Living with Early Onset Alzheimers

I am back, now if i can just remember where i am back from

2011-01-24T16:12:00.003-06:00

well, it has been awhile. so many thngs have changed. mainly i lose my oldest son. it has really taken me for a loop. i love him so much. the what ifs is really driving me crazy. my alzheimer's has really taken a nose dive. i try not to stress but that is a useless effort. i see him and it takes my breath away. we had gotten so close in the last few years. i lose my mother last year and the pain with losing my son is so far out there that there is no comparison. we no longer have a chapter here and i am here alone now. no more speeches, no more interviews, no more getting the word out. i feel like a redheaded step child. i keep busy sewing, crocheting, knitting, whatever it takes to keep my hands going.

What a great Thanksgiving

2009-11-28T08:22:00.003-06:00

Wednesday before Thanksgiving I received the most wonderful news. I had been trying for months to get into a case study with a drug that stops Alzheimer's where I am at. They had to do a Cat scan Tuesday b/c I was diagnosed with vascular dementia and if this was true I could not get in the study. The results came back that I did not have vascular dementia it is all Alzheimer's. Somebody else may have been upset with that news but I was so excited I cried. For a chance to stay where I am right now and not get worse is great. Now for the drug to work. YEA! I had a wonderful Thanksgiving, up until Lynn's accident Thursday night. Oh yea, I start my first visit to the research clinic Thursday Dec 3. I am including a picture of me, Lynn, Chelsea, Angel and Susie at the 2009 Northeast Louisiana Memory Walk.

Hey ya"ll

2009-11-21T11:27:00.002-06:00

It's been so lond since I sit down and wrote on my blog. I am hanging in there. I finished the National advisory board in July, I think, and the La. Task Force in Oct. I try to stay busy on a local level now, every chance i get. Here are 2 newspaper articles printed this month. They miss quoted Sandy about not being able to stop Alzheimer's, they left out the word not after can. Other than that I have really been trying to get the word out.
http://www.thenewsstar.com/apps/pbcs.dll/article?AID=2009911060313, http://www.thenewsstar.com/article/20091115/NEWS01/911150306/Alzheimer-s-disease-touches-many.

Sal at www.whimsydoodlegraphics.com has some new purple ribbons for those of you that machine embroidry, so stop by and look around. I really have been pushing other companies to remember us next year for National Alzheimer's Awareness Month.

Till later. Hug someone you love. Sue

National Alzheimer's Awareness Month

2009-10-30T10:43:00.001-06:00

http://www.youtube.com/watch?v=nf6PEuLvJxw
I am so proud to be a part of this. Sue

Life

2009-07-28T10:17:00.002-05:00

Well, it's been awhile since I wrote. I think about writing then I get sidetracked and forget about it. Alot has happened since my last writing about me including my Alzheimer's getting worse. I have been under alot of stress lately and the last month has proven stress is not good with Alzheimer's. My mother passes away a couple of weeks ago after a couple months of amazing the doctors by being taken off the vent and living more than a couple of hours as they predicted. My youngest son has gotten married and until a couple weeks ago refused to move out. My oldest daughter is stressed out carrying for her mother-in-law with Alzheimer's and taking care of her granddaughter, so my next to the oldest and I are taking turns caring for the baby (2 year old). I finished my year with National and we are wringing down the task force. It has to be finished to present in Sept. I am so thatnkful for the year I had the priviledge to be on National, it was very rewarding, and I have to admit the third Tues seemed strange not doing a conference call. I am trying to get in a clinical trial study. I have to keep getting involved or else I will go down even faster. I feel like I am in a race to do so many things that I do not have time to do. Oh well that is it for now. Don't forget about the memory game at the bottom of the page.

FREE $$$

2009-07-27T16:08:00.000-05:00

I found this on the www.alzquilts.org, FREE $$$. This is a great way to help raise money for alzheimer's awareness. Please stop by and check it out. Thanks Sue

Looking my future in the eye

2009-01-14T19:37:00.002-06:00

I am sitting with my mom in the hospital. She has Alzheimer's along with other medical problems. They did a biopsy this morning. Back to her Alzheimer's, yesterday I spent the day listening to the way I will be one day. She was so out there. One minute she knew who I was and then she thought I was her sister. My brother has been dead for years but yesterday she thought he was 21 looking for a job. Then she thought I was dead and my grandparents were in heaven watching over me. The list goes on and on. I was able to handle all of it but I worry that my kids and Jesse are not going to be able to when I get to that point. I will miss my first task force meeting tomorrow. Guess I will close for now. Hug someone and let them know you care. Sue

Good morning

2009-01-12T07:56:00.002-06:00

Well, just wanted to say good morning and hope everyone has a good day. Life is good. I hope to have a rather quite week. Today I plan on staying close to the house. Tomorrow I plan on going and having coffee with a very lovely lady in our church, then to quilting class tomorrow night. Wed stay at home. Thurs to Baton Rouge and then Friday maybe a trip to Monroe or not. My 20 year old is coming back home Thursday. He really pushes my buttons and takes days off my life very rapidly. I have already started having my memory going down hill lately. I do not really need the tension he brings with him. But what is a mother to do. I did not mean to write a downer but I must have needed to voice my concerns. Anyway, hug someone today and let them know you care. Sue

Anonymous

2009-01-07T12:30:00.002-06:00

Please email me at sue71435@hotmail.com

Been locked out

2009-01-07T11:18:00.002-06:00

I've tried to get back on here a time of 2 but it would not let me in to post. We had a great time at Boogie's, youngest daughter's, outside of Dallas. All my kids where here for my birthday, except Boogie. There seems to always be one of my kids that do not show up for family events. Jesse and I started walking this morning. I am getting ready for Washington DC in March. I do not want to give out of breath on the HILL like I did last year. I want to enjoy that whole trip. Lynn, my next to the oldest daughter sent me information of where we will be staying in New York on the square. That is going to be a fun trip also. So my walking shoes are going to have to get to work. Tomorrow is our support group meeting. We did not have one in December because of the weather. Unless I can get someone else to drive me to Baton Rouge next Thursday, Jesse is going to have to take me. I have picked up a new hobby, crazy quilting. Something I can do while I am in the car or sitting in the front room with Jesse while he watches tv. I am being to get anxious when I just sit. The last few days have been a little rough. I went to the library yesterday and thought I had gotten a particular book down I wanted and left it but when I got home and started looking at the books I got I had actually checked it out. I could not remember what the book looked like. It is really getting to the point that when I go to any store and buy something and bring it home and put it somewheres I forget about buying it or doing whatever I wanted to do with it. "Out of sight out of mind." Don't let me put something in a drawer in the fridge it will rot before I find it and try to remember why I bought it in the first place. The sun is out today. No rain. Yea!!!!!! Well, for now hug someone and let them know you care. Sue

hi,

2008-12-25T14:43:00.002-06:00

Well its been awhile. Maybe since I have finished making Christmas gifts I can get back to writing on my blog. Right now I am at my daughters in Texas for Christmas. We will be leaving tomorrow heading back home. I hope everyone had a Merry Christmas. Talk later. Sue

Work your brain

2008-11-03T19:09:00.003-06:00

I have added a free online game for your pleasure. I believe we should work our brain and I try to keep busy. We had our 2nd state task force meeting this past Thursday. It was an eventful meeting I think. Alot of reading before our next meeting. I am going to the Dementia Training meeting in Shreveport this Thurs and Friday. I hope to get Jessie and papa and I taking her to the fair next week in Olla. Well I guess I will close for now. Hug someone and let them know you love them.

