I took the Nativity Set out to the garage. Mom said she was glad the family went home because it was awfully cold for them to be outside.  She did say she missed them, though.

It is so frustrating to have mom remember such trivial things like what she likes for breakfast and forget the more important things like who her kids are. Many days now she asks who I am when I call on the phone. Sometimes, she does so when I visit. What's even more sad is that she knows something is happening to her and she tries to keep you from knowing. She says things like "I was just checking to see what you would say…" or laughing when you answer - since then she already has her answer.

Mom has gone way beyond the color coding of her dead bolt and front door lock. She's gone beyond the needing reminders and writing the top 3 called phone numbers on her trash can next to her chair. She's gone beyond not understanding how to turn her TV on and off without the little slip of paper taped above the buttons telling her what to do….

I wish I had a little piece of paper telling me what to do. I do not want to be the person that has to make a decision about her car, the timing for her to move to a nursing home, or finding her gone. I don't want any of it but sometimes we don't get what we want…. so I will continue to be a phone book thief, chief cook and bottle washer, repetitive question answerer, and daughter as long as I can and as long as she is safe because I do love my Mom.

Birthday Surprise

Well, Mom celebrated her 87th. birthday yesterday and she had a very busy day. Her nurse brought her a cake, her son sent her flowers, she got lots of cards and she got a TON of phone calls. Everyone knows how forgetful she is so they called her more than once - friends, children, grandchildren. Shoot - even her bank sent her a card!

The highlight of her birthday - for me - was when we went out to Cheddars to eat. The older Mom gets, the more she flirts and boy, does she flirt. I figured since it was her birthday, I'd at least try to document this for posterity sake but even I didn't know what I was getting into when I asked the waiter if he would mind letting Mom have her picture taken with him. He said yes and moved in to the booth next to her and no sooner had he sat down than my mom KISSED him. I gave him the biggest tip I have ever given - percentage wise. He was a good waiter besides! Hope he considered the kiss a bonus!

I really have to figure out a way to keep mom from being able to sign anything and have it legal. She really wants to help everyone and there's a person that is really behind in their bills that she has already helped so much that the bank alerted me to the situation. It's the same person that took money out of her account without permission and why we had to change her bank account. What a pain. All those phone calls to reset up all her automatic debits and deposits..... And the person that created the huge headache gets nothing!

Mom's still chasing the imaginary bird out the door. About 6 degrees outside and she is still propping her door open to chase out the black flapping creature. She also put a nice floral wreath outside because she said the bird was living in it. I just put it back in the house.

After holiday sales are great. I wait until the treats are 75% or 90% off and stock up. Mom thinks she's won the lottery! Most go in her lock box but just getting something different has to be nice. If it's sugar she loves it. Some of the websites even believe there might be a link between sugar and Alzheimer's. Don't know. Inconclusive. Like she says, she's 86 and deserves to eat what she wants. I agree - just not whole boxes of the sweet stuff at one sitting!

It's a lot of work keeping up with her doctor appointments, checking on her bills, getting her groceries, making sure one meal at least gets eaten, taking care of meds,... Some days I can't believe I have another job.....

Taking care of Mom makes me feel bad most of the time. I get aggravated - know I shouldn't but can't help it but I try really hard to be patient. I also enjoy her company and like doing some things with her. She is so funny. I would have liked to have known her as a kid. She believes I did some days.... but at least she shares what it was like - at least as much as she remembers. It's sad how much gets lost over the years. Some days I really miss her while she is here.

HEALTHY JUNK FOOD???

Well, Mom doesn't eat very much unless it's junk food so I have resorted to purchasing kid meals at Wendy's for her supper which are about the right size. After she finishes with her meat and potato she doesn't feel like eating her apples so they have been piling up. She says they are too hard to chew which may be true with her dentures but I hazard to say it also might be because she is ready for treats.

Anyway, I hate to waste food so I took several packages of apples and put them in a medium saucepan over medium heat. I added a pat of butter, lots of cinnamon, and enough water to keep the bottom of the pan covered and prevent the apples from burning. After what seemed like forever but was probably only about 10-15 minutes with occasional stirring, the apples were tender and seasoned and I placed them in a large bowl and topped them with the free Frosty I got using my key tags.

