Tuesday, June 30, 2009

Last Day of June

Sorry I haven't posted in a couple of days. My computer service went out so I was unable to get on line!

Well, today is Tuesday and it is the last day of June. My daughter's 31st Birthday was yesterday. Happy Birthday, Aimee! (Boy, that makes me feel old) I'm sorry we couldn't be together like last year. I know Eric did a good job making your day special.

Well, let's see. The last few days are kind of a blur!! Sunday, I did go volunteer with the AD Assn. It was the Nat'l Human Resources Convention. I helped man the booth but I didn't have to speak. Met and greeted lots of HR people who were clueless as to why we were there! It's sad that they are clueless but a great time for education!!! Lots of people with EOAD/YOAD are working at the time they start having symptoms and are diagnosed. HR can really help these people!! I hope the education helps lots of folks. I know when I was diagnosed, HR was clueless. I'm hoping more corporations and companies will put programs together to help accommodate people diagnosed with YOAD or other dementias so that they can continue working longer. I didn't want to retire when I did!! But, my company didn't know what to do with me. Oh well, perhaps we can change that for others!!

Mom has been doing OK the last few days. She continues to be incontinent so Dad made her an appointment with a Urologist on Thursday. I'm not sure he can do anything but we'll check it out. My friend Julie has been in town from Texas. Unfortunately, a good friend of hers father died so she came in for the funeral. We were, also, able to visit which was great. My friend Keith is here working upstairs with me on the apartment. You know, the one I'll be moving into in a couple of months. He's helping me paint. (I'm paying him because he needs the money).

Went to Lowe's yesterday to purchase supplies and some paint. I couldn't decide on the color of my living/dining room. I brought home samples and Julie helped me decide. I chose " chamois cloth." It's pretty neutral. I'll have to do a lot of accenting!! Thanks goodness my sister is coming as she has a MUCH better eye at this than me.

Aimee, Eric and Turtle are coming July 16th. I can't wait!! I'm very excited!! I'm counting the days!!!

White dog and Orange cat are doing fine. Simon's back leg healed nicely (thank goodness).

I pulled my back the other day (while getting Mom up off the floor). It's discouraging. My back was finally doing better and now, well, here we go again! (Stop complaining because things could be worse). My back is killing me. Well, at least the migraines are gone!! I swear, sometimes I feel like an old woman! Seems like I always have some ache or pain!! lol.

Gotta run. Need to go to Lowe's to buy paint! (Thank God Keith is here. I couldn't do it alone!)

Have a great day!

Peace and Hope,


Saturday, June 27, 2009

"I can't think of a name to call this!"

Hi, it's late already, it's 10:20pm and I'm so very tired. I'll try to back track today.

Set my alarm for 7:25am as I had a 9:00am manicure appointment. Got up, did AM adls, let white dog and orange cat out then went to check on Mom and Dad. They were still sleeping! Yes! Oh, orange cat's leg is healing well!! yes!

Made some cafe au lait and just sat for a few minutes. Wow, it was great to get up and not have to rush around and do things right away. Received a call from my friend Julie stating she was about an hour away. (Wow, I forgot see was coming). Julie is an old friend from here that moved to Texas after Katrina. I told her to be safe and just come on. (I'm glad she called to remind me).

Got ready to go get manicure but Mom and Dad woke up. Helped get Mom to her recliner and Dad took over. Enjoyed getting a manicure. It had been a while. Since I'm helping to man the AD booth tomorrow and to speak, I wanted my nails to look nice. Got that done and returned home.

Julie was there (on Mom and Dad's side) laying on the sofa half asleep. She left Texas early AM and was tired. I sat and chatted with Mom and Jules then my phone rang. Went next door to answer the phone and to check on my animals. After 2 phone calls, I returned to Mom's. Julie was sleeping on the couch and Mom was in bed! I don't know where Dad was! Ok, things are calm, this is good.

Went back to my house, opened my computer, went to the AD Message Boards to read, help and post! Then, checked my e-mail. All of a sudden I got sooooo sleepy. I closed my computer and laid down on the sofa and feel asleep!!

Later, Julie, Mom, Dad and I watched the movie "Grease." It's a good older movie which we all enjoyed. Later Julie and I went to pick-up seafood dinner for Mom and Dad (they didn't want to go out). Fried Soft shell crab for Dad and Fried Shrimp po boy for Mom. Came back and set them up with dinner. Then, Julie & I went out to eat! We went to a seafood place, Julie had a fried seafood platter, I had a grilled shrimp salad with fired onion rings! It was de-lish-ous!!

Came home. Fed animals. Walked Winston. Julie was tired and went to bed.
I went online to the AD Message Boards to check on things and do my Peer Volunteer work! Then, I took my PM meds.

Mom and Dad went to bed! They did fine! Yes!

I think I am going to bed now. I would like to stay up and watch Morgas on tv but I think I'm just too tired!!

I wish you peace and good sleep.


Friday, June 26, 2009

Another TGIF !

Well, another TGIF. I do thank God it's Friday. I'm beat. It's been a kinda crazy week!

Woke up this am around 8:00am. Did AM ADLS, let white dog out, not orange cat because of the cut on his leg. He needs to stay inside another day! Went next door to check on Mom & Dad. Mom was up in her throne with coke and water. (Dad had gotten her up) Yea! She was doing OK. Dad was going to the post office.

Made cafe au lait and joined Mom for a visit. A doorbell rang (I thought it was Mom's door) but it wasn't. It was mine. It was the guys here to clean the house gutters! Oh, OK, They were just getting started. Good! Fixed Mom some breakfast.

Later, Mom's doorbell rang and it was the furniture company here to deliver my sofa sleeper and chair. The furniture needed to go upstairs in that apartment that I'm painting and cleaning as that's where I'll be living in the next couple of months. What commotion! I had to put my animals next door so they didn't run out. Then, the moving guys had trouble getting the sofa sleeper upstairs and eventually had to take a door off to fit it in! Isn't life grand!! lol.

In the meantime, I came downstairs only to find Mom UP and kinda walking and confused. I grabbed her and asked what she was doing. She said she heard a knock on the side glass door. (It was the new pool man letting her know he was here). Man, it was crazy! Phones ringing (my daughter calling), doorbells ringing, pool man and gutter men banging and making lots of noise and the movers, well, it always happens that way! huh?! Well, doesn't it??

In the middle of everything, Dad came home from the office to tell me and Mom that he had an eye doctor's appointment this am. Then, he left.

Later, things were finished and completed. Yes, it was calmer. Mom seemed better and less confused. Dad came home from the eye doctor appointment and said he was OK and was just going to deal with his mono-vision and will get the other cataract done later. Then, Dad asked was I going to get Mom ready to go get her hair shampooed and fixed. I said, Yes, I guess so. Wheeled Mom to do morning ADLS and to get dressed. (It's always such fun to get Mom ready). It takes a lot of patience!!! Finally, we were done. Mom asked if I would put some eyeliner on her. Reluctantly, I said sure and then did the best I could. Mom put her own blush on (kinda looked clownish but when I tried to fix it, she got mad, so I left it like it was. Oh well). Mom and Dad headed off to get Mom's hair done and Dad was going to the grocery.

I did have a much quieter afternoon. Had time to get on the computer to search for some flooring. Then, went to the AD Message Boards to do some Peer Volunteer Work. Love those Boards and most of the people on them!!
Dad had bought fried catfish for dinner with mac & cheese. All I had to do was make salads and heat up the dinner. (Easy night).

Later, I fed my animals then took white dog for his walk (gosh, it's still dreadfully hot!). Then decided to go to the grocery. I was going to pick up a few things and winded up spending $150. Man, groceries are getting damnned expensive!!!
Unloaded the car, put most of the groceries away then I ate dinner. Had bought eggplant parm. It was good and made a salad! Good dinner!!

It's now 10:10pm. I'm tired but I am glad it's Friday!My back is killing me but no migraines! Yea! This week is almost over.
Sunday I am going with Elena/ local AD Assn to speak with the Nat'l Assn of ---- managers (sorry, forgot the word). Anyway, their convention is here and I will be manning a booth and speaking to the Assn. Wish me luck!! I hope I can tell My Story and help convince these people about EOAD/AD !! We need more education, funding and Help!

"Parting is such sweet sorrow"

Hope you sleep well!


Thursday, June 25, 2009

A Crazy Thursday! Again!

Hi again, Sorry I hit the send button by mistake and don't know how to edit! lol.

Woke up this morning around 8:00am, checked on Mom. No, she's not in the bed, no, she's not on the bcs, no, she's not in the bathroom, Oh NO, she's on the floor!!!
Poor Mom had gotten up to use the bsc and was unable to make it back into the bed! Luckily, she was OK. Finally, got her up and back into bed to rest a while. Checked her over, she seemed OK. It's a miracle! Many falls, no serious injuries (Thank You God). (My back doctor had said I had to stop doing this but, hey, what do I do? Leave Mom on the floor?? I don't think so!)
Went to do my morning ADLS and lets animals out and fed them. Went back to Mom's. Got her out of bed and into transport chair. Did AM ADLS, gave her am meds and wheeled her to her recliner. Coke and Water were ready! She seemed OK. She made sense, could move all extremities, no headache, I think she'll be OK!

