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    May Alzheimer's Friends
    Byroney_WebMD_Staff posted:
    Greetings and welcome everyone!

    This thread is meant for talking about your day as a caregiver, friend, family member, or support person to an Alzheimer's patient. You can chat about anything you like--and vent if you need to!

    If you're new to this board, be sure to pop in on this thread and say "Hello." There is a great group of people on this board, and they know what you're going through.

    Each month I'll start a new thread so they don't get too long. This thread has befriending and supporting those with family with Alzheimer's since the fall of 2008!

    If you have a question or comment for me, put "Byroney" in the subject line and I'll do my best to answer.

    Best wishes and my admiration to each one of you.

    kan12 responded:
    Happy May Day all! Thanks for our May board Byroney and all the useful info! Glad to see you pop in Suezee! I can tell at times that is what is happening with MIL. She will usually tell me when she has "tried" then I usually know the mind/body is not connecting. Other times she will just give me another excuse and her actions is telling me she is lying, to which she acts differently also. I did liken it to a preschooler. I use to teach preschoolers and of course raising children ourselves, we all see the comparisons. The difference is with MIL she wants to be treated like a child...she loves it. She don't want adult responsibilities. So I have the opposite problem. I can tell with MIL, the way she answers or does things usually, not always because the lines are becoming blurred so to speak, but I can usually tell if it is her being lazy or the AD acting up. Keeping up with all that is a mind game in itself for me and is mentally exhausting and I know you all feel the same!

    No episodes here today except nature. My husband was here this morning and I got to sleep in , well briefly. I was awakened by my son going into my bathroom, which they have to go through my room to get to. He came out fussing he could smell it in my room. My room is at the opposite end of the house from theirs and MIL. She had wet everything, the urine smell was so strong...and to top it off she went into the bathroom and was doing her thing with the door open. She will not get up to go to the bathroom usless we go in and tell her to get up in the mornings. I keep a light on all night in the bathroom in case she has to go, but she won't. She just wets everything. This morning it was from her neck down to the legs.

    The bathroom door opens up to all their bedrooms and when they come out they can see into it. She didn't close the door (she won't in her room either if she changes) and the odor was the first thing that hit him when he opened the door-He was gagging. Of course we have been over and over for her to push the door to when she goes in because we have males in the house. She will if company is here but she won't if only we are here?

    I'm sorry but it is really disgusting and embarrassing to walk by and see her wiping or washing off with the door open! I can't have the potty chair in her room. If we put it there She will use it often but she will not walk out of her room. The dr. told us as long as she could go without to do so, she gets dependent on anything that keeps her from walking. It's an excuse not to walk. The therapists took it away cause she is capable of going properly.

    Also when people come to visit, they go to her room because she will not come out into the living room.As has been all her life, they must come to her. She came into the living room when her daughter and granddaughter were here and she wasn't in there 20 minutes and she had to go to her room and go to bed at 6pm. It exhausted her just sitting outside her room and visiting. Don't understand that one either! Maybe she was trying to avoid them. But she is not comfortable outside her hole in the wall! When the chair is in her room she uses it more, it's like her own little toy she wants to "use it" but it's hard to keep up with it. If she had to have it, it's different.

    Oh well, I guess we all know there is no easy fix to any of this. A lot of trial & error & putting up with things we can't change or if we can, it seems we exchange one problem for the other! I guess we all should make the Serenity Prayer our motto:

    "God grant me the serenity to accept the things I cannot change, the courage to change the things I can and the wisdom to know the difference!"

    Don't know about you all but I dont' have much serenity, courage is all that keeps me going, and my wisdom is growing-unfortunately in this case! God Bless and hope you all have a great day and all is calm!

    lattiee responded:
    Hi everyone, I'm new here I wrote the post anyone else in my position about my mom and me finding out by accident of her being (supposedly) diagnosed with alzheimers when my son accidentally knocked the folder over with her name on it .

    I was reading the april chat and saw that alzheimers people had trouble understanding what you say even with finger /hand motions. Then when you were doing that then she would do some gesture a child would do as in making it seems as if you are the 'dumb one'.

    My mom has that issue first I thought it was only me because of my speech disabilty from my cleft palate but then down the road she had trouble understanding many other people including my son and those people don't have a speech disabilty .

    Also, I thought she had a hearing impairment because she had to see people face to hear them if you were in her way she would ask you to not be in front of her when she was talking to someone.

    So my mom seems to have many of the signs and symptoms of alzheimers.

