Sign, Sign, Everywhere a Sign

img_0044Sign, sign, everywhere a sign
Blockin’ out the scenery, breakin’ my mind
Do this, don’t do that, can’t you read the sign?

“Signs”  by Five Man Band

This weekend I placed signs in my yard. Signs for the Walk to End Alzheimer’s  in our area. These amazing events are going on all throughout the country over the next month or so. They are the primimg_0019-1ary fundraising events for the Alzheimer’s Association. Sticking the sign in my yard, and particularly that sign, when we are at the time every four years that I usually am putting a presidential candidate’s sign in my yard, brought me back to 2008 and the time that my mother was living with me. Or more appropriately, with “us” since my brother Richard had moved back from New Mexico to care for my parents in my home. My son Ken was with us too, and also my other brothers also came to help out and give Dick and me a break.

My mother was an extremely well-read and intelligent woman. So when she was in the decline from Alzheimer’s, reading was one of the things that remained with her even into the later stages of the disease. As caregivers, we used that to our advantage. As many caregivers do, we often found ourselves repeating things because mom would ask about something over and over if it were an issue she was concerned about. We learned that if we wrote down the answer she would find it for herself. After the fourth repetition of “now what are we making for dinner?” I would write out: “Dinner Menu for Tonight: Baked Chicken, Potatoes and Salad. Carol is cooking. We eat at 7.”

The handwritten menu was really more for my sake than Mom’s. She had been the domestic commander-in-chief for 60 years. She was in charge of all the “washin’ cookin’ and cleaning.” It was completely natural for her to be concerned about what was going to be done for dinner. And it was completely natural for her to want to ask about it. The dementia simply took away her ability to remember that she had just asked five minutes before. It can be an extremely frustrating situation for a caregiver, but after awhile we took it in stride, and coped with things like written menus. My son Ken took the opportunity to try out different answers sometimes. I remember him telling Mom – in the space of a half hour – that we were having frog legs, squid and brussel sprouts for dinner, just to see how she reacted.   Squid got a quizzical look. But in any event, it was usually easiest just to keep answering, and try to find something to change Mom’s focus. I feel sad when I see a caregiver chiding their loved one with “You just asked me that question!” Although I was there at first too, until I learned that only made Mom feel bad and didn’t stop her from repeating.

When I think aimg_0034bout it, the repetitive questions were really the first signs of Alzheimer’s that we picked up on, well before the time that Mom and Dad ended up moving in.  The Alzheimer’s Association has a brochure explaining some of the signs of Alzheimer’s, and you can find it here.

Mom would often communicate in writing to herself or to us, with the word “SAVE” written on important papers or “READ” written on notes to us about how she was feeling, or her “reminders”  to make us feel more “at home” in “her” house. I kept one of my favorites and have posted it here, since it truly captured the Mom of that time. “Bless you.”

While the signs we tried were often effective, they did backfire from time to time. Mom loved my two dogs, Big Jake and Little Jake. She also loved to feed them, and forgot if she had just fed them 5 minutes before. Both dogs put on several pounds within the first few months of mom living with us. We developed a series of signs to help the situation. On the dog food box: “Velma, We feed dogs at 7am and 7 pm…..”   In a brilliant moment of inspiration, I enlisted our vet to help. Dr. Beatty wrote a letter on his letterhead, in large font. “PLEASE DO NOT FEED TABLE SCRAPS TO THE DOGS. Dr. Beatty” This was taped upimg_0021 on the wall near her spot at the dinner table, where the scraps had a tendency to “drop” from her hands to the eagerly waiting dogs. When I caught her in the process of palming a treat to the dogs, I would point to the letter. I would explain the dogs are on a special diet. Usually, she would understand and say “Oh. Alright,” and put the scrap back on her plate. But sometimes, if she were in a particular mood, when I would point to the sign, the response would be (sneer) “That Doctor Beatty. What does he know. All he wants to do is sell expensive special dog food.”   Followed by a “plunk” of the scrap into the happy dog’s mouth. The sign’s demise is evident in the picture here – she ultimately decided it was best to simply rip it off the wall, crumple it up and throw it away.

When mom’s activities took a somewhat dangerous turn, I thought I could stop it with “strongly worded signs.” She was always concerned about energy use, and any img_0020-1light had to be turned off, any flashing light had to be dealt with. Which led to mom getting involved in some electrical misadventures. I came home one evening to find she had evaded Dick and managed to disconnect my entire internet system. Since we had internet based phones (well, until the day after this happened and I reinstated land lines) it was particularly unnerving that she had dismantled our ability to get emergency help when my dad was home in the final stages of cancer. So a few “strongly worded signs” were posted. With limited effect. In the wee hours one morning I was awakened by Mom standing next to my bed holding out my laptop (which was already emblazoned with the “Velma: Do not touch this!!!” sign) exclaiming “I just can’t get this little flashing thingy to turn off.” Sigh. So much for the strongly worded sign.

That event in and of itself was one of the signs to me that it was no longer completely safe for her to be unsupervised for any period of time. Her obsession with lights and disconnecting things might lead her to a dangerous situation. Signs like these are worth paying attention to as a caregiver, since they point the way to the need to re-evaluate things like supervision and possibly even the living situation.  When the time came for Dick to go back home later that year, as a single working mother who needed her sleep, I ultimately decided I could not care for mom at home any longer. But that is a story for another post.

As we moved into August of that  year – 2008 – it was time for me to put out the traditional presidential candidate signs. I live in Ozaukee County and often feel like the lone Democrat in a sea of Republicans. So it is important to me that I show my support for the Democratic candidate. I was especially proud to post my OBAMA sign, and in anticipation that the sign would be stolen, I ordered a batch of three. Mom and I enjoyed the moment, when I explained he was the Democrat running for president. ( Although Mom was born to a Republican family, she was Democrat all of her adult life since marrying my dad. She was active in politics and in political campaigning. When I was young, she got img_0025a kick out of posing me and my friend Laura – daughter of Republican neighbors – with McGovern signs. Laura’s parents were not amused.) And Mom was tickled that Candidate Obama was black. My parents were ahead of their time years ago in Whitewater, and offered a scholarship to one of the first black students at the University of Wisconsin Whitewater. Derek lived with us while he went to school. So Mom was delighted that a black man would be a presidential candidate. “Obama! What a beautiful name!” she exclaimed.

Our joy soured a couple days later when the first sign disappeared. “Assholes” I muttered against some unknown Republican vandal. I marched into my garage and pulled OBAMA #2 out of the trunk of my car. I placed it in the ground, in the same place.

That weekend, I completed something I had decided to do just for me. When Dad was ill, and we were in the throes of caregiving for both parents, somehow in the early months of 2008 I got the crazy idea that I should train for a triathlon. Training began with me riding an exercise bike in my basement, while dad smoked his pipe. As spring came around, I tried jogging around our lake in the morning. I kept working at it as a way to burn off the negative kinds of energy that inevitably come with caregiving.  Dad died before I completed my goal. But I did it in August when I finished a sprint distance triathlon. I felt him beaming with pride. When I got home, Dick and Mom had filled the wall of my garage with……SIGNS……..signs of joy and good wishes. Mom loved those signs and was so excited, even though she didn’t know what I had done. She knew we were celebrating something big.100_3377

In the excitement of the triathlon, I didn’t realize until later that weekend that the OBAMA sign was gone, again. Nothing could bring me down, so I planted another one in the ground.