Made coffee milk, visited with Mom. My sister called. Then, Aimee called. Gloria arrived shortly before 9:00am, gave her a quick report. Went back next door to bathe/shower to get ready for the day.

Went to Modern Flooring to pick new floors for upstairs apartment that I will moving to. Then, went to AD Assn for EOAD Support group. Enjoyed support group. Then, on to doctor's appointment. Saw a new Neurologist today who specializes in migraines. She wad good but spoke quickly. Reminded her on several occasions that I have EOAD. She said, "Yes, I know" but continued firing questions at me and was confused by the fact that I either couldn't answer or asked her to repeat the questions (She's young and doesn't understand EOAD) but seems to know a lot about migraine headaches. After the physical, she started my careplan. She talked so fast I couldn't keep up. I had forgotten my journal/my bible that I carry with me to write things down in (I felt lost). I told her this and she gave me a piece of paper to write on. She kept talking fast and I kept asking her to repeat things. We finally got things straight. I asked not to take narcotic pain meds as they tend to make me a little crazy now. So, I was to have blood work, MRI, keep a headache journal, increase Namenda to 10mg in am and 20mg in pm for 1 month. If I still have headaches, increase Namenda to 20mg 2 x day. She gave me a few samples of namenda, a new prescription for more Namenda, a pres. for Phenergan p.o. and suppositories, Pres. for New anti-inflammatory ketoprofen and something called Relpax for severe migraines. All I can say is I hope all of this helps! I'm sick to death of all these migraines! I want them to stop!

Whew, what a day! If it hadn't been for the NP Lynn (friend of mine) I don't think I would have made it through. Got home. Checked on Mom and Dad. Everything was OK. Oh NO, I forgot to take something out for dinner!! Ahhhh!
Luckily, Mom and Dad had some left overs. Dad heated those himself! Wow!

Fed white dog and Orange cat. Orange cat came to be petted and I noticed a rather large cut on one of his back legs! Scooped him up. Brought him to the sink. Checked his leg, wow big cut, cleaned it with h2o2 (hydrogen peroxide), he growled and was unhappy but didn't fight too much. Got cut all cleaned and let him go. Then, I laid on the floor with him to pet and love him. Simon purred. I'll have to keep him inside tonight to keep tabs on that wound. Later, Winston was sitting on the sofa, let out a loud belch and vomited on the carpet!! How Lovely!!

What a Crazy Thursday!

Re-checked Mom and Dad. Cleaned carpet, of course. Then, cooked ham and eggs for dinner. After dinner, walked white dog and watched a little TV. Wow, shocker-roo, Michael Jackson died! Farah Facett too!! How sad. I loved Michael's music! He was a genius in many ways!

Later, went on the AD Message Boards to do some Peer Volunteer work. Ya know me, I love to help!

Well, it's 11:15pm and as usual I'm tired. Time to say "good night don't let the bed bugs bite."

Peace and Hope.

A Crazy Thursday!

Wednesday, June 24, 2009

"Deep Thoughts"

I will stray from my usual bantering. I have some things on my mind that I want to get down on paper/computer.

I have been thinking about my life, this disease, my family, my friends.

The truth is my life kinda sucks. I know many people will say that I am lucky. Today, I don't feel lucky! In fact, I feel down right cursed!

My life hasn't gone at all the way I expected. What did I expect? Well, I don't exactly know.
I did expect to get married (which I did) but I didn't expect to be widowed at 29 years old! Yes, I hoped for a child and yes, I did get a daughter (which I secretly wanted but would never say it out loud). I didn't expect to raise a 4 year old alone but I did. I wanted to become a marine biologist (I LOVE dolphins) but instead I had to become a nurse. Now, I'm not sorry that I was an RN, but I hadn't planned on that either. I didn't expect to have to work and go to school but I did. My daughter had emotional problems growing up (I guess not having a Dad was very difficult) and a Mom working/going to school added to her difficulties. I don't know. I needed a career and that was the only way I could do it! I did expect all the big problems she had.
Then, I didn't expect that hurricane Katrina would hit and that most of my close friends would move away. By then, my daughter had married and moved, then, my sister re-married and moved and I was left here with Mom and Dad! I just didn't expect all this!

And as for my personal choices, well, let's just say I'm a huge failure! As my sister always said, you want to save the world (including men). I've made some poor choices there too!

Well, I had my life in order for a few years then all hell broke loose. Mom started getting sick about 5-6 years ago and it's been downhill ever since! I started having problems at work (yikes, I'm my sole income) and had to take a leave of absence to get extensive testing done. After 6 months and about 8 doctors (including a trip to Emory in Atlanta), I was diagnosed @53 with Early Onset Alzheimer's Disease! Lost my job, my career, my boyfriend, my income, my insurance only to wind up on disability and medicare at 53 years old! Wow, I wonder what I did I do to deserve all this????

I guess I'm just feeling a little sorry for myself today. My life is boring, confusing and, at times, very difficult! If it wasn't for my Dad (whom I love yet he drives me crazy), my daughter Aimee (whom I love more than life itself) and my sister Linda (who has become MY rock - I used to be hers) and my brother-in-law, Michael, who has become my brother, My cousin Jamey (we're more like sisters), and a few close friends and family, I'd be completely Nuts!!!

Sometimes, I sit here and wonder what's going to happen next??? I have been to an attorney and gotten my affairs in order so that my daughter won't have to deal with that later! But, what's going to happen to me?? I talk with others like me on the AD Message Boards. I attend EOAD support groups. We all have similar concerns except that most people have partners. I don't have a partner. I won't ever have a partner!! I don't want to be a burden to my daughter or my sister but how can I help not becoming one????

The demon inside my brain is slowly munching away or shorting out everything that makes me ME and human!! Sometimes, I'm really scared. I don't know what will happen to me next. I am slowly loosing some of my long term memory along with my short term. I am having more visual/spatial problems now. I am having more problems driving. I have to be very, very careful now! I only drive when necessary or when I need to get away! Sometimes, I feel like I'd like to run away! But, I don't. I love my parents. They've been very good parents and good to me and Aimee. I could never dessert them!

Will I ever have a life again that is happy and fulfilling?? Yes, my work with the AD Assn helps a lot. It gives me purpose and meaning. But is that all there is??? I miss the OLD ME. I don't recognize this new person!! And, I don't like this NEW ME!

I hope, some day (God willing) to be a grandmother. I hope I will be ME long enough to know my grandchild. To LOVE him/her. Help him/her learn about life! Spend time with her/him! Laugh again! ( I do laugh sometimes, especially with Aimee. She's very funny and makes me laugh). But I only see her a few times a year! I hope when Linda and Michael move here I'll still be able to travel to see Aimee & Eric & Turtle, and some of my other family and friends!

Oh, I guess I've rattled along too much. Sorry for the downer! I'm trying to get some perspective but I'm no too successful these days. My brain just don't work the way it used to (Oh, that's right, Lisa, you have EOAD! duh!)

Thanks for listening and caring.

I wish you all Peace and Hope.

"Sometimes, dead is better." S. King


Tuesday, June 23, 2009

An uneventful Tuesday!

FYI "Turtle" is fine and home with his Mom and Dad!

Woke up around 8:00am. Had great plans for today. Dad was off and I was free today.

Mom and Dad slept in. Did morning ADLS, drank coffee. My daughter called to tell me she was going to the dentist. My sister called to see what was up for today. Linda & I talked a while then all of a sudden "flashes in my eyes", oh no, it can't be, not today, I want to do so many things then BAM a migraine!! Not the typical migraine, I had pain in the back of my head worse than the front. Most of my migraines are in the front of my head. I'm so mad and so disappointed!! Not another migraine! Sh.t! Nausea started. I took my meds for migraines. I took my morning meds too. Then, I had to lay down. The migraine won. I had to give in. This sucks!

A while later I checked on Mom and Dad. They were up and doing OK. Heated Mom a McD breakfast wrap. Dad was having his breakfast. Told them I wasn't feeling well. Went back home to lie down. ( I can't remember when to use lie or lay) lol.

After a couple of hours, I got up again. I had to search the Internet for my Inderal LA. Finally, found a discount on-line Canadian pharmacy. Ordered my Inderal. Called Donna to fax prescription. Done! Hope the Inderal is real and doesn't kill me! lol. Finally was able to bathe/shower. Felt a little better. Ate something then went on line to the AD Message Boards to do Peer Volunteer work. I do love to help people! And it helps me too!

E-mailed the NP @ Ochsner to try to get an appointment with the neurologist. My Internal Medicine doctor (Lenny) asked that I return to the neuro because of my migraines. (Tomorrow I am going to Baton Rouge to testify for the hearing.)
Received an e-mail back saying that there was an appointment available tomorrow @ 1pm. Can't do it! Need to go testify. Please, get me another one. Then Lynn (NP) called to tell me next available was July 9th! I took it!

