DO NOT PUT MONEY FROM THE V.A. AND 

SOCIAL SECURITY IN THE SAME BANK ACCOUNT!

This is called "co-mingling." The Veteran's Administration will want to know what you are doing with the money. So will Social Security. You have to have clear records of where the money was spent. We were not allowed to put any of my mother's money in these accounts. Every year I get a notice that I have to fill out exactly where this money is going.

WHY, you may ask?

Because they want to make sure I am not spending my mother's money on myself or a vacation to the Bahamas. They will ask if it is my decision or hers where the money is going. I once made the mistake of saying that I decided where the money was going. (After all, I pay ALL THE BILLS.)
Mom was declared incompetent to handle her own affairs. That was a can of worms. So I wrote back and said I made a mistake-Mom makes the decision where her money goes.

Just to let you know how ridiculous this is, mom's income from SS is about $1200 a month. Multiply that times 12 months=$14,400. Her rent is over $4000 a month. That is $48,000 a year for her assisted living.  They want to know exactly where it is going. That doesn't count medication or her supplemental insurance. All I put down on the form was her rent. I guess that answered their question.

My biggest challenge is finding the money over and above what her assisted living costs. Mom was not a wealthy person. We have just about spent all of the money from the home she and dad had, plus most of her savings. Mom is going to be 90 this year!  We never expected she could spend all of her money. Hopefully we can keep ahead of all the bills.

My advice? SAVE money for this. Don't mix the money with any government assistance.

You'd think if you called to pay a bill, someone would take your information and allow you to pay it, right?

Wrong.

One of the biggest problems I encountered while helping out with mom's care was the bills we had to pay. Because of the privacy acts, no one will talk to anyone who is not authorized. Mom was so forgetful, it was difficult to have her remember to call a credit card company and add my name. Sometimes she was compliant, but most of the time she would say, "Sandra, I can pay my own bills. Why are you trying to get them sent to you?"

Several times bills were never delivered to me. Then I pretended to be her on the phone to change it myself, because she would not cooperate. For some reason she was always paranoid and thinking we were taking her money. FYI-If you ever want bills sent to you, memorize these answers:

• Their social security number
• The account number and the 3 or 4 digit security number
• Their date of birth
• Answers to their secure questions, like: Where were they born? Mother's maiden name etc.
• Their address (might seem simple, but remember if they moved you need to know it)

I can't tell you how many times I had to change things. Dad's pension, which was a small amount of money, was auto-deposited into her bank account. She moved. I needed to get a letter from the pension place stating how much she got monthly. They refused to send it. Her address from her home with dad had never been changed. It took me 3 months to get this letter. I tried everything. They had to mail her a letter and she lost it. Without the letter I could not get the code they sent for me to go

onto the website and make the address and contact changes.  She was supposed to have a "pin number" for whenever she talked to them. She could not remember it. I tried everything: Her wedding date, dad's social security number, etc. Nothing worked. Finally she got the letter (thank God for my sister finding it) and I was able to make the changes needed.

The bank we had most of her money in was ridiculous. I made sure my name was on all of her accounts. I moved, and I wanted the statements to be sent to me so I could make sure she had enough money to pay the automatic bill payments. Even though MY NAME was on the accounts, they would not let me make changes without a written letter and HER signature.

Keep good records. Don't throw away anything you might need to refer to again. 

I started getting bills from collection agencies. I never saw any original bills (ie. hospital) I also did not remember mom being in the hospital for hundreds of dollars. So I called the collection agency and asked for an explanation of the bills. They refused to talk to me. I EVEN HAD a P.O.A. with the 

hospital and proof that they could discuss her care and bills with me.  I told them to check with the main hospital and if they could not speak to me, they would not get paid because I took care of mom's money. This was a bureaucratic nightmare. This happened more than once. Get your name on the hospital bills as well. I had mom's social security and VA letters all sent to me. If you do this, it is really hard to ever change the name on it again. (i.e.. VA-fiduciary)

The most stressful job in the world

One thing I think we never thought about is how difficult mom was going to be once she went more downhill mentally. Mom was never a warm and fuzzy momma anyway-at this stage she was downright ornery. We moved her to an assisted living community because at 88 she really needed some help. She forgot to take her pills and sometimes she would take more than 1 day of pills. Right after we moved her the community “accidentally” started to give her pills, even though she had a machine that told her when to take them. Brenda was stocking the machine and she was checking every couple of days to make sure she took the pills. So many residents had the medicine assistance that they automatically gave them to mom as well. She had double pills for 3 days when it was discovered. Luckily Brenda caught the mistake. They brought pills to mom with the date on it and she just took them, not thinking she had taken them already. The cost to dispense the medicine was an extra $900 a month. You can see why Brenda was trying to hang onto that job to save mom money.

