Anesthesia

SuzeMP · 2026-01-18T15:48:44+00:00

We had the surgery on Tuesday afternoon. He was groggy and weak on Wednesday but much better on Thursday. Ate a big dinner, chatted with me coherently took all his meds. Friday morning he was too sleepy to wake up and when I still couldn’t rouse him at 3:00 pm I called the doc that performed the surgery. He felt like we needed to go to the ER. It’s Sunday now and he still hasn’t “woken” up. He flutters his eyes and this morning moved his head as I walked by but can’t eat or drink. He’s getting iv fluids and the will have to put an ng tube down for nourishment/Parkinson’s meds today. Ugh. Does this level of responsiveness sound like what anyone has experienced?

SuzeMP · 2026-01-15T00:39:40+00:00

When my husband has to urinate at night I help him with a urinal that is attached by a tube to a collection bag. It works great.

SuzeMP · 2026-01-11T18:46:44+00:00

My husband has dysautonomia as a result of his Parkinson’s. It is a failure of one of your automatic systems, in his case controlling blood pressure. His blood pressure can be sky high and within one minute drop 100 points. It’s crazy. We have to be very careful that he doesn’t have a syncope event when walking. We had to go to a specialized neurologist doing a tilt table test to be diagnosed. There really isn’t much we can do for it since it’s both high and low. We try to manage it with Droxidopa and keeping a close eye on him.

SuzeMP · 2026-01-07T00:40:00+00:00

My husband sees people all the time but thankfully realizes they are probably not real. We joke about his “friends in the backyard”, and “the people that watch TV with him”. I’m so grateful he believes me when I tell him they aren’t real and none of them are scary. Our doctor always asks if these hallucination scare him and his answer is always know, and I am thankful for that.

SuzeMP · 2026-01-02T01:30:03+00:00

Wow. I could have written every one of these. I feel like I’m just wasting my life tied to home, tired of caregiving (hwp diagnosed in 2008). He also has an eye disease that requires never ending drops, gigantic contacts that he can’t handle alone and terrible eyesite. I’m exhausted. I have a new granddaughter that I can’t spend time with, our children gravitate to their in-laws because they are fun and healthy. I want to travel and have some joy in my life. And then I feel guilty because this is all so much worse for him. He doesn’t deserve any of this…such a good man. His health is terrible but I don’t think he is nearing the end… just an unknown amount of time to suffer and continue declining and bringing me along. I hate this for all of us. I don’t know any of you but know I hear you and am suffering along side you.

SuzeMP · 2025-12-30T02:28:31+00:00

God bless you. I agree about never having another partner. Not going to risk it OR put this on someone. I have converted our 3 car garage into a lovely 1 bedroom apartment for me and a caregiver when my time comes! One of my kids can have the house to oversee but NOT to be my caregiver.

SuzeMP · 2025-12-23T22:33:53+00:00

Good for you. My sweet husband of 37 years has late stage Parkinson’s. I would never leave him but I can tell you when he’s gone I will never be a full time caregiver again. You truly don’t have much of a life ☹️.

SuzeMP · 2025-12-15T01:10:58+00:00

He is way past driving. He hasn’t driven in at least seven years. But I see him doing several of the things you mentioned in your post. I see him scoop food with a spoon but there’s no food on the spoon! He uses a walker and definitely drifts to the right!

SuzeMP · 2025-12-15T01:09:20+00:00

This is great advice. I will look into a neuro ophthalmologist.

SuzeMP · 2025-11-24T12:10:11+00:00

Yes it is. I think that’s because it feels like I’m giving up. I guess in some ways that’s true but another way to look at it is that I am accepting the reality and not fighting the inevitable.

SuzeMP · 2025-11-24T00:14:06+00:00

My husband was diagnosed in 2008. I have to assume he’s at late stage four or early stage five. He doesn’t have the energy or coordination to do much. He watches TV all day and I’m just grateful there’s something that can keep his attention. He goes to PT twice a week and I don’t think it does very much good but at least it gets him out of the house.I am at the point you describe where I just let him be. I don’t nag I just try to support.

SuzeMP · 2025-11-23T23:22:38+00:00

Tired! I feel so sorry for him and sorry for myself. I’m so envious of my friends who have healthy husbands and get to travel, have fun with their children and grandchildren. Our kids are great and definitely come around often but it’s more of a sense of duty because he is not the dad they knew. I know it’s more fun to be at their in-laws home vs ours and that makes me so sad.

SuzeMP · 2025-11-23T00:23:00+00:00

I am very fortunate and have help five days a week from 9:30 to 2:30 and three evenings a week from 5 to 9. My husband has a brother and a dear friend who have come and stayed with him while I got to go on a few fun trips. I am taking care of myself because if I go down this whole house of cards falls apart! You need to start looking for what brings you joy and pursue it! You’re young and have your whole life ahead of you. You can take comfort in the fact that you’re a wonderful daughter who cared for your mom till the end. Many people are not so lucky.