Later, my daughter, Aimee, called to let me know she survived the dentist! Her mouth was numb all over ( 3 cavities) and she was talking funny. She said she had taken out frozen swimp to cook! (Swimp? huh? what? Oh, Shrimp!) lol. She was hysterical! It made me feel a little better. We had a good laugh!

Checked on Mom and Dad again. Everything OK. Mom was sleeping. Dad was doing cross word puzzles ( and angry because they were too difficult!) Had taken out some beef stew to heat for dinner (my sister had cooked and frozen while she was here).
Will heat that for dinner for them.

Talked with my cousin Jamey. Got an update on their family crises! Jamey seems to be handling all this better. She's still worried about her grandchildren. I pray for all of them nightly!

Fed Mom and Dad. Fed white dog and orange cat. Fed myself. Walked white dog. Now we're in for the night. Will call Simon in to sleep later. Received a call from Elena that the hearing in BR tomorrow is cancelled. No need to go! Ahhh, I could have gone to the neurologist tomorrow! Ahhh, oh well, such is my life!

My head is aching again, so I think I'll go take some more meds.
Thanks for listening. I hope that by writing down this stuff it helps some of you out there. I know Life is tough. Tough for many of you, both people with EOAD/AD and caregivers. I don't have any words of wisdom. Just a lot of love and feelings to share.
After all, none of us can get off this damn roller coaster! We have to arm ourselves with knowledge, hang on together, share some tears and hopefully some laughter.

"I just have to learn to dance in the rain!"

Peace and Hope.

Monday, June 22, 2009

Another Monday.

Well, another Monday has come and gone.

This morning was quieter than usual. Mom slept in today. I was up at my usual 7:30am. Did my am ADLs. Let Winston out and Simon in. Fed them. Checked on Mom and Dad. Dad was up eating breaking. He said they had a good night. He helped Mom to bsc around 6-ish and she was tired and wanted to go back to bed. I said things sounded good and he said, "Oh, I forgot to tell you that your Mother fell yesterday while we were at the play." "What?", I asked? he said that while Gloria was in the kitchen making Mom lunch, Mom got the urge to urinate and forgot the bsc was there and decided to walk to the powder room. She got there ok but fell and hit her head while she was in there. "What?", I asked again (I don't think it registered). She's ok but I didn't want to worry you. "Dad, she seemed Ok when we returned from the play." Yes, she was shaken up but ok. "How come you're just telling me now?" "We didn't want you to worry." ( I just didn't say anything else and went home).

They tell me all the stupid stuff but not some of the important stuff!! Gosh, it makes me sooooo angry!!! I am or was a nurse. I could have checked Mom after the fall! Damn, they make me soooo mad sometimes!! They make me worry more because they don't always tell me the truth! (Breathe Lisa, slow deep breaths, calm down, there's nothing you can do about it now).

Made myself some cafe au Lait, turned on the tv (news) and pet white dog. (Breathe)
Called my sister Linda to vent. Poor Linda, she gets all my anger!! But, I have to vent it somewhere! She listens. Of course, she gets upset too! But, she reminds me "It is what it is." "Thank God ya'll will be moving here in the fall" I tell her. Sometimes, I feel like I'm going to flip!!! (Well, we hope they will be here in the fall. They still have to sell their house in NJ!

Mom rings her bell around 10:15am. She's ok, she's just ready to get up. She's already wet her diaper, so it's clean up time! Yahoo, I just Love clean up! lol.
Get her all cleaned and changed. Did Am ADLS. Wheeled her to her throne. She's weak but fairly lucid today. Give her am AMs. Success! Then her Coke and h2o. We have a short conversation (she confused about the day of the week but makes sense about other things). I had called Dad earlier and reminded him to go to McDonald's to get Mom some of those breakfast wraps that she likes. Offered her a McD wrap and just smiled and said "Yes, she was hungry." She ate the whole thing! Yes! Mom doesn't eat much these days so I was glad to see her enjoy her breakfast! I offered her a second one and she refused. Shortly after that she was snoozing in her recliner. I put her bell next to her and went next door to do some dishes. A few minutes later her bell rang and she said she wanted to go back to bed. So, I wheeled her back to bed. Put water and bell at bedside and went next door. (door open, of course).

Turned on my computer, checked e-mails, went to the AD Message Boards. Later, I was searching on-line pharmacies (Canada) for a drug I take that is very expensive. I'm now in the gap in my insurance so I have to pay for all my meds! Sucks! The Inderal LA that I take costs about $500. So, I thought I'd try to find it cheaper.
The drug co. doesn't manufacture much of it anymore as it is an older drug. Just my luck!! It's the ONLY prescription that successfully keeps most of my migraines at bay! I tried MANY other meds without success. I'll just keep searching.

My daughter, Aimee, called to let me know my granddog "Turtle" was sick and had to go to the vet. She thought he had another attack of pancreatitis! Oh no! She thought he needed fluids again. She was waiting to hear from the vet. Poor Turtle, he's such a sweet dog! She said she'd call me back when she heard from the vet.

Dad had given me a Netflix of "Slumdog Millionaire" which I tried to watch but kept getting interrupted by phone calls and then Mom waking up. I did finally finish watching it. It was very good but very sad. Worth seeing!

Got Mom up later but couldn't get her to eat anything! Ahhhhh! She did eat dinner. Meatloaf, mashed potatoes and salad ( but not much of any). Such is life!

Watered plants, gardens and trees. It's Hot as Haydees here! We're breaking heat records almost every day! Heat Index 110! Too hot for me!! Walked white dog around 8:30pm. Now both the boys are inside with me which makes me happy!

As usual, I'm tired. It's a whopping 10:25PM, Past my bedtime! Oh wait, Winnie-win-win has to go outside. Both boys are in again. Gave them their treats and we're all off to bed!

Sweet Dreams!


Sunday, June 21, 2009

Father's Day 2009

No, I didn't post yesterday because I had a long day then went to dinner with a friend (Jeff)and didn't go to bed until after midnight! We went to a greek restaurant for dinner, talked and enjoyed.

Today is Father's Day! I first woke up to white dog barking at orange cat at 5:05am. I thought I heard Dad call me to help him with Mom. I jumped out of bed, made a quick pit stop, then ran next door only to find Mom and Dad in bed sleeping/snoring. (Oh, thank god nothing is wrong!). I was, of course, confused but glad that all was OK. Went back to be hoping to be able to go back to sleep. Luckily, about 45 minutes to an hour later I was asleep again. I didn't wake up again until about 8:15. Did my morning ADLS, and woke up to diarrhea on the carpet. Oh, no! (White dog was hiding under the desk). He must be the culprit! Cleaned and scrubbed the area. What a terrible way to start the day! Ick!

Went next door to check on Mom and Dad but they were still asleep (or at least that's what I thought). Apparently earlier, Mom had had another accident in the bed (which Dad dealt with) and their cat Jonesy cat threw up on the card and small gifts I left for Dad (for Father's Day) on their snack bar. Poor Daddy, He had a bad start to his Father's Day. (I found all this out later when Dad got up).

Later, Mom woke up and we did her AM ADLS and wheeled her to her throne. Coke, water and AM meds were given. Mom seems more confused today. I went next door to make my coffee and Dad ate breakfast then went for his AM ADLS. Visited with Mom a while. Mom was mixed up about today and what was going on. I reminded her of what today was and that Dad and I were going to a play this afternoon. She said "OK, good" but shortly after was confused again. I reminded her about the play and that Gloria was coming to be with her. She seemed OK with the plans.

Drove Dad and I to see "Oliver" at Tulane Summer Lyric. Dad had purchased front row center seats, of course. Dad may be cheep on some things but not theatre tickets! He's always loved the theatre! In fact he and Mom loved the theatre but she can no longer attend. Dad shared with me that he was glad I was there with him. It made me feel good. I don't know how much longer Dad will be on this earth. He's 87 and still pretty healthy but you just never know. We haven't been able to do many things together anymore with Mom needing 24/7 care. We share that load. It was nice to spend a few hours together in one of his favorite places! Of course, I love the theatre too. So does my sister and daughter, but no one loves it quite like Dad!!

When Dad was young he sang and danced. Yes, he's an accountant now but he had dreamed of being in the theatre! But, since his Dad had abandoned he, his Mom and 2 younger sisters, he had to give up his dreams! I've always thought that was sad to give up your dreams but sometimes reality kicks you in the butt! Like the fact that now I have to wear ear plugs when I go to the theatre! (It's just too much for me!!) Like over stimulation but with ear plugs I can still go and enjoy.

We came home from the play and I realized I had NOT taken anything out to cook for dinner! I'm so stupid sometimes. It's Father's Day and I didn't even think of planning a nice meal for Dad! Luckily, real food is not that important to Dad. He's become a junkfood junkie. So, they (Mom and Dad) decided they wanted Popeye's chicken for dinner. I ran out and got them dinner. They both seemed happy with that! Dad had even bought an apple pie so we were set. Fed them. Now they're watching a Netflix together (as usual).

