Who Cares What Nansi Thinks?

Today Mom came over to bake Christmas cookies. Half the fun of the day was going through the cookbook that Temple Baptist Church put together in 1976. That's the church I grew up in. We read all the old recipes and reminisced about the people who submitted them. We remembered times good and bad.

Mom had the big eyes as far as baking went. "We should make these and these and these and these...." She had grandiose plans on all the items she was going to make without needing my help. In reality, all she could manage today was crushing some graham crackers and greasing a baking dish. But she enjoyed being in the hubbub and interacting with my kids and their friends. We made chocolate fudge, peanut butter fudge, seven layer cookies, raspberry cookie bars, sugar cookies, kiss cookies and rice krispie treats. I'm exhausted and jazzy from the sugar high!

Mike's favorite is peanut butter fudge. One of his employees used to give him a pound every Christmas. Like so many of us, she was just too overwhelmed to do it this year. Mike's such a good egg, I didn't want him to do without his favorite Christmas treat, so I figured I'd brave it and make it myself. Can I tell you how intimidated I was????

Mom and I poured through the cookbooks looking for the perfect peanut butter fudge. Mike doesn't like the sugary, gritty kind. He likes the fluffy kind--made with marshmallow creme. None of my books had the latter recipe.

So we plopped the laptop up on the counter and googled it! I had my daughter read me the ingredients and the instructions. Suddenly I was whisked back in time....

My parents worked at Disney World when I was a kid. General Electric had this neat "ride" that showed the progress of technology and electricity. I think it was called "Carousel of Progress" or something like that. In this attraction the people moved. The entire audience advanced around the track to each phase of our country's history with electronics. They all took place at Christmastime. There was the gay 90's (18), the flappers of the 20's, the June Cleaver 50's, etc.

The very last segment of the G.E. attraction was a speculation of how the future of electricity would be. The family is well coiffed and snappy. The mother is standing at the stove cooking and she remarks over her shoulder, "Amanda, check my computer for the best fudge recipe!"

I remember as a kid thinking how stupid it would be to have a computer in the KITCHEN! Having my own daughter reading me cooking instructions from a computer in my kitchen was a surreal moment indeed. The future is now, it seems.

I have a sister who lives in Michigan. Her health is poor and she lives with constant pain. She also has a husband who depends upon her to care for him, his health is very bad. But you know what? She doesn't forget Mom.

She writes long letters often. She sends little gifts now and then, and big ones on the holidays. I have a huge box for Mom that she sent. I'm saving it for Christmas. Mom knows it's here and is just tickled pink at the thought of it!

If you are NOT the primary care giver for an elderly parent, please do what my sisters and brother do. Stay in touch with your elderly parent. Let them know that they're in your thoughts. Those actions help more than just your parent.

It is SO nice to see Mom smiling from ear to ear after she's heard from one of my siblings. It truly brightens her day. And that makes MY day easier too!

Make the effort, the gift goes farther than you know.

I don't like how far flung we are. I miss my sisters and my brother. We are all so entrenched in our lives that travel is just too difficult. Our immediate families require all of our time and attention and the thought of being away for even a day or two seems like an impossible dream.

I used to say, "Come, before it's too late." I didn't mean to lay on a guilt trip. The sister that is so faithful to stay in touch and send care packages hasn't seen Mom in well over a decade. I envy her that. Her mental picture of my mom is so different than mine. The last time she saw her, Mom was still driving, sewing, living alone. She'd be unpleasantly shocked to see Mom now. And what would be the point? Mom genuinely feels her love. Mom doesn't "miss" her, because her frequent contact keeps her so close. She gives Mom the best of herself. I cannot stress enough how important a roll she plays in Mom's well-being.

To all my beloved siblings, thank you so much for being there in the best way you can. I hope this holiday season finds you warm, peaceful and pain-free. I love you.

Over the past few weeks I've dealt with several families who are trying to "save the house" from being taken by the state.

There are a few things you should know as your parents age. Before I go into that, I'd like to give you perhaps a new way of thinking. The common phrase I hear is, "They've worked so hard all their lives just to have it all taken away by the state." The state isn't asking for something for nothing. Nursing home care is very expensive. It's hard to find good people who want to care for the elderly and to keep them requires a high wage. It's a stressful business. If you can see nursing home care as a ministry rather than a band of people trying to rob you of your inheritance, peace of mind will come to you sooner.

We live in a country where the many people believe that health care is an entitlement rather than a benefit. Those people expect the government to pay for their parents' care, while at the same time resent the fact that the government expects to either be reimbursed or provided with proof that there are no resources to pay for the care. Another mindset that should be analyzed, I suppose.

If your parents own their home and are going into a nursing home, here are some things to know: 1) The new federal "look back" period for property transfers is five years. (It used to be three). If a piece of property is given away or sold for less than fair market value, there will be a period of ineligibility for Medicaid. "Period of ineligibility" is a nice way of saying "you have to pay for it". So YOU may benefit if Dad signs his house over to you for $1, but DAD will have to cash out his CD's and stocks to pay for his care. If you want your parents' home, buy it at fair market value, OR have them sign it over to you when they are in very good health and have at least five good years left. That's a difficult prediction to make. Most of the people I encounter miss the mark.
2) When filing for Medicaid, check "yes" on the question "Do you intend to return to this property" Yes, your loved one may be on hospice, have Alzheimer's, etc and you know they won't ever go home. Checking that "yes" box protects the property from consideration and will not be counted as an asset or resource. 3) Federal law mandates vigorous estate recovery. When your loved one dies, the state will want to be reimbursed from the estate. So that protected house will have to be sold.

In order to ease the burden on the family, an aging adult should see an Elder Law attorney for estate planning. They should purchase an irrevocable burial plan. The law allows for some cash to be converted into "income producing annuities". With an annuity, it's the income that is counted as an asset rather than the whole lump some of the annuity. For example, if you have a $1,000 annuity that pays you $10 per month, the state will look at the $10 monthly income as the asset, not the $1000 annuity. (Note: There are limits to how much money you can sink into income producing annuities.)

No matter how old (or young) you are, the time is now to prepare for you old age. I cannot stress this enough. While the last year has been incredibly taxing on me, I'm grateful for the experiences I've had and the information I've absorbed.

Mom's just slipping. Her physical health is pretty good. Her mental health is so troublesome. She's lost most of the time. Literally. She wanders around the nursing home, wondering what day it is... what time... She can't find my office anymore.

She wanders into administration and goes into every office door. I've been told that she'll go into one office, not see me, then leave. Then she'll turn around and go right back in. If I see her, I'll go get her and wheel her in.

The hoarding continues to grow and grow. She saves everything and spends her days sorting, stacking and "organizing". It's all undone at the end of the day because her sorting is done on her bed and it must be cleared for her to sleep.

The prospect of acquiring really energizes her. It doesn't matter what the prize, it's the acquisition that thrills her. She saves beads, packs of catchup (she hates catchup), bendy straws. Her largest collection is the little postcard pullouts that come in magazines. Sadly, she also pilfers prizes from her neighbors. Most are very understanding and just quietly take their belongings back.

Her long term memory is beginning to intrude upon the present. She asks me where clothing is that she hasn't worn in years. She thinks she sees people who are long dead.

One of the nurses approached me today and asked if I'd noticed how my mom's dementia has escalated. Yes. I've noticed. I'm at a complete loss as to what to do? I know she's safe. I know she's well cared for. She might complain about "the service" but they really do look after her.

What's next? Tomorrow. That's what's next. And we'll take it a day at a time.

