So.
The weekend with my mom went far better than we expected, although it’s definitely more of a challenge for her to do basic daily living stuff with her broken arm and generalized weakness. A nurse came by on Sunday to evaluate her and she will have someone come in to help her bathe and manage laundry and that sort of thing, which will be great and a huge help. It will also allow us, if we need to, to go out a bit (by us I mean me and Charlie and Tori). Right now my mom can’t be left alone. Luckily I’m not traveling for work for quite a while, so that won’t be too huge an issue.
Today we went back to the endocrinology team who told us news that changes things. Basically, my mom’s calcium levels were perfect during this whole last hospitalization – so the symptoms she had in the hospital were NOT caused by her hypercalcemia.
So. Back to square one. Again.
She’s been referred to some gerontology specialists and we’re trying to get an appointment before the end of March, because it appears now that what she has is likely chronic and falls under their specialty.
To say we’re frustrated is to put it mildly. My mom is already beginning to show some creeping symptoms, so, yeah. We’re frustrated, and scared, and more.
My mom has a huge amount of anxiety about this, as you can imagine. As a teacher and a scientist, having trouble thinking is incredibly difficult for her, although she doesn’t remember the worst episodes, blessedly. I love her, and I worry about her.
And I still feel completely under-qualified to manage her care.
…..
Also, I can see that this stressful situation is beginning to really become difficult for Tori. She’s okay when my mom is in the hospital (as are we, since we know she’s safe), but when my mom is home Tori becomes very clingy and insecure and worried. This is the last thing I want for her. My childhood was one of constant worry and stress and god, I so don’t want Tori to feel that way too.
We talk with her a lot, and Charlie and I are both working hard to spend time with her playing games and drawing (she and I have been doing – help me – crafty sewing projects together. All I can do is hope that’s enough, for now.
…..
I cannot thank you all enough for your kind emails. They meant so much to me, and it was remarkably freeing to not have to worry about policing the comments. I know those of you that emailed had to go an extra step, so I really am grateful to you for taking the time.
We’re just going to keep putting one foot in front of the other, because after all, what the fuck else can we do?
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I think we can handle some ads in exchange for updates about you and your family. :)
When my grandmother had some health issues and incidents in front of us, my Dad always laughed lightheartedly about and it made me feel better. I guess that kinda falls under the “if you’re not laughing, you’re crying,” rule and I suspect it shaped my tendency to laugh a lot in life;)
Fingers crossed the new doctors identify the problem.
I hate to read about your mother. We went through something similar with my grandmother a few years ago. SO frustrating. My grandfather refused to advocate for her so my mother and I stepped in. We were very lucky that they had money saved and we were, in the end, able to pay for 24 hour care. Very lucky. You and your family will be in my thoughts.
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This has got to be unbelievably stressful for you guys. I hope that with someone coming in you guys can get out and maybe do something to get your mind off of everything.
It has got to be so frustrating for ALL of you. Medical mysteries are only “ok” after they have been solved. It took my Mom almost 4 years before she finally got her MS diagnosis. And because she then finally knew the WHY for her myriad of symptoms she was so relieved.
I’m crossing my fingers someone can find what is really going on.
Praying for all of you!!
Hang in there, Cecily.
Oof. I’m sorry. Glad things are going OK so far and that your mom has some help (in addition to you of course) (because really … !), but still, so much to deal with. Please keep us posted when you can and I hope you will find answers (and that they will lead to treatments, and improvements, and so on).
Hey Cecily. I know you keep saying that you feel under-qualified to manage your mom’s care but I just want to point out to you that you totally ARE managing it. I can only imagine how frustrating it is to not have answers but that fact doesn’t mean you aren’t managing her care. You are doing everything in your power to keep your mom (and Tori too) safe and cared for and that is amazing. I wish it were easier for you but you are doing it. Continued wishes for strength.
my grandma suffered alzheimers, and she lived with us a little too long, probably. it was sad and scary, but i understood the situation. i was seven or eight when we put her in a nursing home, after a few years of declining clarity and function. it didn’t stress me long term or leave much of a scar. just wanted you to know.