Hi

2008-10-08T16:35:00.003-05:00

Well, I did go to Baton Rouge for our 1st task force meeting. It was just general issues discussed. We had to mail our bio in so they could decide which committee to put us on. Missy wrote mine. She did a really good job. Then I kept my 16 month old great granddaugter for a few days. Jesse was in bed with the bug so it was me and little Jessie. I have so much fun with her. She is so good. Then I took her home to rest up for the Memory Walk. I got Jesse's bug, he swears that I did not, but anyway, I got sick but was determined to do my story at the walk becasue Stacey was so depending on me. I did the speech, not the best I ever did but I got my point across by the responce I got afterwards. The picture encaptured is me speaking. I came home and got in bed. Went to the doctor Monday to get some medicine and came back home and got back in the bed. Today I am feeling a little better but nothing to sing about. I have an Alzheimer's meeting tomorrow. Me and the guys are going to lunch with Fannie. No spouses allowed. So I have to be up for that. Conference call on the 21st with National, then back to Baton Rouge on the 30th. Have a good day and may God bless you in a special way. Hug someone and let them know you care. Sue

Where to begin................

2008-09-21T20:12:00.003-05:00

Life is so good. Jesse is going back to work slowly but surely. Hopefully that means life is going to get back to some kind of normal. I love him and he takes such good care of me but I am looking forward to us not being joined at the hips. I am so use to going and doing things by myself and we were together for over 2 months 24/7. Anyway, things are being to get busy with Alzheimer's. I went to our face to face meeting in Chicago this past Friday. It did not start out so good but it got better. Chris my 19 year old who is in national guard and was active at the time came into my room after we had gone to bed and messed my clock up so he could get up on time at a later time than I had set for me to get up and get to Monroe to catch the plane. You guessed it, we missed the plane. I had me so messed up for a couple hours. Jesse, said I was not my friendly self at that point. Anyway we were lucky enough to get our flights changed and up in the air 3 hours later. All my sightseeing that I had figured out for 2 days was shot. We got to the Hard Rock Hotel about 6:30 pm and were to be downstairs at 7:30pm to meet some of the others for supper. We had a great time visiting with other ESAG members and their family. We went to the Alzheimer's Association office and had a wonderful time meeting and game planning. I have two projects or groups that I will be working on right now. We left Friday and flew on the biggest plane I have ever seen. I got to watch a movie all the way from Chicago to Dallas on my own screen monitor. Then we met my daughter in Dallas and spent the night. I got to see my grandsons Sat morning and played the 'why' game all the way to the airport. They are so cute. Then we made it to Monroe in time to go and get a birthday present for another grandson in Pineville and head for his party. Then since I was so close to my mom which is in a nursing we decided to go and check on her since I had not seen her since the hurricanes. She has a male friend and really did not act like she cared if we were there or not so we left. Came home, emailed a wonderful lady on our LA Alzheimer's Association that nominated me for the task force to make sure our Thurs. meeting was still on. Well, it's been moved to Tues. So I guess I will rest tomorrow and then head to Baton Rouge Tues morning for my first meeting there. It is going to be busy but I am going to enjoy every minute of it. It really makes me feel needed and that I have a purpose and can do something to help others with this disease. Well, wish me luck and I hope to get better at this blog. Oh, how could I forget how I celebrated World Alzheimer's Day, I made and gave everyone in my church a purple ribbon to wear today, (about 50) then we went to Fred's and I came the cashier's one to wear and share with people today. Let's get the word out there. Talk later. Hug someone and let them know you care.

I am so blessed

2008-08-07T19:24:00.002-05:00

Well, it has been awhile. Let's see if I can tell you what has happen since my last post. On the 16th of July we went to Shreveport (about 3 1/2 hours from my home) to get a heart cath for my husband. After sitting in the waiting room all day finally got a room around 4pm to do the heart cath the next morning because did not let the lab know we were there, even after asking several times if cath lab knew we were there. Then after cath the next day we were told he was in no shape to go home and maybe not get back safely so we had to stay so they could observe him and take him off Plavix so he could have triple bypass. Well, triple bypass happened on the July 23 with great success. In the meantime I had not received my packet from National and miss the 1st conference call while sitting in the hospital. But there will be another one this month and I will be able to make it Lord willing. Stayed another week in Shreveport after the surgery. Mine you we went prepared for a night stay and spent 2 weeks. I had great people to come to my rescue. Eating all your meals in the cafeteria gets very expensive. Lord only knows how much we spent just on food. No commentary meals there. Anyway go home and we wanted to see our great granddaughter that we had not seen since her birthday on the 5th of July. So we kept her for 4 days. Took my packet to the Alz. Ass in Monroe and filled it out and faxed it. Got a call from Ruth wanting to know if I would consider being on the Alz task force for La and was and am excited. It is a great honor to be nominated by the Alz Ass and be appointed by the Governor. As Lynn my daughter said some good things have really come out of me having Alz. I just want to make sure if there is not a cure when I kids get older they will have it easier than the ones before them. Thank you Als. Ass., thank you Ruth. Mainly thank the Lord for allowing me to be able to do this. Sue

Waiting

2008-07-08T13:02:00.003-05:00

Well, I got my letter from National, now I am waiting for my packet. Diane a friend of mine with dementia called to say she did not get accepted. Diane I was looking forward to you teaching me how to knit socks. lol Really I was looking forward to seeing more of you and getting to know you better. Sorry. Thanks Kris for your kind words. I hope life has not got to crazy yet. Good luck with Allen's wedding. We are going to my daughters in Frisco, Texas Thursday for a few days. Its my grandson's birthday (7-13). Looking so forward to it.

Look out world here I come

2008-07-04T09:33:00.003-05:00

Hey, okay maybe not the world but where ever I am needed. I have been chosen to be on the National Alzheimer's Advisory Board. I am excited. Stacy our director for my area in Louisiana called me with the news Wednesday. I am patiently waiting for my packet from National. Nay, I do not know what the word patient means. lol I am waiting, checking the mail everyday. I hope the first meet and greet if there is a such thing is after Jesse's heart cath on 7/21/2008. With my luck that will be the day I am suppose to be somewhere. It's been a quite summer so far but I am sure it will not be so later. I am excited about alot of things dealing with National. Get to meet new people, getting to educate others, just the whole thing about being chosen is an honor. So say a little prayer for me and my family. Pray for Jesse. He understands me better than anyone and he needs to stay well. I told him I would beat him back to life if he died on me. lol. While cleaning off my computer table I found this: Do not follow where the path may lead. Go, instead, where there is no path and leave a trail. That is what we as people with dementia of any kind are having to do. There is so much how there that people have no clue about what dementia is all about.