In the middle of the work week, I came home and caught the thief in action. As I pulled into my driveway, Mom gave me a cheery smile from the front yard where she was “cleaning.” She had a broom in one hand, and the Obama sign rolled up and tucked under the other arm. My mother, the lifelong Democrat, was stealing my signs.obama-jpg

After absorbing the irony on so many levels – that I had falsely suspected Republicans who had done nothing wrong, and that Alzheimer’s had robbed my mother of her strong political identity – I decided the only solution was a sign on the sign. I put the Obama sign back in the yard, and put a postcard on top of the sign saying “Velma, please leave this in the ground.” It worked, temporarily. Which is really the best we can hope for with some of our little caregiver tricks. When the last sign disappeared, I gave up. It was over a year before I found where she had squirrelled them away.

Back to the sign in my yard today. It is a sign of the fight against this terrible disease that turned my mother into a sign vandal. It stands for help for caregivers that try all kinds of things – signs, pictures, music – to maintain that communication and connection with the loved ones who are falling away.  It is also a sign of HOPE. Hope that there will be a cure. There are more and more positive signs, thanks to the efforts of the advocates at the Alzheimer’s Association. Increased research funding. Positive research developments. Greater awareness. Signs we will keep looking for.

In a few weeks I will take up these signs and replace them with a HILLARY CLINTON sign. And when I do, I will think of Mom and cry a little, like I know I will every four years.  I know that the experiences as a caregiver, happy and sad, stick with me in a way that few other experiences do. And they give me the will to fight for a cure.

Sign up for a walk in your neighborhood. Do this. Can’t you read the sign?

To find the walk closest to you, click Here.







Posted in Elder Law

On The Longest Day, and in Alzheimer’s caregiving, many hands make lighter work.

"Kenneth Plaisted" "Carol Wessels" "team Valkyrie"

Team Valkyrie 2016 Thanks You!

In just two days from now, on June 20, 2016  Team Valkyrie will complete its second year of participating in The Longest Day, a fundraiser for the Alzheimer’s Association. The Longest Day is an annual fundraising effort held on the summer solstice – the longest day of the year. The purpose of the event is to recognize the long journey that is traveled by individuals living with Alzheimer’s and their families, and also the long hours put in by caregivers.

The Longest Day event begins at sunrise – 5 a.m. and ends at sunset – 9 pm. Teams are active all day long and their supporters donate money to the participants for their efforts. Donated funds go to the Alzheimer’s Association for support, education and research.

Wessels Law Office Team Valkyrie

Wessels Law Office Thanks You!

Anyone can form a team. And anyone can join a team. Teams can choose one activity, or a variety.  Teams can be small, or very large. And today, as I was thinking about our team, with 26 members as of this writing, I realized the analogy. If I were doing this event by myself, as a team of one, it would be very tough to make it the whole day. Although, I do have friends who are endurance athletes and probably could handle it by themselves. Not me. For me, I am blessed to have a big team so that at the end of the day, each one of us has done part of the work. More teammates make the day easier.

Team Valkyrie Carol Wessels Sunny Ken Plaisted

Sunny and Carol Thank you!

The same is true in caregiving for Alzheimer’s. The more people on your team, the easier the work will be. (Don’t get me wrong, I would never classify caregiving as “easy.” It is extremely challenging and also it can be rewarding.) When my dad took care of my mom he was, as are many spouses who come in to see me, a “team of one.” He was primarily responsible for caregiving for mom, he was the kind who didn’t want to “burden” anyone or ask for help (even though he was a volunteer driver for Interfaith Caregivers, helping others, for many years.) And that approach took its toll. His health suffered. So when I see those couples, one of the first things I do is give them the toll-free number for the Alzheimer’s Association Help Line: 1-800-272-3900 and tell them to call now and get connected to help.

My son Ken Plaisted thanks you!

My son Ken Plaisted thanks you!

The Alzheimer’s Association has extensive resources for caregivers in the Caregiver Center on its website, One of those resources is a Care Team Calendar found here: It allows you to create a Care Team, stay connected with the team by email, and also provide a calendar to coordinate care. Some of the families I work with use this calendar very effectively to coordinate rides to activities, “shifts” for various caregivers, physician’s appointments, fun activities, and other important items. When a volunteer is needed for one or more activities, the primary caregiver can send out an email and participants on the Care Team can sign up on the team calendar. The more people on the team, the more who can reach out and help, and lighten the load.

As we are reminded on The Longest Day, Alzheimer’s is a marathon, not a sprint. For myself, I doubt very much that I could run a marathon (never say never, but the doctor who fixed both of my knees strongly discouraged it.) But with the help of a team, even I could get that done.  If you or a loved one is facing Alzheimer’s, don’t go it alone. Get help, now. The more people on your team, the lighter the work will seem. And as I can tell you without a doubt, you are guaranteed to make friends along the path.

Sunny Plaisted

Sunny thanks you!

p.s. You can join my team or donate by clicking here, and donations can be made even if you are reading this after June 20, 2016.  You can see what Team Valkyrie will be doing, and join us at any events, by clicking here.  If you would like to form your own The Longest Day team or know more about the event, click here.

the longest day 2016

Posted in Elder Law | Tagged ,

A recent change in Family Care policies can make a BIG difference for married couples – read on…


On June 10, 2016, Wisconsin’s Department of Health Services updated its Medicaid Eligibility Handbook (called the “MEH” for short, and that is a pretty good description of how it usually makes me feel to read it.) This update changes the policy on what date is to be used for the “snapshot” date for Family Care.

What is a snapshot date anyway? And why should I care?

The snapshot is one of the terms we use in describing the process of applying for Family Care if you are a married couple. The rules that apply are called “spousal impoverishment.” I explained these in an earlier post, but it bears repeating here since it’s been awhile. This is not an easy concept, but I am hoping it will make sense when you read through these steps.  At the end, you will see why it is very important to understand how important the snapshot date can be for your future.

An explanation of basic Medicaid “spousal impoverishment” rules.When a couple is married, and one spouse needs nursing home care, or care in the community through Wisconsin’s alternative to nursing home care called “Family Care,” Medicaid will provide coverage of the cost of care if the couple meets financial eligibility rules. These rules are commonly referred to as “spousal impoverishment” rules but actually, that is a misnomer. The current set of rules regarding eligibility for married couples is based on federal law that was put into place by Congress to prevent spouses from becoming impoverished if only one needed nursing home care. Therefore, they really aren’t “spousal impoverishment” rules, they are “spousal anti-impoverishment” rules.

The spouse applying for benefits is called the “institutionalized spouse” – either in a nursing home or applying for Family Care (kind of a misnomer, since the whole point of Family care is to stay out of an institution.) The spouse who is not applying, and lives in the community – is called the “community spouse.” The “institutionalized spouse” could also be referred to as the “nursing home spouse” but today, we are talking about Family Care so I won’t use that term.

Assets: Under these rules, the allowable amount of assets that the couple can have to qualify for Medicaid is between $50,000 and $119,220, plus $2000 for the nursing home spouse.  The asset level is called the “community spouse resource allowance.” The exact target number within this range is based on half of the couple’s assets that are calculated as of the “snapshot” date.  But the minimum asset level that can be imposed is currently $50,000 and the maximum, absent some special exceptions, is $119,220. Assets in the name of either spouse are counted, even if the spouses have a marital property agreement in place between them.  The house is not counted in this total as long as it is worth less than $750,000. A few other things are not counted also, such as retirement funds that belong to the community spouse. Even with some exclusions, these totals are significantly less than what is estimated that a couple should save for a secure retirement.

