital stay will be but I pity them since she can't eat or drink. OY!

I'll be going back in a little while. She wanted me to stay with her but I know I'd have gotten ZERO sleep if I had. As it was, I had been up for nearly 24 hours straight.

I am dismayed by hospital staff who don't seem to understand dementia patients. It reminds me of when one my friend's daughters was little. She was big for her age so when she would have a tantrum at 3, people assumed she was more like 5 or 6 and my friend would say, "She's only 3! This happens." I wanted to yell more than once last night, "SHE HAS DEMENTIA, D*MMIT! She's not going to remember ANY OF THAT!!!!!"'

Then they were asking her if it was OK if they gave her pain meds and initially she was saying NO. I had to get involved several times on that one. (I do have the health care POA, thank God. Didn't have anything with me though. No one challenged me. That would have been seriously unwise after the day I'd had and being up forever!!!)

She did, however, get her name and birthdate right every time. She even stunned me by rattling off her Social Security number AND, while she didn't remember the address, didn't try to give her her childhood home (which is what she's been doing) but simply said, "I don't know. We just moved."  

She told me several times last night that she didn't want to be there and that she just wanted to die. Broke my heart. I hate to put her through this. It took a MASSIVE fight to get her to the hospital. She kept insisting we wait until today. Perhaps if we had, she'd have died. Maybe she knew that somehow?

She had been so miserable ALL DAY though. I couldn't let her go on like that. I knew she needed help though I'll admit I didn't think it was as serious as it has turned out to be. Lesson learned.

Unfortunately, my mom is hyper-sensitive to pain and super resistant to pain meds. It takes a lot to knock her out. (I'm just the opposite. Fairly high pain threshold but a single Benadryl snuffs me.)

I know I shouldn't complain when so many of you are dealing with much worse scenarios. It's just been a really wild ride lately and I'm exhausted. Thanks for the kind words!

Posted: Monday, September 2, 2019 10:35 AM
Joined: 5/29/2015
Posts: 41

I too was very surprised with my LO's hospital visit. It seems as if the hospital staff do not understand dementia patients. It's appears like they may have gotten a quick overview on dementia symptoms but not how each patient's symptoms can vary so widely. 

And I agree eaglemom about the number of times they asked my loved one for her information. I had to tell every single person that came in contact with my LO that she has Alzheimer's. And of course, that is the one thing my LO understands! Can there not be some symbol (purple flower, label) on their file or on the room number to indicate to staff that this patient has dementia? And/or a label saying there is a POA in the room, direct questions to him/her?  

Gig Harbor
Posted: Monday, September 2, 2019 10:39 AM
Joined: 3/10/2016
Posts: 627

Can you write up something describing her dementia for the staff to read. You can mention what will set her off and what work arounds you have been successful with. You are right that staff are not familiar with dementia patients. This is because in the total number of patients admitted there are not that many with dementia and each dementia patient is unique as far as what they understand and what they can do. If you can put something on her chart for the staff to read before they go in her room it might help them give her better care.
Posted: Monday, September 2, 2019 11:23 AM
Joined: 6/20/2016
Posts: 2242

It's also okay to, after she has had her antibiotics, tell the surgeon no more and take her back to where she was with hospice and allow her to go.

Just because it CAN be treated doesn't mean it needs to be.  

Posted: Tuesday, September 3, 2019 9:39 AM
Joined: 6/11/2019
Posts: 511

Thanks again for all the kind words.

Mom is not in hospice so that's not an option right now. As for NOT treating this ... no way. It's waaaay too painful an illness. Hoping that the perf will heal on its own. But that may be a challenge in itself as Mom is giving the hospital a super hard time.

Pulled her IV out. Took her clothes off. Was ready to walk the halls in her undies. OY!!!

I was there for 3.5 hours yesterday and it was a serious hot mess. Haven't called yet to check today. Almost afraid to.

Posted: Tuesday, September 3, 2019 10:33 AM
Joined: 10/9/2014
Posts: 1036

I hope your mother is feeling better. It can be very difficult on a PWD to stay in the hospital. That's one of the main reasons we went with Hospice. My LO was terrified in them and constantly called out in pain from every procedure, "I"m scared!" Plus, pulling out IV lines, not laying down in bed,  she didn't understand anything around her.  Leaving her was not an option, due to her progression.  No one else was available and the hospital did not provide that kind of care. I hope they are able to treat her with meds and can get her pain under control.
Rescue mom
Posted: Tuesday, September 3, 2019 12:35 PM
Joined: 10/12/2018
Posts: 1474

I would second Gig Harbors post. Hospitals are generally not equipped or staffed to handle dementia patients. You might consider hiring someone to sit with her, if you can’t be there.  It’s a 50-50 bet, IME, if staff notices or follows any written instructions left by family.
Posted: Tuesday, September 3, 2019 1:12 PM
Joined: 9/16/2018
Posts: 38

We had very similar issues last month. Mom is now under Hospice care. She developed cellulitis last week. Hospice Doctor prescribed oral antibiotic after seeing her at MC....avoided another trip to the ER. It doesn't mean no treatment, but it's treatment that provides comfort and security. Also CNA visits, showers, massage therapy and music therapy. Highly recommend!
Posted: Tuesday, September 3, 2019 1:34 PM
Joined: 2/3/2018
Posts: 715

Yipes, Minute. So sucks you and your Mom are going through this. No advice to offer just sending my empathy.
Posted: Wednesday, September 4, 2019 8:48 AM
Joined: 6/11/2019
Posts: 511

Thanks, everyone, for all the support. It's been tough.

