Hi everyone! My name is Scooter, and I’m here to ask for help in navigating care for my newly not-ok, but fiercely independent stepmother.
Background - My stepmother is 76, but from a long line of women who lived into their late nineties. Her grandmother was climbing trees at 95! At any rate, I’d hoped for many years of health and happiness for her before anything serious arose.
She is a widow. My father, her husband, died 13 years ago.
I’m the only close family, although still 2 states away.
P, as she will be called, has had an “essential” tremor for years that affected her non-dominant arm. Annoying, but not overly limiting.
Lately, the tremor has worsened, so she went to the neurologist. From her words, the tremor has worsened just a bit, but there is a procedure that can fix it!
I spoke to the neurologist today, and he said that there’s a tumor/lesion interrupting fluid flow within her brain causing confusion, difficulties walking, and incontinence! There is a surgery, drilling holes on her skull to alleviate pressure, but no cure for the mass/lesion as it is smack in the middle of her brain.
At any rate, I’m headed up first thing tomorrow AM. I already called for a welfare check after she didn’t speak after picking up her phone, then sent a nonsensical text. Turns out it was the tremor and she dropped the phone.
Essentially, I need to know where to start. How do I respect her independence while keeping her safe? How can I get her to be honest with me? I’m sure she doesn’t want to worry those around her, but it’s too late for that. I just want her to feel comfortable enough to say “I’m not ok, and this is what I need”.
Also, any recommendations on those medic alert buttons?
Thank you in advance for any and all advice.
-Scooter
I would say if she is living on her own maybe an AL if she can afford it. It will be hard for you and her to manager aides when she needs them. In an AL she will have around the clock help. And if needed Hospice can be brought in when the time comes. She cannot live alone at this time, I would think.
Thank you again. Take care!
I agree with JoAnn; your SM needs Assisted Living at this stage of her life; she can't be living alone anymore, even with a Life Alert button. Seizures are common with brain tumors, meaning she'll need to be somewhere where 24/7 help is available to her and/or where she can be found quickly if she falls. You and the doctor will have to have an honest & upfront talk with her about her prognosis and suggested care plan for the future. POAs need to be set up so you or your DH can have the power to act on her behalf, both financially and medically speaking.
I'm sorry for this diagnosis. I certainly hope the surgery will be a success, too. It sounds daunting to face such a surgery; find out what the recovery looks like and if she'll need to go to rehab to regain her strength afterward. Wishing you all the best of luck with everything you're facing.
I just want to make sure that I can invite her to be honest with me and receptive to care. I can not imagine how it feels to be one who is so fiercely independent facing this. She’s still P. She still has dreams of getting back to traveling “once Covid calms down”. I refuse to see her spirit broken.
At any rate, it’s still sinking in. I very much appreciate your reply! Please take care.
In view of P’s character, my suggestion would be to tell her the hard news about the illness, that she has the brains to make a good plan for herself and for your sake too, and be ready to tell her some of the options she can choose from. Get her to say which things she would like you to research - don’t expect her to decide on the spot. I have a sister who is much the same way. I always need to stress that good plans will give her MORE independence, not less.
not know.
Also If she has a tendency to need hints to sound rosier than they may be, denial, not wanting to worry people or like my mom, selective hearing, take that cue from her. You don’t need to hit her over the head with the worst case scenario and nothing wrong with softening the blow as long as you aren’t lying. It’s unlikely the doctor is going to lie about prognosis anyway and may help them knowing you hear the facts at least. I would try to go to them in person with her so you have met them, have a chance for questions and let them know she has family is supporting her rather than just listening to a recording of her last visit.
One step at a time, you don’t have to tackle everything at once. She is very lucky to have you as I’m sure she knows.
We’ve chatted in general about the situation, but haven’t gone beyond that yet. She is a bit tired and not eating as well as she should, but will drink Ensure voluntarily when not hungry.
She did mention that she needs some more Ensure from Walmart this afternoon, and insists on going, although I hope she doesn’t plan to drive, because that’s not happening! Apparently, she fell in Walmart last time and just laid there for a bit until she could get up on her own!
She did schedule surgery for 08/31 to drain fluid and re-route the fluid pathway so that is does not build up again. There’s definite rehab after that. Just got to get her to that point, and, I guess, see how surgery goes to determine level of care thereafter?
Anyways, thank you all again.
Oh, one last thing - I guess she didn’t want my uncle (my father’s brother) to know as he’s got his own medical concerns. I told her that I had talked to him because he called me with his own concerns based off of recent communications. I respect her privacy, but can’t keep secrets from well-meaning close family members who want to help. Or maybe I messed up. I don’t know.
Are you talking about Normal Pressure Hydrocephalus? Or is her brain issue something else?
PIles of rotting berries and dishes in the sink? And "other messes"? Hmmm. Some folks can talk a good game for company (and in the doc's office), but their ability to plan out and accomplish day to day tasks has fallen by the wayside. It's called "executive functioning".
Have you spoken to the surgeon about what rehab is recommended after surgery? Will she go to a facility so she doesn't have to worry about meals, visitors and weather?
Ensure can be ordered online and delivered. I doubt your stepmom should be hauling cases of Ensure around right now. Look into grocery delivery for her.
The rehab post surgery will be at a facility, I don’t know which yet. I hope that there would then be a plan beyond that that would include recommendations from her medical team. However, honestly, I just want to get her safely to her surgery date, which may or may not be scheduled at the end of the month (I clearly need to clarify that tomorrow AM).
Right now, the biggest issue I see is the risk of falling, which she, apparently does regularly. Actually, the biggest problem is getting her take the falling seriously. She leaned over today to get something off the couch and fell. I caught her. She joked that it shouldn’t “count” as a fall.
She has osteoporosis and is a broken hip (or worse) waiting to happen.
she’s also confused about certain things, but the falling seems like more of an immediate risk.
On the phone with family this evening, she told them I’m leaving tomorrow. That’s news to me!
Tomorrow AM, I plan to call her GP who has been seeing her for 35 years (and who she just saw the other day) to see what he feels the immediate options are.
Edited to add: We (I) picked up lots of Ensure today, so she should be well-stocked for a bit!
https://www.mayoclinic.org/diseases-conditions/hydrocephalus/symptoms-causes/syc-20373604
The hydrocephalus is what's causing the balance problems, most likely. Does she understand that? It can very much cause confusion.
A colleague's 10 year old daughter woke up one day, had no idea who she was, couldn't remember that it was her birthday next day...it turned out she had a brain tumor causing hydrocephalus. They treated it with the endoscopic third ventriculostomy mentioned
in the article.
I’ve been reading a lot on this website about what everyone else is going through, and I do recognize that I have a ton to learn! My wish is that I could just protect her from everything. I can’t, and I do need to respect that her independence is so very important for her. I’m still working on the way I deliver my concerns. I guess tomorrow is a new day.
I remember, wayyy back in the day, I had an issue that required an intervention of sorts (an eating disorder). I remember how absolutely convinced I was that I was fine until one day I was able to see myself from that outside perspective and accept the help I needed. It’s amazing how the brain can convince one that everything is fine with all kinds of evidence to the contrary.
Anyways, I’m rambling and very much need to at least try to sleep. Thank you again!