Quite

2008-06-13T16:28:00.002-05:00

It has been quite this week. Stayed close to the house. With the price of gas can't hardly afford to go anywhere anymore. It takes all your money for gas anymore. At least I have a good stash of yarn and thread to keep me busy. Had our support meeting Thursday. It was good. I enjoy talking and letting who ever is there talk and get things off their chest. Sunday is father's day and I have no clue what to buy daddy. He has been so good to my kids. People that have not know us our entire marriage can't believe he is their stepdad and not their real dad. But don't let my girls hear anyone say he is not their real dad they will tell you otherwise. I have really been lucky when I was introduced to Jesse. Guess I will go. Hug someone and let them know you care. Until next time. Sue

What a week

2008-06-07T14:57:00.005-05:00

Started out with my love and joy, Jessie, my 10 month old great grandchildren. I kept her til Tues. because her mother was admitted to hospital with the lost of the child she was carrying. Then Thurs. we headed for Alexandria for a Dementia Conference, put on by Alzheimer's Association. I was on a panel to discuss my story. That was fun and I love to let people know when they see me they are looking in the face of Alzheimer's. I am not this mean, agitated, violent person. I try to speak softly, think about my words before I speak. Do they always come out correct, no. Joyce Simand was our speaker and she was wonderful, this is her. Jesse and I went to supper afterwards getting us back home around 11pm. Then I got up took my bath and headed for Alexandria again Friday morning. The conference in itself was wonderful. I was interviewed by two television stations, KALB and KALX, that is me on the right. It's funny they ask all this information and from what I heard there was hardly any part of the interview on the news. Things like the bill we are trying to get passed. I started thinking this morning I bet they thought that is all the Association wanted interview for, it wasn't. I said so much more. Yes I did push the bill. I want to know when the time comes and I end up in the nursing home, I want to know they have been trained to take proper care of me. Well, anyway on the way home I had car trouble. Made me a little stressed, but I finally got home after several phone calls to Jesse. I was so tired but I forced myself to stay up because I knew if I went to bed I would not sleep all night. Jesse woke me with a cup of coffee at 7am. He left and back to bed I went and slept until he came back at 11:30am. That is what happens when I have to really think on my feet alot. I can handle it while its going on but crash when it is finished. My poor old brain says "please stop I need to be reintergized. Tomorrow I will be fine. All in all it was a great week. Have a good night. Hug someone and let them know you care. Sue

*******Can you get the idea I am going to have to work on this picture thing. First time I have attempted. Sure I will get better.LOL

wandering mind

2008-05-28T20:50:00.002-05:00

I was reading Leah at ouralzheimers.com and she was talking about her my wandering while she was doing something and she would sorta bounce here and there. That is me. As long as I can concentrate on what I am doing I can finish that project BUT if I get up to do something else then what I was doing is probably shot. A simple thing as getting up going to the bathroom can change the course of what I was doing and what I will be doing after the bathroom visit. I have sooooooooooooooo many projects I have started. I keep thinking I am going to get back to them and finish them. Some I do some are still there. Even with knitting and crocheting it takes me so long to finish a project because if I start thinking about something else while I am knitting or crocheting I have to go back count, read pattern, count again maybe several times before I can get back on track. Never really thought about it until I read her blog. Well this is my insight for today. Have a nice night. Hug someone and let them know you care.
Sue

Lazy week

2008-05-24T16:58:00.002-05:00

Went to our support group Thursday. It was great. Had a new guy there and we had a good time talking. When Fannie gets back from vacation we are suppose to make a few changes, hopefully for the better to draw more people with early onset/early stage into the group. There were 3 of us Thursday which is kinda good when we have someone new that needs to talk. I have stayed close to the house this week and crocheted and knitted. I have tried to finish some projects and start new ones. I want to sew me a new purple jacket and black dress before I go to Alexandria to talk on the 5th of June. Jesse and replanted my mosquito plants today. We hope to try them out to see if they do indeed keep the mosquitoes away. Guess I will talk later. Hug someone and let them know you care.
Sue

I am back

2008-05-19T21:02:00.002-05:00

Well, Washington was great. Met alot of folks I had either talked to or read their blog and met new folks that I hope to keep in contact with. It was nice to be among friends and not be judged. To be ourselves. When I am among people that I feel I have to be my best, I get really tired trying. It tires me physically and mentally. It was nice just to be me. Hopefully we accomplished alot on the hill. I tried to express the need not just for me but future generations. The town hall meeting was great. I wish we had something like that around here. Hopefully when Fannie gets back from vacation we will get the word out and grow in our area. People will come out. Well, guess I will close. Be sure to hug someone and let them know you love them. Sue

History in the making

2008-05-09T06:35:00.000-05:00

I am so glad that I could be a part of history in the making here in Louisiana. I testified before the Senate Health and Welfare board Wed. to attempt to get a bill passed to trained people working the dementia patients. It was not opposed so it is headed for the full Senate. Ruth said I may have to go back and go before the House and testify next according if we meet opposition. This is a big step for Louisiana. My stop Washington DC. I leave Sunday around lunch. Tomorrow is the crawfish boil. What a busy week, I will probably crash when I get back next week. I have tried to rest yesterday and today to prepare myself for the next week. Bye for now. Hug someone and let them know you care.
Sue

Hot date

2008-05-04T15:51:00.002-05:00

Jesse and I went on a romantic date Friday night. It was great. We went to supper then took in a really funny movie. I am getting ready for my adventure in Baton Rouge next week then on to Washington DC next week end. This is going ot be a very crazy week. Crawfish boil next week end at Bill's. I have been crocheting, knitting and trying to sew some coffee cup cozies. My sewing machine has to go to the shop. Well Jesse wants to sit on the front porch so I will talk later. Hug someone and let them know you care.
Sue

Life little exciting surprises

2008-04-30T20:01:00.002-05:00

I said when I started this journey I wanted to help educate people. I hope along the way I have touched lives. But as life goes on it seems I am being put in more positions to help more people understand what it is like to have EOAD. I was asked yesterday about going to Baton Rouge next week and testify before the legislation on the need for dementia training in nursing homes, home health and other health care, cannot think of the word. People who give hands on care of Dementia patients. Being from a geriactic background I do know the need. It is sad. I only wish I knew then what I know now. I probably wouldn't had a job long though because I would have been going against some of the things we are taught. Get them out of bed, put them with other residents, correct them when they are wrong, make them put on the clothes you think they should wear, the list could go on. No one bother to wonder if maybe they got tired easier than other residents. Maybe the other residents were making more noise that the dementia resident could handle. Maybe what they were thinking and saying they really felt was right in their minds. Maybe they did not like the clothes put out for them they wanted to wear some other clothes that didn't even match. Some decisions and agitation that occured now I look back and wonder would the world have come to an end with the resident being able to make more decisions. I don't think we were bad and mean to residents but we wanted to make sure they looked good as defined by the family when they came to visit. "Moma looks so good, she would just put on anything when she was at home." Did it hurt anyone is my question? Okay enough on my soap box. Have a good night and hug someone and let them know you care.
Sue

I'm back

2008-04-27T20:15:00.002-05:00

It has been so long since I have been here. I have spent the last couple of weeks getting use to the idea of everyone moving forward with their life and me and daddy being by ourselves without worrying about anyone since we married almost 29 years ago. Yes, my house is empty and I am truly enjoying it. I have been cleaning a little at a time because if I try to think of everything I want to do it overwhelms me and I do nothing. So I decided to take one room at a time. I am putting everything back in the kitchen cabinets where "I" had them and my son moved them. Bought new drapes for the front room. So between my knitting, crocheting, loom knitting, sewing and cleaning house I keep pretty busy. I stay at home more and try to not drive as much. Yes, I still feel comfortable driving and I am doing fine at it, I am just trying to stack off so when the time comes I will have adjusted on my own. I am going to Washington D.C. May 11 for the Alzheimer's Public Forum. I am honored to be asked to make the trip. I am so excited and looking forward to meeting so many people that I read things they have written or I have spoken in the chatroom. This is going to be a great experince and I intend on enjoying every minute of it. I hope to start writing on my blog more. I do forget about it at times. I think about it sometimes but by time I get to the computer I have forgot about it and I go to other sites with other things on my mind. I wrote a little note and put it on my computer, I hope it helps to remind me. So good night, hug someone and let them know you care.\
Sue

