getting better

I'm getting better, my mother is getting better and one day I look forward to feeling less stressed and more rested. I'm still spending most waking hours with her, but a little less each day as she becomes more able to do things for herself. Mostly, I want to be available so she doesn't do things that she shouldn't. It's easy to over-extend oneself in this situation. You think, hey, I can put my pants on like I used to...only you can't and you fall down. Or you try to carry a glass of water while relying on a walker at the same time. But she's doing well and I have no doubt that in the near future she will be as independent as ever. Her mind is good. Still some memory problems, but nothing major.

Today I went out with the family for a quick lunch and a shopping trip to Target. It was overwhelming with too many choices, and people and stuff stuff stuff. I got a few things, but gave up on trying to find exactly what I was looking for. Tomorrow I go to the grocery store!

My sister-in-law will be doing all of our Christmas Eve dinner. All of it. It's a gift to us and it's a great idea. So, I only have to worry about the Christmas Day dinner with the in-laws. I can handle it. I'm past, way past, being too invested in anything, so the pressure is off. Merry Christmas.

a week's difference

So, Mom is better. Not altogether back with it, but much better. She is talking more normally but weakley, she stands with assistance, she has just gotten to the point of being able to slowly feed herself, she is able to follow conversations a little better BUT she is still somewhat delusional, easily confused, unable to process, and a little more wearing on the nerves. At times she's a little giddy. She sounds like she's making really good sense, but then you realise she's making up what she doesn't know. She doesn't ever know the day or date. She thinks there are geese outside her hospital door and she wants me to catch one for her to cook for Christmas. If she were thinking logically she would conclude that, 'hey, maybe it doesn't make sense that geese would be running around a hospital hallway.' If she hears someone laugh in the hallway, she says it must be because a goose pooped on them. She insists that a few nights ago she went out the door to a table and chairs and sat for hours. Nevermind that at that point she couldn't even sit without being held up, she doesn't have a door that leads to the outside, and the only window just looks out onto the roof below. She insisted that I look out of the window at the table and chair that don't exist except in her mind. When I dutifully looked, told her that they were not there, she said someone must have stolen them.

The other night she managed to get her hospital gown off and throw it on the floor. I was tired, it was nearly 10pm, I covered her up and told the nurse on my way out that she was naked. I couldn't reason or wrestle with her any more that day. The next morning she was still naked. I got one of her pj tops from home and she put it on and seemed happier. I think it was partly a control issue which I understand from someone who hasn't had control of one single bodily function in 5 weeks, and it was partly the crazies and a sudden obsession with how much material was in one of the hospital gowns. She threw her sheets and pillows into the floor also, and refused a blanket. So, I took fleece throws from her house to her. She is sleeping under those. Tonight we managed to get a full set of pj's on her. The only other area that she can really control is her eating. She won't eat the hospital food or food that I take her. She wants her own cooking. I understand that. I really do. But it is like having a 3 year old with Alzheimers...part opp defiant, and part not thinking too well.

Today I was worn out. Yesterday too, come to think of it. But, there is an end in sight. The doctor said yesterday that he can envision her discharge after this weekend. I couldn't believe it. This has been going on so long it just seemed like it would continue forever. My life would consist of work and hospital. But, now I have hope that things will normalize at some point in the future. It sounds silly I know, but I hadn't really gotten my mind around the possibility that this wouldn't continue for the rest of my natural life. I think I'm really really tired and I'll feel better when I can relax a bit. And, I'm really grateful that mom is better.

things are kind of looking up

Here's a picture of my Mom. She's been in the hospital now for 30 days, 18 of those spent in ICU. She's still in ICU, but word from the nurse is that she will get sprung tomorrow to a regular room. Physically, she is doing well. She has been able to come off the ventilator, her breathing is good, her innerds are all working and she seems to be rallying. Her mind left her, though, some time back. I know exactly when it happened. I have been at the hospital no less than twice a day, and for many days, all day, since she enrolled there. She was initially always responsive to me. Always. Then one day, she wasn't. It happened a week ago last Saturday. It was a marked change. She no longer squeezed my hand, she didn't open her eyes much, and when she did it was with a very unfocused, fleeting gaze. I was a bit worried that she'd had a stroke or something. I kept asking the nurses if she was responding to them. She wasn't. She seemed to sleep more.

