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June Alzheimer Friends 2
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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 on the first and fifteenth, 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.

Byroney
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kinikia1948 responded:
Good morning everyone.....So far so good with mom. Have to make mom breakfast so I will cut this short and I hope everyone is doing ok and that you all have a good day......Cindy
 
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ladytrojans responded:
Hi everyone.....Hope all is having a good day. Mine sucks to no end. Thought it was going to be a good day, but it has went SOUTH!!! Think about having a good dry. It wont accomplish anything, but give you a headache and make your eyes red and nose run. Could pull my hair out, but that would hurt. So what to do????? Right now, I feel like I can't take this anymore. Well, Friends, got to go. Need to go outside and pull myself together. Hope ya'll have a good day with your loved ones. Take care and God Bless. ......Jaye
 
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kan12 responded:
Oh Jaye! We all know so much how you feel. Although all our situations are different, yet they are so much a like. A good cry never hurt anyone. Can't keep everything inside 'cause that is not good either...leads to headaches, more stress and other health problems like heart disease. I know we all are at risk but we can't let this beat us! There is life, another life, for us one day. I keep telling myself that. Not to sound mean and I know I'm caring for my MIL, you have your mother, but still the affects on us and our families are the same and add in money problems, jobs, kids, etc....its hard. Lesser people would have already gave up!

I've always heard people tell my parents when they were caring for my handicapped brother for 21 years and their lives were on hold...yet they never regained it because of diseases of their own (my father held everything in) and the stress lead to there early deaths....but people always said God chose special people to have such special children. Not everyone can do it.

I try to tell myself that. Not everyone can do what me and my family are doing and what you and your families are doing. He chose us for a reason....although sometimes I feel like I am failing Him and he picked the wrong person. I also think of how my life would be if I had only stood up and said "no"....we can't handle this when this all began. But it is what it is and we are in it as long as we can humanly handle it. If God chose us, then He has plans for us and a reward at the end of the journey, if not before. Keep your eye on the prize......it's not the rewards on earth that should drive us....although we feel jipped because we miss so much......and it's hard for us to tell ourselves that....I know! I realllllly know! I have to talk myself out of slumppers all the time because no body else knows except the ones who are in it all the time. NO one can relate!

Have your good cry! Kick, scream! You deserve to let it out! And that nephew of yours.....you might just have to come clean, honest and tell him the truth. You think it's awful he takes advantage of your generosity using your internet for hours at a time and don't even have the decency to speak to your mother! If the internet is all he wants then you are sorry, you can't help him anymore! You are used enough!!!! Who can blame you?? And if his father (your brother??) doesn't help out any now, then what do you have to use? You are already doing your part and his part and keeping his son in internet service. As long as you supply it, they won't.

OH well just thought I'd add in that cause I think it really bothers you as it should. Hang in there, we are all in this together. By the way, MIL is about the same. I find her getting weaker in the evenings and wanting to go to bed earlier and earlier. She sleeps more than she is up and says she is tired all the time, yet the only activity she does is walk to the bathroom and dining room and watch TV/sitting in the chair. At this rate and her giving up.....although she has pretty good health considering, it's taking a toll on her body by not moving and in her mind, she don't want to do anything. I don't know if she will be here next year at this time unless something changes.

Well our rain of terror is still continuing. My car is still in the shop at least a few more weeks till we get the $$ to fix it. Had the A/c to fix this month.....and now my DH's truck is acting up bad. It keeps pouring and we are still looking for the umbrella! I'm living on a lot of faith right now---with everyone and everything! Unemployment and faith!!! Can't beat it! LOL!

I hope the rest of you are doing ok, at least not worse. It seems good days are less than the bad.

One day at a time ladies, one day at a time. We have no idea what tomorrow will bring. Heck we have no idea what the next couple of hours will bring!!!

Have a good rest of the day and night!

Kathy
 
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MomMomof6 responded:
Hi Girls...hope you all had a good day. Jaye, did you have that good cry? Are you feeling better? Hope all you girls are ok.

MIL had a dr. appt. with her cardiologist today. Nothing much has changed with her heart since her last appointment. He is however going to set up rehab for her since she isn't getting around very much. Don't know how much good it will do, the last time she had rehab she stopped doing everything when they left. So we'll see how it goes this time.

Have a great day tomorrow girls!!! Take care of yourselves!

So glad I have you so that I know I'm not alone in this.

Good night all!