    If I'm not able to be able to get to go with her to a doctor so how can I truly find out if she has this and get the true help she needs ?
    MomMomof6 responded:
    Evening girls

    Kathy I live in New Jersey. We vacationed in Nags Head a few years ago, when we were still able to go away for a few days. My kids were still living home then so there was someone here to look after MIL. She was still able to do most things for herself then. They just made sure she got her meals & meds.

    I would set her meds up in her weekly box also & had a loose leaf binder to keep a log of her sugar readings. They sat at her place at the table. Had a pencil box for her insuling needles on the counter. She knew the routine when she came out for meals to go to the counter & get her testing supplies & her needle, do her test & write the result in her book, take her meds & eat. Well I think it was about 6 months ago she started messing up the routine. So now I do the testing, writing it in the book, putting her meds on the table next to her plate & so on. She still injects herself though. I know the day will come that I will have to do that also. Not looking forward to that. She doesn't even know what meds she's on at this point. She also doesn't know what day it is let alone what year. Another thing she doesn't remember is her son's birthday, but yet she knows her house address that she hasn't lived at for 3 years. I was wondering, thought that AD patients could remember early years but forgot recent events. She can't remember her husband at all. She remembers one of the 1st places she worked but not the last. She's confusing me by the things she does & doesn't remember.

    I thought today was going to be bad. She started out with throwing her nightgown in the trash after she went to the bathroom. Then couldn't figure out in what order to get sponge bathed. Came out to the kitchen & pulled the plunger out of her needle AGAIN! But the rest of the day she seemed ok, then again I can't really judge when she just sits in her room day after day not talking to anyone. I sometimes go in there & ask her some questions to see if it's safe to go to the store for a few minutes. She does seem to want to talk when she goes back in there after dinner. It's usually about the house of course & why she can't go home. Or sometimes she'll tell me these stories of things she thinks happens. I just listen, sometimes there funny. One day she told me she was at a casino playing blackjack & the slots. I asked her if she won anything, she said not really. She used to love going to the casinos. Used to take the bus to Atlantic City every Wednesday with the Senior Citizens group.And every Sunday with her Hubby & brother & sister in law before they died.

    The bathroom she uses is the same one visitors use here too. So I have to make sure that is clean after her. I tried making her clean up her own mess but she just makes it worse. Plus she can't see that well either.

    Ahhhh the Drs appts, ha the doctor will ask how she's doing, she goes you tell me. How is he supposed to know how she feels?! She was very mad at him for the longest time. Everytime we would take her there her BP would be slightly high. He goes what's going on? She tells him, You took my license away from me! (he didn't really, we did, he just took the blame). He asked her if she would ever forgive him so she says yes I will. Ever since then her BP has been good. So I don't know if that's the reason or if she just forgot about the driving.

    She hasn't been violent for some time. One time she did try to hit me with her cane when we were arguing about why she couldn't go home. This was when she 1st came here. I know I'm not supposed to argue with her but sometimes she just gets to me.

    Suezee. I can sympathize with you with the lose of you Mother. My Mom passed away this time of year also, even though it was eight years ago, I still miss her very much. So I know how difficult it is.

    Have a good night girls!
    MomMomof6 responded:
    I forgot about the mini strokes. She fell backwards down our steps one night, coming back home from her dr's appt no less. I thought she had a stroke then, her mouth looked funny & I asked her to move her hand. She would only move one, I said the other hand & she still only moved the one. She refused to go to the hospital but when we took her to the dr again he said she probably had a mini stroke & probably has had them before.

    The acting like a baby & not knowing what you're talking about is something else she does. She'll look at me with this frown on her face like I'm talking a different language. I have to repeat it over & over & louder because she can't hear either. We took her to an ear, nose & throat dr to see about a hearing aid and she refused to get one. She was mad because the Dr. talked to me about her options & not her, well she couldn't hear!!!! so that was the end of that.
    ladytrojans responded:
    Good Morning Ladies.....How is everyone? Hope all is going well. Thought I better check in and see how goes it. Had t-storms most of the early morning yesterday. The afternoon was ok, but at about 7pm they started again. I missed the first 18 laps of the Nationwide race. Every time it rains real hard, our dish goes out. Then I went to sleep, so don't know who won. Hope we don't have any tonight. The big boys race. Don't wont to miss any of that.

