Should I tell my children yet?

Wait until you have a definitive diagnosis. You don't know how they may worry, impacting their lives.

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.

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.

Good Morning,

It's ok to say you may need help in life. People getting sick (unexpectedly) is nothing new and it's really only this newer generation that doesn't want to be disturbed.

Nowadays there is more help--specialists galore, physical therapist on every street corner and Assisted Livings' (which is the new $$$ maker listed in all investment books) popping up all over America.

I love America, there is no greater country but something has happened that the elderly after WWII kind of took a back seat. Something happened where the reverence and standing in the presence of the aged entering a room is gone.

Why am I saying all of this. This independence thing on both ends this new way of life in the U.S. called "individualism" is doing people in. People are taking better care of their pets than the elderly.

Don't think because you cared for your mother you made a wrong decision. It's just that today's generation have no problem not helping their parents and going off skiing.

The same is true of their children. I have to work. Not really, you bought too much house and do you really need a BMW. People have overextended themselves.

I'm all for education. Don't get me wrong it's great when the next generation does well financially, educated, house in the suburbs but I honestly can't believe how selfish the next generation is. That parents feel funny saying they may be ill. We all need support whether the prognosis is serious or not.

If they do have children the grandparents have to follow the sports teams all over the State. In my day, the elderly were picked up and time was spent with them. The electronic devices are not enough.

It sounds like you are not sure if they (adult children) are going to step up to the plate. My situation, great parents, Sunday dinner, private schools, beach house in the Summer, ski in the winter, studied abroad--live-in grandmother, 2-parent family, dad worked, mom home full-time, Church every Sunday and the relatives visit.

Sounds good doesn't it...next generation. Sister went right back to work, my mom babysits daily and practically raises the kids. Brother came every for Sunday for dinner, mom babysits so his wife can earn a Master's--when his mother-in-law is in hospital with brain cancer they go on a trip to Paris.
When father-in-law passes tell mother-in-law who is 75 (never drove) you have get your license.

Hello out there, doesn't anyone hear me. What's wrong with this picture?

When my mother took sick the people that treated me the best were the grounds people who cut the lawn. The people from Latin America take care of their elderly. They had genuine concern. I love them. They are true Christians.

It sounds like what you are really saying is, "if I am really sick, are they going to help out?" Best you find out now so you will know how to proceed.

My mother too was widowed young. I have always been by her side and never regretted it. Unless you are in that position, no one know what it's like. I don't make excuses for living.

In my case whoever helps me in my old age gets whatever money is left. If it's the landscaper that's fine with me!

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."

You and I are different in that I share with my daughter everything going on in my life on pretty much a daily catchup, even if we simply text one another (she's several states away from me as well). She does with me as well (she had an MRI yesterday for her own issues). And while we own we don't want to "worry" one another, we also do not want to go through things without one another's support and daily concern. So we start out very different from one another. We do not expect one another to "do anything" about any issues in one another's lives, but we keep one another informed.
I will have to try to put myself in your position. I think that ultimately we do end up in the "same place". The issue it seems to me is not really your diagnoses, and I make that plural as you are dealing with several issues. You don't say your age or your husbands and don't mention his general health. For you, I am assuming he is well and your helpmate as my partner is now mine, though he is 82, and I am 80.
So for me the issue isn't when to tell the kids. You have not shared with them ongoing. So Perhaps at some family meet (Thanksgiving? Christmas?) there should be a sit down of "This is what I have notices, what I am being tested for, and where I am at "--just about as briefly as you have for us. I am assuming, again, that there is nothing you expect them to "do" about this.
The real issue is where YOU and hubby are at now in terms of lifestyle, size of home, ability to negotiate things in home. Have you already discussed and set up who would agree to serve as FPOA and MPOA and have you set that up with a good attorney. What are your assets? Is there thought of Assisted Living? Reverse Mortgage, and etc.
This really isn't an issue for your kids. It is yours and your husband's issue, and the way forward is still in your hands. I think it is well and right the kids should "know", and moreover know that there is nothing you expect them to do, unless POA if they CAN do this. Otherwise speak with a Certified Licensed Trained Fiduciary.
Glad you are thinking about this. You are clearly, from your post to us, very bright and mentally able at this time. You don't mention drastic mental disabilities or physical either.
I sure wish you the best. Hope you will update on decisions and how it goes for you.

