My mom is in rehab following complications from spinal surgery which left her unable to swallow. She's 78, has a PEG tube and the goal is for her to get off the continuous feed, on bolus and strong enough to come home while this (hopefully) resolves.
The issue is she is terrified of being here. She had a bad experience with a menacing CNA at the hospital. She was afraid to be alkne there after that and we stayed with her 24/7 (the hospital allowed it due to this incident) I feel like that gave her some kind of ptsd. That plus the trauma from this unexpected outcome (the cure being worse than the disease) has left her to what I feel is close to a nervous breakdown at times. The anger and grief over that. During the day with therapies now started she does ok. But when my dad leaves at night, she cries, she says she can't tolerate it, she's terrified (her words). She calls me first thing in the morning to make sure I'm coming (I don't mind at all) and when I get here she is in extreme distress. It takes a bit but she calms down. She is not blaming anyone or saying we "put" her anywhere.
She starts talking about her mom who died when my mom was 12. She doesn't do well on Ativan or Trazadone. Those seem to agitate her even more. Is this "hospital delirium"? I feel she is still processing all that has happened. There are no issues cognitively, but I've never seen her like this even when she had chemo for lung cancer, I mean this woman has been through some things including a bout with "polymyalgia".
Not having control over your body, getting comfortable on your own, I imagine this is all contributing. I just hope she can make it through this without "snapping" I'm afraid of getting a call from the rehab saying they can't handle her. We haven't had the first care plan meeting yet at which I will bring this up.
Thoughts, tips, similar experiences to be shared are welcome. Thinking of everyone today and hoping you have a moment of peace.
Here she doesn't even want to walk the hall because she said doesn't want to see/know where she is (it's not a bad place either). The whole point of being here was to get her strong and bc she had just started the tube feeding, but her mind is bending. She is not the type of person to join "activities" and be called sweetie or a cutie patootie (infantalizing language ugh).
She got here Thursday night and we have not had a conversation about her care plan yet with anyone. The social worker said we should already have been getting education and training on the PEG but no one has approached us. If I hadn't asked to talk to her this morning I don't know that we would have.
Anyway we've started the process of getting a discharge plan in place, I only hope she can hold out for a few more days while we get it all organized safely. Trying not to act purely out of emotion. The plan was to get her strong here and get swallowing therapy, but it's too little and doesn't offset the mental stress.
I got here at 8. Its 11:30. So far she's had literally 5 minutes of swallowing ice chips with the speech path. Med distribution and changing her wound bandage. I'll stay till my dad gets here at 4 or 4:30. She'll have one pt and one ot session during that time.
Then it's a long a** night filled with terror for her and my dad ready to collapse by the time he leaves racked with guilt . She can have that time at home where she is not frightened and afraid..
Thank you for your input. Appreciate it.
Casole......you may want to ask about this very thing; if the SNF will care for your mom's 'wound' directly or if Medicare will send a Home Health Wound-Care nurse in to look after it directly.
Coming home in THIS condition with a feeding tube is not manageable. She needs to stay in rehab and recover and regain her strength and start eating without a PEG tube, while being monitored to see if she aspirates her food. It would be nice if this was a simple UTI which is always everyone's first diagnosis here. Definitely get her urine checked to rule that out.....but neither of my parents had UTIs going on while they were wigging out in rehab. The right meds will help, the wrong ones will make matters worse. Trazadone in a large dose is used as an anti depressant and in a small dose, as a sleep aid. Mom needs calming meds to get her thru this crippling anxiety she's suffering. Speak to her doctor.....this is not the first time he's seen a situation like this, trust me.
Best of luck to you both.
Her primary doc is in over his head I believe. I will ask if there is a hospitalist at the rehab who can help with this issue. Thank you all.
To make things worse she's developed a wound on her tailbone... My heart is like shattering into a million pieces.
See if Mom can have in home therapy.
I remember when I was in the hospital having had a new baby and I had the meanest nurse. She'd walk in the room and I'd start crying. My DR finally got her removed from the OB floor--gosh, like we weren't all hormonal basket cases!
A good nurse is amazing. A bad one can make a hospital stay misery. If this CNA is still around, simply request she/he not be a CG for mom.
And there are MANY different calming meds. Trazadone tends to knock you out, and Ativan is just one of MANY tranquilizers.
Be mom's advocate, as much as you can (sounds like you already are!!) and hopefully she will heal up enough to come home.
I don't know ANYBODY (except my mom) who LIKES to be in the hospital!
We all need to remember that the HOSPITAL and the personnel work for US and expect decent and compassionate treatment.