    Found out yesterday, that the money for the field trip probably wont be refunded. The man from Six Flags is sending tickets to be used later. I want my money back. A lot of the kids, the only way they were getting to go was on this trip. Mine included. Her friend is going to see if her mom will take her,my daughter and another friend later. That is the only way she'll go. I'm not about to turn her loose in Atlanta Georgia with a bunch of kids and no parents.

    Mom has been doing good. Not been having alot of trouble with her. Still sleeping good at night. Yesterday she wanted her shoes cause she was going home. Told her we couldn't go right then cause it was raining. She said ok and never mentioned it again. When we have alot of good days, it makes me nervous. I'm on edge waiting for the bomb to explode. I try to keep my guard up. Afraid if I let it down, that's when it will start.

    MomMomof6.....We have to speak loud to my mom. She's hard of hearing. If we took her for a hearing test, I don't know if she would understand what she was supposed to do. And besides, we can't afford the hearing aids. Need her eyes checked also, but again would she would understand. Sometimes I feel like I'm fighting a losing battle.

    Hope everyone has a blessed day with their loved ones. Take care. God Bless all of you!!

    ksdeebee responded:
    Happy May everyone! Yes, I'm still here ... hangin' in. It's been such a crazy-busy -- but FUN! -- few days I haven't even had a chance to sit down and check in with y'all.

    Welcome, "lattiee!" When I saw the new May 1 thread, I realized I'd been with this great group a month already. How time flies when we're havin' fun! These gals (and Byroney!) just welcome you with open arms and give us a chance to ask questions, get some great advice, see that we're not alone in our struggles ... and just blow off steam in a safe, non-judgemental place. So grab a cup of coffee and stay awhile!

    Mom's been really pretty good. Once she got over her last hissy, she's kind of rallied. Been taking her meds with only minimal fuss. (Holding my breath here ... like Jaye said, "waiting for the bomb to explode." )

    Lattiiee, I didn't see that you mentioned how old your mom is, or what other health problems (other than thyroid?) she might have ... also whether she is widowed or divorced, so that she lives alone. I ask because I wonder if it would work with her for you and her brother to invite her to, say, Sunday brunch. It would be best if maybe your brother's wife could babysit Brendan, so it's just the three of you ... maybe it could be a special Mother's Day treat. Then, when you're all happy and enjoying each other, bring up that you and your brother (you'll have to get him "in" on it) want to be sure to be able to help her "when" she starts to need it, and suggest that maybe you (just you, not bro.) could go along with her to her next doctor's appt. so that if anything ever did happen, you'd know what to do. (You might either call or write the doc a note beforehand to let him know what your aim is, even tho' they may not be able to tell you anything.)

    If that doesn't work, you may have to get plumb devious. Give it a month or so, then tell her you're thinking about changing doctors and you know she likes hers, and could you go with her sometime to get an idea whether you'd like him/her for yourself.

    Obviously, you have GOT to get clued in to her healthcare someway or other. If worse came to worst, you could get yourself appointed her guardian ad litum ... but that's a last-ditch, long-term solution that hopefully you won't ever need. Lawyers and courts and stuff, oh my! Not to mention the very real chance of some hard, hard feelings for awhile. I wish you luck. Fortuntely, mine was easy in that regard ... her hearing is so bad, she sort of asked me to start coming with her (since I had to drive her anyway) to help her know what-all he was saying. I had been doing that for a few years before the AD diagnosis.

    I can share some more of my experiences with Mom with you another time that were very similar to what it sounds like you're going through with your mom.

    Jaye, hope you're getting to see the race today? I haven't paid a lick of attention to it. BTW: Did you by any chance see Carl Edwards on the Ellen show the other day, or on Larry King? He's a cutie ... cool as a cucumber, that one! Did anyone see the Derby? What a horse race!

    Love to all. If I can't get to you tomorrow, have a wonderful, peaceful weekend! {{{{HUGS to each and every one of you!}}}}
    mjs445 responded:
    Hi all, just a short note to let you know hubby is back!! He hasn't been in a bad mood for 3 days and I see some of the old him again. I sure wish this roller coaster would stop but we know that's not possible. Hugs to all and have a wonderful and blessed Sunday.
    ladytrojans responded:
    Good Morning Ladies......Got up too early this morning. Mom wanted to get up but told her it wasn't time. Like to be up and enjoy about 2 cups of coffee and some me time, before I get the day started with her. Yesterday don't know what was wrong. She wet and went thru 4 pairs of pullups. That's not like her. Told her she had to let me know that she needed to go to the bathroom. We can't go thru 4 pair a day. Don't have the money to buy them like that. She knew she was wet, but still didn't say anything. Knew the good days would soon be coming to an end. I've had worse days, but I just don't understand what went wrong yesterday.