The dessert was almost like apple pie just no crust and Mom likes that much better than something that seems healthy. It didn't take much time which was okay with me….

Well, it serves me right for not putting away the Nativity Set on the front lawn. Mom thought they were a real family and got upset that they were just sitting in front of her front door. I guess, from her story, she opened her front door and informed them that they would have to leave - that her insurance didn't cover them. She's kind of upset that they haven't moved on....

It doesn't take much to disrupt Mom's schedule. Change a meal time, don't call in the morning, run out of detergent, move the chair, …. It doesn't take much and Mom's equilibrium tips out of balance. Then she gets scared. She starts off with the paranoia. She wonders who everyone is. She starts to think I am her sister. She thinks someone is breaking in. The list goes on and on.

Mom wants so much to fit in. She has to have something to talk about. Consequently, she starts to tell you the same story over and over. I, unfortunately, am a get -it-done person and this retelling drives me up a wall. I have to find my own means of coping instead of losing my temper for something that is not Mom's fault. I do puzzles while I talk to her. I find that Sudoku calms my mind and helps me mumble answers to keep my Mom happy and engaged. I read - yes, while I talk with her. Reading to her is even better yet. I found a joke book with the joys and tribulations of aging and she seems to enjoy hearing about crazy old men or what ladies will do for fashion. ...OR finally, I give her junk food. With Mom it changes the subject the minute she sees a Nutty Bar. It's ridiculous. Sometimes, I think she knows what she is doing. I think maybe she has me programmed like Pavlov's dogs to get her sweets. She would do almost anything for a Nutty Bar!

Someday, maybe, I will find out who is leading whom but for now I plod on, doing the best I can each day. I guess that's what Mom does, too, come to think of it…..

Well, Mom is scared of what the Division of Aging will conclude. She doesn't come right out and say it, you just know because her house is immaculate. Every piece of laundry is done, the floor's been mopped several times - in one day - and the dishes practically jump right out of your hand, get magically washed and dried and returned to their previous location in the blink of an eye. I  guess Mom believes that they are checking for cleanliness instead of cognitive function or she's just going back to her childhood where you clean to earn your parent's praise for being so good. If life was only so easy.

I didn't realize how much Mom's perceptions had changed until she took one of those memory tests. One of the questions was to draw a clock. Mom got the outside of the clock okay but she had no idea what to do with the hands. She smashed all the numbers and all the hands - there were more than 2 - to one side. I wonder what she sees when she looks at a clock!

It would be interesting to see where they get the questions for the memory tests. Do they arise from the functions of a specific part of the brain? Are they just things that have been observed over time? Or are they just questions relating to location in time and space? Do they really determine if a person is safe in their own home?

Every individual has coping mechanisms. Mom color coded the locks on her front door. She makes lists of everything she thinks she is going to need: the names of her brothers and sisters and which are deceased and what kids are theirs, or where her money is,  or whose house she is living in, …. Mom also leaves things where they will jog her memory. She wrote the 3 most often-called numbers on the little trash can by her chair with a permanent marker like she wished she could permanently etch them on her brain.

Mom is still sneaky. She asks you something when she knows full well the answer and grins when you catch her. She loves her snacks. The nurse forgot her key so she left out a full box of Nutty Bars. Less than 24 hours later, without being locked up, they were gone. Lock boxes serve more than one purpose! It would be kind of fun to see a thief break open the two my mom has if they were ever stolen: Meds and Nutty Bars…. What a combination and definitely not what they would be expecting!

I wish I had the inside scoop on what the Division of Aging wants to see in place. I also wish I knew how much power they actually have to force someone to receive care or move into assisted living. I know my mother really doesn't want either.

I can remember being very young and my mom made a comment that I would be the one to send her to a nursing home. I don't know why she made it; she always just said I seemed all business and didn't show much emotion, but that comment has stuck with me my whole life. I KNOW she would rather die from an accident at home than live in a nursing home because she has repeated that over and over and I am trying to respect her wishes. I am not sure how much longer this is going to be possible. I am praying for a miracle.

I have been saying over and over that Mom wouldn't wander but now I am not so sure. I just got off the phone with her. It's 9 AM and she's convinced she's been walking all over St. Joe. I asked her to feel her shoes. They were dry. Then she said she took a bus. I told her bus tours didn't run before 9AM. So now she is convinced she dreamed it all. Somehow I am not so convinced....

