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. 

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.