Income: There are also rules related to income. These rules say that once the nursing home spouse is eligible (based on meeting the asset test described above), he or she may in some cases be able to transfer a certain amount of income every month to the community spouse.  This transfer is allowable only in cases where the community spouse has less than $2655-2980.50 in his or her own income per month. In those cases, the nursing home spouse can transfer income, but only enough to bring the community spouse’s total income to that level. The exact amount within this range is based on the amount of expenses for “shelter” that the community spouse incurs. So you take the appropriate income allocation amount, and subtract the community spouse’s income, and the difference is what the institutionalized spouse can transfer.

But today we aren’t here to talk income. Because the snapshot is all about assets.

Snapshot:  The snapshot date is extremely important because it is the date that is used to determine the couple’s initial assets for spousal impoverishment purposes. It is this calculation that forms the basis for how much the couple can keep in order to qualify for Medicaid. In other words, if a couple has $120,000 on the snapshot date, their asset level in order to qualify for Medicaid will be $60,000. If a couple has $200,000 on the snapshot date their target level will be $100,000. Because of the rules regarding minimum and maximum, if a couple had $80,000, even though the general formula of “half” would be $40,000, that would be less than the minimum of $50,000 so the target for that couple is $50,000.  Similarly, due to the maximum, if a couple has $500,000 their target level will be $119,220 (plus $2000) even though that is far less than half.

This leads to the phrase I repeat to my clients until they “get it”: Half of more is more, half of less is less.

When is the snapshot date?  Well, that is what this post and the policy change is all about. The snapshot date is more formally defined as the “first continuous period of institutionalization” which is easy when we are talking nursing home care. In that case, it is the first day that the person went into a medical institution for 30 days or more. This is usually a nursing home, but a hospital can be a medical institution also.

For Family Care, the new policy says that the snapshot date is the date that a person had a functional screen that determined they met the “functional” requirements for Family Care.

Ok, I am sorry, we need to take a little side trip to understand Family Care and then we’ll get back to the snapshot. (Are you beginning to see why people can’t understand Medicaid without the help of a lawyer?) For Family Care, the purpose of the program is to provide long term care and support to people who – without the services – would need to be in a nursing home. In order to figure out whether a person meets this criteria, an evaluation has to be made regarding that person’s needs for help.  This evaluation is called the “functional screen.”  This screen is typically performed by someone from your local county’s Aging and Disability Resource Center (ADRC). The ADRC person will come to your house or the assisted living facility, ask a bunch of questions and complete the screen using state criteria. I tell people it is not the time to be stoic – you should not downplay your need for help during this screen. If a person “passes” the screen it means they do need assistance with the required number of activities of daily living.

So, according to the new policy, when the person from the ADRC comes out to do that screen, if the spouse “passes” the screen meaning they do need assistance, that is the day that will be used for the snapshot.

Getting back to the concept of “half of more is more, half of less is less” – you will want to make sure all of your ducks are in a row before getting that functional screen, particularly if you are one of the couples whose countable assets are within the range between $100,000  and about $250,000. If you are in this range, you will want to make sure you do not spend money on discretionary big-ticket items before getting the screen. Don’t buy that new car, or put that roof on the house, or prepay for funeral plans until after the screen. Most couples in this case will want to get the screen sooner rather than later, before they spend a lot of assets. It could mean a difference of thousands of dollars in your community spouse resource allowance. An ADRC may request that you disclose finances when you call for the screen, and then may push back or tell you that you have too much money so it doesn’t make sense to get this screen, especially if your assets are high, but you have a right to it and should get it before lots of resources have been spent on your spouse’s care.

Also, there are things you can do proactively to raise the level of your assets in anticipation of that snapshot. You really need to talk to a lawyer to understand all of these options and to be smart about the process.

When you contact the ADRC for information about programs and services, the friendly person may offer to come out and do a functional screen. I suggest you see a lawyer before scheduling that, and recognize that at this point, that screening test has both functional and financial significance.

polaroid 2


Posted in Elder Law, Medicaid, spousal impoverishment | Tagged ,

“You don’t have to be rich…” to have a will.

rain imageSay it ain’t so, Prince.

The Morning Papers said that probate documents recently filed in Minnesota claim His Royal Badness did not have a will.

With all the effort the man went to over the years to retain control of his art and his image, I find this almost impossible to believe. It’s not just a Sign o’ the Times, it’s a sign something was very wrong.

Because estate planning is about P Control.* And we all want it, we want to keep it, we don’t want others to have it.  Especially not the courts, who know nothing about our dreams, our goals, our wishes, our values except for what someone with a stake in it tells them.

Admit it. We especially want to stay in control when we can’t do it ourselves anymore. That is why I find it hard to believe that Prince would just LetitGo. This is the reason we all need to do estate planning – you have to get it done because it’s not Automatic. Even if you are The Marrying Kind, your spouse will only have limited powers without your written consent.

If you want to be the one to make decisions about what happens with your stuff, what happens with your health, what happens with your money, you have to plan ahead and put it in writing. Make sure the keys to your vault, no matter how small or big it may be – are held by someone you trust. If nothing else, I hope you get this in your Head by the end of this blog.

In my line of work, the biggest estate planning concern I have for my clients is making sure they have the right kinds of documents to retain control during their lives, like powers of attorney for finances and health care. Without having these in place, if you are “Delirious” a judge is going to decide who makes decisions about where you live (and it probably won’t be Alphabet St.,) what kind of end-of-life treatment you will receive, and how your money will be spent. That may not be the person you would choose for yourself, and without written directives, your end-of-life preferences may go unrespected. I try very hard to make sure that does not happen to my clients. Its a lot more likely there will be Thieves in the Temple if you don’t choose people you trust, and things won’t go the way you want if you leave it up in the air.

But I get it, people also want to decide what happens to their Diamonds and Pearls, and other hard-earned stuff after they are gone, so we do wills and trusts as well to control what happens after death.  A good lawyer probably won’t die 4 u, but if U r Willing and Able they will write a will 4 u. And even though we all don’t have a vault of music worth potentially hundreds of millions, many of us have special things that will need management or ongoing help and attention after we are gone – like family property, or a loved one with special needs such as a minor or disabled child, or a spouse on Medicaid. People who value their privacy might want these things to be taken care of outside of the probate court system. In cases with issues like those, a trust could be the best estate planning tool. Finally, if you really want to say I Hate U to someone in particular, a will or trust is a good place to do it by leaving them out.

If you are uncomfortable talking about death and disability,  I Feel for You. A good lawyer will help you through it. Or maybe you are thinking Money Don’t Matter 2nite.  But it will matter if something happens to you and you have not chosen someone you trust to handle things – and you never know when that day will be. After all, didn’t 1999 seem like a long way away, once upon a time?

Whether you are young or old, rich or poor, gay or straight, black or white you need to get these done when you reach adulthood, which is 18 in Wisconsin. Don’t let Controversy reign over your world.

#RIPPrince – although that is sounding less and less likely if the news is true.

*Oh – P? I meant probate.