I took my temperature again. Normal! Now I just hope it stays that way!

You know there are people that pay to have trips like Mom! They pay a fortune to travel somewhere new every day!

 I wish they would hurry with that protein blocker! I just wish for normal - normal days, normal temps, normal life.

Okay, I haven't been able to see Mom for a week. Even though a nurse has spent more time with her, her routine has been disrupted so she is off. She has called asking for the key to get her mail (I am sure it can wait.) and for the key to get in her crawl space to make sure the furnace isn't flooded by the melting snow. (She's only lived there 50 years and it never has flooded before!) But the worst is that she called the police again and unfortunately, they have had to refer her to the Division of Aging AGAIN. This time they are going to monitor her for two months!

Mom still has her home and a few assets we can't get her to part with so unfortunately, if she is sent to a nursing home, everything will be gone. My mom worked from when she was 15 until she was on Medicare and she always wanted to leave something for her family. Now, she doesn't understand that if she doesn't give some of it to us before she requires care, we won't get anything at all from her estate if she must be cared for elsewhere. She set up a trust in the event of her death but she never considered long term care....

It is so sad. People that don't work or have fun blowing all their money get taken care of by the government and their families don't pay any of the bills. People that work all their lives and save have to give it ALL up for their care at end of life. Doesn't sound like much fun or fair at all.

My sister had metachromatic leukodystrophy and was primarily cared for by my mom. When she died after 40 years of caregiving, the state came in and even tried to take the TV from her room that was purchased by my parents for her use. My sister was tube fed and bedridden for most of those years. You would have thought the state would have been giving my mother a HUGE thank-you instead.  I am sure my folks saved the state a bundle.

Well, I found out that Mom's called 911 about 20 times in the past year alone. The police say they don't mind coming over to check on her but I am not sure how much longer this will fly. We do have a lot of things in place.

• There's a program called Care-Trac that is free through the police department. It helps to locate missing person's by keeping their information on file and having them wear tracker bracelets. Mom's information is on file with them though because of her arthritis, osteoporosis, bunions, and hammertoes, they don't consider her a flight risk and she doesn't wear their bracelet.
• We placed a lock on the crawl space so Mom can't accidentally fall down there.
• Her car does not run. The battery is dead and any keys she finds do not fit the ignition.
• We put a thermostat cover on and set her house temp to a constant 75 degrees.
• Most of her burners do not work and there are no curtains over her stove which is electric.
• Her freezer is stocked with emergency microwavable dinners. Normally someone comes to get her an early meal and someone else comes for a late meal and to give her evening meds.
• To make sure she doesn't overdose, her meds are kept in a security lockbox.
• Her treats are in another lockbox. We ration her sweets because it seems to affect her memory.
• The neighbors are all aware of what is going on.

There is a lot in place. I am just going to be praying it is enough...

I lived through the nightmare of Mom mixing important mail into stacks and bags of items that had been around for DECADES so long that I didn't see any way around it. Call the utility and explain - "Yes, we could pay the bill NOW. " Didn't tell them we could have paid it when they sent the notice. TMI

Oh, how I would have preferred to vent.

Well, anyway - all that is just an intro. I found a MIRACLE at Lowe's - a LOCKING mailbox that can be attached to the front of the house easily! Yes, so easily that someone who believes they are Murphy (If it can go wrong - it will go wrong - with me…) can do it.

http://www.lowes.com/pd_423269-64152-2562B-10_0__?productId=4763897&Ntt=locking+mailbox&pl=1&currentURL=%3FNtt%3Dlocking%2Bmailbox&facetInfo=

I do have some modifications that you might appreciate, however. The mailbox comes with screws and anchors. I chose to get longer ones to go farther into the siding and anchor the mailbox more securely. (Mom is pretty strong when she gets it in her mind to have something! I can see her ripping the mailbox off the wall to turn it over and shake it until the mail falls out or smash it with a hammer until nothing is coming out again, ever.) Our house also has siding that isn't flat. I chose to get some nylon inserts to fit over the screws to help keep the mailbox tight against the surface. The inserts should be as thick as the siding required to get to the farthest point. Remember the screws have to be able to go THROUGH them.

