My brain is tired

White Crane

DH woke up last Thursday morning quite ill with diarrhea and vomiting.  Each time left him weak and shaky.  I helped him back to bed and tried to calm him and reassure him but each time it happened, he said he needed to be in the hospital.  I thought he had stomach flu like I had a few months ago.  Then I happened to pat his abdomen and he swatted my hand away!  I touched it again and the same thing happened.  I asked if he was in pain and he said no he just didn't feel good.  Then he said he didn't know.  He finally said it hurt and he was dying.  After calling his Dr. office, they advised to go to the ER.

It took me quite a while to get him dressed and out to the car.  At the ER, he said he felt fine and just wanted to go home.  He said he didn't hurt.  When the Dr. finally came in and pressed on abdomen, it was quite clear he was in pain.  A CT scan revealed his appendix was swollen and contained a stone.  Next we talked to the surgeon.  This whole time, DH was upset and saying over and over he wanted to go home.  His eyes were rather wild and I know he was in a lot of pain but would not or could not verbalize it.  My attempts to calm him didn't help at all and I felt so helpless and even angry at times.  With the Covid rules, no one else could be in the room with us so it was me and him for hours while we waited and waited for and opening in the surgery schedule. 

One thing that I did really helped.  I keep a copy of DH DPOA in my purse and so I was able to sign all the papers for him and make all the decisions about the surgery.

He finally had surgery about 4:00 PM.  The anesthesiologist came and talked to me ahead of time and I was very pleased to find out they use a special anesthesia protocol for dementia patients.  It doesn't sedate them as deeply and they wake up quicker.  She said they would also be monitoring his brain activity during surgery to make sure and not over sedate him.

After discussing it with the surgeon, I decided it best for him to spend the night in the hospital.  And I stayed with him.  What a night!  He kept both me and the nurses busy all night long!  He was delusional and scared and couldn't understand what was happening to him.  At one point, he pulled out his IV.  He wasn't able to tell them if he was in a lot of pain.  I finally read his body language and groaning and asked them to give him something for pain.  Even that didn't help him go to sleep.  We were up all night long and I was totally exhausted by morning.  So was he.

We got home around noon on Friday and I had a hard time getting him from the car to the house. I finally got him into his recliner but he just kept asking what happened instead of falling asleep.  I left the room one time and he dialed 911!  I told them he did it by accident. He is still confused and in pain from the incisions and most of the time doesn't know what happened to him.  I finally got some sleep but my brain just feels so tired it's hard to even think.  I have answered him at least a hundred times about why he doesn't feel good and told him he had surgery.  Time after time after time and he still can't remember.  It would feel so good to just leave for awhile and go sit under a tree in the park and cry and sleep. 

LadyTexan

Oh dear White Crane, that is brutal. I am so sorry. If I could, I would definitely step in to give you a break. You deserve a break and a trophy for what you are going through. You are a care giving hero.

I am with you in spirit and sending cyberhugs. 

God bless you.

White Crane

Thank you Lady Texan.  I think of you as a hero. You’ve been through so much. Thank you for the cyber hug. Sending one right back. God bless you!

M1

White Crane, I would suggest maybe calling the discharge planner from the hospital and see if they can get you some home health care for a bit--some hands to help so you can get some rest.  Can't hurt to try....

Mint

(((White Crane))). Hope things level out where you can get some needed rest.

White Crane

Thank you, M1. Before we left the hospital, the physical therapist, the occupational therapist, and the discharge planner came in and evaluated  him.  He was so busy  putting on a show for them they did not see how  incapacitated he really was. And soon as they left the room, he reverted back to his delusional and confused self.  They did say they did not see the need for a home health.  He can put on a good front.

White Crane

Thank you, Sayra.

Beachfan

White Crane,

I am so sorry you had to go through this, but I admire your ability to handle the situation as well as you did.  This is one of my greatest fears.  DH is, and always has been, incredibly physically healthy.  (He retired from 44 years of teaching and coaching with two full years of sick leave; I don't recall a day that he didn't report to work. And TMI, but I have never even known of  him to vomit!)  I don't know what I'd do in your situation.  He cannot process any directions, I know he would resist any kind of hands on care required to treat him; he would not cooperate and maybe become combative.  I spoke to our PCP about this and he said, "Don't worry; we will take care of it if something happens."  Easy for him to say and he has since retired!  So I watch him like a hawk to prevent any mishaps and hope for the best.  Every day I pray "Please keep DH safe and dignified."  It's all I can do for now.  I hope you are able to get some rest and that your DH recovers soon.  I am growing weary of playing Guardian Angel.  

Paris20

White Crane, if there were a caregiver award, I’d nominate you. Reading your story, I knew that if my husband experienced the same emergency, he’d be at least as bad, probably worse. My husband has fallen several times. He immediately forgets why he hurts or has a bandaid on his elbow. He complains for days, I have to repeat the origins of his injuries, and it starts again within minutes. It’s Groundhog Day on steroids.

Each day he tells me he doesn’t feel well but when I ask what’s bothering him, he cannot tell me. Sometimes I go through a list of possibilities until he identifies the problem. Other times I can figure out what’s happening. In any case, the repetition is maddening and even a physical therapist was unable to help my husband from avoiding falls. It’s nerve wracking. White Crane, I hope your husband recovers well…and soon…for your sake as well as his.

Buggsroo

White crane,

You are amazing. I can’t imagine going through what you went through and remaining sane. 

Yesterday I hit the wall, kept thinking of running away. Every time my husband spoke to me, I snapped. I feel like a crazed hamster on an exercise wheel. My husband likes to crank up the heat to 84 degrees and higher, today he asked me why I was naked. I told him that it was too frigging hot to have clothing on. I have fans all over the house. I duct taped the register in the basement so I don’t suffocate from heat exhaustion. 

I cycle from crying, to anger, yes feeling sorry for myself and going into a witness protection program. My poor mother listens to my outpourings with kindness. 

I try not to think of how many years I have left of this or I would expire from angst. I know the feeling of not having enough sleep, feeling desperate and wild eyed. I know about the putting on a show thing, my husband does it too. 

abc123

Dear White Crane, I’m so sorry about this terrible situation you had to deal with. I hope he has a very speedy recovery and you are both able to rest. I wish you the best. I hate this disease.

Pat6177

White crane, what a roller coaster ride you’ve been on! I’m sorry it was so difficult. I don’t blame you for wanting to find a bit of peace and quiet. I hope your DH recovers quickly and without any issues. Just a heads up. The anesthesia and the pain medication can cause severe constipation - at least it did for my DH after he had hernia repair surgery a few years ago. Gas pains and constipation will cause additional discomfort and he probably won’t be able to tell you based on what you’ve said. 

And thank you for posting all that happened. I learn so much from this forum and will hopefully remember it when I need it. I will email myself an electronic copy of his medical POA so I’ll be as prepared as you. And it’s good to know about the dementia level anesthesia. Thank you for sharing.

Take care and I hope you’ll be able to get some rest!

ElaineD

Dear White Crane,

You did a marvelous job caring for your DH in a very difficult situation...that just went on and on and on.

Without your care he would have died, White Crane.

Is there anyone, any way you can get time to yourself?  You need it.

Sending you hugs.

Elaine