Posted in Elder Law, Estate Planning, Uncategorized | Tagged ,

Death and Dying

sparrowNobody really wants to spend time talking about death and dying. But inevitably we must. Usually, we don’t spend enough time on the subject.

It’s been a year since my mother, Velma,  died last January. I think of her every day. If anyone told me how hard it would be to lose her, I would not have believed them. For several years before her death, I had myself convinced that when the time came it would be a blessing. Given the change in her that Alzheimer’s created, I did tell myself I had lost her already. That was a lie, but I only knew that after she was truly gone.

We had a perfect service for Mom. Our pastor’s daughter sang the most beautiful version of “God’s Eye is On the Sparrow” that I have ever heard. But I’m not sure it was what she wanted. Because I lost her Funeral Box. Yes, Mom thought these things out, and she went to the trouble of picking out some verses she wanted, and some songs. She saved some funeral bulletins she liked. It was all in a folder in a banker’s box. She and dad had pre-written their obituaries, which were obviously somewhat incomplete given that they were alive when they wrote them. But I sure wish I would have had that Box when we needed it.

As a matter of fact, my brothers and I are 0-2 on the Funeral Box, because when Dad died in 2008, we didn’t even discover the box and the folders Mom and Dad had prepared until we were were looking at old pictures a couple days after the funeral. As it turned out, our choices were fairly spot on with what Dad had written, and we patted ourselves on the back.

If I had to guess, I would guess that I threw Mom’s funeral plans out that early fall evening the year after dad died, when I was having the brush bonfire which led to my great idea to burn a bunch of Dad’s old, no-longer-relevant medical records. I’m guessing I had tossed the box into the fire without looking, thinking Dad did not need his funeral plans anymore –  so yet another box I could get rid of – and forgetting Mom’s were there too. That decision might possibly have been made after a second glass of wine.

Both of our parents had beautiful funerals, despite our complete failure to follow their written guidelines. Because the funerals were beautiful to us. I doubt that Mom was planning on dying from Alzheimer’s when she planned her funeral, so our choices of song and verse might have reflected something she never gave thought to. When we closed her service with Alison Krause’s version of “I’ll Fly Away,” the words “Like a bird from these prison walls I’ll fly” signified to us her freedom from the affliction of the disease that had imprisoned her body and mind, and a return to the whole spirit she deserved to be.

Now that I am a funeral planning veteran, it is easier to talk with my clients and their families about these things. I want to share some bits of information about funerals and Medicaid, and some other ideas about the funeral process.

Know Your Rights When Shopping for Funerals: The Federal trade Commission has a detailed Consumer Rights rule regarding funerals and funeral planning. A booklet explaining the rule can be found here. Under the rule, funeral homes must give you a price list of all  services and items, called a General Price List, when you visit the home. Also, funeral homes must allow you to buy only those services you want. While they may offer a “package” you are not required to buy it.  Another provision is that you are not required to purchase your casket or urn from the funeral home. (In fact, we got Mom’s urn from TheUrnCO for about a quarter of the price of most funeral homes.) If you want a burial with a casket, did you know you can buy it at Costco?casket

Become an Educated Consumer and Save Money at the Same Time:  Before Mom died,  I was asked to give a presentation on advance directives (such as powers of attorney) to a group called the Funeral Consumers’ Alliance. As I was getting ready for the presentation at the event, I picked up a brochure, and realized I had seen it before. In the Funeral Box. It occurred to me that possibly my parents had been members. The kind woman representative who was there that night took Mom’s name down and said she would check. The next day, she called and said sure enough! Mom was a member. Because of her membership, Mom was entitled to a special funeral rate through a selected funeral home. When the time came, I used that benefit for my Mom. I may not have picked out the verses she wanted, but I got her the discount that would have made her proud! The one-time membership fee is very reasonable. This organization has many chapters throughout the country, and the Milwaukee Chapter can be located at this link.

Medicaid and Funerals:

When applying for Medicaid, many types of burial arrangements are excluded from consideration as assets, or are given special treatment.

For a single person, these are:

Burial Spaces owned and by the applicant, including 

  • Plots, vaults, caskets, crypts, mausoleums, urns, or other repositories customarily used for the remains of deceased persons
  • Necessary and reasonable improvements upon the burial space with items such as headstones, markers, plaques
  • Arrangements for opening and closing the gravesite
  • The space(s) must be for the use of the applicant or their spouse, minor or adult natural, adoptive, or stepchild, brother or sister, natural or adoptive parent, or Spouse of any of the above.

Because these spaces can be purchased for immediate family members, the applicant may purchase burial or mausoleum spots for all immediate family members, and pay for burial containers and arrangements.

Burial Funds of up to $1500: Funds must be separately identified, and the ability to exclude these funds may be reduced if the applicant also has certain other assets such as a whole life insurance policy.

Irrevocable Burial trusts up to $4500: The applicant must be the owner of these trust funds. Keep in mind that if the applicant’s preplanning includes a burial trust and also burial spaces as listed above, more than $4500 may be protected.

Irrevocable Burial Insurance Policy: A burial insurance policy is a contract whose terms preclude the use of its proceeds for anything other than the payment of the insured’s burial expense. It is an insurance product sold by a state-licensed insurance company and is typically funded with an annuity or life insurance policy. To be excluded, the policy must name the individual’s estate as the beneficiary of any remaining funds, not a family member.

Life Insurance-Funded Burial Contracts: A life insurance-funded burial contract involves a person purchasing a life insurance policy on his or her own life and then assigning either the proceeds or ownership of the policy to a third party, generally a funeral provider. The purpose of the assignment is to fund a burial contract. If the applicant makes this assignment irrevocable, then the asset will be considered unavailable. Rules apply as to the amount a person may designate for various items and services. A burial contract that is funded with a life insurance policy must be in writing and must contain all of the following:

  • Name of funeral home and the insurer.
  • Statement of funeral goods and services.
  • Effect of canceling or surrendering the insurance policy.
  • Effect of changing the assignment of the policy proceeds.
  • Nature and extent of any price guarantees for goods and services.

For a Married Applicant, the Medicaid exclusions are:

All of the above, plus funds set aside for burial in any reasonable amount, as designated by a written statement. This gives us greater latitude, because an existing bank account or whole life insurance policy could be designated as set aside for burial. However, upon the death of the first spouse, we must then use the more restrictive options for single individuals when planning for the second spouse.

Finally, Talk it Over, Perhaps Put It in Writing: I am constantly urging clients to talk with their loved ones about end-of-life preferences, including their wishes for medical treatment, stopping medical treatment, hospice, quality of life, and values. This conversation might also include funeral plans. Wisconsin has an advance directive specifically for funeral planning, called an Authorization for Final Disposition. It can be found here. When properly executed, it is a binding legal directive. Unfortunately, the execution requirements are somewhat cumbersome so I don’t often use it with my clients unless there is some reason to believe there will be a dispute over the funeral planning. But it can serve as a good planning tool even if it is not formally executed.

(Just make sure one of your kids doesn’t toss it in a bonfire before you die.)

Posted in Elder Law | Tagged ,

The Father I Lost

Dad and me (2)I write this on June 21, 2015. Today is Father’s Day. It is also the day that the Team I created in memory of my mother, Velma ,is taking part in The Longest Day, a fundraiser for the Alzheimer’s Association.  It is just after sunrise, and our first teammate has started her journey on this day-long event.

