Lest you all think that I’m handling this with nothing but strength and grace, I’m here to tell you that it ain’t so.
This shit is hard, and I’m finding myself dealing with all kinds of unattractive and conflicting emotions. I’m hoping that admitting them – to you and to myself – will help me to figure a way to deal with them.
Let’s start with resentment, shall we? For starters. I’m resentful as hell at Bill. A consequence of the man’s denial is that he has no idea of how dire Mom’s condition really is. He thinks it’s perfectly okay for her to be alone for upwards of two hours (I don’t want her to be alone ever). He argues with her about how often she needs to be moved or changed or have her sheets adjusted. He’s taking nearly obscene advantage of me; he takes his time coming home from work, he leaves dirty dishes in the sink and expects me to do them (I know this because he told me the other day that he doesn’t expect me to do the dishes, but he keeps leaving them, anyway. I went two days before I couldn’t stand it anymore). His grown sons are visiting next week, and he’s expecting me to come to tend to Mom on his days off (and even if he weren’t expecting it, I don’t trust him to be available to Mom because he still thinks it’s okay for her to be by herself). As a consequence, I’m having to do a lot of juggling to make sure I’m free to see that Mom is well cared-for.
Second, I’m frustrated by wondering what Mom’s waiting for. She’s miserable. Her pain meds have been adjusted three times in eight weeks, and it’s still insufficient. She only has use of one arm. She has two positions, and neither of them is accessible to her alone; she needs someone to move her. She’s literally wasting away. As far as I can tell (and I recognize that it’s not mine to tell, but still), there is almost nothing in her life that’s worth putting up with this kind of pain. Mom used to be a strong, fiercely independent woman, and seeing her like this is exceedingly difficult for me. I am willing to admit that I will be relieved when she finally decides to let go.
Third, I really miss my family. While I want the girls to visit, I don’t want them to have to be here for too long; seeing Mom like this is difficult for me, I can only imagine how hard it is for my children. Plus, there’s nothing here for them to do but watch movies and bad t.v. My husband is having to take up all the responsibilities of our household; I’m literally never home long enough to do much more than throw a couple of dishes in the dishwasher before I fall exhausted into bed. It’s especially hard on the weekends; my family went out and had fun with the Wayfarer clan yesterday, and I missed all of it. Tomorrow is our 13th anniversary, and I’ll not be able to celebrate it because I’ll be here from around 9 to a little after 8 (that’s if Bill comes right home from work). I want to go out with my girls, I want to have fun with my husband, I want to do something – anything – other than sit here waiting for my mother to die.
For as silly as it may sound, I miss my cats.
I miss my life. I’m not thinking. I’m not reading. I’m not really writing. I’m not able to see my friends or interact with people. I’m not exercising or eating right. I am entirely out of the loop about what’s going on in the world.
I hate that I feel like I am always on the verge of tears. I’m tired, and I really want this to be over.
See? Not all strength and grace.



Well, I have written and deleted several attempts. I guess the best I can do is just to let you know that I am thinking about you and that I understand a lot of what you are going through. Not all of it, as each person’s journey is unique, but too much of it. You are a more gracious person than I so I suspect that you will put this behind you with greater ease, when it is indeed behind you. As for me? I’m still angry with my family members who just could not or would not participate. It’s so hard. Sending positive vibes from the middle of the country.
Chili, I’ve read your blog for ages but have never commented…….your entry today really hit me.
First, don’t EVER think you are not handling this “sufficiently”…..you are giving your Mom absolutely everything she needs and are making great sacrifices to do it; not because you want an “atta girl” but because of the deep love and bond you have.
The think that struck me the most is your line about “what is she waiting for”. She might be waiting for YOU to let her know it’s OK. Might sound silly but my grandmother suffered with lung cancer and was on the verge of passing for hours but she would not let go until I was there and could tell her it was OK. As soon as I got there, she opened her eyes, I told her I was there, it’s OK and she was gone.
So, for whatever it’s worth, consider telling her that and have her other loved ones do it as well. It may just give you all the peace you are searching for.
All your feelings/resentments are natural and justified.
I understand about your girls. I didn’t have a choice about my girls seeing my mom because we had to stay with her when we visited, but the were much younger than yours, and I let/encouraged them to play in the yard. I didn’t want them to remember that about my mom. They never knew the “real her,”but I didn’t want them to only remember the end. (Turns out, they were young enough, and we didn’t take enough pictures, and they don’t remember much of anything.)
The fact is, there will be other anniversaries, but it’s not fun missing one. I hope there is some small thing you can do together to at least acknowledge the day. What I love about this is that you have a loving, understanding husband who will take up the slack at a time like this and not resent you for it, and that when this is over, you’ll have a nice homecoming of sorts and likely be closer for it all. What you are doing would tear some lesser families apart, or at least damage them.
It seems that if they are increasing the medication so frequently, it should soon get to a point where she isn’t awake. I have another friend who is going through a similar situation, and it has been over a year. No one thought her father would live that long, but it is AMAZING how long a person can live with the slightest bit of nourishment and water when they are not using up that energy in activity. Maybe your mom is holding on for Bill to come to terms. Who knows?