The move seemed to set mom back and more confused than ever. I moved out of state the week after mom moved. She had been calling me 5 to 10 times a day. She didn’t know where she lived, where her stuff was etc. What made matters worse is she moved into a smaller apt. and she wanted to keep everything.

Her things would not fit but she was adamant that we not throw anything away. She had lost weight and she had clothes that were old and too large. We had to store them at my sisters, because mom did not want to throw ANYTHING away. Cindy came in town to help and by the end of the week she thought we must be saints. Mom was horrible to deal with, argumentative, and nasty. I was actually glad to move, even though I had always said I would not move until she passed away. My kids and grandkids were in Colorado, and I was just missing too much of my family. I did feel a little guilty, but not enough not to move.

I called mom every week. She told me repeatedly that I never said good-bye to her. She ended conversations often with , “Well, have a nice life,”  as though I never called her. My brother gave mom a wonderful adjustable bed, but it was a twin size, better for the smaller apartment. Mom called every one of us complaining about the “cot.” It was a $6,000 bed, and we had hoped she would rest more comfortably in an upright position, because she had been diagnosed with sleep apnea, but would not wear the mask to breathe.  She said, “Sandra, I like to flop my legs around when I sleep and I hate this cot they brought me. I want my old bed back.” She badgered my sister so much they removed the bed. Every time they went over her apt. She had moved all the furniture. They were afraid she was going to have a heart attack, moving the heavy pieces. But no one could talk sense into her. She had become our worst nightmare, and we weren’t having to be with her 24/7. I can’t even imagine caring for her on a daily basis.

Now some people might think this is cruel. All I can say is, you never know how it is to walk in someone else’s shoes. They say caregiving is the most stressful job you can have. Well, when you are an adult child, even though you may not be helping every day, your parents can stress you out like you never imagined. I have talked to many people my age and we all share in this evaluation: we never expected it could be this bad. It had to be bad for mom, being so forgetful, but she never experienced what we have. Her parents were dead before they were 60.

This is in case you have to sell a home for your parents. If I never mentioned it, I was a Realtor in the state of Ohio over a 37 year period of time.

Checklist  and information to sell a home:

• Hire a good, professional Realtor that was recommended to you if you don’t already know them

• Purchase a home warranty for the buyer (You don’t pay until home is sold.)

• Make sure you have an original Power of Attorney for the title company to do their work, just in case your parent is unable to sign when necessary.

• Find out the age of the roof, furnace, air, and the appliances are because you will be asked.

• Clean out as much as you can ahead of time-have it not be cluttered if possible.   

Know that EVERYTHING CAN BE NEGOTIATED. This means commission, the length of time a home can be on the market, how you want it shown and advertised. Your Realtor should be working in YOUR best interest. They are a SELLER’S agent when they are employed by you. You might want to ask them if there is any situation where they would work for the buyer. Some states have something called “dual agency,” which means the Realtor can represent both the seller and the buyer. I, personally, feel that 2 opposing parties cannot be represented by the same Realtor. They can write the contract for the buyer, but they are facilitating the transaction. I do not  think they can equally go to bat for both parties.  In my state it is legal to be a dual agent. I just felt I was not working in the best interest of my client  to do so.

Sometimes sellers consider having a home inspector check out their home before they sell. I never suggested that, however, because it could open up a can of worms for the seller. Once the inspector gives you the report, you now have knowledge of everything that is wrong with the home. You should  divulge anything you know on the state disclosure form. That makes  you potentially more liable. If you wait for the buyer to have an inspection, there is less chance of you having to fix EVERYTHING. Every state is different, however. I noticed this when my son purchased a home, and also with buyers coming from out of town having to make extensive repairs in their former homes.

Some people have asked if it is better to sell a home that is furnished or vacant. I would DEFINITELY take pictures of the home while the furnishings are still in place. It makes it look more homey. Believe it or not, rooms look larger when they are not empty. If you have to get rid of the furniture, it is not a deal breaker, but online a vacant room looks horrible.

Most Realtors will put a lock box on the home. This is standard procedure. It enables the home to be shown when no one is there. The Realtor registers their name with the office selling or with a professional service. Just anyone cannot enter your home without calling their office.