Usually, when I remember my Dad, Russell Wessels,  on Father’s Day, I think of the loving, cheerful and wise man who taught me to read , who regularly slipped $20 bills in my hand “for gas” when Mom was not looking, and who was never happier than when he was driving our boat across Eva Lake in Canada on the way to some fishing adventure. He was a WWII veteran who rarely talked about his experience unless directly asked. He was a hard worker and a thrifty man who had a contest with a colleague on who could re-use the same paper lunch bag the longest. He won. He was a leader in his field of sales and a respected educator.

Because of the connection between this day honoring fathers and this day where we are remembering my mother, I need to share a different side of my father. The one that I lost to Alzheimer’s. No, my dad did not have Alzheimer’s. But as a caregiver, the disease took its toll on him.

It was the day after Thanksgiving in 2007. We had just enjoyed a family gathering at my house the day before. My phone rang.

“I need you to take me to the emergency room.”

“Dad, what is going on? It will take me forty minutes to get there. Should you call an ambulance?”

“No, I can wait. Get here as soon as you can.”

(Typical Dad. This is the same dad who, years before,  waited for over two hours in the ER after a dog bite, when he had his little finger almost severed off. Because he had wrapped it up, I had no idea how bad it was even though I was right there next to him. Finally my mom called the ER to see how he was doing, and chewed them out for not looking at it.  When they took the wrap off, neither the doctors nor I could believe he had sat so patiently for that long. By the way, it was my dog that bit him. That is a different story to tell.)

I rushed over to their house and took him to the emergency room. After the doctors saw him, he ended up with a catheter and a Monday appointment with the urologist, and we had a decision to make.

“Dad, you can’t take care of this on your own this weekend. You need to stay with me.”

“Alright. Well, let’s go get your mother. She can’t be alone that long.”

As I look back, I know now that until that point in time, I was mostly clueless about my mother’s condition. We knew her memory was getting worse. We knew she repeated questions over and over (even she knew this.) I knew that one time, she had accidentally put dish soap in a pot of soup she was making while I was at their house, and she was extremely embarrassed about it but blamed it on being distracted. We had pleasant conversations on the phone at least once a week, since I lived 25 miles away and led a busy life. In reality, her condition was much worse.

My dad knew how bad she was. Because he had been caring for her behind our backs. He knew that he could not leave her for more than a couple hours. He knew that she was no longer able to cook on her own, or remember to take medication, or do the more complicated household tasks, like laundry. He had taken over the cooking and cleaning, the grocery shopping, and the management of Mom.

And he had done this at the cost of his own health. Because his days were filled with caring for her, by himself, he stopped taking time for his own medical care. And what had been a treatable bladder condition had progressed beyond the early stages without proper medical attention.

From the emergency room, we went to their house and collected Mom and a few things for the weekend. They came home with me. And they never left. We began treatment for Dad. At that Monday appointment, the doctor took a series of tests and ultimately recommended surgery. We decided it was best that they stay with me until Dad recovered. After the surgery, and a few weeks of living with Mom, I understood that Dad was too weak to care for her, and they should stay with me awhile longer.

Meanwhile, Mom had no idea how sick Dad was. She simply lacked the ability to remember anything that had happened to him. She spent her days around my house doing “chores,” sweeping, dusting, washing dishes without soap, looking for the broom, sweeping again, rearranging items on my shelves, turning off lights in the house. One afternoon, as Dad was sitting in the recliner recovering, and Mom was “doing dishes” she got particularly upset.

“Russ, get up off your ass and come over and help me. I’ve been doing all the washing, cooking, and cleaning around here and you are just sitting on your ass all day.”

I got upset. “Mom, Dad is sick. He can’t get up!” “Well, I don’t know what is wrong with him, but I need help in the kitchen. There is a lot to do here, this place is a MESS!” (My housekeeping standards never did match up with my mother’s. In her opinion, my place was always a mess.)

It was seven months between the time they came for the weekend, and the day my father died on June 6, 2008. My brother Richard came back from New Mexico to provide care for my parents while I worked at my job. In the months we were together,  I was blessed by the extra time I got to spend with my Dad. We would go down to the basement (carefully for Dad) and he would smoke his pipe, I would ride my exercise bicycle, and we would talk about life’s events. Sometimes I would sneak a cigarette with him. There came a day when he no longer wanted to go smoke his pipe. Then there came a day when he started saying things that did not make sense. And then a day where he no longer could get up at all. After 61 years of marriage we got Mom a twin bed to go next to Dad’s hospital bed, because she would not have understood why they were not sleeping and me at headstone 2

In the final weeks, his thoughts were often consumed by the time he spent in a Submarine in World War Two. He was not coherent enough to explain this to us, instead we heard him exclaiming and frantically turning phantom control knobs with his hands. Once, in the middle of the night, when I heard him tossing and turning  about some crisis he was reliving, I went to him to tell him it was OK and he was safe. He had a moment where he stopped, looked me in the eyes and said “Bless you, you are a godsend. Thank you for everything.” And then he went back to his imagined control room.

At the funeral, I brought Mom in to the church and we looked at pictures of her and my father through the years. She admired how nice that couple looked. I asked her if she was ready to go see Dad, and she exclaimed with joy, “Oh, he DID come!” During the service, she pointed a finger discreetly at the casket and asked me, “Now, whose husband is that?” It was not until the military honor guard gave her Dad’s flag that a glimmer of realization set in her eyes.

According to the Alzheimer’s Association, Alzheimer’s takes a devastating toll on caregivers. Nearly 60 percent of Alzheimer’s and dementia caregivers rate the emotional stress of caregiving as high or very high; about 40 percent suffer from depression. Due to the physical and emotional toll of caregiving, Alzheimer’s and dementia caregivers had $9.7 billion in additional health care costs of their own in 2014.

I see the same situation played over and over with families I meet at work. A spouse, caring for a spouse with dementia. The caregiver spouse is tired, worn, concerned. And I think about my dad and hope that I can help this couple so that things turn out differently. Caregivers, get help. Get support. Do not wait until it is too late. Call the Alzheimer’s Association helpline at 1-800-272-3900 or look here for help.

And now I will be spending the rest of the day honoring caregivers like my dad, and my brothers and I too, in memory of my mother. Until we find a cure for Alzheimer’s, the toll will continue on caregivers and their loved ones living with dementia. If you would like to donate to our team for The Longest Day, and help us fund the research that will find a cure, please click here.

mom dad and bailey in the boat

Posted in Elder Law | Tagged , ,

What’s Really Wrong with Family Care

These days we have shared  a lot of concern over Governor Walker’s attempt to make sweeping changes to Family Care and Aging and Disability Resource Centers without consulting any citizen stakeholders. (See the article I wrote on that issue.) We don’t really know what Governor Walker thinks is wrong with Family Care the way it is, other than cost. (And it has not yet been clearly spelled out how he thinks the sweeping changes he wants will save costs, leading me to believe the cart has been put before the horse.)

I’ll tell you what’s really wrong with Family Care, in my opinion. The Budget proposals don’t fix the problems I am going to talk about.


Family Care allows assisted living facilities to pick and choose when they agree to take Family Care. So you never know if you will be able to use Family Care even if you meet all the financial qualifications.

In the operation of Family Care, the State allows assisted living facilities to set parameters on their agreement to allow residents to use this benefit. Which means that an assisted living  facility could say that it will only take Family Care benefits for a limited number of residents. Or the facility could say that it will only let you use Family Care benefits if you have paid privately for two years.

