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 Unresponsiveness due to infection 
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Joined: Mon Feb 16, 2009 12:04 am
Posts: 47
Location: Michigan
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Post Unresponsiveness due to infection
Early Weds morning (2AM) my dad was totally unresponsive to us...BP was high, but otherwise vital signs were stable. We landed in the ER for CT scans, blood work, etc. Turns out he has pneumonia and UTI. He is being treated in the hospital with IV antibiotics. The unresponsiveness was noticed about 2AM and he began to arouse about 10 AM. At first he was very inappropriate, giddy, talking like he was drunk. Gradually he improved though not to baseline. Today he is mostly confused about what heppened to him, but otherwise oriented. He is very weak and has many physical problems, he is 85.

I know that the transient unresponsiveness is recorded in the LBDA literature and I had spoken to someone else whose LO recently had this. However, it is entirely another story to witness this first hand!

This episode culminated a difficult week...he was just D/C'd from the hospital Saturday having been evaluated for orthostatic hypotension and sleeplessness. He had some cardiac meds adjusted and was started on nighttime Serroquel and Melatonin. We had an appointment to start him on hospice at home on Monday. I stayed overnight with my parents as we were having an April blizzard and I didn't want to drive over in the snow on Monday. At 2AM my mom had an acute collitis attack with extreme pain and bleeding. So...sent her by ambulance for an hour trip through horrible weather to the hospital where she was admitted. I couldn't leave dad and knowing she would be sick for a while, decided to cancel hospice and admit him to rehab (he qualified having just been in the hospital). Spent all day admitting to the facility and part of Tuesday. Then this occurred his second night there! Mom was D/C'd home yesterday.

Not certain what we will do when he is D/C'd this time...will depend upon so many factors. I have truly learned to take it one day (or even one hour) at a time! I feel guilty leaving him in the hospital without being there more, but I need to prepare for the next round!

When I left Dad this afternoon at 2PM, having helped him eat lunch, go potty and then back to bed, turned on Gunsmoke and Bonanza, spent 10 minutes trying to satisfy him with the arrangement of the nurse call lilght, he was fussing about who would help him with his dentures and hearing aides if I wasn't there to tuck him in tonight. I said, "Dad, you trust the Lord with your soul and your body...please just trust Him with your teeth and your hearing aides". He said, "Okay". I kissed him and I left.

Will call nurse at 6AM to see if the Seroquel works better tonight, so far it has not kept him asleep all night. Since he sleeps fairly well for the first few hours they are going to give it around midnight when he wakes up and thinks it is morning. Hope he won't have a "hangover" from it. Also not sure what to expect with the interference from the antibiotic. It is Levaquin and that may cause agitation...nothing to be done for it however, as that is what he needs to fight the infection. It will also play havoc with his blood thinner no doubt...

They must think I am a fighting tiger when I go into the hospital armed with my articles and questions about what, why, when, and do this, not this, etc. The advocate role is important, but when I am so exhausted and stressed I don't think it helps. I had to apologize to the doctor and the nurse today, they were so kind to me and the nurse hugged me. I feel like if I can just control everything it will somehow make him better or at least keep the status quo. Knowing all along in my heart that I truly control nothing...

What a journey!

I am sorry we are all on this road, but I am certainly thankful to be able to share the load with others.

May God bless all the LBDA caregivers this Easter Season and grant us, our LO's and families wisdom, strength and patience!

Good Night. Sharon


Thu Apr 09, 2009 10:58 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
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Sharon,

You've got your hands full. Is there any other family that can help out NOW?

Infections can really throw the elderly with neurodegenerative conditions for a big loop... Sorry to hear all that's been going on with your dad.

I think you will have to wait and see what happens over the next few days before figuring out what's next. You might think about putting him into a hospice facility, if there's one in your area. Or in a SNF. Talk to the hospital discharge planner or the rehab facility or the hospice organization from Monday's cxld meeting about putting your father in a SNF on hospice....what part of that does Medicare not cover? Or at home on hospice with lots of hired help.

If you put your father on hospice, have an upfront conversation with them as to what you will want to have happen if/when he gets pneumonia again. And what about another nonresponsive episode again? Every hospice organization has its own rules about this.

