Mom with dementia stuck in the ER

[jhynesrockmtn]

My Mom is 87 and has pretty severe dementia. She still recognizes me and my sister, but isn't oriented to place or time. She's lived in a memory care facility for a bit over 2 years now. She mostly refers to it as a school she works at. We've been in a loop where she calls and asks me to come pick her up and take her home. Typically I've been able to redirect her and tell her I can't come today, she can stay "see the bed there mom" and I'll pick her up tomorrow. She has no short term memory so that type of "white lie" has worked well.

Friday was different. She escalated in the middle of the night and I couldn't talk her down. They had to transport her to the ER very early Friday morning. They can't do any type of restraints in memory care. Once they are deemed a danger to themselves or others, they have to call the ambulance service. I agreed with the staff person's judgment.

She may have a slight urinary tract infection so that's being treated. They did send her back on Friday mid day. She had been slightly sedated in the ER because she was a real pain in the rear to manage. I was there and consented to everything. My sister was with her but stepped out briefly. Of course Mom fell and hit her head. Back to the ER for a CT. Doctor released her. Friday night she escalated again once the zyprexa wore off. Back to the ER.

She had a case manager over the weekend at the hospital who just kept telling me she couldn't stay. She had to go back to the facility or home with me. This is after two falls, a UTI, severe behavioral issues..... She still doesn't qualify to be admitted. The facility nurse says we can't take her back until she is stable on a medication regimen that manages her behaviors.

She's basically been sleeping since Saturday. Thankfully we have a new case manager who is a night and day difference. She actually gives a crap and has been so kind and good at explaining things to us. She's also now been seen by a Psychiatrist to review her meds.

Apparently this issue is a well known gray area with seniors with dementia and behavioral issues. My friend who is in hospital administration calls them long termers. Hospitals don't want them, care facilities like memory care and skilled nursing won't take them back. Of course getting insurance to pay is an issue. Ugh, our system really sucks at times.

If she recovers and can go back, our next issue is her savings is dwindling. Her current "rent" is over twice her SS and pension. She has between 12 and 24 months of money left depending on how many add on services she needs if they can get her stable. Then we'd need to find a medicaid bed for her. Her current facility doesn't have any.

Sorry for the rant. Dementia is just a really cruel end for people. I know others here have dealt with it. In my mind I really lost my Mom 4 years ago. Our care/insurance system only makes it all worse.

Mom with my older dog Gracie a few years ago.

[jcommin]

Jerry, I really feel for you. My mom was in an assisted facility for 4 years - and that was a tuff decision. My mom ceased to know me toward the end. I felt I lost her twice: one when she didn't remember me and when she passed on. I never got closure like I did with my dad. She died in 1998 and sometimes it feels like yesterday.

I hope you have family support to help you thru this.

[LWJ]

I am so sorry to hear. I haven't run this race yet but I sure don't want to. This sounds like torture.

[GH85Carrera]

I watched my father in law go from a man that could fix anything from rebuild and engine to fix home AC or move a load supporting wall in a house to turn into an infant. The saddest part is he was just 60 and rode a bike 100 miles per week for exercise and was in perfect health. He finally died when he forgot how to chew or swallow.

So he really died twice, once when his mind just slowly went away and once when his body died.

[Baz]

Sorry you are having to go through all of this, Jerry.

Sounds similar to an episode my Mom went through last Spring while at 100 years old and still living at home she started displaying UTI behavior. Only it was worse than any we had seen before. We being myself and our caregiver.

Long story short, we took her to the local hospital ER and she was admitted. They kept her for a solid 5 days, the first 2 of which Mom was out of it mentally. Then all of a sudden her mind was back. In those first 3 days they had her on a IV of the strongest med available to combat a UTI. They also conducted all kinds of tests. In the end....they never could explain what had taken place to make her go "cray cray" like that. This after blood tests and everything.

We were able to move her from the hospital to a local Hospice facility where she stayed for another 5 days to continue recovery. They were fantastic there. The next step was getting her into a local ALF, which I was able to do. She's been there ever since and that was last April.

Her short term memory is not intact but long term not bad. She turns 101 on the 20th.

I see her twice a week and our caregiver twice a week. She gets Hospice 3x week for showering, etc. And a Hospice nurse visit every 2 weeks. The ALF is only a 6 bed and they do a great job there.

All this is covered by Medicare except rent for the ASF. She and her previous 2 husbands are military vets so there's survivor benefits coming in along with SS and also interest from an investment account which covers most of her rent expense so that's a big help.

You will have to work through Medicaid as you said and that's going to add more work for you, as you said.

The fact that you have a "better" case worker is a game changer. They are like the gate keeper in helping your Mom get the help she needs. As challenging as it is.....a longer stay in the hospital with full treatment for any possible UTI would be my recommendation. See if there's a Hospice care facility nearby too she could go to afterwards. They can give her sedatives to control some of her personality and anxiety issues. That is normally covered by Medicare, I believe.

Mom has Tricare too but I'm not sure we needed that for anything other than the meds she was taking...but I could be wrong.

