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 ER, Hospitalization, and Home Care: Our current experiences 
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post ER, Hospitalization, and Home Care: Our current experiences
Ten days ago, on Sunday, Coy was tired all day and had a dry cough. In the middle of the night it became a very wet cough, the sputum was tinged with red, he had a fever, and he was totally out of it. I got our son up and he helped me change Coy (who is not normally incontinent). What to do? Whatever our attitude about ER etc each instance is a new decision point and new stress. I talked to our clinic's triage nurse who suggested this could be either a congestive heart failure episode or pneumonia and she adviced the emergency room. I hesitated -- we know ERs are not wonderful places for LBDers -- but decided to go in. We didn't try to dress Coy (getting dry pajamas had been hard enough), and had a very hard time getting him from bed to a wheelchair.

How do you do it? I know that some of you deal with incontinent non-abulatory loved ones. That brief exposure made me wonder how that can be done over and over in a home setting. I'm afraid I wouldn't last long.

Son drove us in and stayed while we were in ER. It was not a chaotic scene, and although I understand it did get pretty busy, once we were in an examining room we were isolated from the activity. No one we encountered in the ER had ever heard of Lewy Body Dementia. Sigh.

Coy had pneumonia in his right lung. Noticing all the bruises on his body the doc asked if he ever hit his head when he fell. Yes. He decided to do a head scan. I wondered if that were the right thing to do, and decided the non-invasive test would not be a problem, and we'd deal with any suggested treated if it came up. But the scan showed no presence of current or recent bleeding so it turned out to be just reassuring.

Doc wanted him admitted. I asked if we couldn't bring him home and treat him. Doc answered that a couple of days of IV antibiotics would give a fast start on healing and that also his INR level was very high and he wanted him treated with vitamin K. So we stayed. Son left and got on the phone to siblings.

Nobody on the floor seemed to know much about special needs of dementia patients. I explained that things would go more smoothly if a family member were always with Coy, and they seemed relieved that we had that plan. As always, they handed him the call device and told him to push a button if he needed anything. This device was also the remote control for the tv and had buttons labeled for water, bathroom, pain, and a few other things. So, assuming Coy could remember where he was and could find his reading glasses and could figure out the device, he probably could have called for help -- if he remembered he was supposed to have help getting out of bed, etc. :roll: It is hard to know whether to laugh or cry, isn't it? Two daughters and I took shifts and stayed with him around the clock, and the stay did go pretty smoothly. Last time I stayed around the clock by myself, a masochistic feat I hope never to repeat.

They offered to send him to an TCU. No thanks. So we've been home a week, on "home care." That turned out to consist of 4 nurse visits, a health aid for an hour a couple times a week, and a PT twice a week. His lungs are clear now and he is recovering well, but he is very tired and weak.

I want to do a little venting about the nurse visits and the hospital nutritionist, but I've run out of time, so ... more later.

_________________
Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Wed Jan 25, 2012 11:09 pm
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: ER, Hospitalization, and Home Care: Our current experien
oh Jeanne…..

what happens with you and Coy seems so personal…..

thanks for sharing your pain and joy….

I cringe while reading the pain you are going through….

I rejoice with each little triumph and good moment….

…..

looking forward to cooking some real cajun food in the camper…..for you and Coy on my next trip up to Mayo…..

DAT scan…..next time….and some real food……

…..so the two of you take care….and get all better soon….

_________________
Craig - Patient - Male - 56 years old - Lewy Bodies diagnosed on March 23, 2011 - cognitive disorder NOS dx 2007 - RBD REM dx 2007 issues for 20+ years - intention tremor 1974 - other issues many years


Wed Jan 25, 2012 11:48 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3176
Location: WA
Post Re: ER, Hospitalization, and Home Care: Our current experien
Jeanne, I was wondering why we hadn't heard from you and now I know! What a good caregiver you are and what a supportive family! Coy couldn't ask for any better. Do get some rest, though, and take care of yourself! Hugs.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Thu Jan 26, 2012 2:09 am
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Joined: Wed Mar 02, 2011 1:04 pm
Posts: 251
Post Re: ER, Hospitalization, and Home Care: Our current experien
Dear Jeanne,
so sorry to hear this.....will be thinking of you and Coy and hoping he gets better soon...so sorry this has happened....wish you only the best.....

_________________
First symptoms in 2000 at 35 yrs old. LBD early onset dx 2-17-2011 at age 46.

' "I try not to worry about the future, but rather to "wonder"....and "wonder" is one step away from "awe" '......From a wise friend........


Thu Jan 26, 2012 8:25 am
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Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: ER, Hospitalization, and Home Care: Our current experien
Jeanne, so sorry to hear about Coy's illness. You are an amazing carer!!!! Both Coy and your good self will be in my prayers,
God Bless,
Ger xx

_________________
cared for Dad who passed away on January 28th 2013 R.I.P.


Thu Jan 26, 2012 1:26 pm
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Joined: Tue Aug 30, 2011 1:36 pm
Posts: 48
Post Re: ER, Hospitalization, and Home Care: Our current experien
So sorry for this episode for all of you. Glad Coy is doing better and I pray he continues to strengthen.

