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!
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.
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.
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!
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."
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 daughter and I have a relationship just like yours and your daughter. We text daily, tell each other everything. My reluctance in telling her anything now is because her good life has just begun. Married 3 years ago, brand new career in her field, just buying their first house, husband is a renowned physicist and just about to start a big research project in addition to teaching at a university. My own Mom dictated what she expected me to do and be since I was 20 years old and I missed out on SO much in my life (though I would do it all again....I miss her!!). I don't want stress to be added to my daughter's life unnecessarily right now. She has a lot on her plate. My son is also getting a promotion next month and his wife had a traumatic horse accident almost 2 years ago that she is still recovering from....still needs a major surgery this year.
Then again, I know my Mom did not tell anyone about her knowing intuitively that she had cancer.... even her doctor (who is my doctor also)....until it had metastasized. I wish she had told me so that I could have made arrangements for her to stay in her home until she died....which was only 6 weeks after diagnosis.
I am fiercely independent. I don't want to stress out my kids or make them feel responsible for me. My husband and I had already been working toward making our house an "aging in place" home. All our ducks are in a row legally and have been since we married 8 years ago. My (now our) attorney has been thru everything with us the past 12 years and I joke that I should adopt him.
It is just so hard to know what to do!!! Especially knowing my Mom only lived 6 weeks from diagnosis to her death. I am sure this is not my situation but it does make me think.
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.
😆🤣😂🍻🥂
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.
I guess that, if I do choose to tell them now and assure them not to worry or change their future plans in any way, it would be on THEM if they don't accept that and they end up stressing themselves out. 😉
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!
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.
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
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.
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!! ❤
Did you also talk with your daughter?
Any updates on your husband's biopsies?
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!
Praying for you to heal and to feel well again! God Bless You!
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.
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.
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!❤️
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
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
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.