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In the past year, I have felt myself becoming extremely "calm"...ME, whose middle name is Anxiety. 😆 I am 61 years old, have 2 children living in other states more than an 8 hour drive away, I am retired and my husband (second) is 8 years older than I am. I loved the new me... until I found my short-term memory getting worse (me, who was once told I had a "mind like a steel trap"). I had a headache lurking in the background most days, I developed binocular double vision (each eye has almost perfect corrected vision but can't work together correctly), and dizzy spells that started to go to vertigo that would cause me to fall down. I had also developed tinnitis in Nov 2020 but that greatly reduced when the vertigo began for some reason. My eye surgeon has referred me to a neuro-opthamologist and my family doctor sent me for an MRI.... which has come back abnormal.... with mild white matter disease, biparietal atrophy and multiple white patches. The radiologist put forth several possible causes including MS (my daughter was diagnosed at age 34), myelitis, vasculitis, etc. My family doctor is backing up my referral to the neuro-opthamologist. That appointment is not until early August.



My question is this.... My children do not live near me and I have....and always will... encouraged them to live independent, free, full lives. I gave up everything I wanted to do in life to be there for my Mom (Dad died when I was 19), get married, have children and take care of her in her old age... as she expected me to do. We always lived within an hour of each other and she eventually moved to where I lived, 10 minutes from me. She died in 2012. I vowed to NEVER place my own kids in that position. They are now both married, have no kids (which is fine with me!), son has a nice house in the mountains and daughter is settling on her first home next month. They both have good careers.



My question is this..... should I let them know what is going on with me now or wait until a definitive diagnosis, which may take many months or even a year or so? I feel myself declining, mentally and physically, but I do not want to disrupt their lives or place any undue burden on them. I do realize that, if it is MS, symptoms will come and go. But if it is something degenerative... am I wasting time not saying something to them? Many thanks for any advice y'all can give!

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UPDATE: So...I am going to talk with my son tonight. His dear wife will let me know when she is home so I can call him then. (She is a gem!! ❤) My daughter is in LA for a wedding this weekend so I will talk with her when she an hubs gets home.

I sort of don't have a choice at this point. My husband....who had an endo/colonoscopy 1 week ago...got a call from his GI that they have to go in again and do some further procedure due to a nodule they found on his duodenal bulb. They took biopsies. And his results are "delayed" on his portal. He did not ask what the issue was when they called him today. His procedure is 1 day before my neuro appt. So things are getting dicey here now. My kids must be told. Many thanks to all of you amazing people who gave me such great advice the past few days. You are all so wonderful!! ❤
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SDFinColo Jun 2022
Monica, I just came across your thread. How did the conversation with your son go?

Did you also talk with your daughter?

Any updates on your husband's biopsies?
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Tell them what you know, tell them at the same time that you are keeping them informed purely so that they need have no fear you will keep them in the dark, and tell them you will share any further information but only when it is confirmed so that they do not join you on some kind of horrible medical rollercoaster while investigations go on.

If you have that sort of family sense of humour, you can also tell them you will disinherit any child who fails to carry on "as they were."
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Monica19815 Jun 2022
Gread advice!! Perfect! Thank you so much! Makes sense.
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Can I answer questions you didn't ask? First, forget waiting to see the neuro-ophthalmologist. Get to a good neurologist ASAP. You need a diagnosis and a treatment plan. Any good neurologist can do that, including the VEP. No good doctor lets a patient with neurodegenerative signs wait for 2 months to be seen. Your case is urgent. If the neuro-ophthalmologist makes you wait that doctor isn't going to be worth waiting for. The double vision and vertigo should be addressed immediately so that you can function. Someone has to follow you to determine what symptoms are worsening and why.
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Monica19815 Jun 2022
I truly appreciate your response. I have actually been mulling over calling the neuro and asking that the appt be moved to asap. You have helped me make my decision and I will call tomorrow. Thank you!!
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You said you can't keep this info from your children for a year.........so that's your answer, I guess.

Me, I keep health info private from my children until & unless there is bad news to share with them. That's me. I've had 3 cancer scares over the past year (less than 1 year) alone. All the biopsies were negative. Had I called my kids with that news of impending biopsies, I'd have worried them for nothing. IF, however, those biopsies were positive, I'd have told them immediately.

My husband has been having one health crisis after another since 2019, I should add here. So they've known about him all along, and my DD *the RN* has been heavily involved in his care plan, etc. So to add ON to all that with MY health issues which weren't confirmed yet, I felt would have been too much. Again, that's me.

You have a DH with health issues as well, so you're kind of in the same boat. Plus you say you have a close relationship with your daughter, so maybe it's a good idea TO let her know what's going on. You are carrying a heavy load here, Monica, so that's difficult. While you're feeling calm, you're also processing a lot at the same time. I know I was when I was waiting for the results of my tests. The waiting is awful. So is trying to walk that fine line between not wanting to upset our children's lives and wanting their support during hard times. It's a delicate balance, isn't it?

