December, and boundaries, and self care.

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DaisyJane

I probably should be working.
Warning: This is a long post, mostly because I need to vent. But I wouldn't mind some thoughts about how to handle touchy in-law situations.

December 2019 was a write off. I spent virtually every day simply trying to get through the day, and then the subsequent night. We started the month with urgent medical visits to deal with Matthew's hip pain - he has a congenitally dislocated hip. A week later I called 911 because he went into respiratory failure. He spent almost two weeks in the ICU. I was there every single day. Nine of those days he was intubated. Because of his complexity he wasn't stepped down to a unit, but rather discharged directly from the ICU home. The general feeling is that wards often can't handle complex cases like my son. We have better equipment, and usually better staffing, at home. But we came home just before Christmas so most of our home care staff had booked off. This meant that I spent most of the holidays managing his care almost solo. I was up every 2-3 hours through the night because of his need for care and medications. I also hosted 20 for Christmas dinner. It goes without saying that I bought and wrapped all the gifts - staying up late into the night after leaving the ICU. My in-laws arrived a few days after Christmas and stayed for a week. It is this last part that really did me in - and is what I am most upset about. I need a safe place to vent (here) and wouldn't mind some advice on how I might have been able to set better boundaries - so thanks for listening.

Prior to my in-laws arrival this year (just after the ICU discharge) I had mentioned to my husband that I wasn't sure I could "do" a week of hosting and wondered if we could juggle things. But he didn't feel that we could change things so late in the game. I am not sure why two weeks in the ICU didn't earn me a pass, but for some reason it didn't. What really bugs me is that my in-laws are known for telling me how things will play out, rather than consulting me. So I get phone calls that basically tell me when they're arriving, how long they're staying, and what I will be expected to do. At times that can include hosting meals for extended family. On the whole I don't mind this because I enjoy their company. But this year I was simply too burned out and felt quite resentful that there seemed to be no awareness of how overextended I was. No one thought to stop and ask what I felt I could handle given how overwhelming my December had been. What really hurt was that they ended up planning a large family gathering in such a way that I couldn't attend because of my son's care needs. So despite providing a B and B, purchasing the gifts, cooking meals, and so on, I didn't get to celebrate Christmas with the family. It feels a bit like I wasn't seen as a "real" member of the family because my absence was so inconsequential.

They just left a couple of days ago and I at the moment waffle between feeling so tired I could just sit down and cry, and feeling angry, frustrated, and hurt that they didn't stop to think of how their needs for Christmas/holidays usurped my need to manage my own self-care, and ultimately excluded me. I blew up at my husband earlier in the week and basically told him he was taking the week off work to "help". To be fair he did - take the week off work - I'm not sure he was all that helpful. But I resent the fact that I was essentially pushed to a minor temper tantrum before it occurred to him that he should step in - and he wouldn't have done so without the temper tantrum. Remember I had already (calmly) told him that I didn't feel I was up to hosting for a week. And before you ask, yes, there are other places they could have stayed, and other ways things could have been planned.

Tomorrow we supposedly return to "normal" life. I have an entire month's worth of work I am supposed to catch up on. I start teaching a new class on Thursday. The syllabus isn't even prepared, much less any lecture prep. I am presenting at a conference in less than two weeks. I haven't started preparing my talk or slides. And then there are all the meetings, appointments, and so on, I cancelled during December that need to be rescheduled. I am exhausted just thinking about it all. I am also still responsible for overnight care 4 out of 7 nights a week.

Thanks for letting my unload. Any thoughts about how I could have better managed the "in-law" situation?
 
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Its easy to give advice from a distance without knowing the details of the relationships. But- is it right or helpful?
You strike me as someone who always has been going to the breaking point before calling in change- in which case it seems to need a tantrum or a nervous breakdown to make it visible to the others who are so used to you bearing all of this?
When was the earliest point missed of turning things around? When they announced their visit in the first place. How is the relationship of hubby to parents? Why did he not see that was getting too much?
A week with the in-laws under the best of circumstances strikes me as a stressful time, and it appears to me that they are more expectant than helpful.
Is that the role they always had? Are they used to it because they feel more as visitors than family, or had they been given that role over the years, because help was not needed , not asked for or not accepted?
Have you been aware of how overextended you were- and if so, why did you not go on strike?