Is your dad signed up for brain donation? Sorry if I've asked this already. If this is something your mother or the healthcare POA wants to have happen, make the arrangements immediately.

Good luck,
Robin

PS. April blizzard??!


Fri Apr 10, 2009 12:38 am
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Joined: Mon Feb 16, 2009 12:04 am
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Location: Michigan
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Hi Robin. He will be eligible for SNF when he is discharged, but only for as long as he remains skilled care...if he is able to get physical therapy that could be about a month, but he must be making progress. When you sign up for hospice, you sign over your Medicare benefit. Hospice wll pay for equipment and medication related to the hospice diagnosis, RN visits plus home health aide visits, but it is intermittent care...in and out to assist with bathing, etc., Some volunteers available for short-term sitting with him. Medicare and Hospice do not pay at the same time, so familly is responsible for room and board, even at a Hospice facility. Best option is at home with private care though that cost could exceed room and board.

No, we don't have other family available. Hospice does provide 5 days/month respite in a hospital or SNF and short-term hospitalization as needed. If he needed to be hsopitalized for a non-hospice diagnosis (for example, injury from a fall), we would cancel Hospice and go back to Medicare temporarily...complicated! (This is my best understanding from reading the materials, I may not have all the details straight. We did not get a chance to meet with the Hospice coordinator yet).

We will need to make some decisions re next time something like this happens. This was unexpected and with mom in the hospital herself and no other family available that night so I did what was best at the time. Although, treatment with IV fluid, oxygen and antibiotics is within the scope of hospice care I bellieve. This would be an early Hospice intervention as he has been up and about and relatively oriented up until this episode. His hospice care will be for overall health decline, not specifically the LBD. He has heart and lung problems that preceded the dementia.

And yes, we had an April blizzard overnight Sunday. Most of the snow is gone today...this is Michigan after all!

Thanks for your support, Sharon.


Fri Apr 10, 2009 7:40 am
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Sharon,
I am so sorry for everything your family is going through, it's always so hard when things change when you think all is under control for the moment and with LBD that's all there is the "Moment". With the PT if he should refuse 3x's they could say he , he needs to be discharged . Switching from Medicare to hospice is not really a big deal so don't let that worry you too much, you have enough to think about! The Pneumonia and the UTI is more than enough for Hospice in a illness like LBD, The care we recieved was home care for 5 days a week (90 min)and Nurse 2x's a week but you could reach them anytime 24/7 and that in itself is a comfort.All the DME the patient needs.
The volunteers are far and few in between and they really can't do any hands on.
I do hope you get some of this resolved before too long, I will keep you all in my thoughts!

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Irene Selak


Fri Apr 10, 2009 8:00 am
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Location: SF Bay Area (Northern CA)
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Sharon,

Thanks for clarifying that hospice doesn't pay room/board. That's the part I couldn't remember.

My 2 cents... What I would do is discharge your father to a SNF on Medicare benefits. If/when Medicare runs out because there's no skilled need or when your father is obviously close to death, switch over to the hospice benefit.

What I meant by a hospice house is not respite. In some cities in the US there are actual houses or facilities where people go to die.

Just to be sure... I think you did an incredible job with two simultaneously sick parents!

Yes, you need to make decisions NOW as to what you will do if you get into this situation again. Pneumonia frequently re-occurs. And the non-responsive episode could re-occur as well. Not all pneumonia is treated with antibiotics....it's up to the family. Not all hospice organizations will handle IV fluids.

Good luck,
Robin


Fri Apr 10, 2009 11:11 am
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Thanks, that is my thought as well Robin. He will probably be in the hospital tilll next week, so we'll see how it goes. SS


Fri Apr 10, 2009 9:05 pm
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Location: Henderson, Nv.
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Sharon,

So sorry to hear all of these recent events. Your poor mom and dad...it must be terribly difficult for all of you. You must be worn to a frazzle! All of these decisions to make! :roll: Wish I lived nearby as I would offer to help you out...all I can offer is a good ear to listen and words of support. You have done an absolutely outstanding job with your parents. I am amazed at how strong you have handled the situations. And then to have a late snowstorm on top of all of this. Unreal. Normally I would say: what else?? but I have learned not to say that anymore...as the last few times I did...a whole lot MORE happened which I didn't need. :shock:
My wishes to your family for better health and to you...wishes and prayers for a peaceful day or two so you can regain some of your strength.