If you have to make repairs, make sure YOU get some estimates if it is to be professionally updated. You want to be able to control any expenditures that have to be made. They buyer will get their contractor and you will be subject to their estimate. An example: Let’s say your electrical service needs to be upgraded, or that there is something that could be potentially dangerous, like the box being a fire hazard. ( a real problem that exists )This could be a few thousand dollars or hundreds, depending on what is to be done. Ask your friends the name of a good electrician if you do not know one. This could really cost you if you let the buyer do everything. 

I had a situation where there was a chimney coming away from the home, as well as some brickwork in the front needing to be fixed. The estimates were $2000 apart. The buyer and seller settled on a price between the two estimates. It’s all in the negotiation. 

Investigate CCRC places to live or you might be sorry later

I wish we had known about CCRC. That stands for Continuous Care Retirement Communities. I had a wonderful friend tell me about this. A person can go from Independent living all the way through skilled (nursing home) care and including hospice in these places. Why should you care? Because, if the person needs more care they will have to be moved to another facility.

Mom had been in independent living for 4 years. She was still physically able to take care of herself, but her mind was going. The paranoia and inability to retain just about anything was impossible to deal with. She hid her purse at least 50 times and I purchased her a safe to put it in. Sometimes she still stuffed it in a drawer or under the bed or in a box. I spent HOURS looking for the purse. We even put a "tile" with a phone app on the purse. I changed phones and it would not work.  Money went missing and I even had to file a police report. ($300)  Some of the housekeepers decided they would take "breaks" in mom's apartment.  At least 3 times we know people were in the apartment unauthorized when she was gone. I had even thought of a "nanny cam," but I really did not want to look at video of my mother naked.  I just stopped giving her more than $20 at a time.

We found a new community for mom to move where she could get minimal care (at first) and graduate to more care when needed. It was a smaller apartment and it had french doors out to a courtyard area. This way she still had an outdoor patio and a place for plants. We also were going to save $900 a month. The money was going fast. Our biggest fear was that she would take a dive mentally. Change is not usually easy for dementia/Alzheimer's patients.

Mom fought us on the idea of moving for over a year. We were to the point that we were moving her without her consent. We had the legal power to do so, but it's difficult looking your mom in the eye and saying, "You don't have a choice." I think mom realized she was going to have to depend on us more, plus she KNEW her mind was not clear. She told me she wants to die several times.

I am in the process of moving to another state, so my blogs might not be as regular for a few weeks. I plan on resuming on a regular basis by the end of October.  Stay tuned. I am  continuously learning more than I ever wanted to know about this subject of the elderly, family dynamics, legal issues and Alzheimers.

She wasn't a hoarder, but she wouldn't let us throw away anything!

On this blog I have not explained how we FINALLY got mom into another living arrangement, but I will save that for the book.

It had almost been a year since Dad was gone, so we decided to get the home ready

to sell. I have abbreviated the community she moved to and called it PC.

Cleaning out my mother’s home was a nightmare. She grew up during the depression and they were poor. She had the mindset that nothing should be thrown away. My dad was the same way. Needless to say, she had bankbooks from accounts closed in the 1950’s that she wanted to keep. NOTHING was worth throwing away.  Every piece of clothing or old rag was an argument. This was all before we sold the home. She was moving from a 1900 sq. ft. home with a full basement to a 2 bedroom apartment. She did not want to give away my dad’s clothes, even though he was gone. We even found clothes that weren’t his!  She had clothing for herself in 3 sizes. Since she had lost some weight, I decided that the biggest size would no longer be necessary to keep. I had to hide them from her and give them away when she was at her new apartment. She insisted on taking everything and boxing up the dishes and I kept them at my home. She did not need to cook where she was going. All of us inherited some of her junk. She said, “What if I decide to move again and need these?”

We tried giving the clothes from dad and the tools to relatives. No one was dad’s size, and the guys all had tools by this stage of life. There was so much in the garage, barn and basement that we ordered a good sized dumpster. It looked like a large boat in her yard. We also had a guy come over that bought scrap, and he loaded up his truck. We tried selling some of the larger items. My dad saved everything. He was a very neat and orderly man until he got sick. His garage used to be spotless.

We went into the garage and there was literally a CARPET of mouse droppings on everything. There were bottles of screws, nuts, bolts, washers, vices, saws, hammers. The guys took what they wanted and mom didn’t want them to throw anything away. We girls kept her busy and the guys loaded up the dumpster. It was filled to overflowing.We also had a "scrapper" guy come out and take a lot of metal items.  Every time mom walked outside she would grab something out of the dumpster and say, “We paid good money for this.”  We would distract her and put it back. Their home wasn’t really cluttered. Dad just saved everything and systematically stored it all in containers on the shelves. 