My mother asked me to buy a refrigerator for her the other day. (NO... NO...NO... and if my siblings are watching, I swear I'll pack her up and send her to YOU if you buy her a fridge! Don't DO IT!!!)

;o)

All my life, whenever there's a refrigerator in my Mom's life, it's got this puddle of brown goo under the crisper drawers. Not IN the drawers, under them. This is a mystery that my sisters and I have pondered on several occasions. We grew up with the goo. But none of us have had the goo in our own refrigerators.

OK, I had the goo. But only after Mom moved in with me. I haven't asked my brother, but once she stayed at his house for several months. I wonder if HE got the goo. (I know she kept a bowl of cookie dough under her bed for several weeks while she was there.) As soon as Mom moves out, the goo disappears. WHAT IS IT???? What combination of stuff do you have to buy and ignore in order to get the Brown Goo.

I'm open to answers out there. Anybody have a clue about the goo?

Anyway... I told my mother in no uncertain terms, no fridge. It's back to the hoarding. If Mom had a fridge, she'd save every uneaten morsel of the food she hates so much. Her bureau drawers are filled with bread slices, hard as boards, butter pats and salad dressing packets as it is.... imagine what she'd do with a fridge....

Has it really been over a week since I posted? So much has happened.

Mom is becoming more and more confused. She has a hard time finding my office. She loses things. The clutter in her room is becoming a nightmare. In spite of all that, she's in pretty good spirits. She and her room mate continue to bond. Roomie even coaxed Mom to a BINGO game! (Lord have mercy! Mom's gambling!) Mom even won a game or two. Mom has also begun eating lunch and dinner in the dining room. She's made friends with a great lady who just loves Mom.

I've come to the realization that my time at the nursing home is coming to an end. My job is taking such a toll on me. It's not because of Mom. The job itself is impossible. If there were THREE of me, my work wouldn't get done. Just when I think I might have a few hours to tackle the workload, I either get sent home because of low census, or some customer service crisis requires "all hands on deck"--which means, ME out of the office again. My co-workers seem so good at handling the chaos. For me, I'm not sleeping. I feel ill most of the time, and by Sunday afternoon I'm a nervous wreck about the piles of undone work on my desk.

It's time for me to go. I talked to Mom about it a little. Her initial reaction was "don't leave me here!!!" She later came to my office and told me not to worry about her. I know she's afraid, but I think she's ready. She's made a lot of friends. So have I. I know that my friends will look after her.

I have so much guilt about the prospect of leaving the nursing home.

The other day my son's teacher called, he'd lost his science folder. When I talked to him about it, he said, "Mom, I've been looking all over for it. I didn't tell you because I didn't want to add to your stress." Hello? He's NINE and he's worried about my STRESS!!! I've neglected my children so that I can care for my mother.

More guilt.

Who knows what will happen next? In the mean time, I've got a bunch of resumes out. My utopia? Mom comfortable and safe. My marriage tended to, like it's supposed to be. My children feeling like they have full access to their mother. And for me? Maybe a full night's sleep and a job that wasn't impossible. That would be Utopia.

You pray-ers out there? Keep me on your list, OK?

My Mom is compulsive hoarder. I guess she always has been. I remember as a kid, my parents would find a new house, move what they wanted into the new house, and never go back to the old house. When my dad died, my mother came with mountains of stuff. I couldn't determine what was what. We stuffed it all into a storage unit that my mom never paid for, so it was gone. (Another one of Mom's closely guarded secrets.)

Over the past few weeks, my mom has made it a point to come to the business office every day. No particular reason, just to say "hi". That visit relieved me of the guilty walk to see her in her room every day.

A few days ago, I went to Mom's room. Oh my god. It was a MESS. Poor Roomie! Her side of the room is neat and elegant, Mom's side is a horrible pile of JUNK. I know the nursing home is in a dilemma. They want the rooms to be neat and clean, but the resident has rights as well. (I had occasion to speak with Roomie's daughter yesterday while they were both at Red Lobster. I begged her to let me know if my mom was overwhelming HER mom. She said, "Are you kidding me? My mom LOVES your mom!" I was surprised to learn that Roomie is only three years older than my sister. Turns out they're the perfect fit, my mom needs to need and Roomie needs to be needed.)

Mom spends her days "organizing". She spreads out her piles of stuff. She nags for folders and file boxes. (Which sit unused in a pile of their own.) Nothing ever gets mitigated, and at bed time, the nurses are forced to just throw the piles on whatever surface remains so that Mom can get into bed. That makes the day of "organizing" a wasted day.

It could be worse, I know. I once talked to a family member who lived across the country from her mother. She had been contacted by the local health department. Her mom was like my mom in that she was able to sound perfectly fine and sane on the phone for an hour or so. So the lady thought her Mom was fine. The Sunday phone calls were chatty and fun. What she didn't know, until the health department informed her, was that her mother was living in horrific squalor. Someone in the (very upscale) neighborhood had called the authorities because of the smell. The lights and water had been turned off for months. One bedroom in the house was filled from floor to ceiling with dozens of thermal picnic coolers. Upon inspection, it was discovered that her mother was using each cooler as a toilet until it was full. Then she'd apply the lid, and add it to the collection in the spare room. It was obvious that her mother had lost her mind.

I encourage you to read the article in the link below:

http://www.childrenofhoarders.com/coh5.php

Hoarding poses so many problems including fire hazards, depression, physical fall hazards, and health risks. In my mom's case right now, she's got so much junk piled everywhere, her only choices are to either lie in bed, or sit in her wheelchair. She has crap piled high in her recliner, so she can't sit in that. The physical result is the beginning stages of bedsores on her rear end. She sits in a plastic chair all day. Sometimes the aides can't get her to go to bed at night, and she winds up sitting up in her wheelchair half the night.

Yesterday they took a trip to Red Lobster. That was my chance to go tackle her room. She is a bona fide hoarder. Hoarders collect whatever they can collect. For Mom it's bits of food, condiments, straws, cups, etc. I try to keep mom's snacks organized. I bought her a plastic container. Yesterday she had books piled on top of packs of crackers and applesauce. The corners of the books had ruptured the fruit packs... what a sticky gooey MESS!!!

Mom's room isn't any bigger than a hospital room, and only half of it is hers. I didn't even tackle her drawers, just the surfaces. But I still managed to remove two large bags and a giant box of CRAP! That is the story of my life! Cleaning out my mom's messes. I thought that once she was in a nursing home, I'd never have to haul mom's weird crap out in garbage bags again. WRONG.

Mom had a tiny apartment with an efficiency kitchen. You would be AMAZED at what she could get in there. On day #1 of the clean out, I threw out nineteen lawn and leaf bags full of expired food. What wasn't expired filled THREE large grocery carts, which I parked in the lobby with a "free for the taking" sign on them. That's just the kitchen. It took days and days and days to get the rest out. There were piles of fabric that I have moved around since I was ten years old, now moth eaten and rotted. Patterns, books, magazines, damn roosters, roosters, roosters. *ugh*

Back to yesterday.... I can't say that Mom's room is CLEAN, but it was a heck of a lot better. She came tooling up to me after her Red Lobster trip with a bag full of leftover containers. We have a seven day rule on food. Each container must be marked with the resident's name and the date. So I began labeling. I opened the first one, there was a scoop of cole slaw and a biscuit. The next held her entire meal! The chicken, the rice, all untouched. The last was the biggest damn piece of chocolate cake I've ever seen. She went to the restaurant and didn't touch her meal. She wanted to keep it. Hoard it.