By contrast, under federal law, if a skilled nursing facility agrees to take Medicaid payments for any patient, it must agree to take Medicaid for anyone who qualifies, no strings attached. A nursing home cannot refuse to take Medicaid for a qualified patient. It cannot limit the number of patients for whom it will take Medicaid. It cannot impose a requirement that the patient must pay privately for a specified amount of time.

It gets much more complicated to figure out how to plan when you are not sure about whether you will be able to count on Family Care in the assisted living facility you would like to live in. When I am talking with my clients about Family Care, I have to explain it this way:

1) First you have to find an assisted living facility that you are comfortable with for your loved one.

2) Then you need to find out if it takes Family Care. There is a web page you can look at here. You will find lists that indicate whether or not a particular facility in a particular county takes public funding, among other useful information. You can also search the provider lists for the Family Care Managed Care Organizations in your county. OR, you can ask the billing office of the facility. Getting a “yes” answer is the first step.


3)  The next thing you have to find out is what the facility’s limitations are for taking Family Care. “Do you take Family Care right away if someone qualifies?” “How long must we pay privately before you will take Family Care?” “Do you only allow Family Care for a limited number of residents at a time?”  OR, the trickiest one of all. “Do you take Family Care in the Wing I am considering?” This is because some facilities will refuse to take Family Care in certain sections of the residence where a higher care level is involved, such as a “memory care” wing.

Making the wrong move can be a disaster. If you pick a facility because you hear it will take Family Care, but you don’t know the rules about WHEN or in what WING the facility  will take Family Care, you could run out of funds and be unable to access Family Care. Worse yet, it will be that much more difficult for you to find a new place. I painfully recall a family who inquired of a facility, moved in, paid privately as required, and applied for Family Care after several years, only to be told the facility didn’t take Family Care for the memory wing in which the client resided. We were able to persuade the facility to bend the rules.

But why? The reason for all this is that the state is unwilling to pay assisted living facilities a decent rate to provide quality care, and so they give some leeway not to rope the facilities in too much when they DO take Family Care.  These places are caring for our mothers and fathers, grandparents and our disable children. They deserve a decent rate of payment.

(Aside: I am all too aware of the growing costs of long term care. But look at the inevitable. The population of individuals with dementia in Wisconsin is predicted to grow by almost 20% in the next ten years, according to the Alzheimer’s Association. We cannot nickel and dime this crisis by cutting rates to the people caring for our loved ones. The time to figure out a funding mechanism for quality care for everyone who will need it is upon us right now. And YES, it NEEDS TO cost the taxpayers more money.)

If you are nervous about all this uncertainty, I don’t blame you. I tell my clients, “well you can always go to a nursing home where they HAVE to take Medicaid if you qualify.” But that is ironic, since federal anti-discrimination laws including the Americans with Disabilities Act (ADA)  require states to provide services to disabled individuals in the least  restrictive environment available. I believe this arbitrariness in Family Care is in violation of those anti-discrimination laws.


When you apply for Family Care, there is a lengthy process involved that takes several weeks. You must call to schedule a meeting, you are required to have a counselor talk to you about the program, then have a screening to see if you meet certain functional tests, then fill out a financial application and have it reviewed. After you get through all of that, which can be 4-6 weeks, then you get to choose your managed care organization and enroll in Family Care. Only then do you actually get to receive benefits. This is a problem if you are in assisted living, because you apply for Family Care when you have virtually run out of funds to pay for your care. If it takes 6 weeks to get benefits, you end up with an outstanding bill you cannot pay.

Federal law requires that people who apply for Medicaid get benefits as of the date of application (and in most cases as of three months prior to the date of application, if you were otherwise qualified.) This is how it works if you are in a nursing home. In a nursing home, if you apply for Medicaid and it takes a month or 6 weeks to process your application, your Medicaid benefits will go back to when you applied, and even up to three months before that. If you paid privately for that time, you will even get a refund. Not so with Family Care.

Now, the actual Family Care rules require the state to give you benefits as of when you apply. The state just doesn’t follow its own rules, let alone federal law.  Again, this is another lawsuit waiting to happen.

You may be able to get around this by demanding “conditional enrollment” in Family Care. This is a process where you are enrolled right at the beginning, but if it turns out you do not meet the financial requirements, you have to pay for your services.

This is part of the Family Care Contract mandated by the state of Wisconsin. I’m not kidding:

 Provision of Services While Financial Eligibility is Pending
The MCO will cooperate fully in executing a memorandum of understanding or other written agreement with each ADRC within its service area that describes the circumstances in which the MCO will provide services to an individual who is functionally eligible but whose financial eligibility is pending.
This agreement can be to serve individuals whose financial eligibility is pending at the time of initial enrollment or during a period of disenrollment due to loss of financial eligibility.  The MOU shall include a process for the resource center to inform the individual, or their authorized representative, that if he/she is determined not to be eligible, he/she will be liable for the cost of services provided by the MCO.
The MCO will not receive a capitation payment for an individual during the time financial eligibility is pending. If and when eligibility is established, the MCO will receive a capitation payment retroactively to the date indicated as the “effective date of enrollment��? on the Enrollment Request form, up to a maximum of ninety (90) calendar days of serving the person while financial eligibility was pending.
The effective date of enrollment entered on the Enrollment Request Form shall also be no earlier than the date on which an individual or their authorized representative signs an explicit agreement (not just the enrollee’s signature on the enrollment form) to accept services during the period of pending financial eligibility.
If the individual is determined not to be eligible, the MCO may bill that individual for the services the MCO has provided. The MCO shall pay providers for services which were provided and prior authorized by the MCO.  MCO providers may not directly collect payment from the individual.
The timelines for completion of the comprehensive assessment and member-centered plan shall be the same as those indicated in Article V, Care Management.

The thing is,  most of the ADRCs seem to be entirely ignorant of this requirement so it is usually an uphill battle. In Milwaukee, they are well aware of the requirement but they flat out refuse to do it. One of these days, I will have to push the issue. But then again, if you don’t like that problem, you can always go into a nursing home. Hmmmm, there is that pesky ADA discrimination issue again.


Posted in Elder Law, Medicaid | Tagged

What Governor Walker’s Proposed Change to Promissory Notes Means

money sign

Governor Walker’s 2015-2017 budget proposal contains a change to one particular area of Medicaid planning involving the use of promissory notes. While this is relatively minor compared to the chaos of the 2013-15 budget, it is worth a passing comment.

The proposed change adds language in two areas of the Medicaid law, and the revised language would prevent the use of promissory notes in Medicaid planning.

A promissory note is a loan. Under Federal law, a loan will be considered a “divestment” (see my explanation of divestments here) unless it:

(i) has a repayment term that is actuarially sound (as determined in accordance with actuarial publications of the Office of the Chief Actuary of the Social Security Administration);

(ii) provides for payments to be made in equal amounts during the term of the loan, with no deferral and no balloon payments made; and

(iii) prohibits the cancellation of the balance upon the death of the lender.

Governor Walker’s proposal adds a fourth requirement: the loan may not be non-negotiable, non-assignable, or contain terms preventing its sale.

Then, the new budget proposal states, in another section, that a loan that is assignable and negotiable is a countable resource to the individual.