Hello everyone, been awhile

2008-02-27T18:56:00.002-06:00

Well this has truly been a day from _______. The worse day I have had in forever. My 29 year old is still living with me and now has a new baby which is 4 days old. That is the good part. The bad, we had the worse blow up in 13 years. We had really been getting alone so good. I approached him about a situation that I felt he did not truly understand about me, my diabetes and alzheimer's and the diet I am suppose to be on. He has taken over the duty of buying groceries and cooking, when he is here. The groceries are not things I can really eat. Sweets and starches. I cannot remember what I buy once it is put away, out of sight out of mind (what is left)LOL! He pulled out things in my refrigerate freezer and started telling me I needed to bend down and look and see what I had in them and how the children were starving while food I put in the freezer was ruining and me not cooking it after I bought it. Well, to begin with everything in there was not things I could have and the things I could have had been pushed to the back, (we have a side by side). The vegetables he found were on the bottom shelf in the back. Then to try and explain I forgot I bought them, well, needless to say the whole thing went downhill very fast. Here it is 7:07pm, he is not here and supper has not been started. The kitchen is a mess because he felt he needed to pull out all the can goods also and they are still on the cabinet. He put them there so he can put them up. I really don't know how to get to him and get him to read material on how to handle situations better and how alzheimer's steals my memory in different areas. He told me last week I needed to quit using alzhiemer's so much when I would be approached about something I forgot. I thought he was picking but now I have come to believe he really thinks I am using is for an excuse and I really don't have the problems that come up. What to do? I ran off several things this afternoon that would really help him if he would just really read them and try to understand. Sorry my first day back in awhile was a downer. Hug someone today and let them know you care. Sue

Med # 3

2007-11-14T15:00:00.000-06:00

It like I turned a curve and started going rapidly downhill. My memory hasn't gotten so bad lately that my MD now has me on Aricept 5mg hs, Namenda 20mg hs and an Exelon patch every morning. Plus the B+ vitamin that is suppose to help with Alzheimer's. Other than that I am doing fine. Just can't afford to loss any more memory.

Winner

2007-11-04T06:23:00.000-06:00

I joined this support group, DailyStrength.org, hoping to find others with early onset alzheimer's. Seems I am always looking for someone to be my "online pen pal" if you may. Anyway, the owners put together a contest. You had to write in your journal and then they would read and judge the journals and determine 2 people with chosen charities for a $1,000 donation. Well it turns out they had so many that they ended up giving 4 $500.00 donations and I was one of the four for the Alzheimer's Association donation. Yea, I am so excited. This is my entry........

Friday, October 26, 2007
Hi, my name is Sue. I am 56 years old and I have vascular dementia and early onset alzheimer's. I was diagnosis in 2004. I don't go by stages but by what I can still do and accomplish. I have 5 children with my youngest one going to boot camp next Monday. I have so many grandchildren that I quit counting and 2 great grandchildren. The youngest great grandchild is the apple of my eye. I would like to see Doug donate to the Alzheimer's Association Research to find a cure or at least to stop or slow down Alzheimer's. Mainly not for me but for my kids and their kids. I have a very loving a devoted husband that thinks for me sometimes, finishes what I say or start when I can't or get sidetracked. He is so supportive, I could not be doing as good as I am without him. It makes me sad sometimes to know that he is going through his own nightmare with all this. I have always been the strong one in this marriage now he is having to take over that and many other roles. I have helped start a support group for people with early stage dementia in my area. People still don't want to come out and say they have Alzheimer's and dementia because of society's take on it. We are not losing our mind just our brain. Meaning we are not crazy you do not have to be afraid of us. Yes sometimes there is violence. See I was a nurse for 30+ years in nursing homes. I have worked with people and families who have had to deal with this. I have tried to make all the transitions easier for my family than some people I tended to. That's not to say they are going to have it any easier dealing with me forgetting who they are or what life has meant to us as a family. I try to live every day like it could be my last because no one knows for sure when that day will come. I say I try, yes I get discouraged and depressed at times. I really try hard not too though. It is called life, you have to take the good with the bad. I would love to communicate with anyone that has early dementia or alzheimer's. That is what brought me to this site to begin with. In search of people going through what I am going through, to encourage each other.

Hope you enjoyed it. May they find a cure or at least a way to stop Alzheimer's in its tracks.

Time

2007-10-26T15:18:00.000-05:00

It seems like just a couple days ago I wrote in my blog then I look and see it has been 10 days since I wrote in my blog. We had our memory walk last week and everyone said it was bigger and better than last year. We raised over $5,000.00. I found another web site www.ouralzheimers.com where I meet Leah. She has vascular dementia. In her journal she could have been speaking for me. It hit the nail on the head of where I am at right now with my life. My memory has not gotten better buy worse. It took me hours last night to remember my youngest daughters sons names and then I could not remember how to spend them. It was a little scary and a little sad both. Well, I will close for now. Hug someone and let them know you care. Sue

Depression

2007-10-16T16:11:00.000-05:00

Well, this last week has been the worse in a long time for me to have such depression. I cried most of Saturday night. My confusion and thinking process was the pits. My memory is getting is worse but when I am depressed or upset it bites bad. Jesse and I went to lunch after church Sunday and then to Wally World. It helped getting out of the house some. It seems I am staying to myself alot lately. The memory walk is this week-end, I am excited. Wish we could make up some brochures or something for people with early onset Alzheimer's or dementia to know there is a place to come and talk and be together. So much for today. Hug someone and let them know you care.
Sue

How time flies

2007-10-06T18:28:00.001-05:00

I did not realize it has been so long since I have been here. The baby is getting bigger, longer I should say. She gives me purpose in life. I sew and play with every chance I get. My house runneth over right now with my kids and grandkids. I have been staying to myself alot lately. I guess they think I am unsociable but I just can handle it all it I keep my distance. This morning was super bad with the confusion and losing money and keys at garage sales. But after a long nap I am good as ever. Made my granddaughter a pair of shoes. My son gets a little jealous when I make my great granddaughter things and not his daughter. She is eight months old and has not been around me alot in her life and she cries when I try to hold her which in turn upsets and confuses me when I am trying to get her not to cry. Hunting season is coming up and Jesse and I have decided that we will take the camper and park at a state park not far from where he hunts so I can do my thing during the day and he can come there at night. It is going to be fun I am sure. We have started a support group for people with dementia. The group is small right now but I hope to see it grow. We are doing weekly meeting right now to get some subjects taught then we will see where we go from there. Our memory walk in Oct 20, 2007. We have our team ready to walk. Well I hope to get back here more often. Thanks for the comment I received. I am glad it helped. So far now hug someone and let them know you care.
Sue

Its been awhile

2007-07-27T16:29:00.000-05:00

Well, I did not realize how long it had been since I last got on here. Lets see I am sure I cannot reamember everything that has happened but the most important change in my life is my new great granddaughter, Jessalin Bailey, Jessie for short. She is the apple of grandma's eye. They say she is a little spoiled. But I don't believe them. She just loves her grandma. My anniversary is coming up next month. No big plans it seems. I go to the doctor Tues. we''ll see where that leads. I have spent the last 2 days at the Alzheimer's office rearraging and setting up there library to be more friendly free. I am proud of it if I do say so myself. Fannie our state social whatever is suppose to put an ad in the paper for a Alzheimers support meeting starting in Sept for PWD. My daughter has agreed to help with it. I am excited. Guess that is all I can remember. Take care hug someone and let them know you care.

Week-end

2007-07-02T12:32:00.000-05:00

We had a great time this week-end with our daughter, her kids and one of my other grand daughter and her daughter. We went to Caney Lake and camped. Sat we swam and cooked at the beach. Sat afternoon we fished, no luck as usual. Sun we went home and chilled after going to buy the material for Jesse to make a chicken/duck cage. All in all it was great. I am a little tired today but I will have to make it. Kayla has another doctor appointment tomorrow. She is hoping the doctor will put her in the hospital and deliver the baby. Her 2 year old went to spend a couple weeks with her daddy. Only thing about really getting tired is it brings on confusion. I am to host chat tonight. I hope I don't forget. Have a good day and hug someone and tell them you care.

