What happens when it's me?

Golden, CO(Zone 5b)

After the last year with my Dad, the thought is in my mind of what do I want to happen when it is my turn to need help. I think it is foolish to bury my head in the sand and pretend it won't happen. I fully believe medical science has the ability to prolong my life longer than it has the ability to fix whatever is wrong with me. I'm working on a living will, but with the experience of this last year, that doesn't cover everything, becuase there are lots of intermediate steps, and decisions, and then we get back to what I said about medical science. So, I need a plan and it probably won't include winning the lottery and hiring private nurses.

Do I want my kids to take on the job that we did with Dad? No, not really. Much as I would like them to be around, I don't want them having to change my diapers! So, the only other option seems to be long term care insurance. I'm beyond the age of needing to carry life insurance to assure my kids security, so that money could go toward LTC insurance. But is that the best option?

Are you guys planning for this? If so, what do you plan?

Denver Metro Area, CO(Zone 5a)

Hi Terre,
You know that I'm worried about my oldest outliving me...she needs so much care. We are looking into estate planning for that possibility.

If that doesn't happen, then I'll be in the same boat as you. Have you researched cost of longterm care ins.? I haven't....
me (Diane)

Golden, CO(Zone 5b)

No, it is something that needs done. Of course, my list of what needs done is so long if I ever get it done, I won't need LTC. I'm still kind of sorting this issue out in my head, because I'm not sure what I want the insurance to cover.

I read online somewhere about a man who had his wife to care for, and was very afraid that she would outlive him, and since she was his sole heir, his estate would be enough to kick her off medicaid assistance. He set up something called a "bubble gum" estate, so that any money from his estate would not prevent her from receiving medicaid. But since medicaid doesn't cover "non-essentials" , he arranged for his money to go to the Bubble gum estate so there would be money for her extras, but not screw up the medicaid that paid for the primary care.

Denver Metro Area, CO(Zone 5a)

They don't call it that, here...but the idea is the same. I only hope that we have something left once we are gone!

We have been putting off the estate planning for years, now. After all, nobody thought my oldest would have a fighting chance to survive to be 4 y.o.--and now we're 12 yrs. beyond THAT! (Wish I could take credit--God is good).

We did get the name of the lawyer with the most experience at this sort of estate planning in CO, so it's just a matter of getting an appt.

You LMK what to look for in LTC ins. and maybe if the kids both make it to school this week, I'll look it up? (One missed all week--respiratory virus).
me (Diane)


Hi Terre, it was suggested to me today that I look into long term care for myself. I am still dealing with Ethan's loss and all of his life insurance today. Filling out form after form until I am once again exhausted. I go to the Attorney this week also - such a crash course for me. Ethan was a CPA and of course set up and monitored all of these policies and etc. My head is swimming with all of this, but if I understood a little of the long term insurance today, the cost depends on the type of coverage I would want. I will probably wait until this winter until I actually look into this insurance for myself - when I have more time. I will be watching here for ideas on the subject.

Golden, CO(Zone 5b)

Donna, I'm so sorry for your loss of Ethan. I can only imagine how difficult it is to lose your husband, best friend, and partner. You were in my thoughts, and I didn't realize that he was gone until someone posted.

I have been just starting to look into this type of insurance and found, like you, that cost depends on what care you want. That is why I started this thread, because I'm not sure what I want, or how to be sure to address as many scenarios as possible. The way things work for me, whatever coverage I don't buy, will be what I need.

I sure hope you have help to deal with everything that is on your plate right now. If not, make them write everything down, because it is so difficult to remember everything.

If there is anything I can do to help, please let me know.


So.App.Mtns., United States(Zone 5b)

Well, I am in the same boat, but without a life preserver. I have no real property, and no saved money, and only my meager SS income. I guess if it comes to long-time care for me, I will be in the care of the State, as my mother is now.

What I DO NOT want is a lingering with no quality of life, which is what she has.

Carmel, NY(Zone 6b)

Be sure to fill out a living will with a DNR (Do not resuscitate). And be sure the document is handy - EVERYWHERE.

Does your Mom know she has no quality of life? Sometimes our minds protect us from our bodies and it's really tougher on those left behind.

Darius - I hope this doesn't sound cold or insenstive, but in some ways you are probably no worse off than someone with alot of money. When it all comes down to it, quality of care in a skilled nursing facility is not better for a private pay individual than a medicare patient - we treat all of our people the same. For the most part, care has gotten so much better for the elderly. The administrator at one of our facilities gave the nicest in-service a couple of weeks ago. He asked all non-medical staff to go out of our way to look for new faces and to introduce ourselves. Hi, my name is so-and-so and I do such-and-such. Welcome to your new home and be sure to ask for anything you need. We are all here for YOU!

Sorry, Ter - didn't mean to hijack your thread. Just wanted to offer my 2 cents.