So….under the proposed new law, if you use a promissory note, it  will either be an available resource or it will be a divestment.

This proposal is illegal. A state cannot have rules that are more restrictive than federal law.

And, it is really a waste. As I explain to my clients, promissory notes are really just a stop gap measure to help curtail the bleeding of the private pay nursing home rate, over $10,000 per month in my area of the state. Promissory notes can reduce a person’s assets so that they qualify for Medicaid, and can purchase care at a much lower rate.   But the law requires that those notes be paid back, so when a payment comes in there are very limited options as to what a person, especially a single person, can do – many of my clients use the loan repayment to make a payback to estate recovery. The interest on the loan counts as income that must go to the nursing home as a cost share. Also, if the person dies before the loan is repaid, the outstanding balance may be available for estate recovery.

So the state is not really creating much of a benefit by curtailing the use of promissory notes, and is setting itself up for a legal battle. I wonder why this pettiness is such a priority for Governor Walker. He attacked promissory notes the  last time around and the provision ultimately did not remain. It’s BAAAACCCCKKK. (Well, he is going about it in a new way this time.)

Even if it passes, it  won’t prevent people from becoming eligible for Medicaid. An annuity meeting federal requirements would have the same benefit that a promissory note provides now.

Posted in Elder Law, Medicaid | Tagged , ,

Governor Walker’s Budget Proposal Contains Radical Change to Family Care Without Input From Consumers (And Provides Another Glimpse Into Walker’s Way of Doing Business)

Or, Thompson and Walker approach long term care redesign in entirely different ways – A tale of then vs now.

Governor Walker’s proposed Wisconsin budget for the 2015-2017 biennium contains a major overhaul of the Family Care System. This proposal blindsided the vast majority of organizations who work with seniors and disabled individuals. It came as a complete surprise because Walker had not consulted with any stakeholders prior to proposing this overhaul. This is nothing new for Walker, who is not exactly known for having a cooperative approach on reforming laws and services for the less-than-wealthy.  Walker prefers the ramrod approach. But it is new for those of us in the elder and disability community, because here in our world we have a history of coming to the table to discuss these things. This approach was put in place by a prior Republican governor, Tommy Thompson.

Before I get in to the historical background, let me briefly explain Family Care. It is Wisconsin’s community long term care program for elderly and disabled individuals. Family Care is a program that is operated through the federal Medicaid Waiver program. This means the program gets Medicaid funding and follows many of Medicaid’s rules. Family Care provides services to people who, because of their medical conditions,  need help and support to stay in their homes or in a community setting such as assisted living, a group home or a supervised apartment. Many of my elderly clients who live in assisted living facilities are able to qualify for this program. Others are able to pay for services coming into their home to help with things like medication management, bathing and transportation.

Programs like Family Care are mandatory as a result of cases like the Olmstead decision in the United States Supreme Court, that found a state violated disability discrimination rules when it had long waiting lists for community care that forced people to receive care in an institution when a less restrictive setting would be appropriate.

Which brings me to the history of Family Care. Years ago, Wisconsin’s program to provide community-based long term care services was called the “Community Options Program” (and the Community Options Waiver Program). Although it was a good program for those who could get it, there were extremely long waiting lists and delays, so much so that the state and counties were being sued for discrimination and violations of federal laws. I was one of the attorneys representing elderly individuals on such a case. Governor Thompson, as well as the aging and disability community and the county governments, recognized the need for change. So in 1995, Governor Thompson convened a committee on Long Term Care Redesign to study the possibility for reworking the system to eliminate waiting lists.  A history of this effort can be found here. The Redesign Committee worked for several years, formed subcommittees focused on certain issues, and held many stakeholder meetings. Family Care was born as a result. It was in Governor Thompson’s 1999-2001 budget proposal, the product of several years of study and the development of consensus among stakeholders.

But when you are Scott Walker, who needs consensus?

Walker’s redesign proposal would eliminate some important aspects of the program. First, it would eliminate the IRIS ( I Respect, I Self-direct) program, which allows participants to self-manage their own budget for their care, providing the widest latitude to create an individual program within a budget. Second, it would replace the Managed Care Organizations that operate in various districts to run the program. It would restrict participation in Family Care only to those MCOS that can operate on a statewide basis. This is NONE of the current MCOs. To operate statewide,  an MCO would have to have significant capital, the kind that only large insurance programs have.Third, it transfers oversight of the MCOs to the Office of the Commissioner of Insurance instead of the Division of Health Services. Fourth, it provides a means to eliminate the current Aging and Disability Resource Centers that provide help on a local basis to seniors and disabled individuals, by allowing this service to be contracted out. There are numerous other changes proposed that are too many to go into here.

You might ask, why the changes?  Well, when you are Scott Walker, why not? He must have a good reason. Like, providing big business for out of state insurance companies and putting Wisconsin MCOs out of business. Reducing the size of government by eliminating the ADRCs. Or something like that. But definitely not improving services for elderly and disabled people. That is nowhere in this equation, or else he would have had them at the table in making the decision.

Since its implementation, Family Care has eliminated waiting lists, reduced long term care costs, and increased the delivery of care and services. Is it perfect? No. Part of my job is to complain about the things that go wrong in that system. But it is effective. And changing it is something that should be done with careful consideration, not an iron Walker fist.

walker with seniorThe reaction of most seniors at this radical change is about the same as the woman in the picture I’ve included in this post. If you feel the same, now is the time to contact your state legislators and tell them to put a stop to this. You can find your legislators by putting your address into the box on this page. You might also want to attend one of the four public hearings on the proposed budget. The dates and locations of all four public hearings are provided below:

 March 18, Brillion High School, 10 a.m. – 5 p.m.

March 20, Alverno College, Milwaukee, 10 – 5.

March 23, U.W. Barron County, Rice Lake 10 – 5.

March 26, Reedsburg High School 9:30 – 4:00.

 It might be the only chance that consumers get to be part of the discussion. It seems certain we won’t get an invitation from Governor Walker.

Posted in Elder Law, Medicaid | Tagged , ,

The Mom I Knew

mom and dad wedding pictureMy mother Velma was complex and our relationship was complicated. Like many women of her generation, she took a job during World War II. As a chemistry major in college, she worked in a plant  that developed therapeutic uses for penicillin. She had to give it up when the war ended. She continued in college and met my father Russell after he returned from duty in the Navy. They married and she finished school at the same time she was caring for my oldest brother as a newborn.

As a child growing up, Mom was the driving force in our lives. My father, having been on the road for many years as a traveling textbook salesman, settled in the background in a supporting role, taking charge mostly when travel, our Canadian cottage, or cars, repairs or logistics were involved.

Mom always had papers moving around. When I was a small child, she was writing her Master’s thesis, although I didn’t know it at the time. To me she was just spending a lot of time at the typewriter. As I grew up, she was typing letters to the editor, political comMy beautiful picturementaries, letters to friends and seemingly always working on editing a paper for one of my brothers and later, me. Or campaigning for some issue of justice she felt needed to be addressed. She clipped newspaper and magazine articles and saved them for discussion among the family.

Mom held strong opinions on issues of justice and injustice. We belonged to three different  churches over the course of my life, because my mother took issue with either an action of the church (treating a woman minister unfairly in the Methodist Church) or a political position (our Lutheran church supporting a war my mother felt was wrong.) They settled on a UCC church that my parents remained active in until my father died, and which committed no political or administrative transgressions warranting its removal from their religious lives. Although she came from a Republican family, she was a Democrat her whole adult life.