Daisy Jane, I can’t believe that you even found the the time to send me an extra Secret Santa gift!
It makes it extra special.
Have you sat down with hubby and made him aware of the work load and time you need to prepare you work load?
You know him best. You know how much you have to put right in front of him in order for him to see it.
 
Wow @DaisyJane you are in a tough spot. Ordinarily I might suggest taking a step back so there is space for someone else to step up. When you're dealing with a son whose care doesn't allow for stepping back, and others near you who may or may not step up, you're in a risky spot.

I'm thinking that telling your husband and other sons this would be a good start. Are there things you can drop or delegate at work? If your work knows what's happening, they may have ideas. Of course, there's risk in doing that too.

The bottom line is that you cannot keep up as you have been. I'm thinking you're probably ready for two solid weeks of sleep. Is there any way you can escape and hibernate for a day or two? If you do that, will you be able to trust that someone will care for your son? Why are you responsible for so many nights? Where's your husband in this? And your other sons?

Sometimes it's harder for intelligent, ambitious moms. People know you can handle a lot. You know you can. Asking for help is HARD. You do have to ask for help in a way that you believe so that others can hear. Don't work yourself into a nervous breakdown.

((((((DJ))))))
 
You just go ahead and vent - it sounds like you have good reason. Over the years of 'knowing you' on WC I have got the impression you are a VERY capable person who can cope exceptionally well with what life throws at you. I tend to fit in the same general category and eventually learned that other people won't know what I want or need unless I tell them. Yep, sometimes if I neglect to do that it comes out as a temper tantrum. Sometimes too they don't realise I MEAN it unless I'm very pointed about it. I didn't learn how to be nicer to myself until all my kids had left home. I still fall into my old ways sometimes.

A lecture on 'what you could have done earlier' isn't terribly useful I guess.

Some years ago I vented to a friend who listened and then said quietly - We do it to ourselves, don't we. Nothing changed for me until I decided that I deserved to have some time for self care and that I was going to take it. When hubby took time for his hobby (in his outside workshop) - I took a deep breath and got out my paints (she is an artist). . Hubby came in and asked about my plans for dinner. Of course, I didn't have any and calmly suggested that maybe he could make something while I cleaned up. He was startled and asked what I had been doing instead of making dinner. I took another deep breath and said - same as you, playing with a hobby.

I agree - we do it to ourselves.

I think of all the people I know who have shouldered far more than their fair share of household and family responsibilities. Usually they are women. The same friend confessed to her total bemusement over how things played out when she was younger, and more willing to shoulder excess responsibility. She mentioned all the mothers who have got up, got the kids dressed and fed and taken to church on time. Hubby got to stay in bed. All the women doing all the work to make a 'nice' Christmas. All the women doing things for family members that they should be able to do for themselves. I had a friend vent to me about the efforts it took to get her family ready to go to Grandma's for a weekend. There were three boys in Elementary school, her hubby and herself. One boy had Down syndrome, one was on the Autism spectrum and one was academically talented. Her vent included that she had spent hours hunting for her husband's wedding band that he would want to wear because his mother thinks 'no wedding band means divorce is imminent'. My response was "Why are you using your time to look for his ring? ? Hubby is big enough to keep track of his own stuff.'

I can't imagine how tired you must be. (((((DaisyJane))))). Sitting down and having a good cry sounds like an appropriate response to me. Make sure your hubby sees this atypical behaviour and help him to start thinking about your well being. When he wants to put his family's needs ahead of yours again tell him clearly that THAT isn't good enough!

At this point I'm going to take a big breath and hit Post hoping that my words don't sound rude, critical or unkind.
 