The mailbox is also designed to be able to lift it over the anchored screws and lower it into position. It makes it easier to install. (I figured that was a perfect recipe for disaster and that the mailbox would be inside worthless in less than a day.) I checked the diameter of the screw heads and purchased washers with a smaller center diameter to permanently anchor the mailbox. The outside of the washers have to be large enough that they can't pull through the holes in the back of the mailbox.

Make a guide to mark the location of the holes for the screws and anchors. Lay a paper over the back of the mailbox (You might tape it so it doesn't move.) and use a pen or pointed object (Yes, it MIGHT be safe around Murphy!) to punch holes where the screws will go. Remove the paper and use it as a guide to mark pilot holes on the front of your house where you want the mailbox to be.

Start each of the screws in the pilot holes. Remove them.

Place a washer on the screw. Slide the screw through the hole in the mailbox. Slide on the insert. Position the screw in the pilot hole on the house holding the mailbox up.  Keep holding the mailbox while you do the same with the second screw. DO NOT TIGHTEN SCREWS AT THIS POINT! Just make sure they are holding the mailbox up. Follow the same pattern (washer-mailbox-insert-wall) for the last two anchor screws. Once all four screws are loosely holding the mailbox, you may tighten them down to hold the mailbox securely. Finally, your mailbox is attached.

Most of these directions come with the mailbox.  They have pictures! I just added the washers and the inserts to make things more secure.

Now that the locking mailbox is on your house, you can go through the mail before it gets delivered to your patient. (Maybe we won't get any more vitamins, coins or sweepstakes entries that make it seem like you've already won - but that's another story!)

In just the short time since the mailbox has been on the house the stacks of stuff have gone down. I FINALLY feel like I am making some headway as I sneak trash out the door! I actually have two of the forms we will; need to fill out taxes. Maybe I won't have to request any duplicate forms this year! This locking mailbox is a MIRACLE!

Okay, how many times will the fire department come and change your smoke detector batteries in a year? At least three…..

Do any of you have problems with your parent / patient calling emergency numbers? My mom has also called the police because she was cold. She told them her furnace was not working…..

http://www.alz.org/alzheimers_disease_stages_of_alzheimers.asp?type=alzchptfooter#stage1

Well, I found an excellent blog with some resources for understanding Alzheimer's.  The link is above.

It definitely makes me sad to read the progression of Alzheimer's knowing that it's my Mom I am talking about but I still think it's better to know what's coming and to be as prepared as I can.

I can't help but wonder how much longer Mom will be safe in her home. She has been so determined throughout her life that she NEVER wanted to go to a nursing home that I hate to even entertain the thought of that happening but I have to be realistic. At some point, it might become necessary for her to live where she has continual help. Some things make it seem like that day will be soon. Others just make me smile.

I took her to the doctor this morning. While waiting to be seen, my 86 year old mom was flirting - yes, flirting - with the gentlemen (Yes, plural!) in the waiting room. The guy across from her even gave her one of those smile cards in payment for the one she gave him. I liked his way of giving a smile better than her way of singing "Pease porridge hot, pease porridge cold…. " especially when she got to the part at the end where she threw her arms up in the air bringing them down to "accidentally" land on the gentleman next to her.  Heaven forbid if I had ever actually pulled a stunt like that. At least now I know where I come up with some of my ideas, though….

Caregivers Unite: I really could use some help. I fell into one of t...

Caregivers Unite: I really could use some help. I fell into one of t...: I really could use some help. I fell into one of the worst jobs you would ever want to have - caring for a parent - and I am struggling. To...

I really could use some help. I fell into one of the worst jobs you would ever want to have - caring for a parent - and I am struggling. To watch Mom decline every day and remember less and less is so sad and frustrating but I AM thankful for every day she is here and glad I am able to spend what time I can with her….

So what help do I need? No, I don’t want you to Momsit though if you volunteer, I might let you take over for an afternoon or weekend so I could have a REAL break. What I really need is the commiseration of other caregivers and the valued treasured advice you can give. I have stumbled upon a few good ideas and I would love to share them, and some laughs. You have to laugh or you would go crazy.

So, I hope you consider joining my blog if you are a caregiver and especially if you are a caregiver for a family member who is an Alzheimer’s or Dementia patient.