While hoping for the best what are you doing to prepare for the worst?

[Jules A]

Anyone have long term care insurance? I know I should get it, it's expensive..so I'm playing the odds and waiting for a while to purchase it.
Anyone have it?

I think that ship has sailed. It is my understanding that once you have a MS diagnosis we are no longer for long term care insurance. I was able to purchase a "modified" version through my employer but it only pays like $500 a week.

That in itself speaks volumes to me.

[Jules A]

An easy thing to do is to build an "arsenal" of supplies/devices/aids you might need at some time in the future. You can pick these up at yard sales when you see them for pennies on the dollar of what they would cost to buy if you had to get them new. This has helped us so much...not that I need any of them everyday, but have them available when needed. Some of the items you might include are: canes, a manual wheelchair, a rollator or walker, a shower chair, portable toilet chair, etc. These things have come in handy during an exacerbation, or after surgeries I've had. Mostly they're just stored in the garage, but when I need them we already have them.

Brilliant! Like you said they come in handy for other things like surgeries. Thanks for sharing this with us.

[Lendi]

I'm doing what everyone, well mostly everyone not children I guess, should do. No-one knows what the future holds MS or no MS. One can be totally healthy and have their future changed by a car wreck or any number of things.

So, I've made a list of password for my hubby who doesn't do any of the bill paying etc. I keep a file cabinet and have file folders labeled for insurance etc. I need to update my list of meds but that's important, too.

For my MS specifically, we're adding onto the house from the detached garage to the actual house. I have stairs to climb no matter what entrance I use and when it snows or is icy or my balance is just extra bad they're hard to navigate.

With the addition I won't have to go out in the weather to get to my car. We're putting in ramps, pretty ones, from the garage into the new room and from the new room into the rest of the house. We're adding a bathroom in the new room and it will be handicapped accessible as far as size and placement goes. If I need a higher toilet in the future that will be an easy fix.

Then, we're going to redo our bathroom with a step in shower and a seat. Even if I don't ever need any of this becaue of MS we're not planning on moving anytime soon and I have elderly parents who visit.

I'm planting more and more perennials rather than annuals in my flower beds so they'll look nice without a lot of effort. I have some cute containers where I plant annuals to give a splash of color but that don't need weeded or much work.

[JudySz]

Good for you. I have done nothing. We were forced to move and we are renting a one story home. That is it. Starting to cut back on buyng as much.....but I am more with Kathy, daily living is hard enough. I think aboutit and that is far as I get. I keep telling myself that I will not get worse. NOt really a good attitude or a very smart one, but that is me.

Judy Sz

[Seasha]

"Hope for the best, get ready for the worst, and take what God sends." Amen to this!

Jules - it looks like you've made some sound decisions, as well as others. The way I look at it, without sounding morbid, and with disease or not, the way the universe works is that we never know when the worst (death, catastrophe, tornados, total disability, etc) may happen. So it makes perfect sense to do some practical preparations in a many ways.

We moved to a 1 story house when I was still RR and doing well. Friends have given me a power scooter, a walker and a rollator when I didn't need it and sometimes use now. We are older so have our financial plans in order, along with wills and living wills. But, it's never to early to start!

Next on the list is a newer car w/o a stick shift One big mistake was cashing out on my life ins. during a bad spell we had. This I really regret.. Husband is good tho.

good thread, Jules!

[502E79]

Jules,

Lost my LTGF when I was 55. Within one year of dx (lung cancer) she was gone.

Began preparing for an uncertain future then.

Adjustment to being alone meant many changes. It was therapy to think of cleaning out, evaluating needs... the future I NEVER pictured.

Financial adjustments, accounts, redoing wills, purchased LTC insurance, selling vehicles, charity donations.... all were addressed and dealt with. Some still ongoing. But... Most important was my relationship with God. I now had one, even if late in coming. Ready for anything!

Three years later came the MS dx. Yes I'm ready, it cannot do anything to me now. It's not strong enough.

Jer

[salamandertom]

I am in my third year of college and because of my major and the way classes run, I will have another two full years left. I will graduate from my university with a BS in biology and a minor in chemistry and 144 or so credits the same year as my son graduates from high school. I plan on attending either medical school or graduate school. Either way, I am looking at 6 - 8 years of post bach work. If I do the PhD - I will still have another 2 years after I finish doing post doc - so that is really like 8 years too.

I read on here a statistic the other day that the average to disability after diagnosis for MS was 10 years. I have 10 years from now until I can even [B][I]start[B][I]working. But, even though I am a realist, and I know that I will probably fall closer to the 10 than further - I will not give up my dreams and goals. I will continue to move towards them. MS will not take them from me. It has already taken some of my vision in my right eye, a lot of my short term memory, and most of my patience. I will *not* let it take this. I always told myself that I would have time for school after my kids, and later. Mothers always put themselves on hold. Now it is possibly too late. I will go until I cannot go anymore, my doctor told me that it will actually help my brain and I believe him.

So, we plan on making our in law apartment into *our* place to live eventually. There is a kitchen, and the woodstove in the winter and it is very cool in the summer. Perfect when I finally throw in the towel.

LOL. I am remembering something my teacher says to me when I am pipetting a very small amount of a chemical into a sample for the first time and I say it seems like there is nothing there at all. Is she sure??? She tells me that I have to believe. Well I am going to believe that I can do this and have this, even if I can't. Because honestly - it might be the only thing that keeps me going.

So, preparing for the worst for me would mean that I had to stop, that I could not work anymore. I cannot prepare for that. I don't know how.