Mom is feeling a little better but wobbly and exhausted. I'm concerned because her white blood count, after initially making a significant drop, ticked back up a little between Monday and yesterday. She still has a sitter with her (nurse from a different floor) but yesterday they moved her from a private room to another room with a roommate so that a single sitter could monitor them both.

She was relatively lucid and I can tell she's not getting a lot of rest. No wonder. The nurses make no attempt to control their volume, they let doors and drawers slam and now she's with a roommate who mutters and moans. Great.

I spent about 90 minutes with her. Most of it she was fighting sleep so I finally left hoping she would rest.

I'm monitoring her bloodwork online (hospital system has a digital chart) and it looks like they're starting to test for other things. I suspect there may be more going on than what they've diagnosed. But I guess we'll just wait and see. 

Posted: Wednesday, September 4, 2019 11:14 AM
Joined: 4/10/2017
Posts: 278

Severe health and/or surgery can make dementia symptoms much worse.  Your mom can still sign in the hospital EVEN THOUGH you have POA.  So, checkout everything.  And you are correct hospitals don't know how to treat patients with dementia...crazy huh?
Posted: Thursday, September 5, 2019 9:28 AM
Joined: 6/11/2019
Posts: 511

UPDATE: So I called the hospital yesterday around noon and talked to both the nurse and my mom. They took her off IVs, onto oral antibiotics and started a clear liquid diet. Her WBC had dropped to 13K from almost 21K. Everything was going well. YAY! But wait ... not so fast.

There's always a but. And it's usually bigger than the ones Freddie Mercury used to sing about. 

I had warned them I'd be a little later in my arrival but since I only planned to stay 90 minutes or so, I didn't worry. I should have.

I walked into bedlam.

Mom's roommate (a poor, balled up little lady who groaned and grunted) had like 5 visitors, two nurses were trying to do a procedure with said roommate and I was barely in the door when Mom greeted me with a stack of hospital gowns and the tiny overnight bag I'd brought Monday completely packed. She immediately lit up. "Thank God you're here. Take me home."

I, of course, could NOT do that. The next hour was spent trying to figure out just what the hell transpired in those six or seven hours since I'd called, and a flurry of activity to roll out the roommate to a different room. And trying to convince Mom that the previous sitter was truly gone (Mom thought she was a disciple of Satan).

Apparently, Mom thought that our dog (who died in 2011) was home alone, needed to go outside and be fed. It wasn't fair for him to be neglected and she needed to get home. She started tearing up the room trying to find clothes to dress so she could leave. (I purposely spirited clothing away Monday to avoid having her get dressed unnecessarily at some point.)

So ... I'm waiting for the call to tell me they're letting her go today or tomorrow. I don't see how they could release her today when she's been on a liquid diet less than 24 hours and her WBC was still elevated, but hospitals are ruled by the b*stards that are insurance companies so I'm braced for anything at this point. But I'm NOT taking her today. NOT. Someone has to tell me what supplies I'll need and I have to have a chance to do that and prepare. So if they send her tomorrow, they've got to prep me today. I'm ready for that fight. 

I neglected to mention that the replacement sitter, a male nurse who Mom chose to name "George" was with her last night. He apparently has had several years of geriatric experience and Mom took a little shine to him. He knew the drill to calm her down. He said he thought the previous nurse didn't act quickly enough or correctly to defuse the situation and so the confrontation came up. He talked and laughed with me and made me feel she was being left in good hands. That much at least went well!

Posted: Thursday, September 5, 2019 2:51 PM
Joined: 10/24/2018
Posts: 971

I'm glad you got "George"! You can refuse testing, if you just happen to be in the right place at the right time. Your experience is exactly like too many we've had, only I was pulling 36-hr shifts being in the room. Mom being almost 92, we've gone with hospice.
Posted: Monday, September 9, 2019 10:33 AM
Joined: 6/11/2019
Posts: 511

So ... we're home. As of late Saturday morning. She's now taking NINE medications! I know this probably doesn't sound like much for some of you, but she had been taking 2-3.

The timing is making me crazy. Trying to make sure she's getting the right dose at the right time. And she's none too happy about all the meds. Can't blame her. Some of these pills are the size of bullets! What the hell are these people thinking prescribing this stuff to PDWs?!

 She's not sleeping again. And I found out this morning that she STILL had an elevated white blood count when they sent her home Saturday. ARGGHH!!!

My caregiver is currently carless and can't get here. My backup is out of town this week. Trying to juggle a variety of projects working from home ... and managing the constant care Mom now needs. She needs more help dressing than before and incontinence is at a new level. I'm hoping that's partly due to medication and may let up as some of them taper off this week. I have to schedule a follow-up with her primary, too.

When exactly am I supposed to work so we can eat and keep lights on?! Also still trying to get everything out of the other house, get a remediation crew in AND keep things steady enough here that she doesn't freak out.

End of rant ...


Posted: Monday, September 9, 2019 2:47 PM
Joined: 12/4/2011
Posts: 18322

How fortunate to have a hospital sitter!!!!

Check with the pharmacy to see if some of the meds come in a liquid form. Get a pill crusher and a serious pill dispenser while you are there.

Make certain they did a urine want to know that you have the correct anti-biotic.