It sounds like such an exhausting month for you - not just physically, but topped no doubt by a wide mixture of feelings about Matthew's situation - not just current, but future too, and no doubt some reminiscence mixed in there too. That alone would be more than enough. But throw in Christmas, in-laws, caregiver absences, needs of other boys at home, longing for family time, work pressures, upcoming conference & new course .... it amazes me you can even still write coherently. I'm so sorry it's been such an overwhelming time for you Daisy Jane.

First of all, I hope that the overnight caregiver shortage can be resolved so you can sleep. This is SO important - remember that old Maslow's hierarchy stuff that we learned so long ago? Bottom of your pyramid needs urgent attention. Other work & conference bits might have to wait, or be reassigned, or cancelled although I realize & can sympathize that you are probably loathe to do much of that. s**t happens - and hopefully workplace etc can muster some measure of compassionate response, given the opportunity to do so.

Maybe in February (or March!) - when you're feeling more like yourself again & your head is confidently above water once again (it WILL happen!) - then it will be the time to review with husband how this Xmas went off the rails & give next year's Xmas visit & celebrations some thought. Now is too soon & too much, IMO.

So ... hopefully you can take off your superwoman cape briefly, get some sleep, allow life to settle into recovery mode for a bit. (I DO realize that's a huge task btw). Go for some snowy walks with your women friends, vent and fume, cry or yell, do what works. Just don't do it alone. I'm so impressed by the circle of care that emanates from this little on-line community & grateful for your presence here with all of us. Hugs.
 
This month I just didn't give a F.
Other than buying gifts online for my nephews I was really not involved much in any Christmas prep - I left it all to Chemguy. I could have wrapped the gifts myself but I was like no, I'm not going to exhaust myself. I did bag up candies that was about it. With the adults on my side we exchange stocking stuff type gifts and I did warn them that I really didn't know what was happening - Chemguy got pretty much everything for them the Friday before Christmas.

On the evening of the 19th I was informed my father in law and sister in law were visiting on the 23rd - the day my parents came in. And my mom was here for a week and a half helping me. I know that having visitors when my mom is unloading all of her stuff would have stressed her out and then there was my fatigue to consider too. I felt like telling people to hey prepare for guests on the 23rd with that little notice is kind of unreasonable to begin with and with everything going on I was just like no, if they want they can come on Sat or Sun, not the 23rd and after Christmas is better. I wanted to be able to enjoy the 24th and 25th and 3 days in a row was going to be lots for me. As it was we left before the kids were even put to bed on the 24th, I was totally exhausted and feel asleep almost immediately in the car. I did find out afterward Chemguy had a bit of a discussion with his family before the 23rd was decided on - it wasn't just told to us as he originally told me, but he should have known to ask me first. They came the weekend after Christmas and I think it worked much better for me (and we were still providing the food for while they were here including gluten-free no trace cross-contact which starts with basically assuming everything in the kitchen is covered in gluten minus a bin that contains gluten-free things including cutting boards I bought for that purpose). His brother in law we saw Christmas Day for lunch which was planned last minute, but at least I got to pick the timing. I felt a bit guilty but then I think of how much we do, we have done lots to accommodate his sister in the past (who got 3 cats knowing how extremely allergic I am) and last year my Mom changed they way she did the turkey for my sister in law, and my father in law left pretty much immediately after dinner but was waiting up to get leftovers. My family was basically bending backwards to accommodate them last year. We also hosted Thanksgiving despite how awful I was feeling (to be fair, Chemguy did most of the work, but I did prepare the spare room for my inlaws) and I made the trip to Calgary despite feeling awful for my father in law's 60th birthday.

With your situation it would have been much harder to flat out say no to the relatives for that time frame as it was planned in advance and at least for me I would have had a really tough time saying no to where people planned to be. Gifts though? When it's not kids just say you're doing it later or get someone else to handle it. Meals? Let others use your kitchen (not always the best option with some guests I know) or since they have family in town let them go there/order in food. Your husband should also step up when it's his family to explain things - you can communicate to him and then it really is his place to communicate to the family. Ie. With Matthew being in the ICU this month things are not normal here and it's more of a make yourself at home than us hosting because of it. We will host dinner on X day (and hopefully he steps up for doing most of that if you're doing more care than typical) but that's it.

