How much suffering can you witness and how much do you share?

Mom’s still in the hospital.  They have her in a psychiatric unit due to the intensity of her delusions.  Sometimes I come in and she has an amazing team taking good care of her.  Other times I walk in and no one seems to know who or where she is, or how she’s doing, and I find her crying in her bed, terrified.  This is a good hospital, and a fine unit, but they have their limits, they don’t know my mom, and she doesn’t know or trust any of them.  To be honest, I find that trust hard myself in an environment where the pace is so fast, staff is so transient with their constant shift changes, caseloads are huge with new patients coming and going every day, and it’s impossible for them to have much depth of knowledge under those circumstances.

So I’m feeling a lot of pressure to be there with her more often than feels healthy.  She’s so grateful when she sees me, grabs onto me, and tries to get me to call the police so we can “escape” together.  She thinks they’re putting poison in her food, that they’re slowly killing her, and it’s part of a large plot that everyone there is in on.  This is the state she’s been in for a week, with sometimes a few hours of respite when she sleeps, but often the meds give her nightmares.

I felt like I had a lot of support until she went more “crazy” than she already was from regular dementia, and ended up in a psych unit.  You find out who your real friends are when you’re the only family member and you just can’t do it all anymore. 

Two friends I could think of will be at ease in such a unit, even if my mom is out of her mind and agitated when they see her.  One is out of the country right now, and the other is leaving for an out of state trip this weekend.  I asked the latter friend to visit tomorrow, and though it hurts me to know I won’t be there to witness Mom’s suffering and try to ease it a little, my life at home is completely neglected and I’m losing touch with myself.

I don’t know how much of this pain to share with family and friends and how much to keep to myself.  Sometimes in the past when I’ve shared, I’ve later felt frustrated that people don’t seem to understand (how could they?) or to know how to help, and I’m too exhausted to connect the dots for them, and scared that I’ll ask too much or overwhelm them in this state.

I also don’t know how much of my mom’s suffering I can share from this point on- where I might have to draw the line to keep myself intact.  It looks like this could go on for weeks, months, years?  Nothing they thought would ease her terror is working.  More meds, less meds- no matter what they do she’s surrounded by bombs, danger, and spies, 24/7, she’s not eating, and she’s exhausted from fear.  At the beginning I could distract her a little with walks outside to see the birds and flowers, or by bringing her ice cream, but now nothing will work and she’s unable to enjoy my visits because I won’t summon law enforcement for her.

I’ve been doing this caregiver thing for 3 years now, and yet I feel like I have absolutely no idea how to help her or myself right now.  Feels like taking the blindest stabs in total darkness.

So I’m staying home tomorrow, letting a friend be the witness (thank god for that one friend who’s not daunted by the rawest, roughest situations), and hoping that a day away trying to take care of the home front and myself a bit will shed some light on all this overwhelming confusion.

This entry was posted in caregiver stress, support, and respite, lewy body dementia and tagged , , . Bookmark the permalink.

10 Responses to How much suffering can you witness and how much do you share?

  1. First of all, thank you for your sharing, honesty and beautiful writing.

    Those of us who are in your shoes know the constant struggle of sharing. Sometimes best the answer to, ‘how is she doing’ is ‘fine’. Mostly so you don’t have to ‘deal’. That is one of the nice things about writing a blog. It allows you to vent creatively, but to share what you want, without a face-to-face dialogue. Thank you for that.

    This is the part where we remind you to take it day by day. Remember that taking days off are as important to your mom as they are to you — and don’t ever feel guilty about doing so.

    Thank you many times over for your wonderful blog,

  2. Laura says:

    Hope your day is as peaceful as it can be – you deserve it. May something soothe your Mom today. What a difficult time to stay centered enough to believe that you are doing enough, doing your best – I certainly have no answers, barely any suggestions – but trust yourself to know when to pause for a time out & who to tell how much to …

    May this be the worst of times for you as caregiver – may it lighten up soon …

    Deep Breath,

  3. Megan says:

    Thank you so much, Rachele and Laura. Today was better. They have halved her Sinemet (Parkinson’s drug), which is notorious for causing agitation, hallucinations, and delusions. I actually got to see my mom mosly back in herself today. This means she’ll fall more now, but I chose mental health over eliminating the fall risk, which the higher dose of the drug was doing very well, at the expense of her sanity.