Terrible Twos

2007-06-25T21:29:00.000-05:00

What they say about terrible twos can be true some days. The last few days has been some of them. So many questions, hollering, yelling, crying and especially WHINING. Man do I hate whining. Kids or growups. Hateeeeeeeeeeeeeee it. I love her dearly BUT I think I am at my limit. I would never hurt Kayla's feelings and I try to be strong but I can't take it like I once could. She is suppose to go spend a few days with her grandma, that will give me and her pregnant mother a break that we both can use. Till next time. Hug someone and let them know you care.

New great granddaughter

2007-06-20T21:12:00.000-05:00

Hey eveyone,
I know I have been few and far between with my post. I have been spending alot of time with my granddaughter. Today I have been sewing some things she wanted and they were cheaper for me to sew than buy. We only have a couple more weeks before a new little one will be with us. I have truly enjoyed having my grand daughter stay with us. She has been a big help and lots of company. Her daughter Paige has been with us this week. She says I am her new best friend. She wants to sit in my lap all the time. She is two and we all know about terrible twos. Today really has been the first day that was a challenge but she just wanted to ask a thousand and one questions and repeat everything at less 100 times. Its all good though. Making memories. Today I thought it would be great if we could choose what we wanted to remember and what we would like to forget. But it doesn't work like that. Good dream though. Well, I am tired. Its been a long day. Hug someone and let them know you care.

Life is about learning

2007-06-14T15:15:00.000-05:00

Why is it that we are not expected to learn new things, I for one and my totally brain dead yet. When I attack a new project and accomplish it sometimes people are surprised. Yes it takes longer and yes sometimes I don't learn it, buy for heaven's sake let me try and encourage to learn new things. That is what life is all about or that is what they say before you get diagnosed. Another thing that I have learned is a good thing about Alzheimer's I don't hold bad feelings the way I used to unless................. If something is not made a big deal out of it then I will usually forget it and go on. I pray their are things I will forget and things I will remember. Life is short , will you look back on today and think just maybe I could have handled something a little different and savored the moments I had.

Hey ya'll

2007-06-10T19:36:00.000-05:00

I know it has been a week. When I use to get on the computer I was at home all day by myself, now my grand daughter is living with me and I don't get on the computer as much or any most days. Besides I had a few days where I slept. Either because I stayed up all night or was tired, from what, nothing. Just tired. Today Jesse and I cleaned up and rearranged my little get a way room and I found the following article that was composed by people in the early stages of dementia. I am sure it probably came from one of the support meetings. Anyways here goes....

Please Talk With Me

Please take a little more time and have patience
Don't fuss or make a big deal about my memory
I may remember, please give me more time
Don't turn your back and ealk away- that really hurts
Talk slowly and don't rush me
I do not want pity
Don't always assume that it is due to Alzheimer's
Keeping busy makes me feel better
People with Alzheimer's are able to have really good days
I do not see Alzheimer's as the end of my life. Rather, it is the beginning of a new era in my life

I find people sometimes go over board one way or the other. Meaning they either don't see me as having any thing wrong or they think I am further gone than I am. Just accept me as I am. Have a good week and I hope to get back here sooner than this week. I have a busy week though so we will have to wait and see.

Acting like a kid again

2007-06-03T20:13:00.000-05:00

Boy it really was a lot of fun mud digging. For you that don't know what I am talking about, we took the 4 wheeler and went with some more couples and headed for the woods. Then we found the biggest and muddiest mud holes and had fun. Yes we were muddy. But who cared. For a few hours all we thought about was having fun. Being a kid again. Life is too short enjoy every minute, it may be your last.

Memorial Day Week End

2007-05-29T17:31:00.000-05:00

Well, I hope eveyone had a wonderful week end. Ours was pretty quiet. Saturday, Jesse cleaned the pool and Lynn and Dennis came down. Sunday we took Chris to south LA. so he could start his training for offshore. Monday our nephew bar-be-gued and I crocheted. My kind of week end slow and quiet. We haven't started our meetings yet and I haven't gotten the library going yet. Last week was a slow one and this week is almost half way gone. I really am getting content just sitting at the house more. Days of always having a full schedule is in the past. Have a blessed day.

Get up and go-------------GONE

2007-05-24T11:35:00.000-05:00

Hey everyone,
I am still here. Slower than normal but here. I have been so tired and sleepy lately. Taking naps and going to bed early. I haven't been in the chatroom because I am usually asleep or headed there. Today has been really bad I have not had the desire to do ANYTHING. I can't get motivated. Not much going on just lying around reading some. Have a good day.

New beginnings

2007-05-22T12:58:00.000-05:00

Chris has graduated and Jesse and I are alone for the first time since we married. We have always had a kid to finish raising. Yesterday I started going through the house and cleaning up one room at a time. I have asked my granddaughter to come and spend a couple of weeks to help me get orgainized then we are going shopping for her new baby due in a few weeks. This is going to be a new experience for me and Jesse but one we have looked forward to. My tidbits for today continues to be from Coach Broyles, on home safety:

Try to make their world simple
Use plain-colored placemats, tablecloths, bath towels and sheets
Block off stairs so they can't fall up or down them
Have all of you house locks keyed to the same key
Place safety latches up high and down low on doors leadin gto the outside
Have them wear an ID bracelet if they wander, and sign them up for the Alzheimer's Safe Return Program
Use locked cabinets for soaps, cleaners, poisons and medicines

I can understand all these being important. Designs on things make them too busy. I have seen people try to pick spots up off the tile on the floor. You just never know. Coach Broyles book is really a good guide that he developed with his wife. Have a good day. Remember to live today like it is your last, because it may be.

Weekend

2007-05-21T07:37:00.000-05:00

Well, we spent antoher weekend camping. I know we are going to het more organized one day. Fish are never biting when we go, what's up? Anyway we had a relaxing day chilling and enjoying the outdoors. Well, my tidbit for today is also from Coach Broyles, Communication:

Pay attentions to what they are trying to tell you
Keep what you are telling short and simple but not child-like
Use one-step commands when telling them what you want them to do. This will decrease their frustration level and make each activity a success for them
Don't tell them more than they need to know at one time
Be patient. Give them lots of time to answer your question
Is they lose the thought, ask the same question again
Give them lots of time to finish what they are trying to say
Don't argue with them. It is easier to agree with them and then do what you had planned anyway
Don't try to reason with them. You will just get angry and they won't know why. Change what you're talking about to something they like
Don't correct or fuss at them for getting something wrong. Does it really matter? It may only make them feel bad
Don't say "I just told you that." Just repeat the answer you have already given to them
Don't ask Them to "remember" things that happened in the past. Talk about what you remember happening and how they were a part of it
Don't say "You can't." Say "Do as much as you can and I will help you."
Don't demand things from them. Always sho them what you want them to do

Funny some of these things are things I have been trying to get the girls to understand. 'Don't correct.............................' Life is too short to sweat over the little stuff. Ya'll have a good day and I hope to get back on here more on a regular basis. I get to crocheting and forget about the computer, or I get on the computer and forget about crocheting. Take care and life today like its your last, because it may be.

Late-afternoon behavior

2007-05-15T19:10:00.000-05:00

Well, tonight I am a little excited. I went to the Alzheimers support meeting in Monroe today and Fannie our state social services director, which has her office in Monroe said she would put an ad in the paper and see if we couldn't start a support group for PWiD. Yeah! I really hope we have some good responses. The support was really depressing today and LOUD. It usually is more organized and not as loud and I feel I can input sometimes to help families understand, why moma or spouse "doesn't put everything in her cornbread she used to and it really taste bad now." I told them because sometimes I can't remember what is suppose to go in a dish that I have fixed for years. He understood then. Things like this come up and I can tell this is why I do this or that, not that everyone does it for that reason. Anyway for my tidbits today is still from Coach Frank Broyles book:

Fidgeting and acting nervous, becoming easily upset, and wanting to go "home" when she is already home are types of late-afternoon behavior. (As a nurse I was taught this is sundowners syndrome). Anyway...........