Ditto what Jodes said. You actually ARE doing a very good job of managing her care! But sometimes the medical mysteries are just … difficult. If you really feel inadequate to the job, just imagine for a moment who in this world could do a better job than you. No one, really. It’s just that these are very hard questions and difficult circumstances.
As for your daughter, I’m sorry these episodes make her uncomfortable and clingy. But you are actually modeling a wonderful ideal: “Family takes care of its own.” No one is running out, no one is acting out, no one is getting drunk. She is seeing her mom and dad do a great job with a really tough situation. Tori is resillient: she’ll bounce back when things are happier. And she’s learning very good things.
I dont comment much but just wanted to let you know I am praying for all you and hope things turn around real soon!
Hang in there! It must be so incredibly frustrating, but you are doing a good job. Tori will be fine, really.
I want to chime in here too. I think that Tori will be okay in the long run as well. When I was a child, my grandfather lived with us for the last few years of his life. He had cancer and we experienced his hallucinations from the pain (which were scary) and even helped to administer his meds when my mum needed help.
After my grandfather died, my brother and I were both grateful for having had the extra time with him that our cousins didn’t have. Also, I think that being exposed to someone who was very ill made us more compassionate people. I know that when I was a caregiver for my father-in-law toward the end of his life, I drew a lot of strength from the example my own parents set when they looked after my grandfather.
Sadly, this is a really difficult role you’ve had to take on and there is no set of instructions to guide you. From where I’m sitting, it looks like you’re doing a great job. hang in there!
I can’t stress enough the positive influence you are having on your daughter because of the way you are taking care of your mother. Once when my daughters were small, I was on the phone with my mother and I was yelling at her because she was being her usual ridiculous self and when I got off the phone I actually said to my daughters – “Don’t ever talk to me the way I just talked to Grandma.” After that I never raised my voice to my mother again (in front of my children that is – Im not perfect!) We say that actions speak louder than words because it’s true. I hope you find some answers and some peace and wellness for all of you.
Were your mom’s elevated calcium levels resolved by the parathyroid removal surgery? But she is still having episodes of confusion? You said she had a neurologist in the hospital — did s/he order a brain MRI? I would think a full neurologic workup is in order if she is still having cognitive difficulties and has been having them for several months. (From someone who has had neurologic workups & brain MRIs for the same reason…)
We suddenly had my father in law living with us after a “minor” surgery and I know well the overwhelming feeling. I found out through calling senior services that there are a TON of services offered that I knew NOTHING about. I would strongly encourage you to find your local senior center or senior services department and give them a call. We got assigned a social worker who coordinated an unbelievable amount of services for us at little or no cost to us that filled in the gaps for us. Everything from free transportation to medical appointments for dad to an aide to help him several times a week with bathing and shaving to assistance with his meds and medical appointments. I know that it was a lifesaver for us. It helped him as well since it helped keep the boundary between parent and child somewhat intact. He didnt’ want my husband to bathe him, but he was okay with a stranger doing it. E-mail me if you have any questions.
I wish I could help you somehow. I can’t stand to read about someone having a hard time and be completely unable to do anything about it!
But this isn’t about me. It’s about you.
Remember to breathe (deeply). Everything flows from there.
Glad things are going better than expected, but frustrated for you at mystery diagnosis. Sucks :(
Oh, I’m so sorry with what you’re going through.
We are in somewhat a similar situation. My father is constantly battling something. In the last 2 1/2 years: cancer diagnosis, cancer treatment (radiation & chemo) heart attack, broken hip, pneumonia 4-5 times, divirculitis with a colostomy and all sorts of crazy fluctuations with his blood pressure. It’s been horrible. Like you, he lives with us, as does my mother, who is younger and relatively healthy. It’s been so so difficult. I try my best to shield my daughters from everything but it gets so tough when I need to explain why Lolo (my dad) is in the hospital again. Everyone is exhausted. I will certainly keep your mom and your entire family, especially Tori, in my prayers.