She had to rent the biggest, most expensive unit in PC. She crammed hundreds of items in the closets and her drawers, putting all her shoes under the beds. What did she need 10 quilts for? She fought us on everything. Her apt. is so cluttered. I am just glad I don’t have to live there. She kept everything she possibly could.There were at least 5 artificial flower arrangements just in the small living room-and they are old and look bad.

One sad thing about moving her is that 4 years later she still was asking us about clothing we gave away, a tv set that was in the dumpster, and countless other items she did not need. But with dementia she could not remember anyway. 

Mom’s car was the craziest story. After Dad died we noticed a horrible odor in the car. It was like something was decaying in the trunk. But we cleaned it and disinfected it but could not find the source of the smell. Dan finally took it to a detailer. He had to drive with the windows down in order not to throw up.

The detailer called Dan and with a thick, foreign accent said, “Mouse. Mouse everywhere. Mouse babies, dead mouse, mouse parts everywhere.”

 “What?”

Apparently, when the mice got in the garage to eat the grass seed, they squeezed into the car doors. Then they had babies. Then they died. They were stuck in the doors. That is why it smelled SO bad!!! It cost over a thousand dollars to get it refreshed.

After Dad got sick the mice must have taken over the garage. It used to be the cleanest garage I have ever seen. You could have eaten off the floors. He put grass seed in a filing cabinet and must have forgotten it was there. That is great mouse food, so they found it and took over his whole garage.

The biggest challenge we had in moving her was the rent payment. For the 2 br 2 ba apartment it was $4300 per month! Now there were 3 meals a day, some light housekeeping, bus service, and entertainment. There was no "care" in the cost, but at this stage mom did not need care. She needed to have a social life, and this was perfect. 

A HEALTH CARE POWER OF ATTORNEY IS NOT THE SAME AS A LEGAL P.O.A.

A Medical Power of Attorney (also known as a Health Care Power of Attorney) gives someone you trust the legal authority to act on your behalf regarding health care decisions if you ever become incapacitated or unable to communicate. 

Why is this important? If your parents (or spouse) has an accident or for some reason is incapacitated, they may not be able to discuss their medical care options. 

When my father was in the hospital psychiatric ward, they asked us if any of us had a health care P. O. A. At that time we did not, so they gave us forms at the hospital to fill out.

This is my first piece of advice: Get health care powers of attorney for your parents in the event one is needed. Otherwise, the staff at the hospital will not follow any directions you give them.

Do Not Resuscitate (DNR) I went to the www.ohiobar.org

for this information for the explanation. We did have this for my dad.

What does DNR mean? 

DNR stands for “Do Not Resuscitate.” A person who does not wish to have cardiopulmonary resuscitation (CPR) performed, for example, may make this wish known through a DNR order. A DNR order also addresses the various methods used to revive people whose hearts have stopped functioning or who have stopped breathing. Examples of these treatments include chest compressions, electric heart shock, artificial breathing tubes and special drugs. 

When completed by a doctor (or certified nurse practitioner or clinical nurse specialist, as appropriate), these standardized DNR orders allow patients to choose the extent of the treatment they wish to receive at the end of life. A patient with a DNR Comfort Care-Arrest Order will receive all the appropriate medical treatment, including resuscitation, until the patient has a cardiac arrest (heart has stopped beating) or pulmonary arrest (breathing has stopped), at which point comfort care will be provided. By requesting a DNR Comfort Care Order (DNR-CC), a patient chooses other measures such as drugs to correct abnormal heart rhythms. With this order, comfort care or other requested treatment is provided at a point before the heart or breathing stops. Comfort care (also called symptom management or palliative care) involves keeping the patient comfortable with pain medication and providing palliative (supportive medical) care. A DNR-CC does not mean “do not treat.” Your doctor can explain the differences in DNR orders. 

At the time of this printing, Ohio has two trigger points for the DNR protocol (the DNR Comfort Care and DNR Comfort Care-Arrest), but DNR protocol changes are being considered. Consult your health care professional for details.

**I suggest you speak to your doctor(s) about these. Usually the patient  or the spouse is consulted when this paperwork is being completed. It was difficult for my mother to choose the DNR for dad. Luckily, we never had to use it.

(My mother had a DNR-CC.)