Sometimes I worry that I will drown in my mother's mental illness. Someone gave me a link to an article today "Keeping Your Mind While Your Aging Parents Lose Theirs." Good luck with that, hope it works!

The holidays are so stressful. I am SO sure that God didn't send his Son to Earth so that 2000 years down the road, people would be beating the crap out of each other in the malls for the latest widget. But here we are.... heading in to the holidays, doing just that.

I've noticed that depression is becoming pretty rampant in the nursing home. More and more residents have that thousand mile stare. It starts with Thanksgiving. About 30% of our residents have nowhere to go and no one to come see them. Sadly, there is only so much we, the employees, can do to cheer them up. We try, but we're not family. Sometimes I think it would be better if we could rip the calenders off the wall and pretend that it's just any old day.

Most of you who check my blog regularly are in the same situation as I am in. You're trying to live a life with ten different situations demanding your best. So to ask you to adopt a nursing home resident would be an impossible request.

Funny. About two years ago, long before I ever imagined that I'd be where I am today, I wrote an email to a friend. I said, "You know, I'm feeling really drawn to adopt an elderly person in a nursing home. Someone who doesn't get visitors. But I don't feel right doing that while my mom's still living." The reason I didn't feel right was because I wasn't interested in being there for my own mother. It wasn't because I didn't love her, or that she didn't need me. It was because intimacy with my mother is so very hard for me.

As the holidays approach the dilemma we care givers struggle with is trying to meet our (self imposed) obligations and eek out an enjoyable experience in the end. I think there are a few ways we can make it through the next few weeks with our sanity in tact for the New Year's Eve party.

First, dial it back. Don't make huge holiday plans that will be difficult to implement. Enlist the help of those around you. The very nature of the caregiver is to act as though we are the only people capable of accomplishing the goal. (That's how we got into this mess!) Delegate. Do a potluck instead of a seven course meal you have to prepare for yourself!

Reminisce. Talk about days gone by, especially with your elderly loved one. Remember the past fondly with them. Tell your children about your own memories and encourage them to share theirs.

Escape. Find a way to sequester yourself without a task or goal--unless your goal is to relax. It is so important to emotionally/spiritually refuel. I belong to a remarkable on-line group of adults who have taken on the responsibility of their parents' welfare. All of them are struggling and overwhelmed. There doesn't seem to be a free moment. It is so important to spend some time on yourself.

The other night, I about broke my back setting up a place to spend time alone. I needed to move some furniture, but I set up a corner in my bedroom where I can have a chair and footstool, my laptop, a lamp and a stack of books. I've made a commitment to myself to spend at least a half hour a day up in that chair. Today is the third day. I can already feel the difference.

What do you give an elderly person? That is such a hard one. People who live in nursing homes and assisted living centers have so little space. It's important that you don't send them home with more stuff than they have room to accommodate. I asked around the nursing home and came up with ten items that our residents would LOVE to receive and would create a storage issue.

1. Large print anything. Be it books, a subscription to a large print Reader's Digest, magazines, puzzles or newspapers.

2. Stationary and stamps.

3. Nice smelling lotions.

4. If they live in a facility, a home cooked meal is a favorite. You can arrange with the nurses to bring the meal in and have them warm it up. (Be sure to check for diet restrictions.)

5. Easy to wear clothing. Buttons and buttonholes are a challenge. Velcro is a gift from the gods! Some suggestions would be pull over tops, pants with elastic waists, cardigan sweaters. Make sure the pants are a little on the too-short side, pant legs tend to get caught in shoes, walkers and wheelchairs.

6. Pictures. One idea might be to make a calendar with a family picture for each month. Staples and Office Max offer printing and binding services. Here is a link to a how-to site for making your own: http://desktoppub.about.com/cs/calendars/a/calendarideas.htm

7. Books on tape or CD.

8. Home baked goodies. (Check for diet restrictions first.)

9. Books with short subjects such as an anthology of short stories, poetry, or word games. Sometimes they would like to read for just a short period, a book of essays or short stories is just the ticket!

10. A blast from THEIR pasts. A Glenn Miller CD or a book that was popular in their hay days would be great. Borders often has small books with a particular year or decade that have all the events and trends of that era.

Probably the best gift you can give everyone in your life is a "less frazzled you". Here's hoping I follow my own advice! :o)

Make no mistake about it, putting your loved one in a nursing home is the hardest thing you'll ever do. I've sat with tearful and stressed out families who try to comfort themselves with "it could be worse, I could be sitting in a funeral home..." But the truth is, planning a nursing home stay is much more painful and stressful than planning a funeral.

There are so many things to consider. How will the facility be paid? What level of care will be required? How will we tell mom or dad???

If you have an elderly parent who is NOT in a nursing home there are things you can do now to prepare the way. First of all, forget about buying Mom's house for a dollar unless you're sure it'll be at least five years before she needs skilled care. The new "look back" period for federal funding has gone from three years to five years. When a Medicaid application is made, any transfer of property must have been done at "fair market value". The difference between "fair market value" and what you actually paid for the property will be considered as a period of ineligibility for coverage.

Very few people have the means to pay for nursing home care. Our nursing home costs nearly $6,000 per month. PER MONTH. That doesn't include things like hair cuts, therapies, etc. My nursing home has about 175 people in it at any given time. Fully one hundred of them are on Medicaid. Ten of those people are on a VA (Veterans Administration) contract. Two or three are private pay. The rest are in their 100 days of Medicare coverage and are just weeks away from needing Medicaid.

Medicare pays 100% of skilled nursing home for 20 days. After that, a daily co-payment is expected in the amount of about $125 (depending upon the area) for the next 80 days. Then it's over. There's no more coverage. That 100 days is dependent upon the patient's condition and at least three days stay in a hospital prior to admission in the nursing home. As long as they are getting therapies and are improving, Medicare pays. But if their condition deteriorates or stagnates, their nursing home need is considered "custodial" and is therefore not covered. And that "custodial" determination can come as early as Day #2. Don't think "Medicare supplement" will cover after that 100 days. They don't. They pay as long as Medicare is paying. And if it's Federal Blue Cross, they only pay 9 days. Day 21-30.

That being said, there are five things you should do while your loved one is still capable of making decisions for themselves.

1) Look into long term care insurance. (If you can't do it for your elderly loved one, do it for yourself. Do it for yourself anyway!) LTC insurance usually covers for about three years. Right now most of them pay you directly and don't assign the benefit to the nursing home. Nursing homes aren't too helpful in filing claims when they won't get the check directly. This is something to discuss with the broker when you sign on. It saves a lot of time if you can "assign the benefit" to be paid to the facility.

2) Get a power of attorney. You can set it up so that it only comes into effect when the loved one is unable to make decisions for themselves. Sometimes POA's frighten the elderly because they think they'll lose control of their lives if they enter into a Power of Attorney situation.

3) Set up a living will. When it's done, forward a copy to your loved one's physician so that they can have it on file along with the medical records.

4) Streamline the bank accounts. There should only be one checking and one savings account. Obviously there may be CD's, IRA's, trusts, etc. But for day-to-day managing, the fewer checking accounts, the better. Impress upon your loved one to always have about a year's worth of statements on hand for every account they have.

5) Establish an irrevocable burial trust. All funeral homes in the United States are familiar with this kind of transaction and can advise you on how to set this up. These trusts are protected assets and cannot be considered in a Medicaid application. Your loved one may already have a life insurance policy that can be rolled into an irrevocable burial trust at little or no cost to you.

