On a Wing and a Prayer - Preparing for Medicaid

There are many paths that must be carefully traversed in readying your loved one for Medicaid. Personally, I am doing this on a wing and a prayer so hope that, in the end, all was handled properly.

It all comes down to spending down the assets. This equation can have many variables.  Perhaps you have one parent in a nursing facility, but the other is still at home. Can you keep your home? Your car? Your money? I have attached a link for those living in Illinois if you wish to check it out.

https://www.illinoislegalaid.org/legal-information/how-apply-medicaid

Since it's just Mom, we are spending down all of her assets until she reaches $2,000 at which point Medicaid can kick in. Of course, I'll have to apply before that time so we make sure everything is properly submitted before she reaches that amount. I believe it is around $10,000 when you can apply. I know there is quite a list, so I am starting to prepare a book on everything they will need. They want at least five years of records.

The difficulty for the past year while selling her vehicle and house was that I couldn't give it away. If a parent dies, it's easy to give a car to a relative or sell the house at a lower cost in order to move the sale more quickly. However, since we desperately needed the money and needed to show accountability to the government when the time comes for Medicaid, I had to be sure we were selling everything at realistic prices at current market values. I felt like the schmuck of the century when one of her grandson's could have used the car, but I had to be the one to say no.

The real kicker was Mom always wanted my brother to stay in the house after her death. I tried everything I knew how to make that work, but in the end had to tell my own brother he would need to find other living accommodations. Even if he stayed, she would probably live long enough to need Medicaid assistance and then Medicaid would end up taking the house later anyway. This was the most stressful decision I have made to date and still don't feel great about it, but it had to be done.

One of duties that needed to be accomplished was to pre-pay her funeral. Another fun task. We used one of her life insurance policies and converted it into an irrevocable trust to the funeral home. I'm glad this is done for a couple of reasons:

• If you don't pay for the funeral and spend down the amount of assets and go on Medicaid, you no longer have funds for funeral arrangements.
• It has to be done any way and upon her death will be a lot less stress.

On a funny note, I was asking Mom if she had preferences on Bible verses, songs, flowers, etc. for her funeral. When I got to the question of what kind of flowers she would like, she stated she would like to go in on helping pay for the flowers. I told her I didn't think that was possible. When she asked why, she said, "Oh that's right. They're for me. Well, can you at least drill a hole in the top of the casket so I can see what kind you purchased?" While she wasn't fully grasping the concept, she was still answering in true Mom fashion.

So many things can change between now and then that are completely out of my control. I am learning to let go and let God. It's my only way to stay sane. 

Am I doing all of this correctly? I'll let you know in about five years. 

The Blue Bowl

My mother's dementia reminds me of that photo in, "Back to the Future." Remember Marty's picture of he and his siblings? They were each slowly fading away. First his oldest brother, then his sister, then Marty himself. If he didn't get his parents back together when he went back in time, then none of them would be born and they would cease to exist.

It was always my impression that dementia also worked this way. Mom would first forget her great granddaughter, then the grand kids, then her own children, eventually my father, and finally the rest of her past would also fade in the end.

But this is not the case. Her great granddaughter visits weekly so Mom recalls her on occasion. Sometimes she forgets her name, or that Gabby had been there the previous day, but for the most part could remember some bit of this child.

The struggle for me is that has completely forgotten my father. She has gone back in the past to pre-husband days. I'll ask her something about Dad and when she looks at me quizzically I'll say, "You know, Bob." She's replies, "Bob who?" It is maddening to me.

On my last visit, I brought a picture of her and Dad for her room. She recognizes herself, but not her husband. I had also brought an old bottle of his aftershave thinking that if she just took a whiff, she would be able to conjure his memory.

During my visit, she saw the picture again and said, "Well that looks like Carol, but it doesn't look like her boyfriend." I told her it was my Dad. I received a blank look. "You know, your husband." You could see her eyes squint like she was thinking really hard. Finally, I'm like, "You know, he had a heart attack. He had a double aortic aneurysm. A corroded artery. He was on dialysis for 13 years." She looks at me and says, "Well he sounds really healthy." That part was definitely my mom. A sarcastic sense of humor.