So, as she began to show physical signs of improvement, she was less aware, less engaged, less responsive to any stimulation. Then, finally this past Saturday, she was successfully extubated (off the vent) and breathing on her own. The diprivan she had been getting for the past 17 days to keep her comfortable and sedated, was discontinued to make sure she was awake enough to breathe and respond. When I walked in the room a few hours later during visiting time, she brightened up and said, "You wouldn't believe what these people have done to me!" and that was the last coherent thing I heard from her. I tried to explain, as had the nurse, that she was in the ICU and had been there for quite awhile and that it was now December. She was unable to sustain attention to the shortest of explanations. She was gone baby gone. So, things got worse. She became agitated, tried to break the finger of a nurse, pinched another nurse (it WAS a cute male nurse), and spent much of her time moaning and writhing in the bed. Only restraints on her arms kept her from doing more damage. She required more sedation. This morning, when I called from work, the day nurse said that they had called in a neurologist to assess her to see if she'd had a stroke. I was pretty doggone sure it wasn't a stroke. This was ICU-crazy, dementia, delirium.

So the neurologist, a handsome laid back kind of guy, ordered an EEG and CT scan today. When I went in this evening, he told me that she had not had a stroke, and this was stress. I told him I agreed with his diagnosis. They had given her Haldol at my urging earlier today, and she had become a bit more lucid, but developed restlessness. She was actually much better with me today. She was able to pay attention but she said very little. Her speech is all run together, quiet, and sounds like she's had a stroke or a hearing loss. She nodded her head most of the time when I asked her a question. She rolled her eyes, made good eye contact, and attempted a couple of smiles at my lame jokes. I closed the sliding door to block out some of the ICU noise, closed the curtains to some of the stimulation, and talked quietly to her about everyday things, grandchildren, weather, meals I cooked over the weekend. I think it helped. The EPS was the most bothersome thing. Just before I left, the nurse gave her some paid meds and she settled down. I had unstrapped one of her hands, and I left it unstrapped. She was able to lie on her side, and at least that gave her some control where she hasn't had any at all over her body for the past month.

So, the good news, is she gets to go to a regular hospital room tomorrow. I'm going to take off from work and spend the day with her, and the night too, if she needs it, and see if I can't get a little more normalcy in her life.

This ICU delirium occurs in up to 80% of intubated ICU patients. Most of the time it's a quiet, withdrawn type of delirium but sometimes it's this more agitated or mixed state. It usually goes away when the patient gets out of ICU and most return to normal functioning. It's under-recognized and not always preventable when it's a choice between saving a life or having a crazy person emerge. Hopefully, we are coming to the end of this saga.

November and now December

I am still spending time at the hospital, but not nearly as much as I was. I went back to work this week. It's been good for my mental health, I think, but I have less of a feel for what's going on at the hospital, and that raises my anxiety.

My mother is still on a ventilator, still heavily sedated but seems to be very slowly improving medically. My current worries are: a) they won't be able to get her off the vent tomorrow and she'll have to have a trach, b) that something has happened to her brain or cns and herself (consciousness) isn't going to return, c) that she'll be furious about all of this and will never forgive us.

Actually, it's b that's worried me for the past 24 hours or so. Up until yesterday she was still responsive and able to nod her head, squeeze my hand, and respond to verbal commands from the nurses. I see her only two or three times a day, so my gauge is maybe not very accurate. On Sunday she was asleep each time I saw her. On Monday, she was awake and squeezed my hand and looked intently but didn't really respond like she had in the past, ie, she didn't nod or shake her head when asked a question. It was like she didn't hear me. Today she had her eyes closed, did not respond to my voice or touch and pretty much seemed unconscious. A nurse explained that they had been messing with her and she was worn out but I really want to know if she's still in there. Through all the days and weeks now in the hospital I have dwelled on the possibility of her death and even planned her funeral on a few low days, I have been relieved and joyous at her small steps of improvement, but I never really thought about what happens if she isn't there...mentally gone, unable to recover and care for herself again. She looks better physically (if you ignore the tube in her mouth, the one in her nose, the various IV's in her neck and arms, the tape wrapped all the way around her head, the strip taped to her forehead, not to mention the Foley catheter and wrist restraints) and that makes her lack of response harder to imagine. But not so hard that I haven't worried about it all day. Like most worries in my life, I just want to know. I want an answer. I want to deal with it, make a plan, get it resolved, fixed. I'm tired of patience and I'm tired of hospitals. I'm tired of the waiting room (today I was treated to a man explaining to someone that if he went to a certain someone's house he could be "sent away again for a minimum of 12 years on federal charges." Drugs, I'm thinking...and he went on and on about "Darlene's blood sugar was over 700..." ) but mostly, I guess I'm just tired. And I miss my mother and I want her to wake up and act normal and be healthy and go home where she belongs.