One more thing, have an honest and frank discussion with your loved one about long term care. Don't promise never to "stick them in a nursing home". With the advances of modern medicine, the chances are very slim that your loved one won't require long term care. By not making that promise, you will save yourself a lot of heartache in the long run.

I hope as you read my blog, you come to the conclusion that I have a calling in my life to care for the elderly. I'm not special. I work with a whole crew of people who care as much as I do, if not more. We love our residents dearly. We listen. We share our lives with them. We hold up their loved ones when they feel discouraged or guilty. We grieve at their passing. Going to a nursing home isn't a jail sentence.

In our home we do some really great things. There are church services of all sorts several times a week. We have a "breakfast club" of residents who love to go out for breakfast. We take Red Lobster trips. My own mom organized a "cookies for the troops" project where the residents followed desert-friendly recipes and packed care packages to be sent to Iraq. On Halloween, we asked the families to donate candy and opened the nursing home to local children for a safe trick-or-treat night. Everyone had a GREAT time. My mom's favorite time of day is "Morning Coffee and News". Every day our kitchen prepares coffee, tea, and cocoa along with scones or muffins. Someone reads the newspaper and they discuss current events.

I can honestly say that my mom's life is greatly improved since she's gone to a nursing home. She used to sit alone for days on end with very little contact with the outside world. Now she's made friendships, she gets balanced meals, and nursing attention.

So while putting your loved one into a nursing facility may be the hardest thing you ever do, it may also be the kindest thing you'll ever do. God bless you as you make this journey.

Well, today is Thanksgiving. We took Mom to Mike's family dinner. She seemed to have a good time. I was surprised to learn that while I was parking her wheel chair in my office (after getting her settled into the car), she told Mike that she was ready to die. She turned the conversation into a little sermon about going to Heaven and knowing how to get there. My mom, the eternal Baptist!

My mom and I are alike in so many ways. We have similar senses of humor. We share the same taste in clothing style. We like a lot of the same foods, and tend to swing a bit right of right when it comes to politics. (Vote for Fred Thompson, Vote for Fred Thompson)

What sets us apart from each other is the choices we make. Isn't that what makes us all different?

Several years ago I read a life changing book called "The Four Agreements: Four Steps to Personal Freedom" by Don Miguel Ruiz. In a nutshell, the four agreements are:

1) Be impeccable with your word. (Don't lie or make promises that you know you can't keep.)

2) Don't take things personally. (It's rarely "about you", when people slight you or offend you-- it's about THEM and their problems.)

3) Don't make assumptions. (Operate off of what you absolutely know to be true, NOT what you assume to be true. Ask questions, get the facts, then formulate your response to the situation. I'll elaborate more later)

4) Always do and give your very best. (Your best will vary from day to day--depending upon your health or situation.)

Don't make assumptions. Once I began to implement this "agreement" into my every day thinking, I was totally set free.

My mom assumes the worst in almost every given situation. She seems to prefer to take offense rather than see that there may be another truth at play.

Assumptions aren't facts. They aren't forced upon us. Assumptions are choices we make. In every situation, we have a choice about how we'll assume the unknowns. I'm always saying this to my mom (and my kids). "Don't make assumptions. But if you just can't help yourself and you MUST assume, for GODS SAKE, choose an assumption that won't piss you off!!!"

My mom will come flying to my office with one complaint or another, backed up by what she assumes to be true. It's almost never positive, and rarely the true situation at hand.

Case in point: One day a man asked Mom to do some mending for him. He put them in a plastic bag and left them with her. Later that day, an aide found the bag of his clothes and put them back in his room. That was the day that we moved 40 residents from the second floor of the building to the first floor. Lock. Stock. And barrel. All 40 of them.

Mom stormed down to the business office. Her story was "They thought I STOLE Tom's clothes, so they TOOK THEM OUT OF MY ROOM and put them back in HIS room!!!!"

I said to my mother: Ok Mom, here's what we know to be true. Tom gave his clothes to you to mend. You did not steal them. The aide cleaned your room, found his clothes and returned them to him.

Now lets look at our choice of assumptions here:

1) You're a thief and the stolen property must be returned to its rightful owner. (Was this said to you, Mom? No.)

2) At the end of the day, the aides were making a final check to be sure that everyone's belongings had been properly moved from the old location to the new. When they found his clothes in your room, they thought a mistake had been made in the moving process. No one thought you stole his stuff at all. They just thought they'd been misplaced.

Now which assumption would give you less stress? Which assumption would make you sleep better tonight?

An aside here, I always observe the assumptions and accusations of the people around me. They are a window into their souls, an indicator of what they themselves are capable of, a reflection of the state of their internal workings.

Everything is a choice. And at the end of the day, what we chose will determine our level of comfort and peace. I would LOVE to see Mom make choices that would put her mind at ease, but sadly, I see her choose "victim" almost every time.

Today my dear lady died. I've known it was coming, I suppose, but I wasn't ready.

Last night I put out a pink and black suit to wear to work. At the last minute, I thought, "I think I'l wear the orange and brown today... it's Thanksgiving after all." I debated with myself whether to go with brown shoes or orange. I don't typically wear colored shoes in the fall and winter, but today I thought, "Maybe my dear lady will come home today and I'll have on her favorite Orange Shoes."

She did not come home, she went home.

At first I was just a puddle of tears. (Went right into "the ugly cry" as Oprah would say.) Her daughter-in-law graciously made sure I found out from friends and not from some form faxed over from the hospital.

The daughter in law shared her last minutes with Miss V. V had recognized her, acknowledged her, and then waved goodbye. My last contact with her was several days ago. She was returning to the nursing home after a lengthy hospital stay--one that no one expected she'd survive. When the ambulance brought her in, I came a runnin! I took her hand and began to speak with her. The medics tried to dissuade me, saying that she was probably contagious.

I didn't care. I welcomed her back and promised that I'd be down to see her soon. She looked at me, smiled and said, "honey... why? why? why?"

Sadly, "why" was one of the few words that survived the ravages of stroke and illness. I'm sure there's some sort of spiritual significance to that word for her, but I don't know what it is.

Since I learned of her passing this morning, I've been thinking a lot about the past months with her in my life. For a few weeks, she lived right across the hall from my mom. V. another lady and my mom used to call themselves "The With It Girls." (Meaning they had enough sense left to be "with it") Oh the three of them stirred up trouble. They were something.

Miss V. always thought she'd recover enough to go back to her little home. She was FURIOUS when she was told she wouldn't be going in the foreseeable future. That's when she started saying "why" a LOT. She'd grab me in the hallways and say, "Honey, I want to go HOME. Help me go HOME!" That used to break my heart. One day she came tooling into my office and tried to get me to help her escape again. I took her hands in mine and said, "I know you're mad that you're stuck here, and I'm sorry for that. But I am SO GLAD you're here. You make such a difference in my life." She never asked for my help again after that.

I have some pictures of her with her daughter in law at a community day affair we had one Saturday. She looked like she was having the time of her life. It wasn't long after that day that she began to leave this world, a little at a time.

My most prevailing emotion at her passing is NOT sadness. It is gratitude. I am so very grateful to have known Miss V and her family. In them, I found real friendship.

So, goodbye, Dear Lady. I wouldn't have missed you for the world.

Last night I got an email from one of my oldest friends. One of her children had a baby. She's grandma again! The baby is adorable. Looking at my friend's daughter was like looking at my friend. They're so alike.