It's 8:15pm now. White dog is sleeping on the sofa next to me. (No more diarrhea, thank god). I gave him so pepto earlier which seems to have done the trick. I'm tired again (as usual). I guess you're tired of hearing me say I'm tired.
I still want to go back to the AD Message Boards to check on things. I did go there for a short while earlier but not for long.

Tomorrow is Monday which begins another long week. I do have to go to Baton Rouge on Wednesday to testify to the board about them renewing and re-upping the law that requires people who work in Nursing homes, Assisted Living and Dementia units to have 16 hours of dementia training before they start and every year there after. (P.S. I'm trying to get that time increased). Sixteen hours of Dementia training is a bare minimum and these places are still fighting us on this! People with dementia can be very challenging to take care of. Caregivers need all the help/education they can get!! Being a caregiver for a person with dementia/AD, paid or unpaid, can be very difficult. We need all the help that is available to us to prepare us for this journey!

Remember, AD/Dementia is a journey not a destination. We're all on this roller coaster and can't get off. This can be a very wild ride at times! Education/knowledge can help pad us from the bumps and bruises we're bound to get on this ride! The more prepared we are, the more armor we have, perhaps the better we'll cope and hang on!

As Bette Davis said, "Hang on, this is going to be a bumpy night!"

Thanks for listening.

Peace and Hope.

Friday, June 19, 2009


Yes, tgif. (Although does tgif have the same meaning if you don't go work Mon - Fri ?)
Slept ok last night (thank god, just good sleep always helps). Woke up, did my usual AM ADLS, let Winston out and Simon in. Fed animals. Then, off to check on Mom.

Dad was eating breakfast and stated they had an OK night. Good. I'll get some coffee. which I did. I turned on the tv ( on low) to see some news and what is going on in this world of mine. Didn't really enjoy it so turned to some local news and to catch the weather! This Heat Wave is killing me! Heat INDEX 110 TODAY!!

I realized some time had passed and I hadn't seen or heard from Dad. Went to check, Dad was gone (he went walking in the mall, post office, pharmacy, Kmart and again forgot to tell me he was leaving) Ahhhhh! Checked on Mom. She had had an incontinence accident. Cleaned her up, did am ADLS, then, off to her throne where coke and water were provided. Am meds given successfully! Yes! Mom's not hungry. Stayed and visited a while then Dad showed up. And, then he left to go to work!

Stayed with Mom a while. Fed her breakfast (she wouldn't eat much just a half of a bowl of cereal with some milk and sugar. She didn't even eat it all). Oh well, can't sweat the small stuff! At least she ate something.

Put her on the BSC (made it - no accidents) yes. Then returned her to the recliner, put the bell at chairside and went to check my e-mails and do some Peer Volunteer work.

Later, got Mom dressed and ready for Dad to take her to get her hair done. That's right TGIF (it's hair day for Mom). She VERY seldom misses hair day. She has to either be close to death or in the hospital to miss. Off she and Dad went!!

Great. some time for me. Bathed/showered. Went to a place to look at coffee tables because the one I have it pretty big and the apartment I'm moving to is very small, so I need to find a smaller coffee table. No luck of course unless I want to spend a small fortune. Which I do not. Oh well.

Later, I played my Nintendo DS Brain Age game. Watched a little TV. A kind of boring afternoon. I actually laid on the sofa for a while.

Later, fed Mom and Dad. They watched their usual Netflix. I came home to feed my animals and eat. Took white dog for a walk (wow, still a scorcher outside). Then, settled in for the night. Watched a dvd "Emma" with G. Paltrow which I enjoyed.

Went back on the AD Message Boards to check on things for a while.

It's now about 10:45pm and I'm beat! I'll say goodnight. Pleasant Dreams.



Thursday, June 18, 2009

Today is Thursday

Woke up a little late today as I stayed up a little late last night or should I say this morning? Couldn't sleep last night. Went to bed about 2am.
Slowly rolled out of bed about 8am and realized today is Thursday. Dad leaves early on Thursday. Mom is alone. Oh, nooooo!

Went to check on Mom. Luckily, she was OK. Kind of woke her up by checking on her. Did her am adls, she had another incontinent episode (so, what's new?), Rode her to her recliner. She took AM meds without a problem. (Great, good start). Got her morning Coke and water, put bell at chairside, went to let my white dog out and orange cat in. Fed my boys.

Made my morning cafe-au-lait,( My grandmother used to call it coffee milk) and went back to be with Mom. Gosh, I really miss Mimi. She was my Mom's Mom. My daughter is named after her! She was so sweet and wonderful. I really miss her today!

9:00a Gloria arrives. Give her update then return home. Called my sister for our morning chat/update. Then, Aimee called to check-in! How nice! We had a brief chat as I had a Peer Volunteer Phone Meeting for 10:30am.

Had a really good meeting with Peers then went to bath/shower. Today is Thursday. I can run errands today! Decided to go to find Dad some little Father's Day treats. Went to Martin's Wine Cellar. Bought him a few varieties of cheese straws and some dark chocolate. Dad loves junk food. Dad LOVES dark chocolate. He told me (one time) that if he knew he was dying and he had one last meal, it would be ALL dark chocolate! He's so cute!! lol. At 87, he entitled! There's nothing else he needs or wants so junk food should do the trick (I hope).

God, it was soooo hot today I could hardly breathe. Heat index in the 100's and very humid. My poor car a/c barely works and in this heat, well, just forget it. Oh, the other thing is most of my electric windows are broken! I drive a 2001 Chevy Tracker (crappola) and the electric windows just died. Well, the back windows are dead, the driver's side goes down a bit but sticks and then I have to push it back up and put it on the track! lol. The front passenger window works a little but not much. It's really hard living in the South in Summer with a car whose windows don't roll down!! The mechanic told me that Chevy doesn't make the parts anymore so I'll have to get the parts from a junk yard. Some kind of window motors??!!

Came home to get out of the heat. Mom and Gloria OK. Played with white dog. Watched some TV (AMC). Not my favorite cuz it has commercials. Did some laundry.

Received phone call from my cousin, Jamey in Mississippi. Poor thing, her grown children are having marital problems. It makes me so sad. I love those kids like my own. It's a very sad situation. She has 4 grandchildren that are being affected!! She and I were talking about not understanding today's world and how fast lives can change. I tried to cheer her up. I don't think I did a very good job. I love her like a sister. I'm so sorry for all the troubles her family are having.

Watched part of the movie "Aliens." I love that movie. Makes me miss my daughter. She loves it too. (Yes, It is pretty violent but very good).

Fed Mom and Dad dinner. Mom had meatloaf and mashed potatoes with salad. Dad wanted leftover crawfish and salad. They ate well and seems to enjoy it. Good!

Received another phone call from my EX (well, he left a message on my answer phone) that he would take care of the loan. Right, like he did before! lol. He's such a liar and a user. It took me to file a lawsuit for him to even acknowledge his debt that I have been paying the last nine months. What a loser! I don't know why I didn't see it before?! I guess, sometimes, love makes you blind, huh? Stupidly Blind I should say!!! I'm so glad that's over!!!

Well, it 10pm now and I'm tired. I really did miss my grandmother today. Some days, I still miss my hubby and he's been dead since 1982!!

"Sometimes, Dead is better." S.King


Wednesday, June 17, 2009

"Money makes the world go around!"

Got up this morning OK. Let white dog and Simon out then, went to check on Mom and Dad. Dad was up. Apparently, Mom had another "Bad" night, was up, had incontinence problems and again Dad had problems getting her back in the bed. I just looked at Dad at first. Again, I reminded him to call me (that's why I'm here even @ 2 or 3am!) It's like talking to the wall but I did notice he has his back support brace on! (Oh no, he's injured his back!) He did say his back was "bothering him' but wouldn't elaborate! Men!! Sometimes, they make me so crazy! They are soooooo stubborn!! AHhhhhhh!

Mom was weak as a kitten this morning. Really had to struggle to get her into the transport chair. Had another incontinence episode. Took Am meds. Got her to eat a Brownie! (She couldn't figure out what to eat. I'd rather see her eat a brownie than not eat at all.) right?!

I gave myself a real treat today! I had my hair cut and colored! I feel so much better without all those wiry grays! (Dad stayed with Mom).

When I returned, Dad went back to his office gladly. Mom said she felt "ok." Dad had fed Mom lunch before I got home. She was sitting on my side as her maid Judy was doing her once a week house cleaning. Mom didn't want to stay long and decided she wanted to return home to her throne! I put her in her transfer chair and wheeled her home. Sit her up propped with pillows, with TV, water, and bell at chairside. She seemed contented! Returned BSC and other necessities.

Fed them soup for dinner per Mom's request.Not regular canned soup but soup from Whole Foods. She didn't eat very well. Offered her treats but she declined. They watched a DVD from Netflix ( as usual).

