I feel like I've just taken over this board lately. How is everybody doing? May we have some updates...........please.

I no longer have an update. I'm too busy running around now.
It's been a long time since I was able to go when and where I wanted without worrying about things.

I agree with you though. Where is everyone and how are you doing. Even if it's just to say I'm still here, it's good to hear from you.

You're not taking over the board so don't worry about that.

Im still here, reading, but for some reason, Im embarrased to post. I feel on unstable ground with all the changes.

We now have a visiting nurse to take Dad's vitals. A soical worker came to assess the situation. Hospice?-dont know.
Dads off Glipizide, his sugar level is stable and his constant hunger & agression has deminished. He can now figure out the door locks and the alarm - whereas before a piece of paper covering the deadbolt would confound him.
He likes to sit on the landing (they live on the top floor of an apartment building) and call out, "Come on up, Dont be afraid. I dont have a gun". The real trouble is, hes too weak to stand up and his balance is terrible. Mom seems unconcerned and that scares me.
He fell down the stairs last year and I dont want that to happen again.

The unending cycle of laundry, urine smells &stains, poop in the wastebasket, shopping,trying to upbeat, thinking of activities and topics for him, listening and paying attention to Mom & her health issues, worries about the future -- its all tiring and depressing -- and Im only a secondary caregiver!
I wish I could turn off the feeling center of my brain and just do the work and not think or worry.

Plus the continuing confusion and guilt of taking care of (and caring for) a formerly abusive Father ----wow.
And I was only going to write a few words.
Im OK but i can handle it better if I dont have to think or talk about it ---- how messed up is that?
But at the same time, I know I need to talk about it, especially with the people here who really understand.
Why am I pushing away help when I really need it?

Thanks for listening. Now Ill go away and feel guilty for revealing too much.

Take care friends - its just another tricky day.
Eileen

Eileen,
There's no reason to be embarrased, you are among friends and we understand.

Maybe it's time for the keyed dead bolts. I'm not sure how your mother would accept that, but your dad would be safer. The keyed bolts never bothered Bill and they sure took a lot of worry off me. Another fall down the stairs may not be as lucky.
When it comes to laundry, I had to do two loads everyday just to keep the sheets and pajamas clean. I never had poop in the waste basket but I did have a lot of poop in my hands while keeping him clean.

Caring for an abusive father would be hard. I'm not sure I would have worked as hard caring for Bill if he had been an abusive husband. It takes a special person to put the abuse in the past and care for that person. You are a special person for doing that.

It's always easier if you can forget what's going on, but I doubt that you forget. The worry is always there no matter what you do.
Don't be embarrased, it's easier if you know you can talk about how you feel and not be judged for what you do. No one here has any right to judge others because we are all doing or did what we feel is the right thing.


I don't think I thanked you for the pictures. I am glad we had a chance to meet in Chicago. Take care of yourself

Eileen, it worked, you were invisible, in fact, I didn't even know your Dad, was still living? I know what you mean though, sometimes if you don't talk about it, it keeps the horrifying reality, more at bay. If it's just in your head, well, maybe it is, just in your head? I think of it like crying, I HATE to cry! But, after, I do feel like a load has been lifted, and I think that's what venting does for us, as well. And, as Joyce said, it is so important, to have a SAFE place to come, express what your life is like, how you are feeling (or not feeling) about it, and not be judged.

I wish I could have met you too! And Thank-You for all the Photo-Documentation, of the Quilt Project. I am always afraid, if I don't go, WHO will take the pictures? That is a lay-over, no doubt, from visiting Mom & Tom, they don't have a camera, and they don't know how to use mine.So as for me? I may be going to see my Mom this Month, or in November. She sound really sweet, and happy, on the phone, although she asked me the same question, about 100 times, I don't mind answering. Her short term memory, is shot. But Thank-You-God, her Long-Term Memory, is still fine. And I have been in it, for 54 years! She is still continent, except for a few #1 accidents.

I thought WE were finally on the same page, for her needing extra Companion Care! (YA THINK?) but alas, it has not been done yet, so I guess that will be my biggest project, this trip. INTAKE! I'll know more after I see her up close & personal. She does need help bathing, but it is tough, since they don't have a bath. She needs you to stand there, and hand her things, and remind her which part next, and BE SURE TOO RINSE, etc.

WE have ALL agreed, she is NEVER to be left alone again! I called one day, and Mom was home sick, and Tom just went on his marry way, for several hours! I called both my Sister & Eva (Mom's Private Duty Nurse) and they both agreed, never again, it's not safe for her. "WHEW!"

Next....

I'm still lurking around trying to keep up with everyone. Just haven't been able to post in response. Still very much on an emotional roller coaster ride. The “ups” are great but the “downs” are not much fun.

I had planned to go to Chicago but fractured my leg right above my ankle about two months ago. Still in a big black boot and doing physical therapy. Just another one of my weird accidents - hit my leg on a metal step-stool and went 3 weeks really hurting but without knowing it was fractured. X-rays were negative but finally an MRI confirmed a fracture after I kept complaining of pain and swelling to the doc.

And then, right before that I was diagnosed as pre-diabetic and prescribed meds. So, hopefully, with some weight loss and learning to eat and drink something other than Cheetos and Cokes, I will bring the numbers down and drop the meds. Took a diabetes class (once weekly for 3 weeks). After the dietician talked about eating nuts and how good they are for you, she moved on to snacks and not having those “candy moments.” I asked if eating a Snicker was excluded from that category since it had nuts in it! I guess you know her answer on that one. Oh, well, I tried.