While it broke my heart, I decided to give up on this portion of her memory. I began to set out my suitcase and a few items I had brought for the weekend, one of which was a small, blue crock bowl that I use to make oatmeal. She looks at the bowl and says, "I've been looking all over the house for that." I had forgotten it was her bowl that I took from her home when we were cleaning it out to get ready to put on the market. I couldn't believe she had forgotten Dad, but could remember a stupid blue bowl.




Be grateful for small moments. It is a struggle. Not for her. For me. Someday she'll also forget the bowl. For now, I'm glad we could share a moment. Even if it's not the moment I wanted.

I Am a Mom at 57

Be careful what you wish for. Truth.

My entire life, all I ever wanted was to be a mom. However, life seldom hands you what you want when you want it. You have to work at. After various tests and procedures, it seemed futile to continue down this path toward parenthood, so my spouse and I decided to just live our life and be content more for what we had than what we didn't.

When Mom was diagnosed (sort of) with dementia and I took over all decisions for her well being, I realized I finally had become a mom.

What is a Mom? A bearer of human life. A kisser of boo boos. A giver of all without expectation of a thank you. While I didn't fit the description of the first two items, I truly felt the impact of the third definition.

Here is a scenario of any of our outings: Put your coat on. Do you have to go to the bathroom? Well just try. Wash your hands.

I have to remember to bring Depends and another pair of pants; just in case. I think someone needs to design an adult diaper bag. Something chic.

My biggest fear is she has no idea where she lives. On one outing I felt so peculiar, I actually wrote a note with her name and address and put it in my purse. I am thinking of having a bracelet made containing this information and have her wear it when we go out.

Through all this, the only comments I get from her is on how I look like I'm expecting or my hair needs combing. Both true, but still. And that's how I envision a mom feeling. Doing a hundred thankless tasks without any compliments of what a great job they're doing.

Mom and my spouse being silly.

But at the end of the day, when you're giving hugs or laughing at just being silly together and hearing, "I love you," then you know what a joy it is to be a mom.

Even if it's at the age of 57.

Is It Time To Move?

When do you know it's time for your loved one to move into a facility? And what type of facility do you choose?

Living a few hours away from my mother and only visiting every few months, it was difficult to ascertain at first, but here are the 8 categories I have determined to view: Diet, Medication, Falling Risk, Socialization, Sleep, Finances, Safety, Wander Risk.

1. Diet - Are they eating properly? My mother was always thin, but when she lost her upper dentures and wouldn't go get new ones, she had lost a lot of weight. What she was eating was also questionable. It was either take out or anything microwaved. Nothing of good quality.

2. Medication - If your loved one takes medication, it is important to be taken as directed. When visiting, I would find pills on the floor, in the shower caddy, on the kitchen counter. Because she wasn't taking them as directed if at all, it caused a lot of confusion to the point that sometimes she wouldn't know if it was 8 in the morning or 8 at night when I called.

3. Falling Risk - Do they have balance issues and are at risk of falling? Accidents happen and you can't think just because someone falls that there is an immediate danger. But have they fallen several times? What is causing them to fall? Clutter? Declining eyesight? Dizziness? My mother had been sitting on a stool doing the dishes and forgot her feet were behind the rungs of the chair so when she went to move, she fell straight out of the chair.

4. Socialization - Not everyone is a social butterfly. But everyone does need some sort of stimuli. Is your family member getting outside for fresh air and exercise? Or have they isolated themselves indoors and come up with reasons of why they're just fine staying indoors 24/7.

5. Sleep - Do you notice that your loved one isn't getting enough sleep? Too much sleep? Strange sleep habits? For me, it was realizing my mother was sleeping on the couch for a nap. And then using it as her bed at night. And eventually sleeping constantly. Between her lack of medications, depression or a combination of both, I realized all she was doing was sleeping all the time. To the point she was even having accidents on the couch. This was something I knew my mother would never have done before.