I had dinner later. Took white dog for a walk. He got a poo-poo butt! Had to brinf him home and bathe him. he was pretty good. I received a phone call from my EX. He want ranting and raving about the lawsuit I filed a month ago to get him to pay his student loan that I had co-signed for. Apparently, he was served today!! YEA!! That makes me very happy. He's been NOT paying this loan for a very long time now. As co-signer, I have been forced to keep up the payments even on my small disability check for the last 9 months!!! Prior to this, he wouldn't talk with me. He even had his phone numbers changes/blocked. But, NOW, he wants to talk! Well, talk is cheap and now it is too late! "Show me the Money!!"

He called a few times on both phone trying to bully me into doing what He wanted!! (Of course, I didn't answer. ) Well, "it's too late, baby now it's too late!" I'm DONE with him and ALL that MESS! It feels good to start getting some closure with all that!

Mom and Dad went to bed earlier stating they did NOT need help! Ahhh! I sure hope Dad calls me if they need help in the middle of the night! (Wishful thinking, I guess).

Thanks for listening!


Tuesday, June 16, 2009

Mixed Emotions

TGIT (what, thank god it's Tuesday?) Wow, did I wake up on the wrong side of the bed??lol

Hello, let's see, ok it's Tuesday, oh yeah,I'm trying to remember today but it's pretty fuzzy?! Don't remember what time I got up, but when I did I checked on Mom and she was awake and ready to get up!! Time to put my skates on.....Did am ADLS, Mom too, then rode her to her throne (recliner). Oh, she had a headache which required a darvocet! Coke, water and oh yes, here comes G L O R I A !! Gloria arrives with a smile on her face. She's wonderful! Quick update with Gloria about Mom, then back to my house. Coffee, phone, bath/shower.... off I go.

Have errands today. Off to purchase noodles for the pool, yes, a raft and a circle thing. Problems with finding things in Kmart. Feel confused, can't seem to locate things I'm looking for. Store feel gigantic!! No one to help, of course! ( I guess I looked like Mom when I was in the store. Staring, mouth open, wheeling my cart with no place to go!) Slowly, but surely I found what I needed. I won't even tell you about the mess at check-out. Let's just say something was "on sale" and they didn't have it in the computer!! (so what else is new).

Then, went to discount pharmacy to pick-up one prescription and get another filled. (An antibiotic that the after hours doctor said I needed for my sinuses). I told them generic! Finally, I went to check out and the pres. was $62.00!! I asked them if that was the generic, they said no. I told them to keep it!!! I'm in the gap of my insurance plan. That's where I have to pay for all my medications until I've paid like $5 K !! Don't you love those Gap plans! They rob you blind! I'll just do without it!

Back home, checked on Mom (she was napping) Gloria there, took my meds (I had forgotten), ate a sandwich.
Had my FINAL phone meeting of the ESAG (Early Stage Advisory Group) of the Nat'l Alz. Assn. It was a great meeting! We had accomplished a lot in one year but it was, also, very sad! I felt a great sense of LOSS!! I was really gonna miss these wonderful people. We had worked hard, laughed and cried together. We had shared our dreams, hopes and visions. We had, also, shared our LOSSES with this disease, this demon! Yes, we had cried together too! And now, it was over! Time to pass the torch! I felt very blessed to have served with this wonderful group of people. We all hoped that WE had made a difference in the world of Alzheimer's Disease and other dementias! I think we Did!

The rest of my day was kinda wild! I can't remember all the details but let's just say I went to the gas station to put air in my raft and doughnut thing, Air costs 75 cents!!! I'm shocked, but I pay it and then, wait, what? there's no way to put the air in the mattress or donut???!!! It's just the air thing that inflates tires but it won't inflate the floater and donut!!! AHHHHH!! I'm so P O'd!!! When did things become so difficult. I just wanted to put some air in these things!! I sat, sweated like a pig, white dog in the car panting and looking at me like I'm crazy. I guess I am, He's sitting in car with the A/C on!! Ahhh! Sh.t! Sh.t! Sh.t!!!!gdsob!!!
White dog and I arrive home defeated. Well, he's just happy he took a ride, I'm defeated!! Everything I try to do just doesn't seem to work out! It all becomes so difficult!!!

Then, to top it off, I forgot to take something out to cook for dinner! I forgot, I forgot!! Thank goodness, there's left over crawfish for Mom and Dad. I'll eat later!

Dad's not feeling too well. He's snoozing in his recliner. Checked on Mom, gave her afternoon meds. They are OK! They ate.

Later, I make myself an omelet. Feed my animals. Then, take white dog for his pm walk! Man, it's really hot!! Even at 7:30pm it's still VERY hot! Simon ran outside after dinner (catting around).

It's about 9:30pm now. Just checked on Mom and Dad. They're ok and going to bed! The said they can do it alone! Ok, I'll let them.

I'm tired again. It sucks being 55 with EOAD and being tired @9:30pm most nights!

Today, I've been filled with lots of mixed emotions!!

Ain't Life Grand??!! lol.


Monday, June 15, 2009

"Mon -day, Mon-day"

Yep, It's Monday (remember when the Mama's & the Papa's sang "Mon-day, Mon-day?" ) Wow, life was so much easier then, huh?
I'm migraine free today!! Yea!!!

Today started out not so good. I woke up with a hang-over headache well, not a real hang-over headache but that's what I call my headache after I've had a cluster of migraines. It's no longer a migraine, just a hangover headache!
Anyway, I woke up. (I guess that's a pretty good start). Let my animals out (white dog - Winston) only as Simon (Orange tabby) had spent the night out again. Went to check on Mom and Dad. They were up (I think) but Dad was upset because Mom had already had an incontinence episode and had spilled her Coke all over the rug!! (OMG) Dad was ready to burst out the door! I told him to go take his walk and go to the post office and I would handle things. (Par for the course. Dad can only handle so much. I guess, we all have our breaking points).
Checked on Mom in recliner (she's OK), cleaned rug, started laundry. Check!

Really need coffee! Made coffee, re-checked Mom. Gave Mom breakfast and AM meds. Check.

Spoke with my daughter and my sister. Things are OK in the ATL and NJ! Good!

What, still NO migraine! yes! Just hangover headache, I can live with that!

Dad came home for lunch. I had a bath/shower and dashed to the grocery. Gosh, it was soooo hot outside I couldn't believe it. Only mid June and already heat index is in the 100's!! Wow, It's going to be a long, hot summer! And, often, that means hurricanes!! PLease, no hurricanes this year!

Schlept ( love the word schlept) actually don't even know how to spell it) my groceries into the house, sweating like a pig! ( White dog acted like I had been gone a month.). Put groceries away. Checked on Mom and Dad. Mom was in bed sleeping, Dad was ready to return to the office. Off he went!!!

Finished laundry. Watched part of "International Velvet" on TCM. God, Liz Taylor was a beautiful child! Got Mom up. Cooked Crawfish Monica for dinner with salads. Fed Mom, Dad and me.

Cleaned dishes, Fed and walked white dog. Called Simon in and fed him. Went on AD Message Boards to see if everyone was ok or if anyone needed help. All seems ok.

Not a bad day as days go. Tomorrow I will have my last Early Stage Advisory Group Meeting. It makes me sad to think that I won't be part of that board anymore. But. I'm, also, proud of having served on that board for the last year. We've accomplished some really good things. Updating the 10 Warning Signs for AD, Wrote Principles for a Dignified Diagnosis, Still working on abolishing the 2 year waiting period for medicare disability, and started a lot of new Educational Training especially with Early Diagnosis and Treatment. So much more work to do! Well, I guess I'll have to leave that for the next board.

But, that doesn't mean I've given up volunteering! Oh no, I've still got a lot of things to do!

I'm tired. My brain is tired. I think I go bring Mom some orange sherbet for desert. It's a surprise. (Hope she'll eat it!)

This white dog of mine just jumped up on the arm of the sofa to give me some love and a kiss. How did he know just what I needed??

Sleep well.


Sunday, June 14, 2009

Calgon, Take me away!

Awakened early this am by a terrible, throbbing pain in the left side of my face and head! Migraines a go go! Oh sh.t, not again! Dragged myself out of bed, splashed water on my throbbing face/head, brushed my teeth (pain!) and went to check on Mom and Dad.
Oh, thank God, they are still asleep. It's 6:50am. Must take migraine meds and get coffee ASAP! Let the animals out. A little queezy but not too bad, so I drank the coffee.
Tried sitting up for a while but to no avail. Had to lie down. I'm feeling pretty disgusted and discouraged with this migraine crap! Can't think very clearly as everything is just a big blur!
Mom and Dad get up late (around 9 ish). See them a few minutes but migraine just won't let up. Told them I'd have to lay down some more and would check on them later. Dad informs me that Mom has walked with her walker to her recliner this am. Great, I said. Mom looks pretty tired.

Went back next door to my house. Briefly spoke with my daughter, sister and cousin on the phone. Then, the migraine just kept flaring. Took more meds (added a seroquel) and finally feel asleep on the sofa. My phones rang off the hook (of course, I'm sleeping) but I just let them ring. Slept a couple of hours. Woke up feeling better! Yes! No migraine!