Well, I have finally started gathering material for hopefully a book. I was kind of hung up on a book of poetry but was just stuck with moving on about that. Plus that alone just didn’t seem to honor my Mom the way I wanted and bring more attention to AD and care giving. Then a few nights ago I went back to old board when I first started posting in 2006. Read our posts and realized I had a chronological history of Mother’s last year and then I had my blog dedicated to her that I wrote the first year after she died. Light bulb went off. By taking that time schedule I could focus not only on my Mom but also on the disease itself as well as being a care giver. With that information, interspersed with the poetry, I think I finally have some direction.

I’m putting together a team, Winnie’s Warriors, for the AD 2009 Memory Walk in College Station in November. I’ve really had good response with donations and people indicating they will walk. I’m having some shirts printed with Mom’s picture, team name, event and location on the front. On the back will be one set of chimes. I think they will look really cool.

Thanks Eileen for the quilt photos. You did an excellent job! Looking forward to getting my mail from you.

Been keeping up with Lori's travels. I'm envious. And, Nancy, the photos Lori took of the lake views from your home are absolutely beautiful, even breathtaking. Now, I'm really envious of that. I'd love to sit out on the deck or even the rocks and write. Talk about inspirations!

Joyce43, the photo of you lying on the quilt next to Bill’s block is about as loving a picture as I have ever seen. You and Deb both continue to be in my thoughts and prayers.

And, sames u and your Mom, know you both are very much in my thoughts and prayers at this difficult point in your journey. Just stay strong, my friend.

BSG, keep hanging in there and enjoy your next trip to your Mom’s. Thanks for sending the e-mail.

I just want to give a shout out to everyone on the board. May your days be blessed and your hearts overflow with love.

I'm still working as a caregiver for several people here in the Jackson area. Once in a while, they do something that shocks my socks off, but I'm finding that caring for others that can't do it for themselves is rewarding in a way. As far as DH and I, we are still trying to sell Old Navy's condo so we can settle the estate. After that, we are looking to move to Texas to be closer to our 2 daughters.

I haven't been around in a while so I'll post a short update too.

We've reached a tipping point with Laurette where I either have to change my lifestyle or we have to change hers. What I mean by that is either I have to stop touring with the band or we have to move her out of her home. Normally my mother helps me out here and there, but when I'm gone she is the full time caregiver and has no respite. It's becoming too much for her to handle while I'm away.

Additionally the band is MOVING to Brazil for at least three months, partly to work and partly just for kicks. I couldn't do that and run my business also, so the way forward is clear. I'll be quitting the band and giving up my travels to 20-25 countries each year in favor of working from home and caring for grandma. Is that a good decision? Who knows. I do know that it would feel like a bad decision to kick her out of her home of 45+ years just because I want to travel some more. I've already seen more of the world than most people ever will in their lives, so I don't have much to complain about.

Travel is like crack though, highly addicting. I'll miss it, for sure.

We're also on the verge of ceasing all medications for AD. We accidentally ran out of Namenda for a while and during the 3-4 weeks that we were out we noticed no changes. The doctor said she had been on it so long it was probably ineffective, so we switched to Exelon to give it a try. That has been a few months now and it also seems to be ineffective, so I think we'll probably stop medicating very soon. Her skin reacts poorly to the patches anyway.

Her temper is getting shorter and my ability to recycle conversations can't keep up with her any more, but overall she's still handling things very well. She still feeds herself and is quite mobile and verbal, although I'm doing a lot more these days with toileting/showering/dressing tasks.

I just got back from Europe and I'm on my way to one last tour in South America, and then I'll be home full time. I have mixed feelings about that because very few people get paid to travel the world and play music, but with any luck I won't regret it. Fingers crossed.

As most of you know, my MIL passed away last Feb. We have heard absolutely nothing from SIL, since Hubby settled finances with investment company, without her.

I am busy with "The Little One" in high school, and in 2 choirs. If I can tape their concert on the 22nd, I will try to post it somewhere. He is really involved in school this year. "The Big One" is in his second year of college.

A lot of my time is taken with trying to help my Brother through stage 4 esophageal cancer. He has had 2 chemo treatments, and has responded well, so far. He has actually gone back to work, as he was running out of "paid" time off. He lives by himself in Oklahoma, and does not have internet, so Sis and I run our keyboards ragged, getting info for him.

I am thinking of going back to work, but I don't know where. I have not worked in 21 years!! Maybe a job for the holidays? Don't know.

I haven't been writing lately, but have been keeping track of all of you.
Nina

I haven't posted in forever, not alot to post about I guess.

MIL is same old same old. Good days and bad days. She used the dishbrush for a hairbrush the other day, that's about all I can think to say lol.

SIL lost her mom recently, so sad. MIL took it really well though, surprised me.

Kat

I'm still here too. I haven't posted lately because I have been spending so much time with my one year old grandson. My daughter-in-law has just been diagnosed with MS so I help out as much as I can.

My mom has declined quickly in the last few months so we have had medication changes, beginning incontinence, weight loss due to eating issues, and of course the ever present delusions. We also had to get a wheelchair. My mom's legs are strong but with the continuing loss of her executive brain function we have to use the chair when we go outside. The chair has triggered some major temper tantrums.

I also had to change one of my caregivers (at 62 she had many of the AD symptoms I used to see in the early stages with my mom) and that has been very hard on both of us. I was sent (through the government agency that provides the care) a young woman who talks too much and leaves my mom exhausted. I have to call today to see if I can get someone else.

I can tell you that a great way to not have caregiver depression is to run after a one year old while taking care of your AD mother. You are too tired to be depressed and a one year old's smile just lights up the day.

I do read what everyone posts and I sympathize and celebrate with you and send up prayers when needed.
northernlights

sames u,
How are you doing?

everyone else caring for their LO, let me know how things are going and how you are doing. I'll never forget all the help everyone here gave me when I was caring for Bill. I only hope I can repay it by helping others.

Love you all,