So.App.Mtns., United States(Zone 5b)

Sequee... I think my mother lives mostly in her mind where it's more pleasant... lots of fantasies.

She has a DNR and I plan to get one for myself. Thanks for the reminder.

And, I think you are right about the quality of nursing care.

Golden, CO(Zone 5b)

We've had some issues with a DNR and didn't realize exactly what choices there were until they were made. After watching Dad struggling to breath and panicking, Mom decided that NOT assisting him breathe was cruel. However she also wanted to honor his stated wishes of "no life support.". She wanted resusitation for breathing problems, but if his heart stopped, then no, leave him be.

Apparently, this is not possible. Definitely it wasn't part of the overly simplistic document presented to us as "state required" by multiple facilities. We were told that if we requested resusitation for breathing, that made the DNR on heart stoppage null and void.

One of the things we learned, there are many definitions of "life support" You actually need a "living will" that spells out definitively what live support means to you. And things that mean life support at one spot in your lifes journey do not necessarily mean that at a different time.

We didn't realize that life support can include not only CPR, dialysis, surgery, and blood transfusions, but also tube feeding, and even antibiotics. When we checked into hospice we were informed that they would not provide antibiotics. And some of the choices, such as tube feeding, were made when it was done because he had trouble swallowing food with the expectation that therapy would help and he could go back to eating. At what point should we have honored his "no life support" wish?

I know that he hated being trapped in a body that wouldn't work the last 6 months of his life. But to me, it was too late to withdraw the tube feeding.

Although it doesn't address everything, the Five Wishes is better than the document provided at most medical facilities. There are places to spell out what life support means to you individually. There are statements to agree or disagree with such as How comfortable I want to be, How I wish people to treat me, The person or people chosen to make decisions for me, if I am unable and exactly what decisions they can make and how I want them made. No, you cannot anticipate every possible situation, but it will give guidelines to make your loved ones life easier. Making these kinds of choices is extremely stressful.

Sorry to get on my soapbox.

This message was edited Oct 11, 2004 9:37 PM

So.App.Mtns., United States(Zone 5b)

Good information, Terre. Is The Five Wished a prototype document somewhere?

Golden, CO(Zone 5b)

I got if from one hospital group here Exempla. But you can order them from www.agingwithdignity.org

So.App.Mtns., United States(Zone 5b)

Thanks, I'll look into it when I'm not so sleepy... almost midnight here and I need to go to bed!

Panhandle, FL(Zone 8a)

Very good information Sequee and terre, thank you for sharing that. My mother is 83 and I think she will be interested in this.

Stanford, CA(Zone 9b)

Just wanted to thank all of you caregivers out there. I am disabled and my husband is an angel - but friends call and ask how I'm doing and they really should be asking about him! You are truly unsung heros. I hate to eat and Marty is always trying to feed me, I get cranky because I'm in pain and he lets me vent, (we try to get the disease to be the problem so we can be mad at it together). I don't really know why he's still around. It would be easy enough to leave. But like the rest of you he has chosen not to do that.

I see it from the other side and I want you to know that I'm filled with gratitude when I read all of your posts. My children have chosen to avoid helping me and, while I understand completely, I know what happens when people like you make a different choice.

I am sorry for the financial problems. You should not be having to deal with them in addition to your constant work. If it were in my power, you would get all of the help you need, an advocate to deal with the medical and financial problems, and a week at a spa followed by a week of shopping! I don't know, maybe you have a different dream. Whatever it is, you deserve it even if it seems out of reach.

I hope that I have not seemed preachy but it is hard to put my feelings on paper and make them mean what they do. There are tears in my eyes because of the incredible work you do. Maybe that is the best I can say.

So.App.Mtns., United States(Zone 5b)

Terre, I just read the Five Wishes, great document!

One of the first questions in the hospital last week was if I had a Living Will, which I do not right now. However, it is certainly time to do something about one.

Golden, CO(Zone 5b)

I liked the five wishes document a lot, not only because of the thoroughness with which it addresses the subject, but because of the gentle, non confrontational way it presents the choices. It is not a cold. dry document, as were the DNRs we saw. It allowed me to present different choices to my frequently paranoid mother without her feeling attacked, or threatened. It has also sparked some meaningful conversations between DH and I, on a very sensitive subject. As well as I thought I knew him after nearly 30 years, I am still learning, and I think it is better to discuss these issues now, rather than wait until it is no longer an abstract.

I will, however, think long and hard about the section where it offers choices based on a doctors estimation of quality of life. We had a neurologist tell us that Dad's mind was swiss cheese in October of last year, and we should put him in a nursing home, because he knew nothing of what was going on.. A month later, he enjoyed his last Thanksgiving with all of us. He knew we were all there, he enjoyed the food and the laughter and the love. He smiled. Had we trusted that doctor, none of us would have had that memory this year at Thanksgiving.