Darlene
 
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kan12 responded:
I feel your pain Darlene! MIL does the same thing! She is taking therapy right now and I keep telling the therapist she can't remember from one time to the next and she will have to remind her of everything. What does she do? She wrote a check list for her to check off when she exercises and walks and gave it to her....AFTER I told her she doesn't remember, she can't see well, she has to be told when to do it and she will check her trips to the bathroom. It's so temporarily, it's more of a headache than what it is worth.

MIL had gone through the therapy at home and rehab center 6 times now...and like you said, when they leave, she stops. She would do it for them and not for us and when she did, she would act like she couldn't. Wouldn't do that for the therapist. However, this time she acts like she is getting weaker instead of stronger and it's only been 2 visits. There comes a point I think nature starts taking over an no amount of therapy will help when they are giving up.

Jaye, I hope you are feeling better. Marla, how's the hubby and mom, Dani.....Suezee the rest of you....how are you.

Going to turn in.....and start the process all over again and see what new challenge tomorrow brings.

Kathy
 
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kinikia1948 responded:
Good afternoon everyone......Kathy truer words were never spoken. You did such a good job talking about it in your post. We all may have different circumstances but the feelings are all the same. The regret of missing so many family doings, the feeling of putting your life on hold, the feeling of being a prisoner in your own home with no help, the feeling of being angry because of all of this and at the same time feeling selfish because you love your loved one and want to make sure they are taken care of even if it's only you to do it......Jaye.....I hope your feeling better today and had your good cry. You really need to tell your nephew something before you explode.... Mom has been doing ok and I hope she stays that way so we can go my nephews birthday party on Saturday....but as we all know you just take it one day or hour at a time...Everyone have a good day....Cindy
 
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suezee52 responded:
Good afternoon my friends, I've been busy, as usual, but wanted to give you an update on the last few days.

First off, I want to thank those of you who did an anti-rain dance for me. It worked up until about 10pm. But that was fine cuz I was hoping everyone would leave by 8pm. The die-hards didn't but that was ok too. We had tons of food and drink and even a water fight after it rained! I couldn't believe my 60 yr old husband was participating! He did get the worst of it too. But since he was the birthday boy, it was ok and he washes up too. lol We had oodles of hamburgers and hot dogs left over, so guess what we've been eating for a few days???? I'm ready for a nice steak dinner now! Anyhow, the BBQ was a sucess and Hubby was pleased. My daughter was there too.

We still haven't heard anything more about my daughter getting accepted into Clark College yet. We keep checking the mail but the letter hasn't shown up yet. She's still #2 on the waiting list for the other college out here, as far as we know. Anyhow, if neither one of these colleges work out, she's already accepted to NEO in Oklahoma.

My son still hasn't got his divorce papers from his attny. The waiting is awful. My son got into it with his boys this weekend. The older one was totally disrespectful and even took a swing at my son! That did not go down well. The worst part about it is that my grandson told my daughter that his dad restrained him for no reason. He neglected to tell her that he tried to hit his dad. I realize kids going thru their parent's divorces are prone to act out and play one parent against the other, but I'm appalled at the disrespect that boy has for everyone! I had told him to get off the computer 3 times on Saturday. He was suppose to be helping us clean up. Everytime I checked on him, he was back on-line. His dad also told him to get off 3 times. So 6 times he was asked to get off the computer and ignored it all! No respect. So I told him he wasn't going to get on it at all and he says he doesn't want to come back over to my house! It leads me to believe that darn computer is the only reason he wants to be at our house. Well, I told my son that I felt it was best if he didn't have him over here for awhile. (sigh) His bad behavior has consequences and I really believe his mom may have a hand in this behavior too. At one point she told both the boys that they didn't have to mind anyone at my house! I had hoped we straightened that out. Guess not.

My daughter and I went up to the hospital to see my SIL yesterday. Not Good! Not good at all! She's not very coherent and is in and out of it. In fact, in the 2 hrs we were there, she focused on me once for about a minute. She's in pain now. She has cancer in her brain and her daughters want to find out where it mestastisized from. She hasn't eaten in almost 2 weeks and has been aspirating fluids/saliva. The calcifilaxis is back and eating up her good foot. They already had to amputate her big toe. Things are very bad for her. When I learn more, I'll share with you all. It's heartbreaking.

Take care and hang in there.

Suezee
 
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MomMomof6 responded:
Hi Everyone.....yeah I hear ya. My MIL would see the checklist and wouldn't know what it was or what to do with it. She has had PT twice before both here and in the nursing home. They came out twice a week and I would help her with the exercises the rest of the time. Of course she wouldn't remember what she was supposed to do either. I'm with you Kathy, what good does it do when my MIL doesn't want to get up and do anything anyway? She won't even take a walk when I ask her to do it.