Back to the UTI issue.....Hospice told me they could put Mom on a prevent program where she gets a med every day. I also provide the AZO brand cranberry supplements for her to take daily. The bathing/showering regime also has helped. When she was still living at home I know she wasn't as diligent as she needed to be in changing out her pull ups. Gotta keep it all sanitary down there!

Best of luck to you and your Mom.....

Here's a pic of Mom from my visit yesterday.

[Rusty Heap]

A wise option while younger, is to pre-pay your Extended Care Coverage for a lump sum when you need it.

[2.7RS]

Sorry about your Mother. Something very similar happened to mine

I have written in my will when and how far I want to go

I have told my kids I won't be your problem. It's taken care of

[Flatbutt1]

I feel for you Jerry. I went through this with my Mom who lingered for two years in such a state. After the assisted living facility took every penny she had we managed to get a Medicaid bed for her in an absolutely horrible facility but we couldn't afford 50,000 a year for a better one.

She suffered a UTI, went to the ER for 4 days. Then the home told us she that she was gone for too long therefore she lost her bed.

So, thanks to a truly caring doctor she stayed in the hospital on Medicaid's dime until we found another bed.

Elderly care for the middle class is a nightmare.

[Zeke]

Originally Posted by 2.7RS

Sorry about your Mother. Something very similar happened to mine

I have written in my will when and how far I want to go

I have told my kids I won't be your problem. It's taken care of

Curious about this. I know how far I want to go but I don't see how anyone can take care of that other than me.

[wildthing]

Thanks for sharing. I can only imagine. Though my mother is getting up there in years so I suppose I'm not too far off from being in the same situation.

There is something to be said about putting more resources into geriatrics and everything associated with getting old. People are living longer. But they are not exactly "healthy". Whether it's self-funded long term care, more research on aging and age-related health concerns, government intervention, etc...

[gtc]

We had many of the same experiences with my MIL over the last year and a half. She had Type I diabetes which complicated things as well.
It took three tries to find a care home that was able to meet her needs. Finding the right balance for all her meds is what really made a huge difference in keeping her comfortable and free of anxiety.
I wish you and your mother the best... it is such a difficult disease for both the patient and their family to experience.

[A930Rocket]

This is definitely a difficult situation for both you and your mom. We just went through this with our mom over the last couple years. And this past year was really a decline culminating in three different moves to different facilities over the past six months. During this past year, she fell down and broke her hip, and after that was just about healed, she fell down and broke her arm in five places. She went independent living to assisted-living to memory care.

She passed away on 1/26 at the age of 95. Fortunately, I was able to see her on her birthday on 12/22 and on 1/26, the day of her passing. I wish I could’ve been there every day. She was a great mom. I’m headed back to Atlanta this weekend, so we can bury her next to my father, who she was married to for over 65 years. Fortunately, my dad planned wisely and we were able to pay for everything, including lodging and outside help.

[Baz]

Originally Posted by A930Rocket

-snip-
She passed away on 1/26 at the age of 95.

Sorry for your loss. 95 is a good run. I know she was happy to have you with her when you were there.

Chin up my friend......

[unclebilly]

Wow... this all hits home as being familiar to what I've been going through with my dad (except the UTI). They are giving him meds for his behavior. He is settled really well now and we take him out as often as we can. This was last Saturday at Nitro Cross.



A930 - my condolences for your loss.

[wdfifteen]

I’m sorry about the situation with your mom Jerry. Sounds like a lot worse than what I had with Dad.

Originally Posted by Zeke

Curious about this. I know how far I want to go but I don't see how anyone can take care of that other than me.

Yeah. I bought a handgun with my end time in mind “We need it for self defense” I said. I don’t know how I’ll know when I’ve gone too far around the bend to know it’s time to use it. Better too soon than not at all I guess.

[pwd72s]

I'm convinced that if you play by the rules, work, save, invest, etc., the system is set up to remove every last dime you've accumulated until you then are allowed to die after being placed in a facility with poor care.

[wdfifteen]

Originally Posted by pwd72s

I'm convinced that if you play by the rules, work, save, invest, etc., the system is set up to remove every last dime you've accumulated until you then are allowed to die after being placed in a facility with poor care.

Someone set up a system? Who?

[pwd72s]

Originally Posted by wdfifteen

Someone set up a system? Who?

People you undoubtably voted for. Beyond that, don't want to send this to PARF.

[wdfifteen]

Originally Posted by pwd72s

People you undoubtably voted for. Beyond that, don't want to send this to PARF.

LOL. It’s always the nebulous Them!

[A930Rocket]

Originally Posted by wdfifteen

I’m sorry about the situation with your mom Jerry. Sounds like a lot worse than what I had with Dad.



Yeah. I bought a handgun with my end time in mind “We need it for self defense” I said. I don’t know how I’ll know when I’ve gone too far around the bend to know it’s time to use it. Better too soon than not at all I guess.

I tell Ms Rocket I have a plan B, as I don’t want to be a burden to her, the kids and a money drain. And I don’t want to live like that. I’m not sure what it will be, but one needs to do it early enough so that they know what they’re doing.