My parents are 88 and 93. Mum (88) lives fully independently, 5 minutes from my house and Dad (93) lives with some supports in my brother's home, 5 hours from my house.

When stuff comes up with Mum, I let my brother know. Yesterday she started the discussion of downsizing. We looked over her current expenses and I did a financial plan (my profession) to show how much income she could expect from investing the proceeds of the sale of her home etc. When I got home, I called my bother to let him know.

My sister in law lets me know after the fact where Dad has a health issue. I appreciate that she does, but I wish I was told at the time that Dad was in the hospital etc.

If your family uses Zoom or Skype for group calls, set one up and tell them at the same time. Please ask them to have their spouse with them as they will need support to digest the information.

Ask your doctors if they use a patient portal with a family section where the kids can get updates. Or set up a Caringbridge account and ask a trusted friend to update it for you.

I agree that now is the time to get your affairs in order. Update your Will and POA documents. Please make sure the person assigned POA and your Executor have the capacity to take on those roles. Update your beneficiaries as needed.

If you and your husband use the services of a financial planner, tell them you are having a medical issue and ensue they have a copy of your up to date POA. Make it very clear what you do and do not want to happen with your investments should you not be able to give instructions in the future.

Plan your funeral. I know some find this ghoulish, but it makes life so much easier for your family. Talk to the funeral director about what you want. Tell the kids your plans so there are no surprises.

I also wanted to add - you say it might take a year to even get a diagnosis. Can you keep this from your kids for that long?

Speaking from a daughters experience.

My mom doesn't tell me anything about her health until it is a crisis. I live 8 hours away and this creates mores stress for me then knowing that she has something going on and is having tests.

It means I am scrambling to make arraignments to be present. When I could have been aware and making some early preparations in the event I need to head out.

This makes me feel like she has no respect for my life and it feels like games. Neither of which endears her to me.

It would be so much easier if she told me that she is having issues that require testing. It's okay to say, we don't know, so we aren't worrying, just want to let you know and I will keep you posted as we find things out. That is respecting the relationship and my life, not calling when the news is a crisis and tell me don't worry or ask for help.

They are adults and should be kept aware that you are having issues that need testing and please, please don't do this announcement at Thanksgiving or Christmas, that is so wrong and ruins holidays.

I pray you are okay and get answers sooner then later.

Monica, it seems to me that if your kids have half of the common sense that you do, they will not come running in a blind panic at the news that there *might* be some sort of a health issue. It seems that you are handling things with thoughtfulness and thoroughness, and your kids I am sure know this about you. I imagine you raised your kids to be the same way.

So here is where it gets a little hard for us parents of adult children (and I know exactly how you feel!!) - now is the time to trust your children to not "lose their minds" and give them the news that you have to have some further tests done, and you will keep them apprised as the situation moves forward. While I am sure they will express some concern, I imagine they will take the news in stride.

Good luck!

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.

I have just a practical suggestion, that you make sure to have POAs (financial and medical) in place before a diagnosis, in case it is something that would affect your legal ability to put one in place. All the best to you.

Monica - I'm so sorry to hear about your health situation at the moment - and I hope that your diagnosis turns out to be very treatable and there is a very positive and healthy outcome for you. Sending prayers for continued great strength and positive energy to you.

You sound like you have a wonderful loving family - and you also seem very strong - and from your words, clearly a very considerate and loving mother ...and I feel in times like these, it's best to share what you're going thru with them - it's important to have a support system and be embraced by family ....and I wish you the Best of Great Health and Continued Strength and Resilience for a positive outcome - and may this be behind you soon. XO

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.