I am glad most hospitals seem to have seen the light on allowing family to stay with loved ones with dementia. (Actually, I am not sure I want to be left alone in a hospital when I'm sick even without dementia. There is just too much that can get screwed up.) We used to have to fight to stay with my Grandma, but we had few difficulties staying with my Mom 2 years ago. Love the story about the call light. Can't tell you how many times a nurse would come in with Grandma's pills, put them on the table next to the bed, and say, "Here are your medicines, Mrs. Murphey." "Ummm, Mrs. Murphey hasn't been able to pick up a pill and swallow it whole for about 7 years now." I mean, I guess when she came back in and they hadn't been moved, she would've known she had to crush them and give them to Grandma. Or would she have tried to get her to swallow them first? I do know that the work is hard and the workers few. It's just all a part of the institutional scene, and it's maddening.

Wishing you rest and strength, Jeanne. Take care.

_________________
Donna G, 52, helped Dad take care of Mom, who died at home surrounded by family in June 2012.


Thu Jan 26, 2012 5:28 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3113
Location: Vermont
Post Re: ER, Hospitalization, and Home Care: Our current experien
So sorry for the latest episode Jeanne. I can so relate to the hospital situations many of you have described here. Had I not stayed with my dad and educated the nurses on the floor about what he was capable of (NOTHING) at that point, he wouldn't have eaten or had anything done for him. Supposedly the ER doesn't tell the nurses on the floor or the "hospitalist" (that's another whole chapter - NOT a good thing in our experience) why my dad was admitted. He was basically paralyzed and they'd plunk a tray of food in front of him and say "here's your meal." OK - he can't sit up, hold a fork or spoon, so how the he(( is he supposed to eat? if a family member weren't there to feed him AND to tell the nursing staff he can perform NO ADLs?
I shouldn't have even gotten started on this! All the best to you and Coy, Jeanne, and everyone else. Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Thu Jan 26, 2012 6:44 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3176
Location: WA
Post Re: ER, Hospitalization, and Home Care: Our current experien
Lynn, somebody should write a book about hospitalists! We've had nothing but bad experiences with them.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Thu Jan 26, 2012 7:33 pm
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post Re: ER, Hospitalization, and Home Care: Our current experien
wondering myself, where you had been.. so sorry, sounds as though you handled it with class and love.. coy is so lucky you have you in his life.. hope the next few days bring better health for coy and some rest for you...

take care
cindi

_________________
sole CG for hubby.1st symptoms, 2000, at 55. Diag with AD at 62, LB at 64.. vietnam vet..100% ptsd disability,sprayed with agent orange, which doubled chances for dementia. ER visit 1-14,released to memory care..


Thu Jan 26, 2012 8:20 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: ER, Hospitalization, and Home Care: Our current experien
Jeanne,
Glad to hear that things have turned out so well. If you had to do it all over again, would you have gone to the ER? Would you have allowed Coy to be admitted?
Robin


Fri Jan 27, 2012 1:04 am
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: ER, Hospitalization, and Home Care: Our current experien
Interesting question, Robin. If Coy were near end-of-life, I'm not sure I (he) would want pneumonia or congestive heart failure treated, and so that would would be a different set of stressful decisions.

As it is, although he has shown some decline lately he is not in end stage and treatment still seems appropriate to me. The question is more about treatment at home or elsewhere. At 2 am, "elsewhere" is an emergency room. Yes, as it turned out I'm glad I took him in. In addition to getting started on an antibiotic promptly he needed vitamin K treatment.

As for admission, yes, I'd do that again, too (with round the clock family presence). The practical considerations weighed in. Even the prospect of getting him home and into the house was daunting. But within 2 days he was walking again and bringing him home was a different proposition. I felt that his wonderful geriatric doc would give good advice about hospitalization, and when she suggested one more day to make sure the INR was OK, I went along.

The other time he was hospitalized with pneumonia he was in 5 days, and I think he really did have to recover from the hospitalization experience. That doesn't seem to be true with this 2-day experience.

_________________
Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Fri Jan 27, 2012 1:26 am
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Joined: Sun Dec 16, 2012 12:05 pm
Posts: 7
Post Re: ER, Hospitalization, and Home Care: Our current experien
Mom has been hospitalized a couple of times and we've always stayed with her. The hospital was very nice about it. Her room had a couch that folded down into a twin bed and also a recliner. There were some great docs and nurses but it only takes one bad to remind you how helpless your loved one would be if left alone. Mom also had a stroke. Her left side never recovered any functional use and she's incontinent. The nurse's were always appreciative when we helped clean her up. It makes a HUGE difference when someone else helps her turn so you can use two hands to clean!


Wed Nov 06, 2013 6:40 pm
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