Give her a hug
Tell her where she is
Tell her she is safe
Tell her you are not leaving her
Change the topic
Turn on more lights
Close the blinds or curtains
Ask if she is hungry or if she will help you in the kitchen
Offer an easy activity like sorting spoons or forks or ask her to wipe off the table with you

These are a few very good suggestions from his book. You can also tell her okay, put her in the car and take her for a ride and back home. If her short term memory is already bad she will have forgotten about wanting to go home. Maybe a stop for ice cream or something would be nice. Have a nice night. I am heading for the chatroom to host tonight. I am really scared so I hope I say the right thing. If it is too stressful I won't do it any more. We will be. Good night.

I'm back...........

2007-05-13T16:52:00.000-05:00

Well, it has been a busy few days with the crawfish boil and Chris's Baccerlate service today. The boil went good. Ate lots of crawfish, yum. Chris is gone to Missy's for a week so it is just me and Jesse. It is going to be quite and I am going to like it. Quite is good. I have been reading the book by Coach Broyles. With it is a Pocket Reference of tips and strategies. I am going to be adding them to my blog as I think they are very important. Today's is: Refusing Care-

Keep a daily routine.
Don't ask "Do you want to... bathe, brush your teeth or get dressed?" unless "no" is an okay answer for you. Tell him/her it is time for the care activity.
Have all supplies ready before you start an activity.
Explain to him/her, in simple terms what you will be doing.
Make sure him/her refusal is not because they are afraid or do not understand what you are aking them to do.
If he/she begins to fight you, step away. Try again later.

As a retired geriatric nurse, I think these are some good tips. People are always wanting to know what to do if they refuse care. Also remember the absolute 10. You know sometimes you just have to ask yourself, is trying to get them to understand life threatening/alternating or not. If not then why upset yourself and them. If they say a wrong word or thing and it really doesn't make any difference let it go, don't correct them. If the get a date wrong as I have done with my kids birthday, unless it really matters in what you are talking about don't correct them. If it doesn't matter or going to make a difference then if I am not corrected probably I won't have to chance to feel bad because I got it wrong if I don't know I did it. Well that is my tidbit and opinion for today. Remember live everyday like it is your last, we are not promised tomorrow.

Some really good laughs

2007-05-09T21:31:00.000-05:00

I have been reading a blog by Kathy of NC whose father has Alzheimer's. She is so funny at the way she handles her dad. Go Kathy. Her site is www.knowitalz.com. She has to be saint to have such patience and understanding. In the chatroom tonight I was given the list of a few more books written by different ones in our chatroom. I am excited about buying them and reading them. I enjoy reading how other are dealing with Alzheimer's. I suggest to my girls to get books by patients and read what is going on with them to see what is or will be happening to me. I know they need caregivers manuels, but I think the books by people that actually have dementia can let people know what is like and how to help from their standpoint. I think Kathy could write a really good book though as a caregiver, with her attitude. Again, go Kathy, keep up the good work.

mom is harder on herself

2007-05-08T14:02:00.000-05:00

mom always thinks we are going to see her as less then the strong independant women she has always been. Mom we see you as we always have seen you, Yes we are aware you are having more and more problems with the alzheimers. We look beyond the desease to see our mom, our friend. You think we can't cope with the truth, you taught us to be strong women, now let us to be strong for you. I'm not saying it's not sad when we see how far the desease has progressed, but if you let us in we can deal with it as a family, it is when you push us away that we stand there helpless to do anything. We all deal with your desease in different ways, we all can help you though this mom, let us help in the way we deal. You are so stuborn some times you think you still have to do everything by yourself, you don't realize letting people help does not make you weak, it shows courage, and trust that you can lean on us. some times we don't know what to do because we always seem to get it wrong. so we stand back and wait for you to say o.k. now you can help. life doesn't need to be any harder then it already is, enjoy life, let us make momories we can carry with us in the years to come, momories we can pull up like a movie playing in our brain to show us that we let you know exactly how much we love you and we did every thing we could to make this journey just a little bit more easier for you to live with.
you and daddy have taken care of so many kids in your lives, now is the time to just enjoy each other.

Dealing

2007-05-08T13:39:00.000-05:00

I have to say that I am so excited that my mom has found this outlet for expression. I am glad momma has found some other people that she can share with, that can understand where she is coming from. We (I) don't always understand how to act or react. Maybe because I am the stubborn one that doesn't want to read about it (Alzheimers). I just keep saying that I will deal with it as it comes, why know ahead of time what we are going to deal with. I knew that momma was uncomfortable on Saturday when we went to painting classes. But she didn't need to be because to me it wasn't about how our pictures turned out, it was that I was there with my mom and daughter. It was a great experience and made for some good memories. I love you momma and am very proud of how you are trying to help others.

Coach Broyles

2007-05-08T10:56:00.000-05:00

Coach Frank Broyles, athletic director for Univ. of Ark. lost his wife of 59 years to Alzheimer's last Oct. He has written a book, Coach Broyles' Playbook for Alzheimer's Caregivers: A Practical Tips Guide. Also he has included a poem I would like to post:

Do not ask me to remember.
Don't try to make me understand.
Let me rest and know you're with me.
Kiss my cheek and hold my hand.

I'm confused beyond your concept.
I am sad and sick and lost.
All I know is that I need you,
To be with me at all cost.

Do not loss your patience with me.
Do not scold or curse or cry.
I can't help the way I'm acting.
I can't be different thought I try.

Just remember that I need you,
That the best of me is gone.
Please don't fail to stand beside me,
Love me 'til my life is done.

-Author Unknown

If we were loving people before the disease why do people think we turn into these monsters after the disease have taken over. It is not US. IT IS THE DISEASE. Be upset with the disease not us. We are all we can be. Thanks "K" and "Jeanne" for your commments.

Very good advice..............

2007-05-07T14:59:00.000-05:00

I went to a seminar and read a book by Jo Huey, Alzheimer's Disease: Help and Hope.
On the back cover are 10 absolute nevers.

Argue instead agree
Reason instead divert
Shame instead distract
Lecture instead reassure
Say remember instead reminisce
Say "I told you so" instead repeat-regroup
Say "You can't" instead do what they can
Command-Demand instead ask-model
Condescend instead encourage-praise
Force instead re-enforce

These are so true. I already get frustrated when I am confused are having problems with my thinking the last thing I need is someone to do any of the left handed things, it just makes things worse for me. As far as noise, it really makes me nervous and then gets me agitated. Some probably think I am trying to be a pain but it can really mess up my mind if things get busy or loud. I try to walk away when these things happen and stay to myself alot. It may get lonely at times but at least it is quiet. When several people are talking at the same time it confuses me because I can't follow any particular one talking, so I don't understand any of them. So if you see me shying away I am not trying to be unsocialable just trying to cope.

Week end

2007-05-07T09:32:00.000-05:00

What does the sign say? Gone Fishing. That was me Sat. I caught a blue catfish that Jesse said weighed about 2 or so pounds. Yeah! It was reeling it in. Then Sunday after church we went to find a place to put the camper. We found this place that will let you park it there for a dollar everyday it is not plugged up and only charge for days plugged. Sounds good. Now we are looking for a boat to take down there and we will be all set. It is suppose to be the 2nd best white perch fishing in the nation. We will see.