Let your children know what you are dealing with. They can be a source of moral support and a great sounding board for decisions you may have to make down the road. While you are at it, discuss with them the idea of powers of attorney for medical and financial matters - if you need somebody to make decisions on your behalf (and your spouse isn't able to). Also talk with them about your wishes for hospitalization care - CPR/no CPR, feeding tubes... all things found in an advanced directive. Once you know what you want to do with those matters, get an appointment with a lawyer to write up those legal documents. It is always better to have the "worst case scenario" decided on and discussed in advance rather than wait until a catastrophe happens.

You have a lot of good posts. I would tell your children, however, I'm one of those people that if I lie or withhold the truth, I get found out real fast.

Are either one of them drama queens or suicidal? In that case, I wouldn't tell them. I think you need to tell both, the exact same story or tell neither.

When you do tell them, make sure that you also state that that you don't want them to disrupt their lives for what is happening to you. Also tell them where all the important paperwork (e.g. will, POA, POLST, trust doc, stock certificates, etc.) is located.

I also think it is worthwhile to tell them now so that they know a little bit about your medical history. As time passes, we are finding more and more health issues are influenced by genetics. If you really do have MS, it is possible that they will have it in their lifetime also.

Good luck in making the decision, then carrying out the decision. Its difficult, no matter which path you take.

My recommendation is to have a plan for yourself, if you become incapacitated. If you don't already have it, you need to set up powers of attorney for medical and financial matters, a living will with your advance medical directives, a will, etc. Usually your spouse is the first POA, and then you may ask one of your children to be the second POA, etc. Also, would you want to have in-home care, if you need assistance, or would you want to go to an assisted living facility? This depends on your (and your husband's) financial situation. You also need to have your POAs to be on file with Social Security and Medicare to be able to speak on your behalf. Many financial institutions have their own POA forms. If your husband is not able to handle overseeing your caregiving, your children may have to take on some responsibility for your well-being, if you become incapacitated. I think it is a smaller burden if you are in an assisted living facility, and you can do the homework ahead of time about where you would go. It might be easiest if you find a continuing care facility, where they can handle the different stages of incapacity. Usually it's best to be in a facility near your POA, so that they can visit often and make sure that you are getting appropriate care. Also set up your accounts online and set up automatic payments. This will also make it easier for someone else to take over. You may need an attorney who knows elder law to assist with the legal documents. Get all of your paperwork in order now. Regarding how much you tell your children, it may be best at this point just to let them know that you are getting your paperwork in order. You can send them a copy of your POA documents and advance medical directives. When you have the actual diagnosis, you might then want to tell them about your health issues. All the best to you. You'll have to be brave and strong to get through this.

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.

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!! ❤

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.

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!

From a person who has 30 years of legal experience, have your Last Will, Living Will, and POA all in order. I'm 62 and had mine all done years ago. My son, only child, has them in his possession. He is my emergency contact as well. He lives about an hour away. I have elderly parents that I take care of as much as possible that now live in walking distance of me. If my parents kept medical issues from me, and they try at times, I would be so upset if something happened to either of them unexpectedly. I found recently that my dad has lung cancer. I took him to his appointment and saw the doctor with him. He's 89 and had decided to have no treatment for it. I do understand his decision at his age. I would be devastated had I not known. I have illnesses as well and keep my son updated on anything really important. I don't want to be a burden either, but I don't want to suddenly learn I'm leaving this world. I love my parents and never think of them as a burden. They took care of me and now it's my turn. I hope this helps.

Try acupuncture and a Naturopath . I have gone the holistic route many times . No do t tell your children and even Then Personally wait .

Actually when my mother kept it from me that she was not feeling well, I was upset. I wanted to be there to help her. But, you know your children best. There is no need to rush things or make it more than it is. You could simply tell them right now that you have not been feeling well lately.