6. Finances - Are their finances in order? I didn't find out until it was almost too late that she hadn't been paying any of her bills and already had debt collectors starting to send notices.

7. Safety - Is it safe for them to operate the stove? My brother and I didn't have a definitive answer of what was happening with Mom, but felt there could be a fire risk should she forget to shut off a burner.

8. Wander Risk - Has the confusion become so great that you are fearful should they go out of the house for a walk they might not find their way home?

Once you realize that their general welfare is no longer able to be maintained, it is time to determine how their needs can be met. Everyone's needs are different depending on if the person with memory issues is a spouse or a parent. Whether you're working and don't have the luxury of staying home to care for them or if you're retired and can't physically care for them any longer.

It comes down to can you care for your family member yourself, can you afford to hire someone to come to your home or do you find a facility for them to live in? For the latter choice, what facility works for your loved one's needs?

I have found it falls into 3 categories: Assisted Living, Memory Care, or Nursing Home. This can be tricky. Assisted Living can be perfect and many take Medicaid, but if your Mom is a wander risk, this won't work. Memory Care is awesome, but few if any take Medicaid. Most are private pay. And if your parent is still fairly young, you may not be able to afford 20 years at that type of facility. Nursing Homes also take Medicaid, but if your family member isn't in a wheel chair and is a wander risk, that type of facility still doesn't fit your needs.

Don't despair. While you don't want to make a rash decision, just do the best you can for the present moment. If there's one thing I learned in the past two years, I only worry about what is in my control. My mother started at an Assisted Living facility. When she allegedly struck a health care worker and then not long after was found by a police officer in the middle of a divided highway, it was a no brainer to realize this community was no longer a good fit.

Next stop was Memory Care. We found one place that supposedly would take a certain percentage of residents to be covered by Medicaid, but had to wait until there was an opening. Since we didn't have a choice, we found a lovely private pay facility about 30 miles from her hometown. Eventually the other place had an opening about three months later and she made her third move into her now present facility.

Will this present facility honor the Medicaid promise for us when that time comes? I can only hope  they do. But that is not in my control. And my mother is too mobile for a nursing home at this point. So we wait and see. And pray.

Do your best. Do your homework. And learn what is in your control. Take each day as it comes. And breathe.

Take Time to Travel

Don't delay spending time with family or taking that special trip. It was probably at my father's funeral that I can first recall any signs of dementia. So many people came and the lines of people waiting were so long because Mom talked about 15 minutes to each person. I was becoming distressed and my husband said to, "cut her some slack, her husband just died." I still found it strange she had no concept of time or realized that people were leaving before being able to pay their respects to Dad. I figured my husband was right and shrugged it off.

Once things settled down a bit after his death,  I wanted to travel with my Mom. She won't fly and I am limited in the length I can drive, so our trips were limited. One trip was to St. Louis, Missouri. There were a few odd moments on that trip that, again, had me scratching my head. The first was that during a horse-drawn carriage ride through the town, she was flossing her teeth. My family has never been conventional, but that even seemed strange for Mom.

One afternoon on that trip, she suddenly announced she needed to go to the bathroom. There was no where to go, so I told her to hang on and we hurried until we found a restaurant where I figured we could stay and eat and she would be able to use their facilities. We were seated and I told her to go ahead to the restroom and we would order when she came back. She looked at me like I was crazy and said she wanted to eat.

Later we went shopping. She has always been a slow shopper, but she was taking extremely long so I went outside to wait for her. I waited, and waited, and waited. Finally when she came out and found me sitting on a bench, she had a panicked look on her face. "I couldn't find you," she stated. My mom has always been so strong and independent, that it shocked me that she looked so panicked in trying to locate me.