    Dani.....Missed a little bit of the race. Had some bad weather in the area. The local channels are from Birmingham, AL. When there is a tornado warning in the viewing area, they interrupt regular programming until the weather is over. They had a big box on the screen for the weather and a little box up in the right corner for the race. Picture but no sound. Listened to it on the computer. Boy that was a trip. The tv and computer were way off. The weather improved at 9pm and got to finish watching it. You are so right.....Carl Edwards is a Cutie. I saw the clip of him on the Ellen show. Thought they were cute riding the cooler together. He could do a toothpaste commercial. His teeth and smile are gorgeous.

    Hope everyone has had a good weekend so far. If the rain would go away, mine would be better. Might have storms again today. Hugs to all and their loved ones. Hope everyone has a blessed Sunday. Take care.

    kinikia1948 responded:
    Good morning girls......Hope everything is well with you all. Mom has been good the last few days. Yesterday she was in very good spirits. I can't help but wonder how long this will last but I sure am enjoying it while it's here. The weather cleared up yesterday and today is supposed to be nice. Sun is shining this morning. Haven't seen the sun in a while so it's really nice but temperature is still cool. Funny how the weather can effect your mood. Guess that's why mom has been good. I hope you all have a good day.......Cindy
    kan12 responded:
    Hi all. Hope everyone is having a good Sunday. Marla, I'm glad your hubby is back! A little peacefulness is a great treat that so many take for granted, isn't it? I was worried about you and him also!

    Jaye, don't know what it is either. My MIL has been soaking herself this past week. She said the pull ups weren't holding her. Of course it has nothing to do with the fact she will not go when she "needs" to go!! She doesn't soak herself thru her clothes during the day, however she does stay wet until she has to go which is still usually mealtime. She has times set in her head that she will go (an all in one trip thing-no extra effort for her)and no matter how often we tell her to go more often, she won't go. I can't and never will get it through to her that she needs to go the bathroom as if she is wearing underware! She insist on sitting there until they are wet yet she tells me she knows when she has to go but just don't. Maybe she can't make herself go!?

    However, at night, she will not get up to use the bathroom at all. I'm thankful she is not wandering or falling during the night but getting up to soak sheets and clothes every morning is awful. The smell is so bad it goes through my house. It doesn't seem to bother her at all. Doesn't make her want to go more often.

    My SIL brought her some pull-ups that a friend gets who works at a nursing home. They were bags opened, some too big, cheaper & she gave those to her for "Easter". I'm going to be ugly here, but that's all she brought her. They did help but She doesn't do anything for her or buy anything for her upkeep or otherwise. I guess I should be thankful & I am, but this is her mother and all she gets is leftovers-doesn't even give of herself! Oh well, enough of that.

    So I guess I need to go buy a better brand & let her wear the cheap ones during the day. It has been awful. My kids don't want to be near her eating. I know it sounds bad & my kids are very patient & loving to her but everyone has their limits. Now we insist she goes before she eats want to or not. I don't know what else to do. She baths one way or the other every day. She will not move unless we tell her to. Like I said, she sat at home several years ago and did the same thing. Nothng has changed except it's worse!

    We had another doggy issue. Our Husky, she is 12 yrs. old, woke up walking wobbly, sick and trying to walk in circles, getting weak and could hardly stand. Hubby and son took her to the vet. Appears she possibly had a stroke. They didn't think it was poisoning. She's an inside dog and stays in a fenced yard when she goes out. However she got into the trash the night before? They gave her 5 shots, antibiotics, steroids and pills for a week. She's some better today but a little shakey there for awhile. She's like a human, will "talk" to you, ask for treats, has beautiful blue eyes. 100% husky! My kids were so upset so I hate to think of how things will be when she does go! Oh well, day by day! We are all here for a reason & season!

    To the rest of you ladies, sounds like things are going pretty good. I hope it stays that way awhile. Looks like we are in for some unsettled weather for the next few days. We are getting a little dry and everyone is still shellshocked from the drought last year. Especially our well going dry. So I don't complain about the rain. Good for hubby's garden.

