Hello Angst

Life is always perfectly ironic.

My last post was about the futility of complaining, and as is often the case, we’re drawn to teach (or write, as the case may be,) exactly what we need to learn.

I keep catching myself falling back into a rut of negativity- questioning everything and finding no answers that make much sense. 

I’ve been so angry today-probably unrealistically, at friends and family who seem to have mostly disappeared as soon as Mom fell into my lap. 

I keep nudging myself back to gratefulness, to remember the new friends I’ve been making- slowly but steadily- wonderful women older than me who’ve experienced parents aging, or who are now caregivers themselves. 

People my own age are mystified, at best, or if they do get it are consumed by the daily busyness of raising their children.  Understandably.  If I were to get on the phone and was crystal clear assertive about how I wanted them to help, I’m sure many of them would pull through.   

Also struggling with not knowing how to let my concerned husband help me right now.  He wants me to tell him what I need (justifiably), and I want him to be able to read my mind, feeling too overwhelmed by everything else to put energy into giving him a roadmap, if I even could figure out what I would put on it. 

Carol Jean, my mother, has been acting as she did just before the last two times she was hospitalized last year- distressed, violently angry, inconsolable, calling me at all hours of the evening, and threatening to call 911 if I don’t take her to the hospital every time she feels something is uncomfortably awry with her mind or body.

I’m quite aware that none of this is her fault (or mine), and yet on some level her distress and her sobbing accusations that I’m selfish and never doing enough for her still can’t help but seep in at times.

A scary, unfortunate medication error started off our weekend.  Mom has a phenomenal geriatric psychiatrist, and I’ve been thankful for his efforts to reduce and smarten up her drug protocol.  But something was lost in translation when he tried to communicate the directions to the nurse in Mom’s memory care about how to safely and gradually reduce one of her meds.  It’s a benzo drug that’s quite dangerous to cut off quickly due to severe withdrawal effects. 

So guess what happened?

Instead of reducing it gradually, for whatever reason, it got completely eradicated in one swoop, which I didn’t figure out until Mom’s increasingly weird, desperate behavior hit me over the head, finally, in a fit of delirious insomnia. 

It finally dawned on me as I was lying awake after a livid 4AM call from her.  I made a series of calls first thing in the morning and it got resolved quickly and efficiently on paper, but she’s suffered immensely from it mentally and physically, and no signs yet of her returning to her last week’s self at all.  Not sure how long it will take her to recover, though hopefully before she ends up in the hospital again.

Every time Mom calls in delusional terror, I want to drive the almost hour trip to go comfort her, and yet I don’t.  I’ve been sticking to my visiting schedule, to keep myself sane and as healthy as possible (the calls are taking their toll; I can’t always get back to sleep, or go to sleep at all, knowing she’s suffering).

But the bigger reason I don’t run over there is because I want her to be able to keep her phone as a tool to reach out to her friends and family when she wants companionship;  I don’t want to reinforce that it’s a tool to summon emergency help 24/7 instead of using her call button and staff.

When health issues don’t set her off, she’s pretty sensitive and uses the phone appropriately, but any physical setback cancel out her remaining censors and social graces.

To top it off, it’s entirely possible that she has another UTI right now, the precursor of the last two major psychiatric breakdowns, as happens way too often with older people- especially those with dementia.  Her last lab test was inconclusive, to my horror, because,

..any of you who’ve tried to help a female with dementia to thoroughly clean her vulva with those tiny alcohol swabs in a doctor’s office bathroom in order to provide a sterile urine sample can understand how disturbing that news is, since it means we get to go back and try the whole tedious process again. 

I know we’ll get through all this one way or another, and we’re incredibly fortunate that she can afford memory care for another few years, and that I don’t need to work full-time right now.  I have no idea how I’d be able to handle this at home on top of the sleep deprivation, not to mention trying to juggle work.

So while things really stink right now, I’m aware of how much harder it could be, and am completely in awe of you caregivers who do all this at home and find the strength and faith to keep going.

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This entry was posted in caregiver stress, support, and respite, dementia, doctors and medical, family issues and tagged , , , , . Bookmark the permalink.

8 Responses to Hello Angst

  1. Esther says:

    I appreciate how clearly you describe your frustrations and what’s going on with your mom. Thank you for this post.

    • Hi Esther,

      I was thrilled to see you appear here, since I’ve admired your intelligent writing for a while. Really enjoyed your last post on the 2nd wave of feminism, etc. I love how you weave so many fascinating topics into your caregiving blog.

      (And yes, I was pretty clear in this post, all the way down to her private anatomy! I don’t usually go that far, but it’s been that kind of week. And we’re heading back to the lab tomorrow to try again….)

      Thanks for visiting,
      Meg

  2. Lesley says:

    Dear Meg,
    Just home from a day in town (Mom at respite care for the afternoon!). I wanted to respond this morning when I read this post, but didn’t have the time. I can only sympathize with all you expressed in this post. Last year was the year of angst for me, especially in the friends and communicating with beloved husband areas….after some rocky months and alot of honest communication my few close friends and I are back on a good path. I can honestly say that I still don’t get as much understanding and effort as I could use, but it is greatly improved and I wish the same for you. And my husband and I are more aligned now as we made the usual compromises to our “styles” (mine being like yours in that I wish he just knew what I needed).

    It always helps me when I can remember that this is a season…that things will shift (usually in a positive direction, tho’ a negative direction can also bring clarity and focus sometimes). But my seasons come alot more often than those in nature, I must say. : )

    You know, when I read your post about complaining, I had conflicted feelings about the idea….just because I think being honest about hard things can be seen as complaining (when it isn’t) and I am always hoping for more honesty from people, especially about caregiving. That’s why I hold back sometimes on my blog, because I know some will see the sharing of my feelings, the whole spectrum, as complaining or
    selfishness or problems in need of solving…when it is really just about needing to get it out, wanting to help others understand, adding to the conversation. It sort of reminds me of when a small child is unhappy about something….the quickest way of making him feel better is to tune into the unhappiness and ask about it and express sympathy. I always found it so much easier and better than demanding cooperation or stoicism. And it is really what I need most even now in the tough times.