So.App.Mtns., United States(Zone 5b)

Good points about your Dad and Thanksgiving, Terre. Glad you had him for one last Thanksgiving with family.

Since we started this Forum, my health has noticeably declined. 2 weeks ago I was diagnosed with moderate to severe COPD and now need O2 24/7. Since my only income is SSI and I have no real assets, I applied for Medicaid Disability last week, to help pay for oxygen and meds.

Because my SS check is slightly above the poverty level in NC, I will have to meet a deductible of over $4,000 every 6 months before Medicaid will pay anything. What that boils down to is my income every 6 months from SSI is $5640 and I'll have to spend over $4,000 of it on meds/hosp/O2 before Mdicare will help me. Don't see how I could make it on $1640 over 6 months for living expenses, so it basically means Medicade is of no use to me. Which also means I can choose O2 and inhalers or food and shelter.

I will be elgible for Medicare insurance in another year but I don't know what deductibles I will have to meet then.

Golden, CO(Zone 5b)


Nasty as the thought is, you might have to consider moving to obtain assistance. Having dealt with both medicare and medicaid over the course of the last year, I can understand the frustration. Even though my Dad was 77, and had been on medicare for years, it wasn't enough when things really got bad. Many people going into nursing homes learn this. Medicare doesn't pay for a lot of things, and even a good medicare suppliment, which we had, doesn't cover everything.

From what little I know, although medicaid is a federal program, it is administered at the county government level. Denver metro is comprized of 5 counties, and as we ventured into this nightmare, we learned we were fortunate enough to live in the most lenient county. Each county is allowed to set their own rules and regulations. Because Dad was married, Mom was allowed to keep her home, one vehicle of any value, and up to $90,000 in assets. Had Dad not been married, that asset level would have dropped to $2000. His income was very similar to yours. It also went to Mom, because of cost of living. Medicaid didn't touch it. Again, had he been single, his income would have gone to the county except for an allowance. Keep in mind, we were dealing with medicaid for a long term care solution. I do not know what the income situation would have been had he simply been trying to live at home and receive assistance with medicine and oxygen.

It would appear that one solution to your problem would be to live where your income is not above the poverty level. This next year might be a good time to start checking into what medicare suppliments are available in your area as well. One of the reasons we moved Mom and Dad to Denver three years ago, was for that. The medicare suppliments available to them before that covered very little, provided no prescription drug coverage, and cost them over $100 a month each. When we moved them to Denver, we were able to get them a suppliment that provided all generic meds, up to $1500 in non generics, as well as a variety of other things, and cost them $39 each per month. We did learn that the suppliments that we were fortunate to obtain, didn't exist in the rural counties, which is really a crock. Your medical well being shouldn't depend on what county you live in.

Check out medicare.gov, to see what suppliments are going to be available in your area.

So.App.Mtns., United States(Zone 5b)

Sound advice, Terre, Thanks.

I did look into Sec 8 housing in town last week. Assuming I might qualify, my nominal rent would be less, but when everything was added in, I'd only save $45 a month. Cannot pay someone to move me for that, LOL. Plus, I'd have no garden area and as long as I'm able, I shall garden. (As of late September Sec. 8 housing qualifications now state "mobility impaired" where they used to say "disabled".)

I have considered looking into another area, maybe even another state, for better medicare/medicaid benefits. January will be a busy internet search time!

Frederick, MD(Zone 6a)

Don't know if this is any help, but although this is Nevada, just click on the drop-down for any State - maybe there will be some good comparative info for you.


So.App.Mtns., United States(Zone 5b)

Thanks, Dea. I'll check it thoroughly. All help appreciated!

Summerville, SC(Zone 8a)

Hello All, I wish this had been here when my mom and Dad where sick . You people have some great info on here and being the only caregiver for my parents for 7 years I know how all feel . I am on disability also but god gave me the strenght to honor there wishes and keep them home but I have to say it is not easy but I am at peace with it. Hopefully over time we will learn better ways that can help us when it is needed and the care can be there.
Blessing , Carolyn

So.App.Mtns., United States(Zone 5b)


Crossville, TN

Five Wishes was implemented first in Florida...even then Gov. Chiles and his wife signed one for them selves....little by little it is being OK'd in more and more states. I showed it to the V. A. Hospital...don't know if they ever accepted it or not.

As to what I think will happen to me....Just yesterday I told my DD (who is to be my caregiver if possble) that I would be in a state of not knowing where I was before she had to take me in...

I have also told my DD's that they could put me in a Nursing Facility, with out a guilt trip on them selves, IF...they came to see me and checked to see if I was being cared for as good as possible. If they didn't come to see me on a regular basis...all promises of guilt-free was OFF!! There are two well run facilities near us...so I think that would be fine by me. Jo

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