Know you’re in my thoughts. And if you have time, I mentioned you in a post yesterday. Please don’t feel obligated, but I couldn’t help but think of you..
I am trying to put my thoughts into logical order….but wanted you to know I was here today.
I won’t deny it sucks because I know that it does. The bottom line is that you and your mom know what you have been doing for her and when all is said and done, there will be no regrets on your end. It’s a long tiring process that will take you away for a bit, but think of the peace that you and your mom will take from this in the end knowing you did what you could for her. Remember that.
OK, you’re human. I think we knew that. ;^)
Caretaking is a difficult job, no matter what. And resentment and being tired are part of the package. Take care of yourself, too.
I agree with what everybody else said. I’m also sort of proud of you, if that’s OK, for coming out and admitting all this stuff here.
I hope your mom finds what she is waiting for and releases it.
It’s hard to know where to be, I think—at least it was for me. I am a wife and a mother and I was a daughter, too. My kids were 6 and 9 when my Mom died and 15 and 18 when my Dad died. When my Mom was sick, my Dad wasn’t at a place where he could hear just how sick she was.
Hospice has resources to help you and your family (ours had a children’s worker, too) There is so much to deal with. They should also be able to adjust pain meds as they need to be adjusted.
My heart goes out to you. I would be there if I could.
Feel what you need to feel. Hugs to you.
I’m thinking dark thoughts about Bill right now.
Everything you are feeling is very normal. None of us are saints, thank god.
Hugs.
As someone who has only witnessed the demands required of being a near full-time caretaker for a loved one…
I doubt there is anyone human who can always handle the obscene stress of it with strength and grace.
Thinking of you…
Sorry if you’ve addressed this here before & I’ve forgotten, but can you get a nurse to come stay with her once in a while?
Unfortunately, I don’t think we have a choice about when we go. Just because we feel “ready” or know that there is no getting better doesn’t mean we can be released from our mortal bodies. I know that it was a few weeks from the time that my friend Teri made up her mind to stop fighting and when she finally passed away.
I’d have a conversation with Bill about tomorrow, seeing that you get some extra time with your family, especially in light of his sons’ upcoming visit.
All of the above mentioned comments are full of so much wisdom. One thing I know is that no matter how difficult this is on you it will be worth everything in the end.
I think you need a break. Go and be with your family to renew and rest. One thing I agree with, if you have not already said so, is to let Mom know that it is OK to go to the light. Tell her you will be alright, that Bill will be alright. Tell her how much you love her and that you don’t want her to suffer anymore. There may be a special event like a birthday or anniversay that she is hanging on for. In my great grandmother’s Bible, I am amazed how many deaths occur on such occassions. Life has a way of renewing itself through birth and death.
I also agree that she may be waiting around for Bill to come together.
I admire you for your love and longstanding vigil to her. I pray that the pain will be over soon. Watching her decline is so tramatic in itself. In the end, I did not even recognize my mother. That may be an image that stays with you for a while as her caretaker.
My heart goes out to you during this difficult and sad time. You do what ever you need to do in order to endure her passing. You are blessed to have a wonderful and unselfish husband that is there for you.
Love and Peace,
Pam
Thinking of you.
If you don’t take care of yourself, you will not be able to take care of anyone else.
Peace be with you.
Bill must be scared. It doesn’t excuse him being an ass.
Take care of you.
Sending much love your way.
This is probably the hardest thing you’ve ever had to do, and although you are fragile, you are handling this beautifully, in as human a way as is possible. Bill is being selfish and uncooperative and that’s inexcusable; I dearly wish there was a way to get him to see this, but ultimately, your focus is on your mom.
I know it’s hard, honey. Take care of yourself and do what you can to recharge, even a little.
So much love, a strong shoulder, great ears and a LOT of chocolate…
I have nothing to add but love.
its a rough ride. Let me know if I can help with mom. The kids are welcome anytime, and I can cook, clean and do laundry too….
And the shoulder is always here…..
love ya
I’ve said what I have to say about all this in private to you, but I want to publicly tell you I (we) understand, and conflicted emotions on your part are “normal.”
I can not seem to put together thoughts on this but I can say that I am thinking of you.
Having normal feelings doesn’t mean you’re not strong. Hang in there.
I resented the hell out of my sister who was 12 hours away from our father during that last, difficult year. I still kinda resent her as I’m the one to go up every week to help our mother as she recovers from various ailments and puts our father’s business to rest. I love the hell out of her, but I envied her distance from it all: the pain, the feedings, the sitting by someone who doesn’t remember your name. My children and husband suffered with me; my husband was the trooper yours is: he kept the kids busy so I could make the weekly trips–he still does.
I think you are perfectly right in your feelings, both good and bad… your grace under pressure is inspiring.
You are doing great.
Believe me. You are doing GREAT.
If she is coherent, let the girls visit. Granny may not look her best, but if she can talk and communicate, more reason.
When she reaches the point where it is too hard for her to talk or interact, probably time to keep them away. It was tough choice for me because my daughter loved my dad so damn much.
I will issue only one warning. When all is said and done, be careful. That is when everything you are carrying can and probably will come crashing down on you.
Crawl in bed for a couple of days, hold the girls, and then go tan or something. A red sox game would be best.
You are in our prayers here at Casa Doom Cake