Reality

My goal was to help others navigate through all of the confusion when it comes to making decisions for their loved ones. Here's the reality. That's what I want someone to do for me. Just take my hand and walk me through this mess.

So instead of guiding others, I am turning this into a journal. A virtual therapy to keep me from screaming into my pillow at night.

Where are we currently? Limbo. Until the money runs out, there is not much more to do. The car has been sold and the house emptied of a lifetime of memories. After months of back breaking labor, we finally got her property into sellable condition. While thankful it finally sold, it was sad to walk out the door for the final time.

Unfortunately, this may have been my first mistake. By selling the house, I may lose her VA benefits that we worked so diligently to receive. On paper, it appears she has too much money for benefits. In reality, if they cut off her funding, her current assets will only last two years. To say I had a slight breakdown is an understatement. I sobbed so intensely and uncontrollably and lost all hope. Over time I have come to an, "it is what it is" mentality and now wait each day for their final decision.

Luckily I have a spouse who keeps me sane and keeps great financial records in preparation for the time we will have to apply for Medicaid.

For now I am trying to hold on with weekly calls to my mom and visit as often as I can. The guilt of being so far away gnaws at me, but I know she is happy and well cared for; and that is what I cling to for now.

Mom with her son-in-law; celebrating her birthday. This is their "normal" personalities showing.

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.

Finding the Funds

How does anyone afford assisted living or memory care facilities?  Before you do anything, imbed the person you are caring for in your memory bank. Remember that face and that you are that person's only link to needed care. Trust me, you will be a pit bull on an ankle in your perseverance of all their needs.

My mother is not a wealthy woman. After assessing checking, savings, insurance policies, investments and bonds, let's just say she would outlast her funds in a short period of time.

I was made aware of Veteran's Assistance after my Mom had already been living for six months at an assisted living facility. While that scenario is no longer, she could have afforded the monthly fee between VA benefits, her pension and social security.

In the meantime, after getting gut punched with news that we had to find a new facility for Mom due to various reasons, I let another six months pass before attempting to get VA benefits. It was just so overwhelming. I didn't know where to begin the process.

You Should Never Have to Pay to Receive VA Benefits
Where the company that would originally have helped guide me through the process when Mom was at the first facility, now was going to charge me a fee for their services. This just didn't sound right to me. I went to an attorney who gave us a free consultation of how we could do an estate plan that would save the house for my brother and still be able to spend down Mom's money before applying for Medicaid. For 10 thousand dollars, we could do this plus they would fill out all paperwork for filing for Medicaid and my brother would keep the house. It was exactly what we needed.

Before committing to this, I wanted to hear from another lawyer. Again, we had a free consultation. Unfortunately, that attorney said due to the way Mom's will was written, we didn't have the authority to create an estate plan. Which lawyer was correct? What if I had spent the 10 thousand and then was told we couldn't do the estate plan? Would be just have gotten an, "Oops," from the attorney?

Why I was so afraid of filling out paperwork for VA on my own, I have no idea. However, when I called the second lawyer with a question and then she wanted to meet with me and my husband to discuss my questions, that cost me $500.

$500? That was just a half hour. I quickly realized this could cost me a fortune by the time we were done. At that point I thought to myself how ridiculous this all was and called the VA office in the district my mother's new facility was located.

God must have intervened as the lady I contacted walked me through each step, let me send in the required documents piecemeal and once everything was received, filled out the paperwork and sent it into the proper VA office. Voila!

Don't get me wrong. There were many other steps and procedures and hoops I had to jump through before all was said and done, but I got 'er done.

The VA became my hero.

Not Everyone Qualifies for VA

• The person or their spouse had to serve during a war.
• If it was the person's spouse who was a veteran, the surviving person cannot have remarried.
• It depends on the type of facility your loved one is living in.
• You can't have over a particular amount of money.

The above items are just some things I remember, but see below for link to do your own research.

https://explore.va.gov/pension/spouses-dependents-survivors

Depending on how long my mother lives, we will still most likely have to apply for Medicaid in the end. But the VA Pension has definitely helped push that date a little farther into the future.

It's been an interesting journey. And I am very thankful for everyone I have dealt with at the VA in their guidance through this process. Each member was very knowledgeable, polite and went the extra mile in helping me through the entire process from beginning to end.

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.

Putting On My Big Girl Panties

My mother was always a very strong-willed, independent woman so my brother and me couldn't figure out how to tell her it was time to seek help.

Her living conditions had become deplorable. She had lost her dentures and wasn't eating properly. Medications were taken haphazardly if at all. It appeared she was basically sleeping 24/7 and she didn't know if it was day or night when I called.

I hounded her to get a will and POAs drawn up and suggested she move out of the house into an assisted living facility almost to no avail. Then magically, it seemed almost over night, my brother texted me to inform me she had found a place in town and was moving within the week.

Had she never made the initial move, I'm not sure to this day what would have happened. While this move was a game changer, it wasn't long after that things started going south. I discovered payments hadn't been made, she was starting to receive collection notices and she only had a particular amount of money left in her checking account. And she still hadn't finalized the POAs.

After commiserating with a cousin and picking his brain for suggestions of what he and his sister did with their parents, he basically stated, "It's time to put on your big girl panties." I knew he was right, but wondered, "Can I really do this?"

Basically, I felt like I became an overbearing, bossy broad. I have a better word, but can't bring myself to use it! I made an appointment with the lawyer she had originally gone to. It was iffy, but basically he told me that if he felt Mom was capable of understanding what was transpiring he would agree to finalize the paperwork. After all, she had drawn up these papers the year before and nothing was being changed. Also, it was her children who were seeking assistance so they could help her and not a stranger. The day we went, Mom was in top performance and everything went smoothly.

Now we had the means to make decisions for her. Originally, my brother was going to be the Medical POA as he lived in the same town and could take her to doctor appointments, etc. I was to be the Property POA and would pay the bills.

After she moved out of the house, I had the freedom to take all her boxes of documents dating back to approximately 1965. She also had a metal box that she always referred to as her Death Box. We always joked about it, but I must say it came in handy for the most part as it contained information regarding banking accounts, bonds, insurance policies and the like.

At this stage of the game, Mom was able to go with me to a lot of the appointments I had to do. The first thing I did was have her cash a bond that her mother had purchased for her at the time of her birth. This helped get us some money so we could start paying off all the delinquent bills. I also had my name added to her checking account and then created an online account so I could pay bills electronically as I lived 3 hours away from her.

Schmuck is an understatement of how I felt about myself during all of this. I had taken her Death Box, cut up a credit card, eventually took away her checkbook. But I also knew she was now protected and we could make decisions for her.

Over the past 3 years, we have sold her car, had a sale and sold most of her possessions, gave the rest to charity and finally sold her home. All this without her knowledge. Most of this took place after she declined further and had moved into a memory care unit, but it still felt wrong. And mean. And ugly. I guess that's why they call it Tough Love. Not sure if that means tough on the person you're trying to protect or tough on the person doing the protecting. Either way, it's tough.

Guess that's how big girl panties feel.

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.