Last night’s meeting did not go the way I’d expected but, then again, little is going as I expect lately.
The assembled included myself and Bill, Meadmaker (Mom’s biological son) and his wife Bobbie, and Mom’s middle sister Patty. Ellie the hospice nurse was accompanied by Leigh, the bereavement counselor and, while it was nice to meet her, I’m not sure exactly what her purpose was last night.
Ellie came right out and said that the rest of the family needs to step up. The entire responsibility for Mom’s care cannot rest on just Bill and me, and she essentially said that if I go down, the wheels come off the proverbial bus. Because Mom has no insurance and is (as of this writing) not enrolled in any government programs (Medicare or Medicaid – I can never remember which is which – or Social Security disability benefits), there is precious little that the hospice program can do for her beyond what they’re already doing. If either Bill or I crashes, the only option is to bring Mom to the hospital, which completely defeats the purpose of hospice and undermines her intention to have control over her death.
Everyone there agreed wholeheartedly that there needs to be some relief sent in Bill’s and my direction. Everyone understood that not only was burnout impending, but that it’s likely already begun. Everyone was appropriately appreciative of the scope of the responsibilities and the enormity of what it takes – in time, energy, and logistics, not to mention physical and emotional work – to get Mom’s needs tended to. I felt very well appreciated.
By the time the meeting was over, very little had actually changed, though. Both Meadmaker and Bobbie stood their ground and said that they were unwilling to tend to Mom’s more personal needs. Now, before any of you gets all indignant in my defense (I love you all for that, by the way) let me state here that I harbor NO ill-will toward either of them for saying no. In fact, I respect their standing firm on what they are and are not comfortable doing. The truth of the matter is that changing my mother’s diaper is difficult for me every single time I do it; I don’t wish the experience on anyone, and I’m not even a little angry or resentful that they’re not willing to pick that part up. I wish I didn’t have to do it, either.
That being said, both of them offered to come and sit with Mom for a couple of hours. Bobbie is between jobs at the moment, so she’s got some free time in the next few weeks, and Meadmaker is willing to come to be with her in the evenings after work. If I can schedule them around people who can tend to all of Mom’s needs, they can provide a decent break for whomever is her primary caregiver. It’s something.
Patty was, as she’s always been, outwardly willing to help, but there’s always something complicating her schedule so she’s about the least reliable among us. She’s agreed to do an overnight once a week so that Bill can get a little more sleep (Mom needs to be moved every couple of hours). Her first overnight will be next Monday; we’ll see how it goes after that.
So, nothing’s really changed all that much beyond the recognition of how burdened Bill and I have been. I’m hoping that with some creative scheduling and a lot of luck, I can make this work for as long as it has to.
I don’t know that there’s any way I can say this without coming across as a jerk, so I’m just going to say it:
You’re too nice.
I know Meadmaker and Bobbie, and I like them, and I appreciate the fact that they’re uncomfortable doing certain things for your mother, and I’m humbled by your ability to not be even a little offended by their reluctance.
BUT!
as the saying goes, they don’t have to like it, they just have to do it.
After all, how comfortable do they think you are doing this? Or Bill (on the apparently rare occassions he does it)? How comfortable do they think your (and Meadmaker’s, let’s not forget) mother is going through this?
If I’m overreacting or misinterperting anything, then I apologize, but my initial gut reaction is that you’re being too nice here.
I think now that everyone knows what needs to be done and that you can’t do it alone, it seems as if what has to happen is that they need to be told what to do. I mean that in a scheduling sense and I think you’ve already implied this. Although it creates more work for you, what probably needs to be done is for you (or someone) to say, okay, on these days we need Meadmaker to do this, on this day and at this time we need Bobbie to do this, Bill will attend to this at this time on this day. Waiting for people to volunteer time or duties is going to end you right back where you are now — doing it all. As for Patti’s availability, get her schedule. Not, “I’ll let you know when I’m free” but I need to know right now what days you are free. If you can’t come over, I need you to grocery shop, run to the bank, look this up on the internet, etc.
I’m glad you had somewhat of a break. The muffins looked yummy!
This is sadly the way it often goes in families – some take on more and some take on much less. When mr b’s mom was in a nursing home (she lived with the sister -SIL1- that had 2 young kids and one incident of her needing emergency care at the same time a kid needed it was the realization that there was more needed), the siblings used to take turns hosting her on the weekends.
Mr b and I weren’t married and had a roommate, so we couldn’t have her stay. But his sister who lived close by had room, but two jobs and wasn’t there to look after her. So I would go over and spend time with her or she would come to our place until night and then go to SIL2’s to sleep. I didn’t know her well, but I loved her and helped her to the bathroom, getting dressed, etc.
SIL1 took her on weekends as well. SIL3 lives out of state and couldn’t. SIL4 always had an excuse (her schedule, etc), SIL5 lived further away and didn’t drive, so it made it hard to get her. SIL6 would take her for the weekend, but would drive her to SIL5’s place and leave her then pick her up and take her back to the home, counting it as HER (and not SIL5’s) weekend. It was a mess.
Sorry to go on about myself, but I was just making the point that it happens a lot. Be glad for any help you get and don’t be afraid to speak up when you need to. I never did, because I felt I couldn’t (not being an actual sibling) and the other 2 that took on the work aren’t good at speaking up for themselves and it created a lot of animosity.
Thinking about you, Mrs Chili. I hope you get some relief soon.
So people continue to be themselves.
You might be too nice. And, as someone above said, Meadmaker need not like changing his mother’s diaper, but it still has to be done. Saying no is not really an option.