I met Sandi when I was 13 years old. I don't remember much of life before she came along. She and I became fast friends, and remain so 35 years later. We were cheerleaders together and editors of the senior high year book. (Our last yearbook together looks like the Nansi & Sandi Scrapbook!)

She came from a "normal" family. All I ever wanted to do was go live with Sandi and her family. I practically DID live there! Her dad looked like Johnny Cash. I don't remember seeing him without a Bible open in front of him. Her mom was a beautiful southern lady--Dixie Carter-esque. She'd always say, "Nansi! You're a sight!" I think that was a compliment. I always made her laugh.

If my memory is correct, Sandi's parents were a couple of years older than mine.

One of the pictures that I got yesterday was a picture of Sandi's mom holding the baby. She hasn't aged a bit. She still looks just like the last time I saw her. She has the face of an angel, so full of love and compassion.

I wonder if they knew what my life was like back then. I never told anyone what our home was like. It was my deepest darkest secret. If they knew, they never let on.

My mom was always bitterly jealous of Sandi and her family. Mom would warn me that if I hung around such a pretty girl, no boys would EVER look at me. (Not a problem, Mom!) Mom never stopped me from being friends with Sandi, but she quietly disapproved.

I looked at Sandi's mom's face last night. What few wrinkles she has are imprints of a million smiles and a lifetime of laughter. Even when she's NOT smiling, she smiles. Her eyes sparkle with wit and wisdom.

I look at my own mom's face. When she's not smiling, her face is a mask of disappointment. Sometimes when I go see mom when she's not expecting me, I find her head hung so low it almost touches her chest. At rest, my mother's face has a longing to it that is heart wrenching.

I don't remember receiving encouragement from my mom. She was always warning me about this or that. I had a litany of things to watch out for. My girl friendships alarmed my mother. She constantly admonished me to beware of women, they were not to be trusted.

Funny. It's been the women in my life who have saved me. I wish my mom could have experienced the friendships that I have. I think she'd be a lot more at peace with who she is today.

www.dictionary.com defines the two terms as follows:

dementia: severe impairment or loss of intellectual capacity and personality integration, due to the loss of or damage to neurons in the brain.

alzheimer's: a progressive form of pre-senile dementia that is similar to senile dementia except that it usually starts in the 40s or 50s; first symptoms are impaired memory which is followed by impaired thought and speech and finally complete helplessness.

The two seem interchangeable. I spoke with one of the nurse's where I work and asked what difference there was between the two diagnoses. She explained that with dementia the patient can have almost total recall of their life. They don't always lose their memory. Alzheimer's involves a loss of memory. Some alzheimer's sufferers find themselves mentally existing in times past.

I once heard of a married couple who lived together in a nursing home. They had to separate them as her Alzheimer's progressed. She reached a place in her mind that took place BEFORE she met her husband and became very frightened of the strange man in her room. Sad.

My mom has dementia. I don't know if she's typical, but I can tell you how it affects her. She tends to form scenarios based upon a snippet of something she thinks she saw. For instance, the other day I took her to my husband's family dinner. A woman there reminded her of my boss. Mom thought it WAS my boss and asked me why she was there. Did she just come over or was she somehow related to my husband? But the woman was never at the dinner. Mom insists that she was.

Before I removed a phone from Mom's room, I'd get calls in the middle of the night. She'd swear that she was sitting in the parking lot covered with snow. One morning this past February, Mom called to tell me that a large black man had spent the night in her recliner. She said he pasted pictures of Martin Luther King, Jr. all over her walls then just sat in her chair and watched her sleep. I later figured out that Mom must have fallen asleep with the TV on. There was probably a Black History program on that intruded into her sleeping conscience.

Before Mom was admitted into the nursing home, she'd been hospitalized because a UTI had gone into sepsis. She was out of her mind, bless her heart. She called me at work and said, "They keep trying to tell me I'm in the hospital, but I'm NOT, I'm in a farm house." She described the furnishings, the gingham curtains, even the flowered couch with doily pillows. Then she said, "If YOU tell me I'm in a hospital, I'll believe you. But it feels like I'm in the farm house." In that same hospital stay, she kept sending the nurses down the hall to "go get my daughter, she just passed the doorway!" And the nurse's would bring some poor soul into the room while my mom chided them for denying that they knew her.

Keep in mind that my "expertise" comes from my personal experience. I'm not a nurse, just a daughter who landed a job in her mother's nursing home. In the early months I would make myself sick trying to bring my mother into the bright light of truth. I'd try to prove to her that she was imagining things.

Finally, I confided in a friend who had also worked in a nursing home. She gave me the best advice. She said, "Don't try to punch holes in her reality. Repeat back to her what she's said and offer sympathy when appropriate." So now when Mom says, "That aide called me an old battle ax." I say, "An aide called you a battle ax?? No wonder you're so upset. How can I help?" Mom just needs to be heard.

One of the most heartbreaking things my mom said to me was the other day. She came to my office and said, "I need to ask you something. Am I imagining that I could sew long ago? I seem to remember making you beautiful clothing, but maybe I'm just wishing." I said, "Mom, you sewed like an artist." I went on to describe some of the outfits she'd made for me. She looked sad but satisfied.

I wish she would slip just a little bit farther. As she is now, there's enough of the "old mom" left to know that what she is now isn't right.

I cannot tell you what an amazing journey I've been on over this past year. The people around me might tell you that I've struggled, but I've learned so much.

In the first weeks of my job I was given the lovely task of filing. *ugh* I noticed an aptitude test that the Director of the Alzheimer's Care Unit was required to pass. One question seemed to jump off the page at me.... "Define Confabulation".... The answer is: the replacement of a gap in a person's memory by a falsification that he or she believes to be true.

I went home that night and googled the word. A simple explanation would be this... one might remember sitting in a chair by the window. Then they remember sitting at the dining room table. They don't remember the journey from point A to point B, so they may say "I got up from my chair and walked to the dining room. Then I sat down, now here I am!" But the truth is, they stopped in the bathroom and washed their hands. They don't remember that. So they confabulate. They make an assumption of what probably happened and accepted that as the truth.

This is an overly simplified explanation. My mom confabulates. She'll talk about overhearing a phone conversation. She quotes both sides of the conversation, even though it's not possible for her to have heard the person on the other end.

Personality has a huge impact on how a confabulater confabulates. If they enjoy the victim role in their lives, they'll imagine all sorts of offenses. If they're pretty upbeat, or positive, their assumptions are more benign.

My mom is what I call a "me too" confabulator. A few months back my mother had a room mate who had been horribly injured. Her ankle had pretty bad fractures and she was required to wear a boot almost all of the time. The only time the boot came off was bed time. Putting the boot back on was a nightmare. The resident realized that she needed it, but would scream and complain whenever it was put on her. No amount of gentleness could accomplish a completely pain-free application of the boot.

One night the resident wanted to get up. The CNA put the boot on her. Of course, there was much commotion and protest. Mom later reported that the aid walked over and just twisted Mom's leg out of meanness. The aid swears that it didn't happen and mom's room mate backs up the CNA's story.

Mom could pass a lie detector test. To this day she swears that the CNA deliberately hurt her. She empathized so much with her room mate that she imagined the same scenario on herself.

I used to be so horrified by the "lies" my mother would tell. But some of them can be attributed to confabulation and the phenomenon of assumptions becoming memories.

Over the weekend I had occasion to converse with a gentleman who also has his mother in a nursing home. We compared notes about our dysfunctional mothers and our childhoods. Both of us have mothers who are larger than life. Our mothers make fabulous first impressions and are masters at hiding the truth.