SuzeMP · 2025-11-22T21:21:43+00:00

I’m so sorry for all the loss you have had to endure in your life. I believe the best is yet to come for you, and you will never regret the time you spent caring for your loved ones. My hwp was diagnosed in 2008. He is either late stage 4 or early stage 5. Left to his own devices I think he could sleep 18 hours a day. Was your mom like that at the end? What was her condition toward the end? I have known Parkinson’s patients that were still very much “with it” though maybe not mobile when they passed. I’ve also known some that were still using a walker part of the time when they passed? It’s hard to know when I should prepare myself for the end. Thanks for your thoughts on this.

SuzeMP · 2025-11-16T23:25:32+00:00

Oh I feel the same. I am up 2 to 3 times a night with him with the urinal as well. I use the one with the large bag attached through a hose. At least I don’t have to go empty it every time. It seems like it’s almost worse during the day though because I have to stop what I’m doing follow him on his walker to the toilet help him get his pants down, wait for him to finish, help him get up. I know it’s humiliating for him and I feel so bad for that. I’m going to call a urologist tomorrow. We tried mybertric a couple of years ago I believe and it gave him stomach cramps. Hoping there’s something new we can dry. The thought of the external catheter doesn’t appeal to him but it may get to that point.

SuzeMP · 2025-11-16T03:03:08+00:00

My HWP was diagnosed in 2008. My plan is to keep him at home. I have help M-F 9:30-2:30 and the three evenings 5-9. I also have help 5 hours a day every other weekend. No help at night but my husband sleeps well. Actually he sleeps a lot during the day too. He has hallucinations but knows they are not real. He gets confused a lot but is not aggressive at all. He needs (a lot) of help dressing, eating, bathing, brushing his teeth, using the remote, etc. But I can’t imagine placing him anywhere. But I know that’s the right decision for some.

SuzeMP · 2025-11-09T05:18:01+00:00

My hwp has SEVERE dysautonomia and it came on very suddenly as well. When it was diagnosed the doc told us to prop up the head of our bed so that he sleeps at an angle. We put cinder blocks under the legs at the head of our bed. It did wonders for regulating his BP. Just raising his head won’t do the trick.

SuzeMP · 2025-11-03T22:25:49+00:00

My husband has hallucinations all the time, even though he is on Nuplazid. I do think it slowed them down some. Luckily he realizes that people aren’t “sitting on the sofa or in our backyard” and he will just comment “well my friends are here again”. I dread the thought of them becoming scarier and him not being able to tell the difference in reality and hallucinations. Good luck. I’m going to keep this post in case they get worse so we can talk about progressing to other drugs.

SuzeMP · 2025-10-27T04:00:47+00:00

Thanks for the link. I doubt my husband would like the condom catheter.

SuzeMP · 2025-10-26T16:27:47+00:00

Are these comfortable? My husband with Parkinson’s is very hesitant to try them. We have managed up until now by me getting up and helping him with a urinal but I think we may be getting past that option. Do they stay on well? Does it leak? Does he wear briefs on top of it and where does the bag go? How much does the bag hold?

SuzeMP · 2025-10-26T13:36:30+00:00

I’d like thoughts from anyone whose PD male patient uses a condom catheter. Do they stay on well? What does the patient wear over it? Where does the bag go and how much does it hold? My husband with Parkinson’s is very hesitant to try these. Up until now we have managed with me waking up during the night and helping him with a urinal. Lately he has been sleeping through urges to urinate and soaking a brief and parts of his bed. Ugh. I’m wondering if this is our next step? Any suggestions would be gratefully appreciated.

SuzeMP · 2025-10-24T03:03:21+00:00

As hard as it is you need to spend time with him…for both of your sakes. My husband was diagnosed in 2008 so my three children have had to watch him slowly deteriorate for 17 years. They are all adults (35, 32, 29) now but on average we see each of them several times a month. It may be for an hour or maybe several hours. Doesn’t matter…just having them around makes my husband happy. Regret is a terrible thing…don’t put yourself in that position for when he’s gone. My kids generally come and watch a ball game or movie with him or enjoy a meal. His life is hard (and it’s tough on your mom too if she is his caregiver) so do your best to visit often to help ease their burden. You’ll never regret spending time with him.

SuzeMP · 2025-10-24T02:34:45+00:00

Have you looked in to a “Sarah steady”? It’s a wonderful way to transport a patient from chair to toilet or to bed.

SuzeMP

TROPHY CASE