Update and question on mom's state of mind after 4 months in home hospice.
As many of you know mom has been in hospice care in her home since late August. She seemed to be at death's door the first 2 weeks and is now much better.
I had a really tough last couple of days, power outage, couldn't get my own meds refilled, still doing everything for mom, plus trying to plan some semblance of a Christmas for my own kids (oh, and working M-F).
I stopped by mom's with meds & groceries last evening, after working all day, banking, shopping, etc. She was in a deep sleep and I couldn't wake her up with just my voice, so I left her alone and headed home because I was exhausted.
I ended up getting a text later from mom including "all I could do was cry" because I didn't wake her up while I was there. I was there ALL week-end, and it had been a day since I saw her. I texted back saying I'm not taking the bait on the guilt trip, and I had made calls for her, gotten her meds, groceries, sent out bills, went to the bank and even did online shopping for her in the day I didn't see her.
Usually when I put my foot down she backs down, but not this time. She doubled down on "I didn't choose to be sick like this and I feel guilty to the core that you have to do everything for me", which I promise is just a way of trying to make me feel MORE guilty.
Here's the question. I asked the hospice nurses if she is getting dementia. They say she has severe hypoxia, which is affecting her brain function, but not dementia. I think she's also being affected by being in rehab (read NH) for almost 2 months before coming home, and now being in bed and not even getting into a wheelchair to leave the room in 4 months. I think she is becoming confused and disoriented.
Anyway, I was just reading others' questions. Am I talking to the disease? Someone I deeply respect on here was saying you can't reason or teach someone who has dementia. So am I wasting my time explaining that I was there all weekend, etc., when maybe she is not really cognizant? Or do you think she's manipulating me as she has done historically?
Your family also needs to understand that Christmas may not be the same this year. I agree, you want it as normal as can be but...there is a family member on Hospice. There needs to be some empathy there.
A fellow Church Member was in a NH. She was the sweetest lady and well loved. Mom was in the rehab section of the NH so when I'd leave Mom, I would go say hi to this lady. One day she was sleeping so I did not bother her. I told another member this and was told "she wants to be woken up, she says she can sleep anytime." So same with your Mom, she can sleep anytime.
I agree about it normally being right to wake her up. But she was in a deep sleep and I called to her loudly several times. Waking her up would have led to the "don't leave" or "just one more thing" routine, in which it usually takes me an hour to leave under any circumstances (even after being there 30 hours). I just didn't have it in me. You're right. She just wants me there. Anything else is out of her worldview. This is the hardest part of caregiving for me.
It was hard at first but became easier each time. He was well cared for, so no need for me to be retained or feel bad because he wanted me there. Same for you, you are not doing anything wrong by having boundaries.
You could insist on a bunch of tests, but unless someone can point out some upsides to testing, you might as well skip it. You've got what you've got. You've had a particularly difficult time lately, you can't expect much better from mom, she's on hospice, and I think you should take a break from the constant caring, supplying, delivering, talking to, explaining, sympathizing, worry, triggering, listening, and trying to scope out what's really going on with mom.
Would it be so awful if you just didn't call her or go there for a few days? Is that possible?
Good luck, and I hope you have a decent Christmas with your family, who must be as exhausted as you are with all this.
Question. You don't live with mom. You said "hospice nurses". Does your mom have actual hospice nurses with her provided by hospice?
Because I have never heard of such a think now. Usually it is an RN visit once a week and an aid for a bath twice a week.
How does hospice work for your Mom. I mean what do they provide?
Oh, my heart aches for you! The holidays throw so much at us (well, don't we all kind of do it to ourselves???) and then add to that a cranky, sick LO. It's too much.
Is your mom on oxygen? That would help, one thinks, with the hypoxia. When my MIL gets really out of it, my DH says his go-to is to check her Osats and usually ups the oxygen a little. I admit I am confused by how much that would be, but he says it helps her. Maybe it's really helping her or maybe it's a placebo effect, IDK.
No dx of dementia? SO hard when our LO's have always been 'the way they are' and you cannot tell if they are declining into dementia, or just being them.