Yeah, I’m agreeing with nhfalcon and meno here. Of course there are always subtleties to any situation that we can’t understand from here, but if you gotta do it, I don’t see why Meadmaker shouldn’t have to do it too.
I completely understand how you are accepting Meadmaker’s limitations. And I hope the new arrangements work out to benefit everyone. What a difficult time. Sending much love.
Is your mom too young for Medicare?
Sounds like a bit of “from each according to their ability, to each according to their needs.”
See? The thing is, I COULD be upset that more people aren’t willing to put up, but it’s not ABOUT me – I’d like to think that people would be willing to do what needed to be done if it were me, but Mom hasn’t established those kinds of relationships with people. She’s really just getting back what she put out.
I don’t think it’s a matter of age, Gerry. Mom was (and continues to be) a stubborn bitch (and yes, I say that to her face; I mean it with love). She didn’t apply for disability when she became disabled because she never imagined that she’d ever need it. She didn’t go to the doctor when she started exhibiting symptoms of MS in the 70s because she figured it would just go away on its own. We’re neck deep in the process of getting her signed up for everything she qualifies for and hoping that the courts make decisions about what she’s entitled to before she passes. None of it is pleasant, but it’s not worth being angry at her for not being more proactive about her future; it is what it is and nothing can be done about the past.
“Getting back what she put out” – ah-ha. That clarifies things a great deal and I partially take back what I said.
I’m not sure I would agree to change the diapers of my own father, because he would be humiliated if I did, and also because of what he has put into our relationship over the years. BUT, I still feel heartless knowing that I feel this way about it. And because of how much love you have expressed for your mother in these pages, I assumed that any relationship your mom would have with her children was nothing like what I have with my parents.
I guess I re-learned that old lesson about assuming, and who it makes an ass of.
Chili–you ARE being too nice. You tend to those personal issues because you LOVE your mother. Your brother and sister-in-law ought to be doing the same thing. Is it comfortable? Of course, but she’s your mom and you do it because you LOVE her. ‘Nuf said. I’d like to choke them.
Crisitunity, don’t beat yourself up over this; the idea that mom’s only getting back what she put out just occurred to me yesterday as I was thinking about and observing how everyone was behaving.
Scuba Girl, I’ll ‘fess up to a tiny bit of resentment. No one is putting themselves out of their comfort zones and, as a result, the situation for Bill and me is essentially unchanged.
Sometimes the comfort zones may need to be ‘breached’ for the greater good: you! It is very easy for people to say, ‘I’m not comfortable doing…” What do they think we are feeling? Who do they think ‘does’ this stuff?
I had to do things for my father I never imagined I’d be doing: feeding him, washing every inch, changing diapers, getting snot out of his nose… and as hard as that was, and how much I resented my sister for being twelve hours away 99.9 % of the time, I wish I had one more chance to feed him (but I’ll forgo the other things) because all the times I worked with him, I told him continually how much I loved him. One more time would be nice.
I believe there is a special place in heaven for caregivers. My thoughts continue to be with you, Mrs. Chili.
I love what Ms. George wrote, “because all the times I worked with him, I told him continually how much I loved him.”
I hope that you realize that you did and are doing everything within your power and more to show your Mom how much you love her.
sweetie, I have to agree with NHfalcon…. NOBODY likes having to do that type of thing, but it is kind of like the “need” vs. “want” thing. “Don’t like/want to” and “can’t” are two very different things.
I’ve been there (with my grandmother), and it IS difficult, but sometimes you just have to do something.
I know you’re doing everything you can to keep things balanced, and I’ll dope slap you if you get too far out of kilter again….
Love ya..
I was the primary care-giver for both of my parents during their terminal stages (cancer and Lou Gehrig’s). I had a three month partial break between my dad passing and my mom starting her decline. They both passed within a year of each other and I was totally burned out after it was all over.
I felt extreme relief after it was over followed by extreme guilt for feeling that relief and for not always keeping my patience during the process. We had a small family with just me and my brother. He lived 600 or so miles away so all the difficult and embarrassing chores fell to me. Hospice helped a lot and I’m very grateful for their services.
I don’t know what advice to give you and nothing I can say will make it any easier. You’re dealing with it just like I had to. You’ll get stressed and run through all the emotions of guilt, anger, and sadness. It’ll soon end and you’ll move on. It’s been four years since I went through all that and I still occasionally think about it and how I might have done things better. Dying just sucks unless you are fortunate enough to pass in your sleep.
Bob, thank you. Hearing from people who’ve done this – and hearing that their experiences have been similar to mine – helps me feel more grounded and, I don’t know… real, I guess. For all the people who are offering their love and advice, this experience is exceedingly isolating; knowing that what’s happening to me is familiar to those who have gone through it matters a lot.
I’m really hoping to avoid the guilt. I’m having to reconcile that I’m a fallible human being and that the best I can do is the best I can do. Allowing myself the room to not be perfect has been a primary exercise through all of this.
I am not sure if I can add anything to this post that has not already been said. Would it be possible for the son and his wife to hire a caretaker for your mom?
Can she get into Medicaid/Medicare just to have a paid sitter for sometimes? I hope “somehow different” doesn’t morph into “very much the same.” Maybe things will change quickly, but it doesn’t seem to me like this is going to be over as soon as everyone thinks. But then again, it seems the lack of time some people spend, they might things she’s going to hang on forever. Death and dying brings out the worst in a lot of people. Not that anyone is being “bad,” per se, but a lot of people don’t know how to handle it, therefore just shut down. Maybe it would do some good to talk to the bereavement counselor and figure out where they are in this. You’re extended so thin that you’re probably not going to remember much of this when it’s all over. Or much of anything that has happened the past few weeks/months.