Here, Dingo; I’m never too busy for chocolate milk…
I may well be in full-blown crisis mode. Things here are not good, and I’m not sure what – if anything – I can do to make it better.
Mom’s spirits are way down. She told to me in tears yesterday that she feels like the people around her are encouraging her to die and she’s finding it hard to think of reasons to keep living. Specifically, she noted my eagerness to put all of her worldly affairs in order; my efficiency, it seems, is making her feel rushed. She also used the word “inconvenience” when referring to the people who are caring for her (which, it should be noted, consists primarily of me).
I’m trying desperately to reconcile my feelings of anger right now. I have made herculean efforts to hide the level of inconvenience (and fear) from her. Meadmaker came by the other day and saw that I was on the edge; he encouraged me to come to the kitchen so I could talk it over and have a good cry. I wouldn’t do that; she would have known that I was upset and I didn’t want her to feel bad about it. I’m not telling her about how stressed I am about my kid-care (never mind the fact that I NEED the kid care). I haven’t told her about the strain this is putting on my children, my husband, and my friends. I didn’t tell her that I missed my anniversary on Monday. I haven’t talked about how scared I am that she’s going to outlive my capacity to care for her.
Things are particularly tense this morning. It seems that she needed to be moved at about 4:30 this morning. She called Bill, but he had left his cell phone on the stairs. Since I wasn’t sleeping, I heard it, and I wondered why he hadn’t come down (I couldn’t tell where the phone was – for all I knew, it was in his room). Then, I heard her talking, but I hadn’t heard Bill come downstairs, so I got up and headed down in time to hear her yelling “HELP!” When I got to the living room, I asked her why she hadn’t called me, and she insisted (angrily) that she did. Showing her the recent calls list on my phone was not enough to convince her that the call didn’t go through (I suspect she called Samantha’s cell by accident; our real names are pretty similar and she’s done that before). She genuinely thought, and perhaps still thinks – that I ignored her call (the talking I heard was her calling the neighbor to come and help her).
It kills me that she thinks she had a house full of people who weren’t willing to help her.
I’m starting to crack.
It is not surprising that a person in a condition of helplessness gets, for want of a better term, paranoid. At least that’s my experience. Is that going to make you feel any better? I really don’t think so.
Ditto her feelings that everybody wants her to pack it in for their convenience.
I wish there were something I could do to help you.
Do you think it was an accident that Bill separated himself from his phone? (Not a loaded question, just a question).
You poor thing. This is a horrible situation all around.
Can you find a way to take a break?
Gerry, I understand all her feelings, I really do, and I’m trying to detach myself from them, bu that’s a tiny bit more than I’m capable of right now.
Do I think it was an accident? I don’t know how to answer that. I do feel that Bill takes a lot of advantage of my being here, but I’m not convinced that he’s doing so willfully.
Meno, I’m formulating another post about how I feel that I’m in an impossible situation; I want to be able to give myself a break, but I don’t want her to feel that I’m leaving her to other people to care for her. I WANT to be away, but I really DON’T want to, too, you know?
Sweetie. You. Need. A. Break.
Maybe I am delusional, but I think your Mom would understand that you need to spend some time with your family and you need a chance to recharge so that the time you do spend caring for her is the best it can possibly be.
I know cues are telling you otherwise, but it might be time to treat this as a marathon rather than a sprint. If only to give your Mom the feeling that she has as much time as she needs.
Regardless, I love you.
You need to get the hell out. Take a break. Make Bill do some care-taking. If you are not there, he will be forced to step in and care for his partner. While I understand your pull to be there, to make you mother comfortable and safe, you can not do this if you are not well, both physically and mentally. spend sometime with the girls and the husband. Recharge your batteries or you too will burn out.
I’m with Anonymous. I can’t believe your mom is going to be unreasonable about you needing to take a break.
I am so sorry to hear this. Maybe she is in one of the last stages of grief or close to the last stage. Your Mother sounds like she is depressed.