I have no great advice. I can't handle being outside the CG group for my MIL and it's beyond frustrating to sit and watch the slow sinking of everyone involved.
I wish you strength and courage to do what has to be done. I know I am asking my girls to step up Christmas this year--I just do not have it in me. I'm already one small bout of crying this am and it's only 11 am. If I can get through Christmas day without a major meltdown, I will be proud.
(and yes, we are in our 3rd year of 'mom's last Christmas' and next year we'll be in the 4th.)
I won't even say Happy Holidays--I will just wish you courage and strength. And a few moments of joy.
After I got word that mom had settled down I sent her an unrelated text about a joint Christmas gift. No response. So we've gone from guilt trip, to anger, to silent treatment. This makes me think it's not organic. It's her manipulative personality, maybe on overdrive because of the hypoxia. And yes is is on O2, 4L baseline, which is very high.
I'd consider that she DOES suffer from dementia and chalk her behavior off to that. Dementia is just a word to describe cognitive impairment anyway, and your mom is DEFINITELY suffering from that!
I'd explain that I WAS there all weekend but don't expect her to calm down and be happy as a result, it's too late for that. If this were me, I'd get hospice to give her some (or more) Ativan or calming meds to reduce her general anxiety and bring her fear down a notch or two. At end of life, that's the goal: to keep the patient calm and relaxed. Not trying to drum up ways to guilt YOU into doing more for her than you already are.
Wishing you the best of luck with a difficult situation.
She also gets a CNA 2x/week for a bed bath, but mom will only allow the bath once a week at most. They were having a social worker and chaplain coming on alternate weeks, so mom had someone from hospice there 5 days a week (usually for an hour or less).
Now mom talked the social worker into coming once every 3 weeks, and doesn't usually answer the phone for the chaplain, but he stops in once in a while.
I was thinking the same thing you both said. Just cutting back to my shift(s) on the weekend and not even seeing her during the week. I had just cut back to Tuesdays and Thursdays over the last 2 weeks. The problem is she's taking her anger at me out on the semi-live in aid (who is a gem).
I put a call into the social worker to help me manage the situation. If we lose the aid, mom is probably going to end up in a NH, which despite everything, I was hoping to avoid. And it's her worst fear.
Edit: I did, one time, go 3 consecutive days without seeing her. The aid said she went into a full out crying meltdown, saying her family has "abandoned" her etc. It's ironic considering the second we got the semi-live in, my brother completely disappeared for 3 months. Didn't even stop by on Thanksgiving.
I, personally believe, that a manipulative parent will always try that tack first to make us feel bad, when that doesn't work, they go to anger. Because we all know as little children we didn't want our parents angry with us, what they forget is that we are no longer little children.
Lily, I would see her as little as possible if she can't be civil. Nobody asks to be sick but, people usually appreciate any help they get, they don't shoot arrows at your heart, like both our moms do/did.
There is NO EXCUSE FOR ABUSE, EVER! She knocks it off or she goes to a nursing home, again, her choice.
If mom has a history of manipulating you then I would say this is just mom being mom. I honestly dont know how you are humanly able to work full time, take care of your own family and your mother. The holidays just add to the stress and more work on top of your already over burdened day to day.
Dont forget what she did on thanksgiving weekend so you don't have a repeat for Christmas with her generously giving extra days off to her other care givers and forcing you to take over their jobs for Christmas. I was hoping you would have followed through with putting mom in respite over christmas. You really need a break.
I dont know how much longer moms money will last to pay for in home care but if it's a few months I would start having the conversation now about moving her back into a facility. It may be better to do it before she runs out of money completely because I dont think she will go willingly (could that be why you are hoping for a dementia diagnosis so you don't need her permission if you have to move her out of her house?)
The Aid's regular days off are Sunday and Monday. So I gave her Saturday off for the holiday and hired someone for Saturday day & night. I honestly don't know the first thing about setting up respite care, and she would have to be transported by ambulance, so this was easier. She doesn't know about it yet though. That will be the next meltdown.