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Hubby (FTD, mild cognitive, Lyme, autoimmune disease, heart valve disorder, seizure disorder, the list goes on) is in the hospital for pneumonia, sepsis, and hypoxia (covid negative). That was the ER diagnosis, but I think things will be refined a bit today. He will be there until Sunday.


I had a good talk with the Lord last night. "I cry buckets when I get rid of a vehicle [did that earlier this week, I loved my minivan but dad gave me mom's SUV which has a 130,000 less miles on it than my van] and yet my eyes are dry about him being in the hospital. Instead I am looking forward to some peace in my home for a few days, is that wrong?"


I slept well last night until his watch alarms started going off at 4:30. He was playing with his new watch and his old watch yesterday and I guess he managed to set alarms. I do feel peaceful in my house this morning but I know he is expecting me to be at the hospital at 8:00 (one visitor is allowed). The phone should ring soon with, "Why aren't you here?" I plan to be there by 10:00.


Taking in the medical poa today but we did discuss allowing short-term vent but no resuscitation last night.


So, not really a question here, just some rambling thoughts shared with folks who I know will understand.

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Hubby came home today. He was used to the extreme amount of attention he received on CCU. They put him on another floor last night and he said it was awful. What I realized when I got there was that it was awful because no one jumped to respond when he called. They took their time. More patients and less staff.

He came home, ate lunch, and fell soundly asleep until the phone rang at 5:00. It has been a rough night. Cardiologist appt is on Friday, an hour away in a town I am not familiar with. I hope he is stronger by Friday. It took over an hour to get him ready for bed because he cannot follow simple instructions. Tomorrow I need to reorganize his meds and he has to realize that he must allow me to fill his weekly boxes. The hospital sent a very nice chart to fill in so at least I don't need to make one myself.

My father gifted me my mom's vehicle and left the Delaware handicap hangtag in the glove compartment. It would really be nice to use it Friday but I'm not sure about the laws about using an out-of-state hangtag in PA. I might just take my chances.
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graygrammie, So glad your husband is improving . Also that he has a better attitude on what's going on or should happen. Positive results are always good. I agree with what others said regarding going to a rehab facility before home. After being in ICU my husband was put on a different floor because his kidney came alive again and no longer needed dialysis. Then after that, we looked for a rehab care facility where he went. One that was not far from home. I wish you and your hubby the best. :)
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Update -- Pneumonia is clearing up slowly, still on antibiotics. Time on bi-pap has been reduced. Lasix was stopped because of his creatinine number but resumed today. Doc says he will be there through Tuesday. I only visited for the morning today, had to be there at 8:00 to meet with the pulmonologist (who of course didn't show up until 9:30). PT was supposed to come in today, but they did not.

But I have to say that in the last 24 hours there has been a remarkable change in attitude from "I want to die, just let me die" to "I want to see my kids and grandkids again." He has refused heart valve replacement for quite a while and now wants to consult with his cardiologist about it. The hospitalist stressed to him that he has to get better before he can have surgery and that there may only be a small window of "better" before he ends up back in the hospital. His thinking actually seems clearer than it has been for quite a while.

Nothing has been said about not releasing him directly home.
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Do NOT allow discharge home. Have him go directly to long term rehab facility. Then when that finished, have them apply for long term...do NOT take him home as it would be an unsafe discharge. Please take my advice. Hugs 🤗
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Pneumonia and sepsis? He is being discharged from ICU directly home? That doesn't sound appropriate. I would think that some time in rehab is necessary to make sure he has the strength to return home.

It is normal for you to feel relief, he has quite a list of medical conditions. He is going to need more care than you can provide very soon, if that isn't the case now. Give rehab a chance to work with him to insure that he has the strength to be at home and not more than you will be able to manage.
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I pray that you took some time to rest today.

YOU matter.
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I don't feel he is at the point of needing to be placed somewhere. In fact, that looks to be a long way down the road at this point.

He was very eager today to leave the hospital because he feels better than he did yesterday. Xray shows his lungs are clearing, he is being weaned off the oxygen. The nurse pointed out that if he left without doctor approval, insurance wouldn't cover.