Went next door to check on Mom and Dad. Dad has a long, sad, disgusted face on telling me that Mom has had 3 accidents (bladder) and that the laundry tub is full of soiled pj's. He insisted on Mom trying to walk to the bathroom rather than put the bsc near her recliner (like I had been doing). Poor Dad, still in denial of Mom's condition. He insists we need to get better meds to help with her incontinence. I try, again, to explain that this is as good as it gets but he still can't hear me!! Ahhhh, Calgon, take me away!!!

Put Mom's urine soaked clothes to wash and BAM flashes started in my eyes AGAIN! I didn't know whether to scream or cry! Migraine AGAIN!! I did neither and proceeded to take more medication! Finally, as my nausea grew, I decided to call my PCP. We decided I should go to the After hours clinic for injections. Which I did!!! Five days and nights of migraines are just too much!

I am finally feeling semi-human again. Got Mom and Dad to bed. Decided to write some of this down.
Oh, FYI, when I went to the after hours clinic they started asking me all this info and having me fill out paperwork. I'm sitting there in sunglasses because the lights are blinding me. I tell these medical people my problems including the fact that I have EOAD and they just say ok and keep asking. No slowing down, no real assisting of anything! Still expecting me, migraine and all, to be fully functional! (I have to laugh to keep from crying).
Received my 2 injections and drove myself home!

Had a hellish day! Glad it's over!



Saturday, June 13, 2009

Sweet Saturday?

White dog woke me up late this morning. I don't like when he licks me awake! Ick!

Got up slowly, am ADLS (of course), let orange cat and white dog outside. Went to check on Mom and Dad. I open the door. Dad is standing in the kitchen (robe on) looking pretty pale and worn out. "Dad, you OK?" "Well, not really, I had a hard time getting your Mother off the floor this morning." (WHat? What did he say? Am I hearing right? Mom on the floor???). "Dad, what are you talking about?" "Your Mom got up this am to use the bedside commode (bsc) and couldn't get back to bed. She couldn't stand and slipped between the bsc and the bed." I had a hard time getting her up and back in bed." "Dad, why didn't you call me? That's what I'm here for to help!" "Well, I came over but you were asleep and I didn't want to bother you."
(Now, I have to take some slow, deep breaths to calm down) (OK, more breaths!).
"Dad, where is Mom now ?" "I put her back in bed and she'll have to stay there a while."

I went down the hall to their bedroom. Mom's laying on her side, in the bed, covered up. "MOM, are you OK?" Yes, baby I just had a bad time. Your Dad just couldn't get me off the floor and I was so weak I couldn't help!" (No use arguing with Mom about calling me). "Mom, how are you feeling now? Do you WANT to stay in bed?" No, I'd like to try to get up." (I slowly helped Mom to a seated position, then was able to put her on the bsc and then to the transfer chair. Did Am ADLS, then off to her recliner).

Coke was there waiting for her. Got her h20 and AM meds. AM meds given successfully! Yes! (Dad was making his breakfast and reading the paper). He is such a creature of habit! Mom could probably being dying and Dad would still follow his morning routine. (I think that how he stays sane in this insane household)). Mom's not hungry yet!

Coffee, must have coffee! Made my coffee and spent some time with Mom. She's very tired but wants me to stay. We chat about simple things. She'd confused but can follow simple things. Later, Dad joins us to talk about things. Mom eats a brownie I made for her last night!

Things, what things? It's hurricane season again and we need to plan what to do in case of a storm. I tell Dad that WE will evacuate early if a storm approaches. We plan on what we will needs to take and so on, where we will go depending on the storm!! Meds! We need to get extra meds just in case!

Dad tells me he has tickets to see the play "Oliver" for next Sunday. "That's Father's Day, Dad!" Yes, I know he said. I'd like to go to the play if we can get someone to stay with your Mom..
I put in a call to Gloria (the sitter) to see if she can stay with Mom next Sunday.

Now, I need to make my way back home. I have laundry to do and I'm getting my nails done later today!! (what a treat!)
Get my & some of Mom's laundry done. Go on line to Alz.org message boards just to see what is going on. Also, to see if anyone needs help!

My daughter calls! Oh yea! They are celebrating their 8th wedding anniversary this evening with a special dinner at their favorite restaurant in Atlanta! Great!
Spoke with my sister and b.i.l, all is fine in NJ! Good!

Oh, forgot to take MY am meds earlier. Well, at least I remembered to take them at all! Better late than never!

Treated myself to getting a manicure. (toes too)! Kinda makes me feel a little more feminine. See, I gained 30 pounds in the last year and a half! I feel like a blimp!! Nothing fits, fat as a house, very un-sexy! I don't know how to get my weight back under control. I've been on a lot of prednisone (in fact, still on pred for the bronchitis although weaning off now). I would really love my old body back! Regular size (not skinny) but in shape!!! God, how I miss feeling and looking good! This weight just adds to my depression.

I was thinking about something after I was reading on the AD message boards. Is my Life now CENTERED around my EOAD??? Am I becoming obsessed with having this disease? Do I have other things in my life? They say when people are diagnosed with a fatal disease often it takes over their lives!! Has this happened to me???? I don't think I think about death very much because frankly I don't care much about the death part. I think the journey is becoming overwhelming?! Or is it the caregiving that is overwhelming? Or is it the combination of all of it??

As I am writing this blog, flashes are starting in my eyes!!! GD Flashes, again!! You know what that means?? It's MIGRAINE TIME!!! Oh, sh.t!! I have to go take something right now so the migraine doesn't become it's own monster!!

This roller coaster is gonna kill me!!!!

"Sometimes, Dead is Better."


Friday, June 12, 2009

"Oh, what a terrible morning!"

White dog and I slept on the sofa last night. Woke up, did am things, fed animals, then coffee. I realized that Dad was up and having breakfast. Mom was still asleep.

Good, coffee time. Called and spoke with my sister in NJ. The pod was delivered today! Yea!
Actually turned on the TV to catch some news and to feel like part of the world. Of course, don't remember much of anything I saw/heard but that's ok.

Dad came home from his mall walking and trip to the post office. Mom was ready to get up. He said he'd handle it but didn't. He was in a rush and left Mom on the toilet with her bell. (Oh well, duty calls).

Helped Mom with AM ADLS, wheeled her to her sacred throne (recliner), coke and water waiting. Then, Morning meds! Finally, got those safely down! Sat with Mom to visit.
She's confused today. Keeps forgetting about taking her meds already. Keeps wanting to take them!!
Breakfast time. Offered eggs and stuff but Mom wants her cereal and milk. Ok, no problem. Bib time. Mom's tremors are pretty bad today. Encouraged her to keep the bowl close to her mouth. (she does NOT want to be fed!) She eats most meals propped up in her recliner.

My phone rings a few times then hangs up. Then, my cell phone rings -same thing. White dog wants to go out. Let him out but he took off down the street. (I'm still in my nightgown .... Ahhh!) Went around to the other side of house and let him in MY front door! Thank God he's safe. My phones start ringing again and hanging up! Ahhh!
Finally, answer one. It's my daughter asking me some question about a snow globe! It doesn't compute. Angrily I answer after a brief discussion! No patience today!! I'm trying to multi-task and failing terribly! ( Oh, that's right I have EOAD and multi-tasking is now impossible. Why do I continue to try? Stupid me!)

Finally, get Mom settled with bell at her side. Went to call Insurance Co. about OUTRAGEOUS PT bills I received. After several failed attempts, finally spoke with someone. Yes, the PT facility is in network. Yes, I did all the right things before starting. Yes, there was a co-pay per session. The co-pay is what??? $100.00 per session??????????!!!!!!!!!!! How come no one told me the co-pay amount??? I've NEVER heard of a PT co-pay being $100!!! I would have NEVER gone to PT knowing that co-pay amount! I'm on disability! This is a Humana medicare product! Oh, sh.t!!!!! No more PT for me. My back can break or fall off! Finally, I was so mad I just said goodbye and hung up!! AHHHHHHHHHHH!!!

(Oh, in the mean time, Mom is ringing her bell to take her meds and for me to take her in her bedroom to get some stashed cash she has hidden.) What?? She's going to get her hair cut and washed today and needs some CASH now! Find her stash, giver her some money and hid the rest in DAD's drawer. Called Dad to tell him about cash. Tried to get Mom to wash up and get dressed for hair appt. but she refused. Said she'd wait for Dad. (I let her). I'm tired already!

Aimee and Jamey called while I'm blogging. I'll call them back. I have to finish this and get it off my chest!!! Sometimes, I feel better after I've put some of this in writing. Please, excuse my mistakes. I try to fix them but sometimes I still miss them!

Thanks to Everyone who is hanging here with me. I hope that what I write makes a difference in someone else's life. I hope you can learn from my mistakes! And, some times, I hope, you can laugh too!

I think I need to rest now. Morning is over (thank, God). Perhaps the rest of the day will be better!!

Wishing you peace and comfort.


Thursday, June 11, 2009

Maybe today won't be a bad day!