I took one other trip with her the next year where we drove to Indiana to see her grandson and wife. It was a great trip, but the next year when she turned 75, I wanted to take her somewhere special. As I said, she doesn't fly and I don't do long distance driving, and considering her panic when she couldn't find me, I decided I needed to enlist a third person to travel with us so my husband and I took her on a two-week vacation through Colorado.

One of our first stops was to the Cheyenne Mountain Zoo where a giraffe gave Mom a kiss. She talked about that giraffe every chance she got. From there we went to Mesa Verde. She said, "You kids go on and I'll just sit here." I guess I should have been more compassionate, but I said, "We didn't drive all this way for you to sit." So being the trooper she is, she went along. I could barely make the walk back, so never knew how she did it.


Mom wanted to go on a narrow gauge railroad so we went on the Durango and Silverton trip. Later we went to Ouray and took a jeep ride straight up Red Mountain where roads seemed they could go no further yet somehow kept winding around and around until we reached the very peak. I suffered altitude sickness; Mom had no problems and she bought me a tee shirt that said "Got Altitude?" just to tease me.

My husband and I probably never would have done the things we did, but because it was Mom's 75th birthday we wanted her to have a trip worth remembering. We had a special book printed with all the great photos of our trip. She took that with her everywhere to show people; to church, her tea party group, friend's houses.

That was the last trip we took with Mom before time and this disease snuck up on all of us and stole our future. So if I can instill nothing else, GO TRAVEL - NOW!

We are still learning the ropes of what is to come and for now are still able to enjoy phone calls and visits as often as possible. I push to do as many things possible now as I know eventually even the smallest outings will come to an end. But like people who become depressed in the autumn thinking about what is to come in the winter, I say to enjoy the autumn and worry about what is to come when it arrives.

Our Journey Begins

My mother has dementia. When did this begin? We may never know, but in looking back over messages between my brother and I regarding Mom's health, we know that it was at least three years ago when he started noticing her confusion and constant sleeping.

There never was an actual, concrete diagnosis, but it was made fairly clear from the doctor that she has some form of dementia. Since that prognosis, the past year has been a blur with getting her affairs in order so that I can oversee her care. Perhaps if I share her story, your journey can be less confusing as you begin the process of what to do first. Here is my recommendation for the first three things you need to do for a parent preferably before anything mentally or physically happens to them:

1. Obtain power of attorney (POA) both for property and health
2. Obtain power of attorney (POA) both for property and health
3. Obtain power of attorney (POA) both for property and health

Did I mention to obtain POAs? When the family began to notice small peculiarities, we suggested she go to a lawyer to have both a POA and a will written up. She insisted she was fine, and truthfully, we didn't know what was going on with her. We would agree with her that she was fine and that was why she should do this now. We gave her scenarios of what ifs. What if you fell and hit your head and went into a coma? What if you needed surgery and had complications with anesthesia? What if, what if what if? We wanted her to know this paperwork was not to see how her property was divided between the family, but to protect her by allowing us to make decisions for her and not the government. I think it was the threat of the government overseeing her care that convinced her to make her decision.

Eventually she went to a lawyer and had papers drafted up, but never finalized. Long story short, a year passed and by that time she had moved into an assisted living facility. We finally convinced her to go to the lawyer and all of us went together. While the lawyer was hesitant as to her cognitive ability to understand what she would be signing, I suggested he make that decision when we came in.

It was a good day on the day of our appointment, Mom understood everything. Being it was paperwork that she herself had written up the year prior, and that it was my brother and me who were to be the power of attorneys, the lawyer agreed it would be okay for her to sign.

We were fortunate. Six months later and it would have been an entirely different ball game; most likely going to court for legal guardianship. Because we now had POAs for both property and health, we could make decisions, pay her bills, talk to doctors. Without it, we could have done nothing. 

So here I am, three years later from that first conversation with my brother and anxious to share what we have faced so far. I realize this is only the beginning, and the difficult journey of watching her slowly recede into the abyss of her mind is just starting. But, for now, life is good. She laughs, she knows us, she is healthy and happy. Most importantly, she is safe.