The thing about forgetting it I usually forget what I forgot. That is the case this week end. I realized I had forgot or got something mixed up and I was going to remember to address it in my blog, but I forgot what it was. I do remember that it upset me when I went to painting class with Lynn and Chelsea, that I kept dropping the paint brush on my painting and making a mess. It would just slip out of my hand. Some things like that somehow I remember but little, I guess they are little, I forget. That is the reason, I don't like to be reminded when I forget something because I probably forgot what I forgot so I don't remember that I knew in the first place. Me gave me a chihuahua yesterday because I wanted a small dog to keep in the house to keep me company when Jesse is gone. I guess that is sorta what went on with me this week end. Take care and live one day at a time.

First of month

2007-05-04T21:02:00.000-05:00

As usual for the 3rd of the month it has been very busy. I just realize today is the 4th. Oh well, yesterday and today both have been busy. That’s what I get for not looking at my calendar this morning. Which I probably did and forgot. Anyway, it has been busy running back and forth to Monroe which is about an hour drive from my house one way, both yesterday and today to tend to bills. I am finally rested up from my week end trip. Tomorrow I am going to a painting class with my middle daughter and granddaughter. Then Jesse, Chris and I are going fishing. Hoping they will be biting. But I sorta doubt it since it has rained for the last few days. A tornado hit near where I used to live in West Monroe last night Chris said. I haven’t heard of anyone hurt though. That is good. I have volunteered to help at the Alzheimer’s Association of Northeast Louisiana a few days a week in the library. They lady that was doing it moved to Mississippi to be close to her family. I thought it would be something for me to get out of the house and maybe learn more of behind the scenes of the association. I received a card from a nurse I worked with yearsssssssssssssssssss ago. She had read the article in the newspaper about me and EOAD. She said she was sorry. I know she meant well, but I want to tell her not to feel sorry for me. Pray for my family. I will be okay. It is them that I worry about. Oh well, guess I will close this for now. Hope you have a great week end.

Back home

2007-04-30T21:10:00.000-05:00

Well, we are back. I am very tired. I have slept most of the day, and my brain is tired. We didn't catch any fish but its not from the lack of tiring. They just weren't biting. The little bream loved my bait and ate it all, which was fun to try and catch them but they are so fast. It still was relaxing just sitting there feeding them. It was a learning experience that we will do a few things a little different next time and be a little more prepared. This is going to be a crazy month with Chris's graduation, crawfish boil the day before Mothers Day, going to see a Bonnie and Clyde re-enactment. Hope to go fishing on Red River in Colfax. We will see. I wish my family could/would read some of the blogs of other people that are at or have been at the same place I am now with my Alzheimers to realize I am having problems with some of the same things like noise and following directions, etc. Can't think of all the things I noticed that I was having problems with this week end. Moma/grandma just ain't what she use to be. I am tired so I am going to cut this short. Nite.
Sue

Well, we are almost ready to go

2007-04-27T13:05:00.001-05:00

Jesse, is suppose to be leaving work early so we can get set up before it gets too dark. I have been running around all morning trying to get the last minute things for the camper and us. I really need more help trying to organize and think things thru but Jesse thinks of me most of the time as the old Sue that does everything on her own without any help. That is so not true anymore, but I hate to depend on him so often. It is going to get bad enough later. The girls are going to have to come to my rescue more ofter and make sure everything is packed and ready. It takes too much out of me to try and think about all that stuff. Hopefuuly once the camper is set up it will be just be restocking with a running list. Lynn planned the meals and bought the groceries which took a big burden off me. I can't plan meals at home much less meals on an open fire. I did find a recipe for biscuit on a stick and instant potato soup that I am suppose to get made up, only have to add water at the camp site. Sounds easy enough. Thought I would make some hot cocoa mix for the kids that should be good. I know I should rest but there just isn't enough time and my mind is going off in so many directions. Ya'll have a great week-end as it will probably be Monday or Tuesday before I get back to my blog. God bless you and keep you safe.
Sue

What a morning...........

2007-04-25T15:03:00.000-05:00

I thought I could make a list and check it twice (ha! ha!) and go to town to buy what Jesse needed to work on the camper tonight. Wrong. It took me 2 hours with the list walking around in the store, lost as a goose. Going up and down it seemed like the same isle over and over. I would look at the signs telling me what was on the aisle, but I would still have to check it out because I could not figure out what I needed might be on that aisle. I hate going in stores that I am not use to. I like to know where things are or least where they are suppose to be. Guess that is why I don't go shopping that much anymore. My mind won't let me focus in on one thing unless I am in there for that one thing, otherwise I just go in circles not knowing what I want to look at. I have to have a purpose for being there and then I still get confused. Then I asked directions to the different items (sounds like a typical man, uh) and was given the wrong aisle 3 out of 5 of the items. So needless to say I walked around some more then left with what I did have. I think I interrupted the 2 womens conversation that was suppose to be directing me. I got most of the things but tired as heck when I left town to head home. Took an hour nap while Chris went into the library to fill out something on the internet. I feel better now, not as tired. This rainy day isn't helping much. Talked more today in the chatroom. Guess I am getting a little more comfortable. These people really sound like a bunch of nice folks, I am glad I finally got hooked up with people who understand what I am going through. Thanks, gang. Well, I got most everything I need, it will keep Jesse busy tonight anyway. I didn't sleep as good last night as I did the night before. I woke up a couple of times and remember dreaming even though I don't remember what I dreamed. Is sleeping problems something we all have to deal with with dementia? I will have to ask the next time I chat, if I remember. Guess I will close for now. Have a blessed day.

Sleep at last

2007-04-24T10:24:00.000-05:00

Yes, I finally got some sleep. I am so glad. I am still tired but I am sure it will take time for my body to catch up. I don't even remember dreaming last night, which is unusal. Sometimes when I wake up in the morning I wonder, "did I dream that, or did it really happen" I have trouble at times deciding, which can be scary according to the dream.

Reading Blogs

2007-04-23T21:05:00.000-05:00

I spent most of today reading different peoples blog with EOAD. I want to know everything I can about what to expect. Yea, I was a nurse and worked with patients with Alzheimers. But I did not see them until the end stage. I never met anyone young or in the early stage. I taught about it, but it just isn't the same. There are alot of brave people out there and alot of support. I have really enjoyed chatting with so many these last few days and everyone is so upbeat. I have to learn from these great people. I have my kids can learn from these great people and their stories they have to share. Thank you Lynn for leading me in this directions, it was God sent. I have learned so much information and so many different sites out there for people with Alz. I never knew there was so much. I think it great that people are standing up and speaking out while they can. I hope I can sleep better tonight. If not I think I am going to have to take that new medication my doctor put me on, no matter what the side effects are. I can't keep going like this with no sleep.

Another sleepless night in LA.

2007-04-23T05:39:00.000-05:00

Well, it was another long night. I went to sleep at 10 pm , was awake at 12:30am, 1:30am, 3:00am and finally got up at 5:00am. This always makes for a very long day. It felt like my feet were in an ant pile or something, they burned on the toes. It was very uncomfortable. I take Requip for restless leg syndrome but this was different. I will take a nap today it the urge hits me. I woke myself up a couple of times hollowing and cursing. See this is the thing, I don't curse. My kids go into shock if one slips. I used to tell family members that was upset because "moma or daddy never would have said that", that I was bottling up all my frustration and when I got old and in a nursing home I too was going to let loss. I had hoped this would make them laugh and not feel so bad about their parents. I knew that mom and dad were not themselves and it did not bother me. I hope when I get that point people are understanding of me. I know it can hurt love ones feelings to hear some of the things their parents/spouse say. There is really no way to prepare for this, it is human nature to be hurt when someone attacks you. Only now I realize that may be a reality and it scares me. I don't want to be one of those folks that makes other people sad or upset but my actions. I don't want to upset my family. I know I will have no control over it but it does not stop me from worrying about that being a big problem. Well I will close for now. This was on my mind and if I did not write it down while I was thinking of it I would forget it. Later.