[Bob698]

An easy thing to do is to build an "arsenal" of supplies/devices/aids you might need at some time in the future. You can pick these up at yard sales when you see them for pennies on the dollar of what they would cost to buy if you had to get them new. This has helped us so much...not that I need any of them everyday, but have them available when needed. Some of the items you might include are: canes, a manual wheelchair, a rollator or walker, a shower chair, portable toilet chair, etc.

This is a good idea but I went the other way with it. My folks tended to be horders so it took me the better part of four months to clean out the house and out buildings after they passed. At one point the local landfill told me I joined the 20 ton club in terms of how much stuff I threw out.
Since then I went the other way and keep stuff on-hand to a minimum if I don't need it. It makes life so much easier if I have to move. Its also easier on cleaning day when I don't have a ton of stuff to dust or move around.

[Jules A]

I have 10 years from now until I can even [B][I]start[B][I]working. But, even though I am a realist, and I know that I will probably fall closer to the 10 than further - I will not give up my dreams and goals. I will continue to move towards them. MS will not take them from me.

I really admire your passion but think there are times when it doesn't mean you are giving up by modifying goals to adapt to present circumstances.

My career time line isn't as long as yours because I was 40 when I was diagnosed and started back in college but I was able to work about 30 hours a week so in the three years it took me to get my RN I also made over $100,000.

I'm in grad school now and still working as much as I physically can. That is my middle finger salute to MS for as long as I am able to anyway.

[Bob698]

So, preparing for the worst for me would mean that I had to stop, that I could not work anymore. I cannot prepare for that. I don't know how.

One way to look at worst case planning is to think about the most stable thing in your life. Then, take it out of the picture.
I know its morbid, but people lose big things like homes and jobs and mobility- and they don't have MS to deal with.
Bad things happen and the world doesn't stop while we figure things out. That's why its important to think this stuff through while its just a game.

[sunshine008]

i have to say really good thread and personally for me an eye opener. i'm newly dx'd and well i never gave any of this any thought at all.

I should and i don't even know where to begin right now. i feel like my life isn't set with the way it is. so i guess i have alot of work to do.

thanks for giving me food for thought

[Jules A]

One way to look at worst case planning is to think about the most stable thing in your life. Then, take it out of the picture.
I know its morbid, but people lose big things like homes and jobs and mobility- and they don't have MS to deal with.
Bad things happen and the world doesn't stop while we figure things out. That's why its important to think this stuff through while its just a game.

The world sure doesn't stop for us, darn-it! I didn't want to make a career change at 40 but clearly needed a plan B, now saving money for if/when I can't work is my plan B.

It makes me sad that I would need to think of this in my
40s but like you pointed out bad things happen all the time and I guess in a way we just have a bit of a peek into what the future could offer and a chance to try and get our affairs in order.

Thanks to all for continuing to share your insight.

[Scooter24]

I agree with CasinoKathy- who wants to do this, my god if people are handling thier lives like this everyday no wonder so many have are having problems dealing with thier MS, Last time I checked with my neuro he hasn't put a time limit on my life such as 6 months, a year etc.

I know people who have or have had cancer (myself included) and they have not started adjusting thier lives anywhere near as much as some have posted here.

Just reading some of these posts it makes me wonder if people have thier funeral clothes laid out somewhere or hanging on the back of the closet door. I'm sorry as I am sure this post will get some people very upset with me, but I look at it the other way from the point of view from newly dx people coming on here to read our posts for guidance and thinking they have to go right out and buy a plot and and finalize all of thier personal affairs within the next month or so.

[salamandertom]

my god if people are handling thier lives like this everyday no wonder so many have are having problems dealing with thier MS, Last time I checked with my neuro he hasn't put a time limit on my life such as 6 months, a year etc.

I know people who have or have had cancer (myself included) and they have not started adjusting thier lives anywhere near as much as some have posted here.

.

I don't have my life all that mapped out either. Well I do, but it probably won't happen the way I want it to, because I am aiming pretty high - almost ignoring my MS diagnosis.

I am glad that you survived cancer and can live with your MS the way you do. This is how *you* get through it. Different people adapt differently though. Your way will not be *the* way for everyone.

Some people NEED to plan and have everything all laid out and I guarentee you that some cancer patients had their plans carefully set just like some MS patients do.

The point is that we are all doing the best we can to survive. We will all do it in different ways, just like our MS is different.

[jumpinjiminy]

Jules, I was informed I was no longer eligible for LTC insurance even without the dx. Just the amount of testing that's been done in the last year was all it took. But I did qualify for a STC policy and have decided to go with it just in case. My husband has his own health issues, our son is still young, and my daughter has enough on her plate trying to get herself started in life. There is no way I want her to have to worry about me.

The only other thing we're doing is clearing out the clutter in case we ever have to move, doing more perennials, cutting back on the gardens, etc. I already had to use my food storage a lot during the last year and am so glad I stocked up when I could get through the store with cartloads of groceries more easily. It served us well while I was out of commission for a few months last year.

I'm still working on the work issues. I've got some writing gigs I can pick up at any time if needed and it's a nice fill in because the massage work is too taxing sometimes.

I was all set to go back to school for an MSW, but decided against it when my memory went last year. I don't retain information like I used to and keep waiting for it to come back. You know the spoon theory, and it's all I can do to keep up with the basics at home with the family and do a few massages here and there. I can't imagine lumping another commitment on top of it.

Maybe in time, as I work on getting myself healthy again, it will come back. But I'm not going to take on anymore debt at the moment and intend to do the opposite with whatever skills I have now.