He jokes with all the staff and they think he is just so funny, not like the rest of the ICU patients who are so very ill. One nurse did tell him that if he didn't stop joking about certain things (day of the week, who is president, what did he eat most recently) they were going to have to have an evaluation done.

Every time I went to the bathroom today, I faced a sign that read: "Love should build you up, not tear you down." Truth.
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Ask your self what would happen to your husband if you became ill, disabled or died? My mother used to say that a caregiver often died before the patient from stress and overwork. The best way to take care of your husband is to first take care of yourself.
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You SHOULD feel relieved DH is in the hospital where he belongs, getting the medical help he needs. You shouldn't be crying! You should stay home, stay in bed, and tell DH you're not feeling well and will NOT BE IN TO VISIT him for the next couple of days. Why put yourself at risk by visiting the man you already live with 24/7 when he will be home on Sunday???? Rest up, turn the phone off, and check in with him 2x a day, that's it. Take this time for some well deserved R&R and don't waste one second feeling guilty, either. Who's gonna take care of YOU when you break down from all of this?

Barb is right. Talk to the social worker about placing DH now before YOU wind up hospitalized!!!
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This is such a difficult transition and I 100% understand how you feel.

What you WANT is four DH to be himself again, hale and hearty and happy at home with you.

And you can't have that.

My DH has been in the hospital for so many very serious things and he is a terrible patient---when they'd release him, I's inevitable end up sobbing in the car in the parking lot because I was NEVER ready to bring him home and play maid/nurse/chauffeur/short order cook for him.

He's always rehabbed, but each health issue takes him down a little bit more. He's aged 25 years in the past 10.

My heart is with you. To have such mixed emotions---I hope you get some help as you navigate this new 'norm'. (Hopefully starting without the 4:30 am wakeup call--man, how I hated those!)
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Caregiving and caring are two different things.

Feel guilty when caring is too much to take, but certainly not when caregiving becomes too much.
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GG, how is it going today?
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Whoever invented guilt, anyway? It's a waste of time. Put yourself on the front burner. Don't let anyone pull you down with them. Get therapy if you have to.
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I agree with BarbBrooklyn. Your husband is a very sick man and that's unfortunate. It's taken a huge toll on your. His needs are only going to increase especially after having pneumonia and sepsis. Please take this opportunity to work with the hospital case manager to get him into longterm care. You need time and space to help you recover from burnout. Things do not have to go back to the way they were. You have choices. You matter. Do you have a trusted friend you can discuss this with to help you get through making this difficult decision?
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What you’re feeling or not feeling is perfectly understandable. I’m glad you’re getting a few days of respite and hope you won’t spend much of it hanging out at the hospital. It’s a valid choice not to answer hubby’s calls, the hospital will get in touch if anything is really needed. And please consider that your body and mind may be telling you that it’s become too much. Your husband is depending on you to care for him, and that’s possible for him in another setting, one where he gets the level of care he needs and that protects your own health
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You've run out of tears. You are too exhausted to cry. Please tend to yourself so you can be renewed in mind, body and spirit. May you gain peace in your heart.

(p.s. I loved my minivan, too. I called it the Clampett-mobile. My husband and sons thought I was crazy ;-)
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GG, along with your husband's diagnoses, I think you need to remind yourself that he is (whether due to dementia or for other reasons) demanding, controlling and abusive (at times physically).

This is an opportunity for you to get long term placement for him. Perhaps the fact that you are not in tears is that your heart, mind and soul all realize that you are at the point of his needing a much higher level of care than can be provided at home.

Please get in touch with the hospital social worker and be honest about how his illness is affecting you and your health. "I can no longer care for him safely at home" should be your mantra. Don't accept "no" for an answer.

He is going to be up the creek without a paddle if you are not there to be his advocate.
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When I hit the wall caring for my mother I was able to get her into a respite bed for a break, I knew it was time to make that permanent when I realized how much I was dreading her coming home again. Don't beat yourself up for the way you feel, caregiving is HARD both physically and emotionally.
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