It used to really irk me to have people come up and say how awesome my mother is. If they only knew. But at the same time I WANTED my mother to make a good impression. I'd much rather be known as the child of "the great lady" than the child of a nutbar.

How do you overcome a childhood of chaos? I feel sorry for anyone who is close to me. I come with a train load of baggage. I tend to over-compensate with my kids. Because my mother treated us like scullery maids, I don't make my kids do housework. I don't pile chores on them and I think that's harmful. I'm not preparing them to tend to their own homes. There's got to be a good balance.

Have you ever watched that show "What Not To Wear"? It's a fashion show where they tell you what you're doing wrong. I think of my mom as the "What Not to Wear" of life. I've learned what NOT to do in every aspect of my life from my mother. I know how NOT to be a wife, how NOT to be a mother, how NOT to be a friend.... Now I'm learning how NOT to grow old.

We have a lady in our nursing home who is living her last days exactly how I want to live mine. She's a quiet, dignified lady. She used to be a school teacher. She finds something good in every situation. She revels in the simplest of pleasures. She raves about "dippy eggs" the way most of us rave about champaign and caviar. I've never heard her complain.

Basically, my mom has totally messed up my own old lady plans. I fully expected to let loose when I got old. I was going to complain loudly, be cantankerous, pee on the furniture... but now that I live with that from my mom, I can't bring myself to put my kids through it. (Guess I'll just have to be fabulous til I die! ha ha)

A few years back when my mom had her first stroke, she was in another nursing home. Finding the time to visit her was nearly impossible. And when I DID go visit all she did was complain bitterly. I hated going to see her. I was also still pretty raw about some of the things she'd put me through in recent years. I was talking to her social worker about these things. I said, "You know, my mom makes a good impression, but she's got some pretty wounded kids. It's damn hard for me to give up time with my own family because I feel obligated to spend time with her."

The social worker said something that affected me profoundly. "You know, Nansi, we fully realize that some of these lonely old people are lying in the beds they spent a life time making." Wow.

The gentleman I chatted with this weekend is the son of one of my favorite ladies in the world. I just adore her. I know he does too, but the choices she made in HIS life have left him pretty wounded. I totally understand his resentment of her. I think he feels that his mother has somehow fooled the people around her. (I know I feel that way about my OWN mother.)

I wish he could reconcile with her before she dies. I don't think there's enough time for that. I think she'll be gone shortly, and her mind has been gone for a while now. How will he walk through this life with the anvil that must surely sit in the center of his heart? Thankfully, and miraculously, he found a remarkable woman to be his wife. Perhaps she'll create a new picture of womanhood to him. One that he can trust and rely upon. My fondest hope for him is that when he buries his mother, the pain and anger of the past will go with her. I pray that he dwells on the good of his life with her. I pray that both he and she will find peace at her passing.

What's in it for me???

My Dad died on November 13, 1989. His death was a most magical experience. He was pretty young, 65 years old. I got a call on Sunday afternoon saying he'd had a massive heart attack and was going to have open heart surgery. My dad's pastor told me to get there as fast as I could because he was not expected to live.

At that time I was pretty involved in the "faith movement" of Christianity. I chided the pastor for not having the faith to believe my dad would be healed. Still we raced through the night from Pennsylvania to Florida.

We came to a cross road at 8:00am. We needed to find out if Dad had made it through the night. If he'd lived, it was on to Orlando Regional Medical Center. If he hadn't made it, we would head to Ormond Beach (Daytona) to stay with relatives and plan the funeral. He'd lived.

We reached the hospital at around 9 am. Dad's doctor was openly astounded that he'd lived. She fully expected to be coming in to sign a death certificate, but there he was, attached to every machine and I.V. bag you could think of--alive. She tried to communicate the hopelessness of the situation, but we stubbornly held on to our faith.

During that day, the waiting room was filled with Dad's friends and family. We are a musical family. My cousins and my sisters and I had all been Sweet Adeline's (the female version of Barber Shop Singers). So we sang all day in four part harmony. Amazing Grace, It Is Well With My Soul, How Great Thou Art, all the good ones!

As evening fell, Dad began to seriously decline. He was already on a respirator and heart pump. Now his kidneys were failing. The end was definitely near. Funny. I've felt death in the nursing home several times in the past year. It's a chaotic and fearful feeling. That was not the case with my dad.

The nurses had latched onto my husband and me. My husband was a critical care RN and spoke their language. He served as a liaison between the medicos and my family. In that last hour the nurses advised us that Dad was slipping again. They could code him, but it wouldn't prolong his life much longer and it's very painful.

All eyes were on ME. I felt we should just let Dad go, and my family concurred. The nurse said, "You know, he doesn't have to die alone. You can be with him." I JUMPED at the chance!!! I bolted into the room to be near my dad in his last minutes.

One by one my family joined me. Mom wouldn't come in. Dad wouldn't die without her.

I finally said to Mom, "Look, he's not going to go until you see him." She was terrified and distant. But she went in.

I said, "Daddy? Mom's here. She's going to come live with Don and me and help me raise Sandi. I need her, you can go now." Mom held his hand. And we watched the line go flat.

More than an electronic flat-line took place. Here's what I sensed: I sensed the presence of God and angels. As Dad's spirit slipped into the next life, I could feel more than just his exit. I believe the angels took him "home." What was left was the most magnificent peace I've ever known. "Peace that passes all understanding."

I wasn't sad. None of us were. There was a sense of elation. Later at the funeral, one of the five ministers who'd flown in for the occasion, quoted Jeremiah "Blessed in the eyes of the Lord is the death of a saint." (Note: I felt this sensation two more times in my life, and I think I understand it better now. When my daughter was born, I felt that mixture of peace and elation. It was even more intense when my son was born. It didn't occur to me at the time, but I think my Dad found his way to the births of his last two grandchildren.)

The nurses had heard us singing hymns all day and placed a call to the chaplain. When he came to see the family, we didn't let him get a word in edgewise. We told him of the many pastors, missionaries, and teachers who had sat under Dad's teaching and had decided to dedicate their very lives to God's service. We told him of the many times Dad had given to different church causes. We were positive that we knew where Dad had gone. The chaplain said, "I came to comfort a grieving family, but I leave instead inspired." Can you think of a higher compliment?

Being able to witness and experience my dad's passing filled me with a resolve to take care of my Mom in his stead. Looking back, I think I was "called" to care for my mom. This is why I worry so for my siblings. They didn't get the call that I got, yet I know they feel like they've let me down in some way. Not so. I'm living out my calling.

So what's in it for me? Do we do anything without a pay off? Here's what I know, when I bury my mother, I will do so with the absolute knowledge that I've done well by her. I've given her the best I can give. I'm confident that her last days are as good as can be. She's not alone. She's not unloved or forgotten.

One of my acquaintances, who is also charged with the responsibility of her elderly mother, said, "Sometimes that Brooklyn Bridge seems pretty inviting..." It was a veiled reference to suicide. I know she's not contemplating suicide. She is just frustrated and using extreme language. Funny how that helps. How often do we say, "I could just KILL him" or "I'm breaking my neck here."?

I'm astounded at the amount of stress there is in dealing with an aging parent. It's so much like raising an infant! The other day I took my mom and her roommate to a family gathering. I had to be sure and pick them up right after they'd had their medication. I had two walkers to contend with. I even had to pack a change of clothes and disposable underpants (diapers) for them. Then I had to watch what they were eating. My mom especially is bad about eating the wrong things. Then I had to be sure they were back at the nursing home in time for their next round of medication.