    And one last thing. You amaze me! To deal with institutions, medication ins and outs, UTIs, and your mom’s intense emotions along with all loneliness and grief and the rest that is common to all of us on this road….well, I just want to say that you are doing as beautiful a job as can be done. You are doing the best you are able in very difficult circumstances…what more could be asked for?

    Hoping things settle down and you enter a calmer period soon,

    Lesley

  3. Thanks Lesley,

    Glad to hear from you again! It was good to hear your mixed feelings about the complaining post. I love your honesty; it helps me understand that I didn’t explain my intention in that post very well.

    I feel that sharing our grief or hardship is not complaining if we’re sticking to facts and not clinging to them, such as trying to use them over and over for dramatic effect, or for our whole identity.

    Making poetry out of the bare facts is what I feel like you do on your blog. I’ve never thought of you or most other bloggers I appreciate who share their hardships as complainers.

    My mom is the complaint queen (and always was), so I probably was overreacting a bit to the present circumstances. Not that she doesn’t have a ton to be concerned and sad about, but I do feel bad that she never learned to see a lot of beauty and hope in the people and world around her, at any age. And I’m always reminding myself that I don’t need to fall into that rut as I get older.

    So sorry if it may have hit home in a way that might’ve seemed judgmental. And thanks so much for your kind comments below. If you don’t mind, maybe I’ll quote you on the relevant part of your comment here, and some of my response, and put it over on the complaining post. Censorship has never been my thing, and people need to let out and share their rough stuff, so I want to make that clearer!

    Thanks again,
    Meg

  4. Hello dear Meg,
    No worries that I took your “complaining” post in a negative way at all (and it never entered my mind that you might think I complain at my blog)…just to say it made me want to think more carefully about the line between honesty and complaining. Having been a naturally honest (about myself! not in that horrible way some people use to critique other people : ) person my whole life, it has sometimes been taken as complaining or has made people who keep everything inside uncomfortable…I think because so many women (especially) are brought up to be martyrs and stuff their feelings. I believe in the connection between emotions and health and have learned through several health challenges to not keep my feelings inside. I really don’t want caregiving to make me sick, as I know it easily can, so am trying to walk that line between honest sharing and complaining/whining.

    I think we are on the same page about it all, from you have written….so please share away if anything I wrote will help clarify. It is interesting hearing about your mom’s personality…my first thought was “gosh, how hard that must be to deal with”, but as I have written this, I have remembered the nudges I have had to give my mom over our grown-up years to not dwell on the negative, tho’ Mom is very tuned into the beautiful, too. I remember being in the audience at a Christiane Northup/Caroline Myss talk many years ago and asking my mom to pay attention to what they were saying about complaining and negativity actually draining energy from those around the complainers….because my mom could fall into that very easily and I noticed it bringing me down. It is really bringing me down again as she descends into her grumpy winter attitude right now….but can’t talk to her about it anymore and expect her to be able to change. So we do alot of jollying and distraction around here.

    I always seem to write books when we have a conversation! So, so glad we can have them, tho.

    Let us know how it is going, ok?

    • Thanks for your note, Lesley,

      I have to email you to ask you more about Caroline Myss in person. I was just listening to one of her CDs and she’s quite the spitfire- much different than hearing her narrative voice in her books.

      Long day in the medical lab today, waiting for Mom to be able to pee for the urinalysis retake that was supposed to take 5 mins. Never quite worked. Long awkward story, but after almost 4 hours of waiting and trying and waiting, (repeat)…, we finally left.

      Fortunately, I had a few good books to peruse and she was completely entranced by the People magazines in the waiting room, so it wasn’t the worst way to have spent the afternoon, while not quite what I’d envisioned!

  5. momsbrain says:

    I am fortunate that I have been able to give over so much of Mom’s care to the nursing home staff. And it allows me to look back at the two years she spent in assisted living, which were very difficult for me. I thought it would be a relief, but it presented a whole new kind of need on her part, which I spent a lot of time trying to meet. It sounds like you are going through that very same thing. And let me say, the part you wrote about the medication mix-up really gets to me, because people pay extra to have nursing staff take care of such things, and when they’re not taken care of properly, it is VERY FRUSTRATING! And, as you indicated, it causes needless suffering – your mom’s, and yours.

    I personally liked the detail about what you go through getting your mom tested for a UTI. These are the experiences we never really anticipate having until, there we are in the bathroom, taking care of our mothers’ various bathroom needs. Sharing that gives other caregivers important information about what to expect. That is why I wrote some fairly graphic things about my own mother. Maybe it led to one less surprise in the wide world out there for an unknowing caregiver.

    Take care.

    • Thanks for writing. Yeah, some days Mom and I both feel she’s ready for a nursing home, and then other days she’s running around talking up a storm acting way too coherent to be in memory care. With either extreme, I feel I need to be there often, making up for what’s lacking.

      I just read your latest blog post, and although it must feel awful on one level when your mom doesn’t recognize you or seem to care that you came, how nice that she’s finally free of her worries and attachments and can simply enjoy herself.

      I see a lot of people with in-between dementia at my mom’s place who fret all day about where they are, where they’re not (home), and angry that certain things are beyond their reach and control now. (money, driving, taking a walk outside…) Glad your mom is not in that stage and seems to be at ease! All these stages are hard to witness in their own way, but nice you/she have a bit of peace at the moment.

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