Whatever you decide to do, I don't think there's a 'right' or 'wrong' decision. Do what feels right to YOU, in your heart, and go from there. I want to wish you the best of luck with the outcome here. My next door neighbor was dx'ed with MS about 20 years ago; she lives a full life (she's 55 now) and has flare up's now & again. She's on a regimen of IV's and various supplements and I know she sees a holistic doctor in addition to her regular MS doctor. She looks great and feels quite well, too. Just thought I'd let you know that.

Whatever cross we have to bear in life, we bear it and it's never hopeless, in my view of things. It's just something we take on and deal with/overcome with resilience, love and support from family & friends, one day at a time. Sending hugs and prayers your way, dear one.
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Monica19815 Jun 2022
Lea....such a thoughtful reply. Thank you!! Yes, the waiting is SO stressful! I thought the stress would end when the radiologist issued his report but, as my family doctor said, the MRI is abnormal but the reasons are "vague" and only a neuro can diagnose at this point. Could be MS, vasculitis, demyelination, microvascular ischemic change, Lyme disease 😲....any number of things. So, now, more waiting! 😠 I am so happy to hear that your 3 recent cancer scares all turned out to be negative. That is a LOT to deal with in one short year. And thanks for sharing about your neighbor and her MS. She was diagnosed at the same age as my daughter. My husband has suggested I go back to the naturopathic doctor I was seeing for anxiety 6 years ago. She does acupuncture and helped me a great deal back then. Even got my blood pressure down and my thyroid medication reduced.
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I’m sorry you’re going thru this. I understand what you’re saying, but at the same time I don’t think it’s fair to your children and grandchildren. I as a daughter and specially living far away would definitely want to know what’s going on. I would not like to find out when your condition has gotten worse. I’d like to know right away so I can spend more time with you and be there for support. It would be horrible to find out later. I would definitely tell them.
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What is your concern with telling them sooner rather than later?

If positions were reversed, how would you feel if they "held off" on telling you?

In my family, we have an understanding that we will NOT hold off telling each other (husband, myself and our kids) about possible medical issues. Many years ago my husband's brother held off telling him something about their mom's health, and she took a sudden turn for the worse and almost died. Because BIL had decided he didn't want to "worry" husband, DH almost lost his mom without being able to be there. Fortunately everything worked out ok, but it left a bitter taste in my DH's mouth about being "protected". So we have vowed to never do that.

If you were my mom. I would want to know sooner rather than later.
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Wait until you have a definitive diagnosis. You don't know how they may worry, impacting their lives.
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Do you have all your proverbial "ducks in a row"?
I would see an Elder Care Attorney or a good one that is well versed in Trusts, Estate matters and things like that.
Make sure everything is taken care of so down the road YOU will be taken care of. And you need to make plans on the possibility that your husband may outlive you. (You mention he has Alzheimer's there are Special Needs Trusts that can be set up in case something happens to you)
IF you think there is a possibility that you will need Assisted Living and potentially Memory Care consider now looking for communities that offer that and you and your husband can move when you are ready.

Now for the when to tell moment....
This is a personal decision. If I were faced with this I would not say anything until I knew for sure what I was dealing with AND had made my plans for the what comes next.
On the other hand if you were my sister I would want to know so that I could help you and support you through this. (and my sister is probably the one person I would tell through the process)
AND...if you were my daughter I would want to know so that I could support you and the family.
So now that this is all clear as mud it should be real easy for you to make a decision.
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Slartibartfast Jun 2022
I agree 100 percent. Get all your legal and medical paperwork done now so when you do know what you're dealing with and are ready to share you can reassure your kids that you've handled everything that can be done.
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If one or more of your kids is PoA for you, they should be told. If your husband is your DPoA I advise against this or at least have a secondary named who is younger, I.e. one of your kids. In either case they will need to be told sooner rather than later. My Mom tries to “protect” me from her health problems and knowing this, all it does is cause me to wonder what she’s not telling me & what ugly surprise awaits. I’m a problem solver, linear thinker so I’d give your kids some facts but emphasize there’s no final diagnosis. I would want their support during the process. It helps to be informed a little all along so there’s less learning curve when the final verdict arrives, and less shock and angst for them.
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Hopey1969 Jun 2022
I completely agree with you 🙏🏻
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Personally, from experience, I recommend having one offspring as a POA and maybe another as Health Care Proxy (or whatever it's called where you are), so that family members are involved; But I also think it's a good idea to have local appointees, and at least one professional, e.g. an eldercare attorney or minister, rabbi, etc. in the mix. We care for an elderly relative, but none of us are close by; She wants to remain in her home, and taking her into any of our homes would be extremely difficult, although as a last resort option, we'll go there. We have organized local friends and agencies to check in; clean her home, make sure she's eating/drinking... Life alert devices, cameras in the home... There is a great deal that can be managed long distance, with periodic visits and lots of phone calls (and emails, Facetime etc. if that's part of the equation) - And daily visits from those close by. It pays to be honest with your trusted friends and neighbors, so they understand your situation. If you are amenable, it's great to belong to a local religious denomination. Contact your local Council on Aging. You are still capable of making many of your own plans, so act on that now, to the extent that you're capable.
But I would most definitely let your children know. How they react to the information is their deal, but they should be informed.
Best wishes and good luck!
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