Remember car seats, diaper bags, and feeding times? It's not a lot different, logistically and emotionally.

Outings are a monumental undertaking. But so is day to day life. I have to be sure my mother has adequate clothing. I have to see that she has spending money. About half the time she loses her money. So throwing it in the trash can sometimes seem like streamlining the inevitable. Mom has needs and desires that are not met by the nursing homes. She loves to read. She loves chocolate. She likes to watch cable TV. These are needs that I must see are met.

Mom isn't the hardest part of my life. I can't even tell you what is the hardest. Car trouble? Full time job? Raising two school-aged children? Dividing myself between family, work, mother? For five years I did it as a single Mom. I am so grateful for my hubby and his family. I don't know how I'd pull it all off, I really don't.

I've thought about "the Brooklyn Bridge" in the same abstract way my friend did today. I come away with this mantra:"Life is good and well worth living."

We're taking a couple of days off work this week. One of our projects is to strip and stain an old drop-leaf table that's probably been in the family for a hundred years. Mom said it belonged to her grandmother.

I only ever remember it being painted this horrible pea green. Who PAINTS tables???

I bought this environmentally friendly citrus goop that's supposed to strip paint off of wood. It smells nice. After a half an hour the paint started bubbling.

Under the green was black. Under the black was red. Under the red was cream. Then the natural wood.

As I stripped away each color, I tried to imagine where the table had been. I never remember seeing it at my grandmother's house. Only Mom's. And I don't know why she would have painted it green. Our house was never green.

Our house was always some form of blue. Mom loved blue.

Our living room was always decorated. The kitchen might have been festering with a weeks worth of dirty dishes, but the living room was always decorated. We had a four cushioned couch. Mom must have reupholstered that thing a half a dozen times in my life-time. When we got it, it had brown and beige vinyl stuff on it with some sort of pasture scene. HIDEOUS. The cobalt blue peacock pattern didn't improve it much.

There was a piano and an organ in the living room. My parents often hosted "after-glows" on Sunday nights. That's when the Baptists get together after church, stuff their faces and sing their hearts out. Good times. Oh yeh.

Our living room was HUGE. There was the four-cushioned couch, a deacon's bench, two recliners. Between the two recliners mom had a black iron stove that she used as a lamp table. We had powder blue sculptured shag carpet.

And in the entry way was the icky green table. It never fit anywhere. It's mine now. I'm trying to return it to it's original charm. But what if it was always ugly? Ah well.... back to scraping the years away and saying "hi" to the grandmas who tried to fit the little thing into their surroundings.

Today was the day I took Mom and her Roomie to my mother-in-law's house for our wedding celebration. It was so nice. Mom loves being around Mike's family. And true to form, his family treated Mom and Roomie like family. Both ladies enjoyed the country ride and the delicious home-cooked food.

On the way home Mom got to talking. It was clear that she's losing her grip on reality. She brought up people she'd seen at Mike's Mom's. Only those people weren't there. She said, "When I'm in crowds I see faces that can't possibly be there, but they're so real."

She also talked about things that never happened. Like she talked about going on Disney's Space Mountain with my dad... on their first date,,, in 1942... Space Mountain was build in 1976. But she so clearly remembers it. She also insists that she and dad were married for 65 years when he died. Neither one of them was even 65 years of age when he died.

She loses her train of thought. That really frustrates her. Most of her sentences contain this parenthetical comment "shoot! I can't remember anything anymore" or "darn! what word am I looking for???"

Mom's slipping away. Little by little. I feel helpless. Like I'm standing in a threshold. What will life be like when she's gone? What will I do with myself without her?

This has been a hard year. I'm tired. I'm scared almost all the time. I'm scared that I'm letting my mom down... scared that I'm not doing a good job at work... scared that I'm not a good enough mother... scared that I won't be a good wife...

A few weeks ago I was asked to run the admissions department for a couple of days. I did the sign-in paperwork with a new family. As the family member described her mother, I kept saying things like "Yeh, my mom too." or "Oh my gosh! My mom likes that show too!" Mom needed a room mate.

The two of them have totally hit it off. Mom's roomie will come scold me if I haven't spent enough time with my mom. She really looks after Mom, and vise versa.

The nurses tell me that the roomie takes Mom's glasses off every night and turns her reading lamp out. It's such a blessing to know that someone is being so tender and loving with Mom.

We light-heartedly refer to this pair as "The Odd Couple". Mom's so messy, and her roomie is a neat nick. Their room looks like the opening credits of the odd couple. One half is stylish and neat as a pin, the other a mish mosh of odd collections and clutter.

Yet they really have bonded. They're so cute! I went down today to find them side by side, watching Oprah. BOTH OF THEIR TV's WERE TUNED TO THE SAME SHOW! But there they were watching and sipping tea. Can I tell you what a comfort that is for me?

Sunday is the family celebration of our wedding. Mom wants to bring her roomie along. I'm thrilled to have her.

The entire purpose of this blog is to offer my experiences in hopes that someone may benefit. I recently joined a yahoo group consisting of people who are caring for elderly parents. It's a huge list. One of them is moving her father in with her. I offered her this advice today, and I offer it to you....

My employer places a strong emphasis on "resident rights". It's the main thrust of almost every meeting, or goal we set. We are very conscious of the resident's right to dignity, freedom of choice, simple pleasures and basic living essentials. As a means to that end, our building established a resident counsel. I don't know if all nursing homes have that, but ours does.

Mom would rise up from the dead to attend a resident counsel meeting. I've seen her be sick as a dog, but perk right up when she finds out it's meeting day. I don't attend, but I hear she holds court every time there's a meeting.

Mom usually stops by the business office to complain about what was said and who did or did not attend. She takes great offense if the administrator is not there.

The other morning, Mom triumphantly wheeled herself into my office and bragged about her latest encounter with my boss. "I told her that I understand it takes an engraved invitation for her to attend a counsel meeting so here it is." With that Mom handed her a written invitation.

Mom was so proud of herself. I could have died. Mom doesn't consider that this is where I work. I have to stop thinking that my performance is being judged by Mom's actions. It's hard to make that break.


As it turns out, Mom did what she was supposed to do. By law, the administrator is barred from the counsel meetings unless she's expressly invited to attend.

See? Mom's not all bad. :o)

Yesterday marked the one year point since Mom and I entered the nursing home. She as a resident, I as an employee.

In many ways Mom's life is much improved. Before she went in, she would sit in her apartment for weeks on end. The only company she got was me, or the mooches in her building who were always trying to hit her up for cash, or worse-drugs.

Most of the mental hospitals in my state have been closed down. The surprising result has been an upswing in younger disabled people populating what once was senior high rises. The last years in Mom's building were frightening. There were several very mentally ill people residing there, and "home" wasn't so sweet anymore.

The night I went to begin clearing Mom's apartment, I came upon a very surprising event. The place was swarming with police. It was the culmination of a months' long investigation into a drug and prostitution ring. IN A SENIOR HIGH RISE???? Yep. A woman had gone into a nursing home permanently, but her granddaughter had maintained her apartment for over a year. The rent was based upon her grandmother's income, so for about $200 a month, the girl had a nice one bedroom apartment. She was selling drugs and turning tricks in the old folks' home!!! Sheeesh!

I digress.

It's the one year point at the nursing home. It's good to see Mom making friendships. She's much more active socially than I remember her being for decades. But sadly, she's also doing less and less for herself. Mom's always been somewhat of a prima dona, expecting special service and complaining loudly when denied it. But now she refuses to do the simplest things for herself. It's not disability, it's choice.