When I woke up early this morning I realized, I didn't have a migraine! Wow, maybe today won't be a bad day?! Got up out of bed, no migraine! Yep, today's got to be better! Congestion and cough, well, still present but NO migraine! Yes!
Did my usual am things, fed the white dog and orange cat, let them outside. Was able to have my first cup of coffee before Mom's bell started ringing.
Mom woke up fairly chipper and stated "I slept good, I feel pretty good." (It's a miracle!!!) Maybe this won't be a bad day! She took a couple of steps to the bathroom,(yes, steps) stood up and washed her face!
(good start) but then said she was too tired to walk to the great room. Loaded her on her transfer chair and off we went to her recliner! Fresh Coke and H20 was served. Am meds administered. We sat and chatted a bit. She was a little confused but made sense and could follow simple conversations. It was nice.
It's Thursday, " G L O R I A " comes today to be with Mom. Yea! I will be able to attend my EOAD Support group.
Fed Mom breakfast. Shortly after that Gloria arrived. Gave her an update on Mom and went next door to my house. Yes, time for me.

Did a little Peer Volunteer Work on the AD Message Boards then off to take my bath/shower. I write bath/shower because I do both. Don't feel clean unless I've done both! Weird!

Decided to put on a little make-up as to not scare away my fellow EOADers (the forget-me-nots). Good meeting, small showing but good. Played an activity. It was fun. Discussed OUR problems and problems of the world including finances. Stayed a short while longer to discuss some upcoming dates/functions of the AD Assn with Elena. She's really a wonderful, dedicated person. I'm lucky, she's mt friend now.

left the AD Assn in a blaze. On a mission to find a new high tech blow up cushion for Mom's recliner. The old had a bad leak. Gosh, it was hot! The car registered over 100 degrees from sitting in the parking lot. (and it's only June).

Did I tell you? I have been having the SWEATS! For weeks now, they don't go away. I sweat and sweat and sweat some more! They drive me insane. (oh, that's right, too late!).

Finally arrived at my destination. A place called "Total Choices." It looked like they were giving things away free of charge! The parking lots was full. People pulling in and out. When I entered the store there were so many people, I didn't know where to start looking for the cushion. I didn't even bother to ask anyone, not that they has the time or the mind to help. Victory at last! Found the cushion I wanted. Now to pay for it! Mad my way to the counter but no one was there. Waited, looked around, waited some more. Then, just leaned over the counter until someone came to assist me. (at least 10 minutes).
Then I was back in my chariot to bring home the goody! Got Mom's chair fixed up. Then started dinner.

Baked chicken, mashed potatoes, frozen mixed veggies and a salad! Did all that. Did the dishes, now here I am. Boy, I'm tired!

I was talking with my friend on the message boards today. It was very sad. He lost his driver's license! God, this disease sucks! And, he had to jump through hoops to make things right! That really makes me MAD!!! Instead of helping someone with dementia, they make life even more difficult! I felt so bad for Tom.
I think I felt badly for me as well knowing I will be forced to face what Tom faced today.

It terrifies me to think that one day, probably in the near future, I won't be able to drive. (I'm having more problems with that visual-spatial thing!) Like Tom said, it's like being in prison then someone slams the door behind you! I'm so sorry for Tom and all my family and friends who are going through this cruel, hateful, terrible disease! It's a DEMON!

Well, I'm tired now. So I'll say good-night!

"Parting is such sweet sorrow."


Wednesday, June 10, 2009

"I got a lot of Livin' to do!"

Another strange day that began with ANOTHER migraine! I think it had to do with the dream I was having about my EX or should I say nightmare? lol. I can't think of a much worse way to start the day (well, if I really think about it, I can think of some worse things like nausea, vomiting and diarrhea) lol. Oh , I'm getting off track again.

Today, started with a bang, flashes, migraines, coughing, feeding animals, then..... Coffee must have Coffee! Ahhh! Coffee, Ibuprofen then some quiet. Yes!

Who am I? What am I? I'll have to figure that out later.. Later...... ran out of later..... Mom's ringing her bell!! Off to the rescue!!!

After the usual AM ADLS (including clearing her somewhat impacked bowels), gave her the AM meds, rode her to her throne (recliner), where she received her precious coca cola and h20. Mom stated she felt "OK today." (which was a good start for her day). Later, she ate a biscuit with butter I had made from last night. (She ATE!!) Yes!

The other day my ice maker in the freezer just stopped working. just stopped. I got mad, very mad!! Borrowed ice from Mom & Dad. I jiggled and fiddled with it. Nothing! Nothing yesterday! Today, I decided to BANG it and jiggle it and guess what?? It is working again! And they say women aren't mechanical!

I did go to the doctors today as my bronchitis doesn't seem to be leaving me completely alone. More Antibiotics! The bronchitis remains! Bummer! Still sick after 3 weeks!

I've decided that it's not time to give up living my life yet. I still have places to go and people to see (especially my daughter). It's just some days it's hard getting out of bed then mentally and physically preparing for the day.

Oh, in case I forgot, I have Early Onset Alzheimer's Disease! Some days are much more difficult than others. Some days are fine. Some require great amounts of energy and patience. (both of which I sometimes sorely lack). Especially that patience thing!!! Do I hear the seroquel calling my name again?

I watched part of Bye Bye, Birdie on TCM tonight. God, I loved that movie!! I still love that movie! My friends and I used to act it out and sing and dance! We were young. Drove my parents crazy! Boy, am I getting old!

What's even more remarkable is I still remember many of the lines and songs! Ha! That made me feel good because some of my older songs are fading, the words, I mean. And that make me very sad.

"Bye bye Birdie, time for me to fly. Time for me to flyyyy. Time to say Goodbye!
Bye, now!"


Tuesday, June 9, 2009

Desperately Seeking Peace and Quiet !

It's 9:00pm. Dad went to bed @ 8:30. After all, he's 87, works and he's tired! But, will Mom go to bed with him? NO !! That leaves me to put Mom to bed. Again.

Oh but wait, I hear Mom's bell slightly ting-a linging? I go to check on her..It's 9:05 and she's sitting on the edge of her recliner holding her bell. I ask, "Mom, what's up, are you ringing for me?" "No, I'm just going to bed now!" (Of course she has no clue has to how she would get to bed) so I ask, "Mom, do you need me to help you?" "No," she states. I wait a few moments and ask "well, how do you plan to get to bed when you can't walk?" "I dunno," she says. She just sits there.
I grab the transport chair and help her into it. Wheel her down the hall to their bedroom and bath. She attempts to get up and walk into the bathroom. She is unable to. It's a tight squeeze but I get she and the chair in the bathroom! After assisting her with ADLS (including her brushing her teeth for about 6-7 minutes with her electric toothbrush with her eyes closed). I give her her meds and finally tuck her into bed!!! (Oh, don't forget the pillow between the knees).
Goodnight Mom, I Love You. I Love you too she says softly. (Dad's snoring!).

Finally, some Peace and Quiet. What will I do with this precious time?

Play my Nintendo DS? No, not in the mood tonight. Watch some TV? No, I don't really like much tv anymore except for TCM and a few other stations. I guess I'll finish this blog then go on the Alzheimer's Message Boards (alz.org) to see if I can help anyone. I was on the AD Message Boards earlier today.

Did I tell you? I'm a Peer Volunteer for the AD Message Boards. There are five of us. Three with EOAD and two who are caregivers. It's a great group of people dedicated to helping others. I am honored to be a part of this. When I was first diagnosed, the AD Message Boards were a life saver for me. I had NO ONE! No local AD Assn since Hurricane Katrina. This was MY LIFELINE to people like me! The only support groups were in Nursing Homes for gorked out, older folks. That wasn't for me! No way I was going to one of THOSE groups!

So, I kept writing on the AD Message Boards. Finding people like me. E-mailing the Corporate headquarters of the AD Assn in Chicago. Then, I met Elena. What a dream she was. Dedicated, hardworking, determined. Just what I needed!
She re-started the AD program here. And, between the two of us and a lot of other help, we started a New EOAD Support group here for people with EOAD! Wow, it took awhile, but the meetings finally started and they help.

To anyone out there who is alone and unsure, PLEASE find an AD support group! Even if you have some support, Meetings are a must! And caregivers, you need a support group too!! Maybe sometimes more than us!!

One good thing about today. My intense anxiety has diminished some and my migraine too. The Force must have been with me today!

"After all, Tomorrow is another day!" S. O'Hara.

I wish you peace and rest.


Stop the roller coaster, I want to get off !!

Wow, what a terrible day I am having. I woke up a little late. Luckily, Mom wasn't up yet. Dad had gone to work already. Got up quickly to check on Mom next door.
By the time I fed the white dog and orange cat and made myself a cup of java, Mom was ready to get up. Helped her with ADLS, put her in her transport chair and made our way to her great room. Got her in her recliner, gave her meds, coke, water. She's weak and confused but OK. Not hungry yet. She's kinda quiet today.
Within an hour, my savior arrived, Gloria, the wonderful sitter! Now, Mom would be taken care of. I could start MY day now.
Played with white dog, drank coffee, spoke with my cousin, daughter and sister then off to take my bath/shower. But, I strange thing happened....while a was in the tub I felt a sense of anxiety/panic, tightness in my chest, my throat which has been foreign to me for quite some time now...and then.....flashes,.... oh no... a migraine!! Oh Shit!! (unfortunately, my favorite saying),. Where is all this coming from?
Could it be the prednisone I'm taking for the bronchitis? I hate prednisone but I'm taking it because I've been sick now for over 3 weeks! This really sucks! And a migraine to boot, Migraines don't usually happen while one is taking prednisone! Just my luck!