    I know this is odd for people whose parents have more “normal” dementia, where it mostly worsens and once you lose someone mentally, they’re gone. It’s a blessing and a curse that she does these intense roller coasters with her awareness and her mental health. I get little doses of my old mom, and we both get lots of suffering in between, because she IS so aware of her unawareness much of the time. This past week was an exception- she was totally gone. Now that she’s back, it’s both a relief and hard, if that makes any sense. I keep grieving losing her, and then she returns for a hello for a few days or weeks, and then disappears again.

    Thanks so much for listening. It means a lot.

  4. Lesley says:

    Dear Megan,
    I’ve been taking a break from writing and reading caregiving blogs for the past month or more, and have just caught up with you and your mom. I am terribly sorry to learn how much suffering has gone on, for the both of you. What can I say? Just that I am another who is listening and sending out love and support.

    I am glad for you that you have even a few friends that are there for you when they can be…that you do know when to take the time you need to stay in touch with you…that you can write here.

    I am pondering the whole sharing thing, having had it go awry twice recently with family members. Why is it that so many offer advice, in response to sharing, when all we want is to be heard-and in very rare instances-understood? Especially when the advice is bound to be far from helpful…for how many can put themselves in the place of caregiver of someone with dementia, and all that encompasses?

    As Rachele said, a blog can be a uniquely helpful way to share. Perhaps I should get back to mine…but thank you for sharing here. I hope you get some of what you are seeking in the writing of your posts and the receiving of comments.

    Peace to you and your mom this week,


  5. Megan says:

    Thanks Lesley,

    Nice to hear from you. I think breaks from the computer are a great thing, though I’ll be happy to read your blog whenever you get inspired.

    I’m glad you could relate the the frustration of sharing with people close to you. Sometimes I feel like it shouldn’t be so hard and there’s something wrong with me. I think the hardest thing now is learing how to decline politely when someone you don’t want to share with anymore asks for an update, but I’m working on it.

    Take care,

  6. momsbrain says:

    Hi, Megan. I’m glad to hear that reducing the meds has reduced the hallucinations. That would be very hard to deal with. While I was reading your post, I found myself frustrated that the medical community can’t do a better job of managing such horrific symptoms. And then to find for Parkinson’s, it’s a tradeoff between physical balance and mental clarity – it just seems so unfair. And not how things should be in the 21st century.

    As for sharing – with my siblings who are out of town, I used to send long emails when things went downhill with Mom. And I then felt bad about sending them, even though I figured they would want to know. That was one reason I started the blog – to keep them informed in a way that let them control when they sought the information. As for sharing in person – the thing that strikes me the most is that some people will ask how mom is doing, but they virtually NEVER ask how _I_ am doing. Perhaps that distinction shouldn’t be made, or perhaps I am being selfish, but my mom is not really suffering much anymore. But I am the only person in her life witnessing her daily/weekly decline. And sometimes I want to talk about that. But I usually put that in the blog, too. I also shared with a therapist for about a year when I was feeling my worst. It was hard to get started – I saw it as another time-eater – but I never regretted going to therapy once I got settled in. I realize it’s not for everybody. But I am sorry that you are suffering so in the role as caregiver while your mom is having such a difficult time.

  7. Megan says:

    Thanks Emily.

    I wrote this post on a really bad day. At this point I’ve been able to get back my balance and perspective, though largely because my mom isn’t suffering quite so much now. Fortunately, I’m currently feeling really supported, even though a large percent of it is virtual- online communication or blog exchanges/ online support groups. I’ve had to let go of my expectations from more direct support from local people, and am working on what we all hate to do- ask for exactly what I need/want, and risk feeling vulnerable, needy, and that it might not happen.

    If most of my days were like the one during this post, I would definitely consider counseling again. It’s been helpful to me in the past too, though it was a long process to find someone who was a good fit. So, to anyone reading this who doesn’t have luck with the first one or two counselors, don’t give up! Like with any profession, you have to dig a bit to find the ones who are golden.

  8. momsbrain says:

    I’m _so_ glad to hear you are feeling better. It’s hard not to have bad days under these circumstances…

  9. 2kop says:

    Hi, my name is Susan. I just ran across your blog in trying to figure out how to deal with my mom’s Parkison-related paranoid delusions. She and my dad live in Florida. I live in Chicago with my husband and four kids, and my brother lives in San Francisco. We’re so far from her and my dad is struggling to understand and cope with the delusions and paranoid accusations. It’s so hard, because 75 years old seems young to me now to be going through so much turmoil and pain. Thank you for sharing your experiences. I’ll be combing your blog to see if you can up with an solutions that might be helpful to us.

    • Megan says:

      Hi Susan! Hope you find something helpful here. I’m not writing much these days, but the blog will be up a while, so please take what’s helpful.

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