I'm lucky, Chemguy has been really understanding. He was a bit pouty for a few days about me saying no to the 23rd visit but I think some of that was on himself - for not being up front with me with what any of the discussions were. It's probably also a bit easier for me to say no when I'm the sick one.
 
I will say too, it helped that my sister stepped up. Even before I was really aware of what was going on I flat out said I wasn't travelling at Christmas, I wasn't feeling up to it and I was staying put and I wasn't even sure about guests.
My sister was slow on sharing plans with anyone, which was annoying my parents and me a little bit although it wasn't changing my plans much but I did want to know if it was just going to be Chemguy and I for Christmas. I think though she was basically waiting to hear what was wrong with me, with how bad things looked for a while I think she was questioning if I was going to be hospitalized. Shortly after the biopsy results were back she offered to host both Christmas Eve and Christmas Day. My parents did offer to stay in a hotel, but I said it was ok for them to stay here, it's not like they expected much, my mom took care of Christmas breakfast and they helped with some vacuuming and stuff like that while they were here.
 
(((((((DaisyJane)))))) vent as much as you need to. Isn't that why you opened the room in the first place – to give a person a place to (let down their hair) and to give others a chance to offer compassion and understanding, and to offer our collective wisdom and advice.

Others have offered their thoughts on this. I can only add my motto: 'Take care of the caregiver.' And when you are the caregiver, you have to first take care of yourself.
As for your in-laws - I too have difficulty knowing how to deal with in-laws. I think perhaps that problem should resr on the husband; they are his family. Hindsight is good. In your case I think what should have happened was for you to tell your husband that they were his responsibility and if he couldn't tell them that this wasn't a good time to come, he would have to look after them himself (preparing rooms, making meals, arranging for entertainment). When they arrive, greet them warmly, then excuse yourself saying 'I have to care for an extremely ill son and I am night duty again.' Tell your husband that you will join them for dinner if you are able to but otherwise you will expect a tray in your room.
(Actually, I don't know what you should do in the circumstances. I would probably just be passive aggressive, and end up like you having a temper tantrum.)

I care.
 
First of all Daisyjane, hugs.....more than likely we've all been there at some point in our lives for whatever reason. I know I have.
We woman can be very hard on ourselves and often our own worst enemy when it comes to our response to a hard situation. Isn't it all too "common to refer to these episodes as "temper tantrums", when in fact what you did was a legitimate response to a very stressful situation but at the same time, I know when things get to this level I also tend to internalize the problem and the idea takes shape that those closest to me should "just know" somethings wrong and jump in to rescue me. When that doesn't happen, which it usually doesn't, it just adds fuel to the fire within.
No one is a mind reader, and I suppose if we bear any responsibility for the situation at all, it is that after the dust settles we really need to convey to those closest to us, what our needs are. Asking is very hard, especially if you're regarded, either by your family and even yourself, as the necessary glue that holds the family together. Could it be time to relinquish some of that role? It's risky, your family probably won't like it and your change will cause them to change also.....and who embraces that? LOL.
For now, I would call in the troops.....get immediate increased help with Mathew to allow you more focused time on your teaching assignment and your conference talk. Set aside some quiet time or time with a friend outside of the situation. When that's been walked through, maybe you could take some time in a couple weeks, to sit down and prioritize on paper what needs to change.....for you.....in order to make this work better. Go out for dinner with your husband, away from your kids and go over these things....who knows, he may have some things bottled up too.
Most of all, I just want to say.......everything doesn't have to be perfect for things to work out, it's okay to let others see the mess.
 
Hugs, Daisyjane, and I'm glad you have this place in which to vent.