1. Denial, 2. Bargaining, 3. Depression, 4. Anger, and 5. Acceptance
Please do not let her get to you. You are a remarkable daughter and you have done all you can. I hope the son steps up to the plate to give you some relief.
Please don’t ignore your kids and husband. You have to stay strong for them. They need you as well.
You do have a right to step back and have a breather. It is OK to think of yourself.
Just know that we all do our best in the worst of times. That is all we can do. Don’t be too hard on yourself
Sorry that your Mom is in such a place, and that her process is taking you along for the unending roller coaster ride.
Can you talk with the Hospice nurse to find out if there is a bed at a hospice home available for Mom? Mom is needing more support in so many ways than you alone can provide. It doesn’t apperar that she’s in any hurry to check out of this life and a hospice home can provide the care, nursing, attention and interaction that your Mom requires. All of that and they’ll take care of you some too.
You can’t tend to your world if your own well is empty. It might take more than cookies and chocolate milk to refresh and refill your own soul. Mom can’t live at home on her own anymore and Bill is of no help at all. See if Hospice has a residential care home near you.
Thanks for considering it anyway, wish I could do more than stand by and wish you well.
I am afraid Laurie is right. If this does end up going on much longer, your cracks will inhibit your ability to care for her. Is hospice even a possibility? If so, get on the phone. You all need this option.
Have you checked with your local hospice? They often can refer you to good people for respite care to come help out to get you the breaks you need.
And it sounds like you really need to take a break, even if just for a day or so. Time for some perspective…
Namaste…
Mmmm….delish.
I know that you know that you will eventually realize that your mom’s feelings are coming from a place of pain and helplessness and have nothing to do with the quantity and quality of care she’s receiving from you. You are just stretched so tight right now that you can’t see it.
Bill may not be doing it willfully but he’s taking advantage of you by not being mindful. His forgetfulness or inattention does not come from not caring but from not wanting to deal. Thus, it all rests on your shoulders.
I know the thought of hospice care breaks your heart because you want to be the one to care for her, but you can’t do everything. You just can’t. But maybe if you can’t bring yourself to hospice care, you make Bill step up to the plate. Go on a trip where you can be reached in an emergency (and home lickety-split) but where he won’t be able to depend on you to do everything. If you take a break, spend time with your family, your mom will see that she is not an inconvenience and that you are not rushing her along (which we know you are not) so that you can get back to your “real” life.
I don’t know how to say this without it coming across as bitchy or know it all because cybercommunication often gets in the way of delicately putting things but, do you think that you are having a harder time stepping back and taking a break than she would be with you actually stepping back and taking that break?
Love you.
Ooops. Anonymous is me. Just so you know. Not sure why that happened.
Seriously, everyone who says you need a break is not out of their tree. It’s a common ailment with people doing primary care for loved ones, this feeling unentitled to a break or unable to take one, there are studies and articles if you need to google up on it a little to give yourself the fuel to take it.
Your mom is a smart and intuitive woman, even when you don’t tell her things she knows things because she knows you and, even now, she knows herself and her surroundings on an emotional level. It will be a great service to you, to her and, no doubt, to your family if you can get a day off here and there. A few weeks ago other people were being trained for this, weren’t they? Are any of them available?
On a more Capricorny note, do you still have a functioning baby monitor around your house? It would eliminate 2 things, the question of who mom should call first (she speaks and it’s heard in the room of the person with the baby monitor) and the operator error she may have when she’s using a phone while in pain. Or walkie talkies, even, didn’t you have a couple of those when the girls were younger?
Love you.
Oooo, you Capricorns are smart. Too bad I was born in a month of stubborn brute force stupidity.
Sending much love and positivity. Everyone else has said anything I could have said.
In my area hospice has a host of resources–respite care and support of caregivers being 2. Are they able to help? Is there anyone who can be YOUR advocate?