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Dianne C.


Sat Apr 11, 2009 12:46 am
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Dear Sharon --

I've only gotten to the forums sporadically lately because of all the confusion at our house. Girl, you are handling one hell of a load -- you are an amazing woman! Your answer is in your own post ... Trust the Lord with your Dad's soul and body (as well as his teeth and hearing aids), and trust Him with your Mom's as well.

Find out about any hospice facilities in your area. Sometimes they are special facilities, often affiliated with a hospital, sometimes they are a designated floor or wing right in a hospital. The discharge social worker at the hospital where your dad is can probably tell you what's around.

A dear friend who recently passed away spent many months on hospice care. During that time she was on hospice care in her own home, alternating at least a half dozen times with hospice moving her to a hospital-affiliated hospice facility (for a week or two at a time) whenever her symptoms became more grave. I wasn't aware that they could do this.

Also, contact your local Area Agency on Aging -- they often have programs where they can quickly authorize and provide in-home respite and/or home health care for a limited period (e.g. 30 days).

Where in MI are you located?

My Easter message for you ... let go and let God. Just keep loving your parents as you do and it will all unfold as it is meant to. Special thoughts and prayers for you from our house.

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Renata (and Jerome-in-Heaven)


Sun Apr 12, 2009 12:29 pm
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Sharon,

I just want to say amen to the comment that you're an amazing woman - an amazingly strong woman -- to be handling all this. I hope in the midst of it all, you're eating and resting well. May the Force be with you.

Garnet


Sun Apr 12, 2009 3:51 pm
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Thank you all so very very much for the kind words, thoughts & prayers. Dad is still in the hospital, we found out today that after a full course of oral and IV antibiotics that his pneumonia is actually worse. They believe he has an antibiotic=resistant bacteria and the drugs to treat are not recommended in his poor overall condition. He is extremely agitated which we believe is due to the antibiotics, he can't survive another 7 = 10 days in this state with even stronger antibiotics. Plus, he pulls his IV out every night.

He can apparently remain in the acute care setting for a while yet and still have hospice come in...that I did not know. We will go back tomorrow and speak further with the doctor and a hospice coordinator. I will relay what I learn so it may help someone else in the future.

He is in the Lord's hands and we will get through this one moment at a time.

We are in Southeastern Michigan. If we need to bring him home at some point, we wll follow your leads on additional home care. We did apply for VA benefits and have not yet heard back.

Good Night All.


Sun Apr 12, 2009 8:21 pm
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Sharon,
I am so sorry that things seem to be getting worse for your Dad's condition, Yes it is all in the Lord's hands!
Keeping you in my thoughts!

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Irene Selak


Sun Apr 12, 2009 8:52 pm
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Sorry to hear about the possible MRSA pneumonia. It's a tough one to treat.

There was a gentleman in the same SNF room as my dad who kept pulling out his IV. I liked the way they approached it: they put these large cotton mittens on his hands, which he couldn't take off. And he couldn't pull out the IV any more. He was still frustrated by the situation but he couldn't cause damage to himself and this was done without medication. Sometimes meds are needed, however.

Best wishes to you and your family.


Sun Apr 12, 2009 8:54 pm
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Sharon -
Whatever God's plan is what will be ... do all you can to keep your Dad as comfortable as possible and feeling safe about wherever this stage of his journey takes him. We're all here for you...

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Renata (and Jerome-in-Heaven)


Mon Apr 13, 2009 3:03 am
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Sharon,

You were in my thoughts today and I hope things are improving for your dad, mom and you also. Will say a special prayer for you and your family tonight. Stay strong...and take care of yourself. We are all here for you if you need us. God will guide you through this difficult time. Stay strong.

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Dianne C.


Tue Apr 14, 2009 12:21 am
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Dear Sharon,

You are in my thoughts and prayers during this extremely difficult time. You are doing an amazing job taking care of both of your parents all by yourself. Please take care of yourself and know that we are all here pulling for you.

Joyce K


Wed Apr 15, 2009 8:36 pm
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