That being said, December is evil. The "holiday season" is a patriarchal plot designed to render women (primarily) exhausted, guilty and impoverished.

Also, respectfully, I'm not entirely sure why you are the only one who gets up and tends to Matthew's needs in the night. It appears to me that there are four non-disabled adults in the house, and that should work out to every fourth shift in my mind.
 
Thanks for all your responses. As many of you pointed out, this past December was problematic in part because of the way things have been organized in our home for ages. In situations like ours research is pretty clear that families tend to fall into traditional roles - mom as caregiver, dad as breadwinner. Our family fits that description - despite my working outside the home. Things are further complicated by the fact that my husband works for an "old-boys'" law firm known for its lofty expectations re: billing, and commensurate work hours. For the duration of our marriage he has worked between 60 and 80 hour workweeks and would easily be defined as a workaholic. On the whole, I tend to like being busy and generally handle a fair bit as a result. I'm usually okay with that. I also will avoid conflict in the home by doing things myself rather than making something a possible source of conflict. So there's definitely a pattern that played a role in how this past week played out.

But there is also a very clear rule in our home that if I set a boundary or ask for help then I mean business - mostly because I so rarely do such a thing. I have been clear, that while I can do a lot, I can't do it all. I think that was what really upset me that past week. I identified my need for boundaries and was ignored because they didn't align with others' needs and agendas. Originally my in-laws were only supposed to stay for about two days - that I felt was okay. I was up for that. It would be a nice visit, but not too much. But then at the last minute my in-laws changed their plans to a full week without first discussing the change with me. I basically got a call and was told "this is the new plan". I chatted with my husband that I didn't think I had the energy to host for a week and I was frustrated I wasn't initially consulted about the change in plans. I suggested he chat with his family about how things might be done differently. It was then that things broke down. I feel I set a boundary and it was ignored - for lots of complex, family-dynamic, related reasons.

This morning I told my husband that I wanted to spend some time talking about what happened so we can avoid a repeat. I need to know that when things get really crazy I can identify my own personal boundaries and they will be heard without my having to go to DEFCON 1. I hate that sort of conflict and resent that I wasn't heard before the "temper tantrum". I can understand that situations can get complicated and that there may need to be a conversation about how things might play out. But I need to know that conversation will happen and that my husband will actively take part in finding a workable solution rather than leave me holding the bag, or putting me in a position where I feel I need to loose my cool before I am taken seriously.
 
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Hugs, Daisyjane, and I'm glad you have this place in which to vent.

That being said, December is evil. The "holiday season" is a patriarchal plot designed to render women (primarily) exhausted, guilty and impoverished.

Also, respectfully, I'm not entirely sure why you are the only one who gets up and tends to Matthew's needs in the night. It appears to me that there are four non-disabled adults in the house, and that should work out to every fourth shift in my mind.


Fair question Bette. At the moment there are only three non-disabled adults in the home.

Our eldest lives elsewhere and our youngest is away at school - though to be fair they were here for a bit during the holidays. In terms of their involvement, I feel strongly that they should not have to step in and assume Matthew's care unless they want to. There are many reasons for this - the main one being that Matthew's care is complex and brings with it significant responsibilities. A mistake can be life-threatening and it is simply not fair to put that sort of responsibility on (very) young adults who have no training in health care. I also feel they should be allowed to be 'brothers', not caregivers or nurses. They have spent much of their lives living in the shadows of their brother's care and I don't want to make it any more complicated that it already is. At some level I need to protect them as well, and ensure they have something approaching a normal family life where they are not unfairly burdened by caregiving demands.

The other two adults in the home are our live-in caregiver who was on holidays for some of the past week, and my husband. When not on holiday our caregiver works 3-11pm and manages all of Matthew's evening care. And, yes, my husband should probably be doing more of Matthew's' care. But because of our division of labour he hasn't been involved over the years. This has meant that as Matthew's care becomes more complex he is less able to to step in and do what needs to be done. This morning we talked about the fact that that probably needs to change moving forward.
 