An example of this would be, she insists that she can sew by hand and keeps demanding needles and thread, yet she won't peel and slice a banana for herself. Both tasks require the same motor skills, yet one task she insists be done for her.

As for my own one-year mark, I worry about me. I'm tired. I miss my old job at Fox's. I miss the people I had come to love so much. My job is so entwined with the difficulties I experience with my mother. At times, I wish I could just enjoy my work, at other times, I'm grateful that all my life-stress is encapsulated into an eight hour day. I can't imagine how I'd "work my mother in" to my busy life if she weren't with me every day....

One of my dearest friends-who also has worked in a nursing home- wrote this to me today:

I understand this intimately, Nansi. You are in one of the most draining "industries" of work. There is no easy way to manage the end of life. No one is winning: not you, nor your mom, nor any of the old people and their stories who haunt me sometimes still when I go to bed. There is only so much one person can do for our elders. I think, hard as it is, you are giving all you can. Please, find room to recharge yourself so you don't burn out at your job. Humanity needs you there.

I'm going to do my best to take her advice this weekend, although I think I've already failed. It's four in the morning, I can't sleep, I lay here and worry.

My co-workers are exhausted. I appreciate their efforts so much. Working in a nursing home is more hectic that I ever imagined. I walk down the halls and the call bells are going crazy, the CNA's are running like crazy! The place just hammers.

I always imagined a nursing home to be quiet and peaceful, and maybe a little sad. I was wrong. We're always running. There are not enough hours in a day and I find that I always leave with so much undone. I think the residents pick up on it.

Chaos feeds on chaos. It seems that when administration is stressed, the residents become agitated, thus creating more stress.

Earlier in the week we had a resident whom we knew was dying. This resident was fighting the inevitable. There seemed to be a swelling atmosphere of restlessness throughout the building. The morning and early afternoon was full of oddball things like a meal cart upsetting, two perfectly friendly residents lashing out at each other, family members complaining loudly. It all rose to a crescendo at around 2:30pm. Then suddenly, peace reigned. Everyone quieted down. I remember that time because I had an appointment that wrapped up and I noticed that things seemed to be settling down. I later found out that this was precisely the time our dying resident gave up the fight.

What happens in the atmosphere around us when death is so near? I wonder.

We recently moved an entire wing of residents into a newly renovated section. The old rooms sit empty. There's no one at the nurse's desk. The only person remaining in that wing is a Registered Nurse who has her office there. She tells of call bells going off, sounds of clattering trays, and voices. This wing is an entire floor of the building. There's no way these sounds are coming from any other section of the home. Creeeepy!!!!

Mom has another UTI. (Urinary Tract Infection) She rarely goes for more than a month before she's infected again. You might think it's a hygiene issue, but it isn't. The bacteria that we can't seem to thwart is a result of kidney stones.

I thought she might be getting sick again last week... and I was right.

How did I know? One of the most surprising things I've learned is that UTIs often manifest as dementia in the elderly. Mom hallucinates, becomes very agitated and disoriented.

I noticed a change in her 10 days ago, but I attributed it to the recent room move. Wrong. I'm hoping that the antibiotics will bring her comfort. She's been miserable.

Introduction

I'd like to tell you about three special people who grace my days.

The Divine Mr. M.

The first is Mr. M. If you passed him on the road, you might walk across the street to avoid him. He's scruffy and sometimes smells bad. He rarely wears his teeth or hearing aids, and squints a lot. He refuses to use a walker, preferring to scamper along behind his wheel chair. When he gets tired, he sits in his wheel chair and scoots along with his feet.

Mr. M. is a bit demented. He always thinks he's going to Philadelphia. He comes and asks for $200 for a bus trip, but can be convinced to be happy with $5 instead.

One day I found him crumpled beside his toilet. He was partially nude and pretty badly soiled. I covered him and ran for a nurse to help clean him up. Later that day, I stopped in to make sure he was OK. He seemed embarrassed that I'd seen him so exposed. I pretended the incident didn't happen and went on to tell him about my new grandson.

Later he showed up in the Business Office with his mandolin. Secretly I dreaded what was probably going to be a painful performance, but I offered him a chair and braced myself.

The transformation was amazing. He played beautifully. First he played Amazing Grace, then a couple of tunes I did not know. While Mr. M. played his mandolin the years melted away. His physical challenges became invisible. Both of us were transported to a time when he was young and vital and very talented. His performance brought tears to my eyes. When he was done, he plopped his instrument into the seat of his wheelchair, kissed the top of my head, and skittered off on his merry way.

Miss G

Miss G is relatively young to be in a nursing home. She's pretty much alone in this world. She never married and never had children. I've seen a niece once or twice, but her sister from New Jersey makes regular visits and takes her on trips to the casinos.

Miss G always smiles. She's so full of love that her glow can be felt even when you can't see her. She doesn't have much to smile about. Her hands are gnarled with arthritis. Her feet are stuffed into corrective shoes and her spine is riddled with degenerative spine fractures. I know she suffers every waking moment.

Every time her sister takes her to the casinos, Miss G vows to "Make a million bucks, buy the nursing home and turn it into a cat house." (And she doesn't mean pet store!) She'll tell you that Hooters is always after her to be the star waitress. And her favorite pass time is to sit in the lobby and ask the handsome ambulance drivers to take her out for a date or give her their phone numbers.

It is impossible to be down when you're around Miss G. She's always got a kind word or an "I love you, honey!" I thank God everyday that I know her.

My heart belongs to Miss V....

I'm the fashionista of the building. I have over 40 pairs of shoes in every color you can imagine. One day I was walking down the hall in my orange Enzo's when I heard someone shout "ORANGE ORANGE!! ORANGE ORANGE!!"

It was a new resident. I went to introduce myself to her and was told that she hadn't spoken since her stroke. (I promptly went home and informed my fiancee that Jesus WANTS me to wear my shoes, they heal the sick!) The next day I wore green shoes and I got the same excited reaction.

We began a daily routine. I check in with her and she admires whatever I'm wearing.

As the months passed, her speech got better and better. Her speech got good enough to royally cuss her son out when he told her she wasn't going home. She was devastated and irate.

Her son isn't wrong. She's not able to care for herself anymore.

Her life is so interesting. She served in the military. She never remarried after her husband was killed in World War Two. She raised her son alone. She weathered this world all by herself. I could spend hours a day just sitting and talking with her.

One day she didn't seem right. She was rushed to the hospital where she stayed for several days. When she came back she didn't know me. I'd walk up to her and smile, say "hi" and touch her hand. She just looked confused and would say "why? why? why?" It made me so sad that she didn't know me anymore.

A few days ago I ran into her son and his wife. I lamented that she just wasn't the same anymore. He said, "Yes, it's sad that she's lost her eyesight." I confess that I just broke down and cried. I didn't know she couldn't SEE!!! No WONDER she didn't know me.

The next day I went to her. I sat by her and said, "It's me, Nansi." I took her hand and let her feel my hair (she loves to feel my hair). She grabbed me and said, "Oh honey. Why? Why? Why"" We both cried a little, but mostly just comforted each other.

She may be mad that she's in a nursing home, but I am so grateful that I have had this opportunity to know her and to make a difference in her life. She's certainly made me a better person for having known her.

These are our National Treasures, folks. Don't be afraid of your old people. Let them talk to you. Hear their stories. They're telling you YOUR story. They're the foundation of our society. The highest prize you can win is the friendship of a person at the end of their life. Listen. Listen. Listen. And when you do, you will have given Love.