How to help from afar?

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tashacave Asked October 2023

How to help from afar?

My mom is 68 and has had dizziness and falling issues for a long time. She's seen multiple neurologists, but they never had an answer for her. For a few years, she was on a drug called Geodone, which lists many of her issues, but she was also under a lot of stress because at the time she was caring for my sister, who has borderline personality disorder. In 2021, she had an awful fall. It wasn't good. Since then, she's been bedridden. Now she has a massive fear of falling again and cries out when you touch her or try to help her into a wheelchair. She got COVID two weeks ago and is now in rehab. It's just been one thing after another. I live across the country from her, which has been so hard. My dad is very controlling of her care but also doesn't do a great job. In fact, I suspect he is seeing someone else. She was hospitalized for five days before he brought her a pair of pants and the nurses were about to have to dig some out of the donation box. Watching all of this from afar is painful, but I have a job that isn't flexible, and in addition to that, my dad doesn't want to give up control. I'm mostly venting because I am wracked with guilt. I love her so much, and she would hate to see what she has become and the treatment she's received. It's hard to accept that this is the hand she has been dealt. She gave so much and is now left with so little. I call her multiple times a day, but in her state, she seems disinterested. I made her a mix, hoping the music would help. And send her flowers, and I will see her in a month. Is there any advice on what else I can do from afar with so little power?

Alzheimer's & Dementia Guilt Long-distance Caregiving Parents

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score 2 · Answer 1

Tasha, I don’t think this is on your current wavelength, but I’m putting it in just in case is becomes relevant for your parents. The site often refers to the ability for couples to separate their assets. If your father thinks that AL for your mother would use all of his own assets (which is probable as she is only 68), separating the assets might make it more possible for him to consider. Just tuck this option in the back of your mind.

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score 1 · Answer 2

I'd be horribly resentful if my dad had another woman while my mom was left for 5 days w/o pants, let's face it! And with you being so far away, the whole situation must be anxiety inducing and very sad for you, I'm sorry.

Dizziness is a medical mystery, as is the whole vestibular system, unfortunately. Its not so easy to get a diagnosis on what doctors are clueless about. If the dizziness does not stem from one form of vertigo or another that can be fixed with the Epley Maneuver or Meclizine, they're all stumped and scratching their heads. Leaving US to suffer alone. I feel for your mother.

Here is a link to an article from the New Yorker magazine on the subject of dizziness being a medical mystery. Someone sent it to me and I'm passing it along to you:

https://www.newyorker.com/culture/annals-of-inquiry/why-dizziness-is-still-a-mystery?utm_source=nl&utm_brand=tny&utm_mailing=TNY_Daily_101123&utm_campaign=aud-dev&utm_medium=email&utm_term=tny_daily_digest&bxid=5cb4e19d3f92a41c2fac1167&cndid=29689034&hasha=de4ba640c141be2475cd0fbfa0a6794d&hashb=09fe2f5e7c0bde182e6ee3e4c4a0a723ea43657d&hashc=01a3bc0c0bd7e53e67c204cadd985f2c8ea7ac5f13d4d75adf500e9a9ece8ab3&esrc=AUTO_PRINT

I don't feel like YOU are the family member that should be wracked with guilt over something you have no power to fix. Dad, on the other hand, is the one who's dropped the ball and doesn't appear to be feeling guilty, sadly.

Employers of 50 employees or more are required to provide FMLA leave to all employees under the U.S. Dept of Labor laws. That's the Family and Medical Leave benefit which would entitle you to spend more time with mom. Look into that benefit where you work.

In the meantime, I can't imagine what more you can do than you're currently doing. Wishing you the best of luck with a difficult situation.

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This is such a thoughtful and helpful response. Thank you. I've obsessed about finding answers for years, but it just seems there are none. Reading that article gives me some peace. Thank you for the FMLA info as well. That's also incredibly helpful. As I'm sure so many people on here have, I've had my own health issues pop up just from the ongoing stress of all this. And the pants thing, yes, infuriating. It's just the basic of care, and my mom deserves that. I'm trying to be kind to myself while not giving up - recognizing I can only control what I can control. I am lucky that where she's at currently, they do seem to be giving her that extra care and communicating to me her needs. I just worry about what's next - especially if she goes back home. Thank you again. Just to be heard means the world. Everything can feel so dark, but your kindness brings a little light.

(2)

score 3 · Answer 3

Tasha, just a couple of thoughts. You “suspect Dad is seeing someone else”, and my guess is that you resent it. That would be enough to stop you and D having a genuine conversation about M. In view of your parents’ ages and your M’s long term problems, it would actually be understandable if D was focussed elsewhere. If so, there is nothing you can do about it, except perhaps to accept it. Marriages do break up under stresses like these.

Why is he is “very controlling of her care”? It could be so that his other interests don’t get investigated. It could be financial. A good AL might set them both free.

Because of your own life, there is not a lot that you can do in person. How about your sister with ‘borderline personality disorder’? I’m a bit dubious about ‘mild’ ‘borderline’ diagnoses that let people off the hook. Is there more that she could do?

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Thank you for your response. Unfortunately, my dad has always been controlling and not a communicative person. And the stress of all this has made those traits worse. I am so patient with him, but he won't let me help, and that's all I want to do. I know this is hard on him as well. I just want my mom to have the care she deserves, and he doesn't let me be a part of helping with that, which is strange because like you said, he does seem to want to escape from it and focus elsewhere. Luckily, my sister has been in a better state the last couple of years, so she has been able to care for herself more and make better decisions. In fact, she had been a help to my mom, while in the past, I had resentment there because I felt like she was a danger to my mom. Thank you so much for your response. I appreciate you taking the time.

(2)

score 2 · Answer 4

Yes, I can well imagine that you are wracked with guilt, because it sounds as though you have ZERO idea of what is going on here, Your Mom is only 68 and without a diagnosis. And this has been going on for years. It is time to find out what is happening here.

You are right, your father is not a good advocate for her at all.
Your being this far away there is no way you can manage or help any of this or even know if your mom is safe in the care of your father.

I am going to suggest that you take advantage of the family leave act. It is either that or stepping away entirely knowing almost NOTHING about diagnosis, prognosis, or daily care. 68 isn't a lot older than my own daughter. Something is missing here, and basically it starts with a diagnosis.

Who, by the way, is in care of your sister at this point? Surely not Dad? I hope I have right that this is your MOM who was caring for the sister, but that it is your MOM who is currently bedridden.

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Thank you, AlvaDeer! The unknowing is the worst part. I've spent so much time trying to get answers - but like you said, it's hard being so far away. I have made frequent trips, but my father likes to control her care and doesn't communicate what's going on. I have to piece together the situation between him and my sister, who has her own mental health issues. I think I will look into the FMLA because I just am not getting answers here. Luckily, my sister has been on a medication that has regulated her issues, and she's been in a great mental state this last year. A massive relief during all of this. She used to have no empathy and was cruel to my mother, and now all she wants to do is help. She's just not capable of doing as much as I could if I was there. I truly appreciate your response. Thank you.

(1)

How to help from afar?

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