I can see lots of reasons why your mom is reacting the way she is — possibly guilt, fear, helplessness on the part of a woman who I think is not used to not being in control. Regardless, you need to take some time to care for yourself, and call on the others in her life. You can’t do this alone.
I’ll be up in NH next week, looking after my mom who is having surgery on Monday. Please, let me be a set of ears for you (and a set of arms to hug you).
For as much as I would dearly love to be able to put her in respite care, she’s indigent and, as such, doesn’t qualify for that service.
I think that part of what’s fueling my panic is that I am, literally, the only person who’s able to do long-term (as in all day) care for her. If it’s not me (and Bill has to work), there’s no one else.
Kizz, the problem with baby monitors is that she has the t.v. on 24/7 (otherwise, I’d sleep on the couch in the living room with her). Besides, I never had a baby monitor. The walkie-talkie idea could work, except that it would scare the ever loving shit out of me – the tone that goes through to indicate that a message is coming is unaffected by the volume control – and I’m not sure she’s strong enough to push the button anyway.
Oh, Honey Mrs. Chili, this is a very hard place. Sadly, more and more of us will come to the place you are at now when we deal with aging parents/partners/in-laws. Wallow about as we are, we probably aren’t all that helpful to you but we’ll come knockin’ on your door in the years to come asking for advice. You are bravely going where not many of us have had to wander. I do know that the system is totally unjust, your Mom should be eligible for hospice care at least. I’m seeing my hospice-worker cousins tomorrow, will ask what the requirements are. It might turn out that “insurance” is one of them. There is so much that I assume and SO very much I really don’t know.
Don’t panic, talk with Mom, talk with hospice some more. You take the day shift, tell Bill that he has the night shift and then walk out and let him do what he can. Your Mom may have to start managing her own care, you can’t keep doing it all despite how much you feel you should be doing. At least Bill can sleep in the living room for a few nights, he’ll get enough shut eye that he can go to work the next day.
If you can, talk to Moms’ doctor, please do so, dear dr. might have some suggestions for more care options. Can’t hurt to try, especialy if you tell the dr how exhausted you are and that you need help. Just reaching there but it might work.
Keep breathing, ok?
As one of the Capricorns, I’m sorry the baby monitor won’t work. As one who’s cared for a sick loved one, I remember the guilt that came with wanting so much as a shower…let alone a whole day off.
The tough love part of me says you need to find a way to take a small break or you’re GOING to break. And that’s just all kinds of bad.
You really need to find some time to get away and take a break, Chili. I only know you in Blogland, and I have noticed your posts have gone from (mostly) peaceful acceptance to, as you say, an almost panic-attack mode.
Perhaps you are reluctant to take a break because of the type of care she may receive while you are gone. You have mentioned this on several occasions. Perhaps you want to be the one who is with her when she passes. Certainly understandable. But you do know that you WILL be with her when she passes, no matter how far away your physical body is, don’t you?
Long and short of it is you need to spend some time with your family, and I think you need to get out of town to do it. You are so busy caring for your mother that you are not caring for yourself.
Much good advice here, my friend—most of it pointing you in the direction of separating yourself from Mom for a day or two. I wish you well as you figure out a way to do it. Hugs from afar…
Betsy said exactly what I was trying to say and she said it much, much better than I did.
Holy Cow! Still going backwards, so seeing what’s led up to the stuff on which I’ve already commented.
You are definitely doing the right thing. I’m not sure where she’s coming from, but probably a stage of anger and resentment–at everyone and everything. (My mom didn’t talk for 7 years before she died, so we didn’t get this.) And you’re there, so you get the brunt.
I don’t even know what else to say but that the things you are doing since then are so necessary. If she feels rushed, she may hang on for a long time. Your plans are wise.
(I hope this doesn’t sound unfeeling. It is kindly meant, but life is so unpredictable, and it is amazing at how much or how little can affect a life that is near its end. In the end, I know she will understand the strain on you and would not want you (and your family) to suffer unduly on her behalf.)