At times, my mom seemed to have a level of frustration with the limitations of her primary role as housewife and mother. She spent time as a substitute teacher and worked with homebound students, but never took a full time job. I wonder if she felt like she was never allowed to develop her full career potential. She was extremely bright. Even though she had the mind of a scholar, she put her heart into being an involved and active mother. And her heart was as strong as her mind.

My mom was an excellent cook. Growing up on a chicken farm, she made the best fried chicken ever. Her pie crusts were perfect and in Canada at our cottage, she could mom dad and bailey in the boatcook fresh fish six different ways at the drop of a hat. She had many other hobbies and interests. She loved the time she and my father spent together in Canada.

While my mother was mostly a caring, loving woman when I was younger, she also had a temper that could become ugly, particularly when I or one of my brothers got out of line. When she would react with rage at some transgression, I sometimes wondered whether it was really me she was angry with, or something or someone else.  Maybe her lack of control over me mirrored a lack of control over her life. I never learned the truth about that. Because I was a particularly rebellious young woman, I bore the brunt of a lot of  my mom’s temper in my teens. Later, when my son Ken was a newborn, I saw an entirely different side – a nurturing and happy woman caring for my little boy without the slightest hint of anger or discontent. She was a wonderful Grandma.

It was in the late 1990’s when she was diagnosed with a rare type of abdominal cancer, Pseudomyxoma Peritonei. The doctors in Wisconsin gave her six months to live. I asked the doctor to tell me which type of this rare cancer my mother had (there were three types) and she refused to answer, simply insisting that my mom and memother’s life expectancy was six months or less. We did not want to accept this determination, so I located a specialist in Washington DC. We flew there for a second opinion. Shortly afterward my mother had a complicated, long surgery for the cancer.  She did extremely well and returned home much earlier than expected. She chose to fight, and she fought hard. She proved the Wisconsin doctors wrong, surviving over 15 years.

Not quite two years after the surgery, we noticed the forgetfulness. Questions being repeated. Stories being retold. Losing track of what she had been doing. At first it was just annoying. We didn’t know what was going on, and it simply irritated us to answer questions over and over. Eventually, we became concerned.

Her first trip to the doctor for testing revealed mild cognitive impairment. It was enough for us to get involved in memory care treatment. I still recall the initial meeting with the  doctor, asking what kind of dementia this was. Her surprising response was “it doesn’t really matter, we treat them all the same way.”

Mom and Dad continued on in their home, living independently for the next several years. I kept in touch with phone calls, church on Sunday, stopping for lunch or dinner, and holidays. The questions kept being repeated. Mom stopped driving on her own. More and more handwritten notes, lists and reminders appeared around the house. Important letters and bills had the words “SAVE” written in Mom’s handwriting, sometimes circled. Cooking became more difficult for Mom. One time, she put dish soap in the soup she was making, and became extremely humiliated and upset.  Eventually, we stopped having holidays at my parents’ house and started having them at my house.

On Thanksgiving, 2007, Mom and Dad came to my house for the holiday dinner. The next day, my father called asking me to take him to the emergency room. After seeing the doctor, it became clear he needed care for a bladder condition, and would need to stay at my house for the weekend, so I could monitor him. We returned home and picked up Mom, and they came to my house. I settled them in my bedroom for the weekend. They never left.

My father had been spending so much time attending my mother, that he had neglected his own care. His treatable bladder condition had progressed to a point where it needed surgery that was only minimally helpful and ultimately, the cancer became fatal. In the course of evaluating my father, as they stayed at my house it became very clear that my mother’s dementia was progressed much farther than we realized. When we were only seeing her for a day, or talking on the phone, she was able to pull the wool over our eyes, albeit unintentionally. Because of her high level of intelligence, she was able to carry on a conversation for quite awhile (the repeated questions aside)  and it was only when I compared her stories about her day with what I knew to be reality because she was living with me, that I realized she was relaying a life of fiction to us which she made up as she went along.

Thus began our lives as caregivers for my mom and briefly, for my dad. During the course of their illnesses, my three brothers and I took part in caring for my parents. My oldest brother Richard moved from his home in New Mexico to stay in my house with my parents while my dad was dying, because I had a full time job. My brothers Bob and Brad provided respite care and did other tasks to make our situation bday

My parents were married for 61 years when my father died of cancer in June, 2008. At his funeral, my mother asked me, “Now, whose husband is that in the casket?”  At the gravesite, when the military honor guard handed her the flag, she seemed to understand it was her dear Russell.

After my father’s death began the quest to find high quality care for my mother. That, and the stories of our adventures and misadventures while Mom  lived with me and in the three care facilities she experienced, are best saved for other posts. Throughout the course of her disease, we saw both the sweet and challenging, angry sides of my mother as she had always been.

My mother’s dementia continued to deteriorate. By 2012, she no longer knew my brothers or I. We were simply nice people who came to visit.  By 2014, she needed skilled care and we were fortunate to get her into Lasata Care Center in Cedarburg.

At some point in the later stages of the disease, we started referring to “the Mom we knew.” The Mom we knew would never have wanted this, we would say. Somehow, we now had a new mom. This was the dementia mom. The dementia mom was not our “real” mom.  I called her “Velma” because she no longer responded to “Mom.” We convinced ourselves that our “real” mom, the Mom we knew, was gone. This somehow made it ok that the “dementia mom” did not know us.  It made it ok that  “dementia mom” swore at her caregivers, and chewed on napkins thinking they were food or stole stuffed animals and pictures of someone else’s loved ones from other residents’ rooms. Our “real mom” never would have done those_MG_6180 things, but it was ok for dementia mom. Eventually, the thoughts came that our “real mom” never would have wanted to be alive if she knew she had become the dementia mom, it would not have been something our “real mom” would have stood for, as beneath her dignity and fierce autonomy. But our real mom was not there to stand up for herself, so dementia mom continued to live in her own way. Of course we loved the dementia mom, it was just different.

Then came the call, at 5:30 a.m. on Thursday, Jan. 15.  “Your mother has had a change of condition,” said the nursing supervisor.  This call was the beginning of the final stage of my mother’s disease. She had developed a high fever. It subsided after treatment, then came back the next day. My brothers Brad and Bob came down the following day, and then on a Sunday my mother lapsed into a state of not eating, not drinking, not responding.  During the week that followed, we stayed with my mother as much as possible, taking shifts. In those days, on my shifts I held my mother’s hand, rubbed her arms and feet, and played music.  I put cold cloths on her head and put moist sponges in her mouth.  I tried to sing to her and talk to her. I decided I should remind her about heaven, in case she had forgot. I cried and cried for the years we had lost. And in those hours and days, it occurred to me. This was my real Mom. This Mom lying on her bed, dying but still fighting. The dementia mom and the political mom, the Mom who didn’t know us and the Mom who raised us, the Mom who fought with her caregivers and the Mom who beat our behinds, the Mom who repeated questions and the Mom who wrote our papers, the Mom who was there when I was a little girl and the Mom who was there at the end when I felt so very, very old and tired. The Mom who lived, and the Mom who died on January 24, 2015 after a fifteen year battle with Alzheimer’s Dementia.

I so dearly miss the Mom I knew. Bless you, Mom.





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