    Oh yes! I do want to comment on the HBO special about caregiving &Alzheimers. I just disregarded it because I don't subscribe to HBO, but I see it is going to be offered free for those shows. We have satellite so you all might want to check to see if you can get it also. The dates are May 10, 11, 12. Looks very informative-5 different specials on those days! Thanks Dani for bringing to our attention. I have to set my DVR to record them.

    I wish you all a good evening and week ahead! I hope it's peaceful! Kathy
    ksdeebee responded:
    Such a quiet Sunday. Mom's been sick. I think she must need to go back on her Nexium, so will call the doc in the morning. I finally got her to eat a little applesauce so she doesn't get too dehydrated. Been keeping a close eye on her.

    Kathy, thanks for the heads up about HBO offering the Alzheimer's series free. I was checking the HBO website, and they have a newsletter related to the series that you can sign up for:

    Also for Kathy: I get the super-duper, ultra-absorbency pads and Mom uses those WITH her pull-ups. Still end up with a stinky bathroom, but she doesn't wet through it. (BTW: I'm going to buy one of those diaper disposal gizmos in the morning ... I'll let y'all know how it works.)

    Marla, I tried to send you an e mail, but the delivery system didn't like the address. Would you post it again, so I can be sure I have it right? Thanks!

    A good night and blessings to all!
    mjs445 responded:
    HI GIRLS, its been a good day. Can,t believe the change, but we know how that goes; here today gone tomorrow. I'm thankful for the good days an will take all of them I can get. Seems like even the weather is cooperating.(sunny and in the 70's) I was on the HBO The ALZHEIMERS PROJECT on the Internet and it sure has a lot of information, good source, you were right. It should be a really good series as it covers all aspects of the disease. Kathy I was thinking how your MIL stays in her room and I remember my mom when she lived with us would spend a lot of time in her room. When I moved her in I brought a lot of her things for the room and I think she felt safe where her things were, just a thought. Try this for my e-mail [email protected] it should be the one I hope, I'm not real computer smart, but at my age (64 don't tell) I'm a little slow on learning. But have four grandaughters to teach me. Two in college and two still home, they are a lot of company and are good with grandpa. Well I rattled on long enough so have a good Monday and may God Bless you all. Jaye glad your moms arm is better. Now thats its nice out we can take them for some long calming car rides Marla
    ladytrojans responded:
    Good Monday Morning Ladies......Hope all is well. Had a good weekend with mom. But the weather was really terrible. We've had 3 days of t-storms and tornado warnings. This is your typical Alabama spring time weather. There's a chance of rain all week. The grass is going to be over my head if it doesn't quit raining. My hubby mowed the ditch banks for me yesterday, before the storms came. Know you shouldn't mow on Sunday, but that was the only time he had to do it. I can't mow the ditch banks. It hurts my back trying to push the mower. Marla.....I'll try this other e-mail address. If it works, I'll send you some cute and funny ones. Well ladies, got to go. Don't feel well. Ate a piece of cake this morning and it's not setting to good. After my gastric by-pass surgery, sweets don't like me. Knew not to eat it, but the temptation was to great. Take care and have a good day......Jaye
    suezee52 responded:
    Good early morning Everyone,

    We've been having some nasty spring weather out here in Oregon lately. There was even a funnel cloud spotted this weekend just south of us!!!

    I'm getting excited! My daughter will be coming home from Oklahoma for a visit in a week! I can hardly wait. I know she's excited too, but she has finals this week so she has to concentrate on those.

    My back has been bothering me alot lately so that's why I'm still up at 1am writing you all. It's hard to get comfy so I stay up until I can barely keep my eyes open and then I can sleep for a few hours until I have to go to work. Anyhow, it's been a problem for awhile now.

    So I guess Sunday was the anniversary of Mom's death. I've been kinda down for the last week now. And next weekend is Mothers Day, and the following weekend was Mom's birthday! I'll be glad to get into June! May brings alot of memories. But some of them are good ones so I try to concentrate on those.

    It sounds like a few of you (Cindy & Kathy) are having urinary problems. One of the main things that Mom's doc told me was to watch for UTI's (urinary tract infections) as it is so common for elderly to get those, especially when they wear adult diapers. If they run fevers for no apparent reason, have their docs check for UTIs.

    Hope all is well with the rest of you. Marla, I hope your hubby stays with you a bit longer. It's gotta be tough when your DH has AD. Darlene, I hope everything is going well with you.

    If I am missing anyone, chalk it up to me finally getting sleepy enuf to really go to sleep now.

    Talk with you all soon.


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