Its been a very long day

2007-04-22T20:46:00.000-05:00

I finally got to bed about 2 am this morning and was up by 5:30 am. Not much sleep. Went to church and could have easily went to sleep. I have tried hard to stay awake and not take a nap so maybe I can sleep tonight. It has been a couple of weeks since I was up like this. I go good for a while and get to bed with little trouble then I will have nights that I have to fight to get some sleep. Jesse helped my son in law work on his car today so after church I spent the afternoon reading blogs of EOAD folks and knitting. I am making a lot of mistakes with my typing tonight so I guess I will close for now. May God Bless and keep you. Sue

daughter of sewin mom

2007-04-22T10:04:00.000-05:00

Hi, my name is Missy and my mom has early on-set alzeimers. To say how I feel about my mom having this disease would be a spider web of emotions. There are days that I can talk to moma and she is just that my mom, not alzheimers, because face it, some days she isn't the face of alzheimers, alzheimers is the face of my mom. For the children of alzheimers patients I sure you know what I am talking about. For those who don't, it's like this, some days I talk to my mom and it's like every other time I talked to her growing up, she is mom. Other days she is confused, more forgetful, and even at times child like in her emotions and actions. The days of her being my mom and I her daughter are getting fewer and fewer as time goes on, the roles are at times seeming to be reversed. We as her family are having to step up more and make decisions, she has always made. We have to ask her if she has taken her meds. when she has been the one to remind others. Moma has always been strong and very indpendent, now we watch her struggle to hold on to what indpendence she still has, while is slowly slips through her finger like the sand in an hour glass.
Moma gets mad sometimes because she doesn't like people telling her what to do, she doesn't understand that we are only trying to keep her safe. Her driving is an issue for me at times. I would feel much better if she wore her safe return necklace, but she says that if she gets in a wreck she would be in trouble for driving because she has alzheimers.
Moma worries about how we are dealing with her alzheimers and we worry about how she is dealing with her alzheimers. Does she hurt, but can't remember to tell us? Did she take her inslin, was she able to give herself a shot? Can my dad learn to do it for her? Did she eat today, did she sleep last night. What stage is she in now,how long before she needs constant help? When do we as her family step in and when do we back off.
So many questions, so many conflicting answers. Each of us have our on way of dealing with the fact that day by day we are losing a little more of our mom, each of us have different answers on how to approach each problem we face, and they don't always come together as one united solution.
Poor daddy, he doesn't want to be the bad guy, so he still lets moma make the decisions. He has never had to pay a bill, keep a check book, remind anyone to take their medication, so at times if things weren't so sad the would be comical in the since that daddy was to take over the bills but in truth the both have to remind the other to remember to pay this or that. Daddy says your mom will tell me when she can't drive anymore safely and only then will she stop driving. I hope for both of their sakes moma will stop driving before it becomes to dangerous for her to continue doing, because if something was to happen to moma while driving daddy would blame himself.
Moma personality has changed, she use to have this loud booming voice that demanded respect, now she is soft spoken and often quiet and withdrawn into herself. She forgets how to do things she has been doing for years and remembers how to do things she hasn't done in years.
I can't go to moma like I use to and talk about things that are bothering me are just for advice. She is not that person anymore it is too much pressure for her, because my problems becomes her problems then she loses sleep over them.
I had to learn to let things go when she hurts my feeling, and not take it personally, and at time I fail to let it run off my back and my felling get hurt. Then I have to remind myself that it is the alzheimers talking and not moma.
I research everything I can get my hands on about caring for alzheimers patients, my sisters chose to not know what is coming, then they don't have to deal with it. What they don't seem to realize is that sooner or later, more likely sooner they will come against a brick wall and have no choice but to deal with it.
God bless each of you on this journey you are having to endure. Remember when times get tough and you don't seem to be getting through to your loved one there is still one who can. God is still talking to them and he speaks a language they will always understand.

Its been a long day but a good day

2007-04-22T00:51:00.000-05:00

I spoke to another early onset Alzheimers patient in the chat room tonight. It was nice being able to talk to someone who truly understands and doesn't say yea I forget this or that too. Thanks Tracy for encouraging us on. It is human to forget things from time to time but for us its not that simple. I went to town this morning and ran some errands with Jesse then came home and decided to take a little nap that turned into 3 hours, so here I sit at 1 am in the morning unable to go to sleep. I had started me some socks but had to rip out all the stitches because they were too big. I had already ripped out stitches today because I had dropped one and it messed up about 4 rows. So I have decided to finish Jesse's hat with ear flaps for hunting season. I will probably be so tired and not be able to think straight tomorrow after being up so late tonight. Its like a vicious cycle. Its really been a quite day. Thank God for quite days.

Good Morning

2007-04-21T07:43:00.001-05:00

Sometimes you will see me come back after I have had time to read and think about what I said. This is one of those times. I am not upset because of me, that I have Alzheimers but I know what lies ahead for my kids and husband. I won't know after a period of time I have it but they will.

This is my first day at this online journal stuff

2007-04-20T20:44:00.000-05:00

I am setting up this site to help my kids and hopefully we can help others. I hope that eventually my kids will join in on their thoughts so others can see the whole picture of the patient with the family. I have some wonderful kids that are finding their own way to deal with their mother having Alzheimers in her 50's. There are more of us out there than we even realize. I am a RN that no longer works. I was dx. in the fall of 2003. I thought it was an after effect of bypass surgery and went to see my doctor. I was forgetting so much more. After several test I was told I had Early Onset Alzheimers. On good days I really thought he was wrong, on bad days I knew he wasn't. It took me three years to go and get another opinion from a well known specialist in our area. He confirmed that I had Vascular dementia and Alzheimers. Double whammy uh? Anyway he put me on a new regimen of medication that has helped alot. I have spent the last 30 plus years working with geriatric patients. I either worked nursing homes or home health. I love those little old folks. I felt they still had so much to offer life. I raised my girls in the nursing home enviroment where they also learned to appreciated the elderly. I used to pray that I would never get Alzheimers and end up as so many of my patients had. But we don't always understand why things happen, and here I am with Alzheimers. I've tried to prepare my family for what I know lies ahead. Tried to get all my legal matters in line. I try to go to Alzheimers support meetings in my area. They are geared toward the caregiver, but my input at times has enlighted some family members which makes me feel useful. I have always been a teacher at heart and in my field so being able to educate people about Alzheimers makes me feel good. I knit and crochet alot. Of course I rip out stitches alot too. I have to have it really quite and a really simple pattern, then I make mistakes. But that is okay I still go at it to keep my mind busy. I have tried to make all my children and grandchildren things to have once I no longer can let them know I love them. Things to cherish. I try to cherish all the little things in life. I don't quite look at life the way I use to. I try to be a little more understanding and not so quick to judge or give my opinion. I will leave that to God. I feel I have enough on my plate that other people can handle their problems without me trying to take them on. I stay to myself alot which up until recently drove me crazy. I hated being at home by myself all the time. Now I am getting where I sorta look forward to it. The quite times. I still drive but not as much. I grocery shop with the help of my husband. Money is a real challenge for me. Boy have I messed my checking account up. ALOT. My son and I had a deal. If he would graduate this year from high school I would try my best to keep my going as strong as ever. He has three weeks left. It has not been easy for either of us, but we are getting there. Hope you have a great day in the Lord.