Did some slow deep breathing. Became more p.o'd as time when on. So, I opted to fight the damn thing!! Finished my bath/shower, finished my ADLS, then went to take my morning meds. More deep breathing, knots in my stomach. Drank part of a coke, took 3 ibuprofen and trucked off to the grocery (nausea intact).

Made it through the grocery. Coughing and deep breathing, trying to smile and not look frantic. Loaded the car. Unloaded the car. Put some groceries away, then sat down to have a salad. Ate that and a banana (banana had NO taste).

Called my doctor and left message for him to call me. Finished the laudry I had started earlier. Finally, when I didn't hear from my doctor, took a clonazepam and rested.

I decided to try to blog these feelings and events in the hopes of helping others. My head is still pounding/throbbing, some nausea but I think I've won the battle yet not the war!!

Some days I would really like to get off this roller coaster but that's impossible so I'll just have to figure out how to keep riding and holding on.

I need help but sometimes don't know where to find it. I would love to have someone put their arms around me, hold me tight and tell me everything is going to be OK. But, there's no one there. Just me. I can't figure out how to hold myself yet. Maybe in time??

Sometimes dead is better!


Monday, June 8, 2009

Is this really MY life???

My crazy mind wonders "Is this really MY life? The last year and a half have been so unreal! Yet, this is my reality now.
My life goes by day after day. I take my meds and supplements (when I remember to). I take care of my Mom who is declining almost daily and I wonder....is this it??? Is this all there is now???

Well, let me back up. I did go out to dinner with a friend this weekend. I did have some time for me. So, why am I complaining?? or am I complaining or just trying to re-figure my life? I don't know.
How do I figure out how to cope day-in and day-out? Dad's still in some denial so he's no real help. My ex, well, he's my ex... so no help there. He didn't get it even when he was around! Most of my friends are busy living their own lives. Don't get me wrong. They are great friends in a lot of ways but often they just don't get it. I mean, I'm not completely confused or drooling, so I guess they think I'm ok.

Ya know what, I'm NOT ok but I don't know HOW to BE ok. And, I don't even know what ok feels like anymore! Is there a NEW OK for me?

So many changes, so many adjustments, so many losses. Such a different me!

How do I become ok with the NEW me? My brain slows and sloshes and then a jolt of oh it's ME! I forgot! lol.

I don't seem to remember too many dreams anymore but I do think I dream of the OLD me sometimes. The way my life was or... was supposed to be. The Nurse, the Mom, the Sister, the Daughter, the Healer, the Lover, the Fixer, the Juggler, the Friend, the Cousin, the Calm one, the Rational one, the one with a strong sense of self, the Confident One, the Boss, the Leader.......... Wow, have things changed!


Saturday, June 6, 2009

Bye Bye Big Sis

My sister left today. I'm very sad. She had to go back to New Jersey to be with her wonderful hubby and 4 cats. She, also, had to get her house ready to sell.
Yes, my sister and her hubby are moving down here to help me. Isn't that wonderful?? Yes, very wonderful!!
I am now left to deal with Mom and Dad alone again. Wow, it's a lot of work! Well, mostly Mom, Dad is pretty self sufficient. But he's still in denial about how bad Mom is declining. I tried to talk with him about getting more help but he just sat and stared and didn't answer. Oh well, I guess I'll try again later.
My daughter called today. It always makes me happy when she calls! It also makes me miss her too. I just have to deal with missing her. Hopefully, she and her hubby and my granddog will be visiting again soon. I can't wait!!

Bye Bye Big Sis! I miss you already! Thanks for all your help!

Peace and Hope.


Friday, June 5, 2009

One more thought

I just wanted to let everyone know that right now I am unable to follow anyone else's blog! I'm too scattered!

Thanks to everyone who chooses to read mine!

I hope it helps!

Peace and Hope.

When did everything become so hard?

I keep asking myself this question: When did life become so hard? When did doing the simplest task become so difficult? From getting up in the morning to going to bed at night, EVERYTHING is hard. Nothing is simple anymore. When did this happen and Why?

In life, there are no simple answers. Is that a true statement?

Surely love is simple, but is it? When I think of all the people I have loved and still do love the answer is NO. Love is not simple. It's a very complicated emotion. And then of course there are different kinds of love. Unfortunately, all the types of love don't come to mind right now. (Where is my memory when I need it?) oh that's right, it's in dementia land!

I think loving a child is the simplest, easiest type of love, at least for a Mom. It's normal, natural and without limits. Yes, loving your child is an easy love!
But, what about some other kinds of love. Like loving your parents? Yes, I love my parents but I don't always like them. Is that so awful to say? My Mom has AD and there are times when I don't like her or her behavior at all. God, I'm a terrible person!

Oh, I've gotten off the subject. Life is difficult for me most if not all of the time. Trying to cook, run an errand, take care of Mom, make a phone call. It took me six phones calls to get Mom's doctor to call in a prescription and for the pharmacy to fill and have that prescription ready! Then, when I arrived to pick it up, no on knew anything about it! Ahhhhhh!

Perhaps it's because I have such trouble remembering how to do things that they have become so difficult? No, because there are still many things I remember. Perhaps it's that my processing speed has slowed down to a snail's pace? Or that I have a very short attention span? Whatever it is it is driving me crazy!! Oh, too late! lol

Everyone always seems to be in such a hurry. The faster the better. Perhaps I was that way too? But now, life is whizzing by and I can't keep up. It's very frustrating and annoying! Maybe that's why I'm angry a lot??

I am angry a lot of the time. I don't realize it as much as others do. It's kinda like a slow simmer, ready to boil or pop at any moment. The medications help some but not always. I blew up at Mom yesterday because she was mean and ugly to me again. I KNOW I shouldn't to that but sometimes I just can't help it!!

Having Early/Young Onset Alzheimer's disease really sucks! Sometimes, dead is better.

Pleasant Dreams!

Thursday, June 4, 2009

What's it like living with EOAD?

I sometimes think to myself, well, what is it like to live with EOAD? Many times my answers aren't as clear as my questions.

Well, it's like loosing myself a little at a time in bits and pieces. Like the things I did, for example my career (being and RN) I was proud of that. Now, that's gone. My spelling is gone (I have to use spell check). It's strange, I used to take pride in myself about my spelling but that's gone too. I, also, took pride in my analytical thinking skills, being able to really think things through. Look at problems and situations from many angles then figure out a good, logical solution or answer. Gone. Good crisis thinker. Gone.

It's funny, in fact, that I used to be the shrink in my group of friends. Everyone called me with their problems. I was the ONE to help them find their solutions. I would stay calm, level headed and we talk through the problems. Well, a few people still call with that but not many and not often. Why should they ? I can't really think like that anymore! Gone again. I've become a concrete thinker...how awful!
I used to be fairly calm, level headed, yes, a fighter (when necessary to protect my cubs) but very much a peacemaker. Now, this demon called anger/rage that rears it's ugly head and frightens and upsets the people I love most. That really sucks!!! The meds help some but it's still their lurking......just waiting to burst out!!

Yes, I do live with EOAD everyday but everyday is different even though there are some similarities. One thing is for sure, if I don't get enough sleep, it's probably gonna be a bad day. It's, also, important to remember to take my meds and eat! Sometimes, I forget one or both of those. I know that's not good.

Strange thing is you could meet me on the street, talk with me and probably never know I have Alzheimer's disease. We're all different and function at different levels. And each day is different. Although, If you caught me on a bad day, you'd know because I couldn't hide that confusion. That confusion is too overwhelming.

Sweet Dreams.


Monday, June 1, 2009

I miss my daughter

Today is rather a down day. Ya know that roller coaster can really bring you down! I've helped take care of Mom, played "brush brush" with white dog, and now I'm on this computer. I really miss my daughter, Aimee. Haven't seen her in a couple of months (although it seems longer). I miss her face, her laugh, her great sense of humor! It's really hard living so far away!
I think I must be declining slightly. My attention span in naught, I am having trouble remembering my meds, how to cook (used to be rote), and some trouble with driving ( I think it's that spacial thing). It frightens me when I think I'm declining. Even makes me a little anxious too.
Still playing my Nintendo DS games Brain Age and Brain Age 2. Trying to keep my brain stimulated and active.
I've been dropping more things too (not sure if that's EOAD). Also, having trouble transferring things from one hand to another (it's very confusing)!
Oh well, "That's life in the big, windy city" (that's what my hubby used to say (actually not really sure what that means) or as my sister says "It is what it is."

Thanks for listening.