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(((((DaisyJane))))). Congratulations on deciding that something needs to change - and for not accepting that what has to change isn't just up to you. Your observations around 'how things came to this crisis situation' are fair and insightful, I think. It never really boils down to one person making unhelpful choices. The way things 'work' for one family may well be a total bust in another. I agree with you 100% on letting the other kids be brothers to Matthew, not caregivers . I am 100% sure you will find a 'reinforced' method of ensuring your own needs are met - even with the added stress of in-laws.
 
DaisyJane, what a helluva awful Christmas - my heart goes out to you. I'm so impressed with your strength - even your venting has an element of control and is well expressed and written. (In your situation I'd be wimpering on the floor, curled up in the foetal position).

You have insight - which is an excellent asset to have to improve your situation.

I agree with you about the central issue being one of boundaries. I'm wary of what I'm about to say next, as your situation doesn't need anyone (me) making you feel worse. So, please, please, understand that my motive here is to help you.

In this past year my therapist has worked with me on setting boundaries - why I need them, and how they can improve my life. The pay-off is that this past year has been so much easier.
Stating your boundaries is a necessary first step, but the real work I found was in enforcing them. Others still have their own agendas, and often won't change their behaviour to accommodate your boundaries, unless you enforce them. The only behaviour you have any chance of controlling is your own. I think it's our sense of fairness that makes us feel that surely when others see our need for boundaries they'll simply accommodate them. The issue is what to do when they don't. I'm sorry if this sounds harsh -but you set your boundary with your husband re in-laws and, by not enforcing it, you gave the message that you'd do what they wanted anyway.

As has been said, plan for next year soon. Decide how long your in-laws can stay (keep it short - after three days fish and guests go off). Say to your husband, that if they ignore this, you will simply leave the house and book into a hotel. (You will feel like s**t, and have a miserable Christmas - but it will ultimately be worth it for enforcing your boundaries and increasing your self-worth. Incidentally, I'm not saying that your husband is a bad guy here - he works impossibly long hours and perhaps needs some work on his boundaries, too.

Maybe I've got it wrong. Maybe venting is enough for you -a chance to let out some steam from the pressure-cooker? Only you know the answer to that.
 
Wise words Pilgrim and carefully chosen. I think we women have been taught to be way too 'nice'. I see room in the situation DaisyJane was dealing with to have dealt with Matthew's needs and then sat down claiming exhaustion (which would be true). Hubby or the in laws could then do what needs doing. If they can't/won't figure it out sometimes a hammer is required.
 
I totally hear you PP. Your comment about enforcing boundaries is spot-on. I find the challenge is knowing that if I enforce them people I care about will be hurt. I have a hard time sacrificing relationships in order to enforce certain boundaries. You've given me lots to think about.
 
Daisy Jane - a tale of wisdom comes to my mind as you talk about change, and fear causing hurt to others. That's a narrative many of us fall into - particularly women I think. Long ago, a wise family therapist gave me this tale & image - and it has always stuck & made sense to me. Let me see if I can describe it in words tho - it's so much easier in person!

On one hand, bring all five of your fingertips together, with your fingers more or less straight (haha - anybody with Italian heritage will know this move well!) . Ah, I found a google image to help me out - thank you google -
fingertips 2.jpg
Now imagine a big elastic rubber band surrounding all the fingers - holding them snugly together - that's the family (or group or whatever). As long as everyone stays still/in position/doesn't move or change - ie maintains the status quo - all are comfortable within that snug elastic band. When ONE member decides to move/change - it will stretch the band, pinching & putting some pressure on all the others - who will naturally work to pull the mover back into position - to maintain comfort of the group/family. That's always the first response. However, if the mover maintains/practices their new position persistently, then over time the others will come along bit by bit, in order to get back into a state of comfort from the pinching elastic band - and new status quo settles in. It's a simple illustration of the challenge of change. Sometimes it's even ourselves who retreat from the change to restore comfort - that damn change stuff - never easy, or simple.
 
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