Praying for you to heal and to feel well again! God Bless You!

It’s better to share it with them and figure out a plan together. I’m sure they’d rather know in the early stages then to be hit with it when it’s a bigger problem with less options.

They know your age and what’s coming, I’m sure they appreciate your honesty and ask for their input.

My mother hid everything and expected us to figure out solutions to impossible problems much further down the road.

I would let them know. You say you never wanted your kids to 'give up things' to care for you, but with changes in the brain that may occur - you may find yourself saying something totally different. Let's say they are not informed. Six months from now, you begin begging them to help you, to let you live with them or near them, or have problems living in your own home. Maybe you will really mean to say those things because you become fearful or maybe you say those things because the disease creates some sort of fear in the brain.

It would be better that all involved understand the info you have been given and you have a plan to share with them. If you can't function in the home alone, use your money to pay for help until it runs out. Or, if finances are so low as to be eligible for Medicaid NH bed, put you there. If one of the kids says, if you reach that point, we would like you to move to our house/move to a facility close to us, then consider. A facility near them would allow for monitoring of the care you will get and make things easier for them - so don't put a nix on that idea too quickly.

This is also the time get your will done, appoint someone to act on your behalf for your business issues, bank accounts, etc as well as medical decisions. Do it while you have a clear head.

All of our journeys are mixed with bitter/ sweet moments… the bitter usually mingles with sweet. You are of sound mind( give or take).. we have to live in the “present” and we are hopeful for any tomorrow’s !
I can understand your dilemma and feel compassion towards you💕.
I am a writer, I write down most of my thoughts on paper. So, I say to you “ write” ( your concerns, wishes, desires) then when you get a definitive answer you should inform them. You do not have to travel that journey alone and who better than your children to walk with you!
Praying for a favorable outcome, be well and live in peace!❤️

I'd give them a heads-up you're going to get a definitive diagnosis soon, but this is what it might be. They will appreciate the time to soak it in, instead of being hit with it when it's too late.

Let them know the possibilities, as you said that if it's MS, things will come and go. let them know what you might WANT, but that you don't expect it of them.

And if it's not, and you feel like something's going south, let them know you'd love to see them for a weekend, but not for them to help you (if that's not what you want). Open honest communication will win out each and every time. It gives them time to digest and gives you the feeling you've been honest with them before it's too late.

Good luck

Because of this forum, I have taken charge of my end-of-life plans. I never want my children to be burdened with my maladies or medical care, if it comes to that. I don't want them to go to a mortuary to choose a casket or have to discuss cremation (that is my issue, not theirs). I decided long ago not to attend funerals, including my own!

I will be selling my home to downsize and start disbursing my belongings and making donations to charities that I admire, like the Boys and Girls Clubs and BigBrother/Big Sister.

I have gone out to visit independent living and assisted living where I can set the course of my next journey. I know that most young people don't want to hear our age related complaints and have little time to devote to relationships. I just decided to not discuss anything unless they specifically ask me, then I'll know I didn't corner them with all my complaints. God knows how many issues we have to complain about.........................I'm sick of hearing about them, too.

Setting an appointment with an Elder Law Attorney really helped me get clarity on the issues I needed to address and make plans; doing so has brought me great relief

Yes, bc then you can prepare openly, and everyone is on the same page. I'd tell the kids on a group call your will, end of life decisions and who gets what personal effects and why . Maybe make them both poa/executor or stsrt one of those trusts. That was one can't ice the other out. They both know everything.
I tried to get my mom to talk about her will, poa, anything. My sibling was in the background stopping it. When everything went south, I was deliberately in the dark. My sibling told me she was poa. Also tried to tell me she had my dad's will. She stole, she lied, she didn't have will. I had to get a lawyer. Don't go down that road. It is good you are able to do it now. Don't put your head in the sand.
Good luck.