Suezee it sounds like you had a lot of fun at your party. Glad that the weater held out for you. It must have been so much fun with that water fight And it was probably just that the birthday boy got the worst of it! But I'm sorry to hear that your son hasn't gotten his divorce papers yet. Why do these things have to be so messy. I hope the situation with your grandson is only temporary. I'm so sorry about your SIL also. So sad.

I feel so out of the loop as far as my family is concerned. My step brother had hip replacement surgery a couple weeks ago, and my step sisters and sister in law got together and went up there to be with him (he lives out of state) and stayed a few days while he recouperated. They got a couple motel rooms and when these girls get together it's a laugh riot. Which I could use right about now. But of course I couldn't go. Now I just got a call that one of my step sister's son might have lung cancer. (they'll know more tomorrow). and yet once again I can't go be with her. All I can do is sit by the phone and wait for that dreaded call.

Hope all you girls are having better days then I am.

Love you all

Darlene
 
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mjs445 responded:
Sounds like some of us are having a time coping including me. I had my crying binge last week and I got to admit I felt a little better after. The stress we have takes a toll on us as well as our family. Never knowing what will happen next what mood they will be in or how confused they will be from minute to minute. The medicine the Dr. prescribed for hubby ( .05mg Ativan ) turned him into a very confused person with a blank look in his eyes, like where am I, who are you and whats going on. I won't be giving him any more, it might calm him but this is not my idea of helping. I know some of you have the same reaction, you would think they could find something that doesn't turn them into a zombie.

Suezee sounds like hubby had a great party. Sorry your SIL is not doing well. It's so hard to watch knowing there is nothing you can do to help.

Jaye hope your feeling better. those cries help believe or not. Just knowing we can come here and vent to someone who knows what we are going through is a blessing. Darlene, Cindy and Dani hope things are going well, and loved ones are doing good. Kathy you have a gift of beautifully putting into words what most of us feel in our hearts. Hope MIL is feeling better and gaining some strength back. As you say, at some point we have to leave it up to the Lord. May God bless you all and have a good Wed. Marla
 
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kan12 responded:
ARG!!! I just typed most my post and lost it!! Anyway, hi girls! Yes Marla, I agree. I think a lot of us are having more & more problems. Jaye??? How are ya? Haven't heard much from you. Marla, I also went through similar with MIL. The dr. gave her Cymbalta for depression and because she has such severe arthritis...it has pain meds in it. She was on a very low dose and she sat around just staring like she was just observing and was out of it! We took her off that after a few days. I hear antidepressants arent' good for AD patients anyway but they've tried everything to give her some initiative but nothing has worked. And if they don't want to do anything, nothing will.

Suezee, glad everything turned out well for the BD. I hope everything else resolves itself soon.

Darlene, we have two of a kind. I know my MIL is getting deeper into this stage. She is not the same person she was a few weeks ago. Do any of you have the problem having to tell them exactly what to do--like walk? I've noticed a couple of times, for example at supper today. DH told MIL to get up and lets go to the Bathroom. She turns and sits and literally waits for him to tell her to get up and walk. Also this morning DH gave MIL a gown that was too short. The therapist was coming. I gave her another gown while she was at the table and told her when she got back into her room to change. Her routine is to change every morning in the bathroom. So she goes to the bathroom first, she had the gown, but she didn't change. I asked her why didn't she change and she told me I told her to change in her room. Which I did but she didn't take it upon herself to go ahead and change. She goes into her room and I told her to go ahead and change the therapist would be here soon. About 20 min. later I went in with the therapist and she still hadn't changed. I asked her why and she started stuttering and rambling excuses, whining and told me she couldn't get it off. I asked her why she didn't ring the bell for help and she was speechless and didn't know why. She does fine getting her gowns off and on in the bathroom...so I guess since she was out of her routine she couldn't do it??? She is taking everything we say literally like literal instruction as if she has completely stopped thinking on her own. She won't come out of her room unless we tell her.

Also, she goes & comes with the bathroom issue. She will have a couple of days her bell rings several times a day to go to the bathroom--nothing else--just bathroom. Then suddenly she stops & don't ask and don't want to go. I think she finds it too hard now to get her pull ups off & on and she's avoiding it until she has to. I've had to make her go today and then she didn't change her wet pull up, she said it wasn't wet. I had to make her feel and lift it--it weighed 5 lbs it seemed. But then she asked as she came out was it time to eat. So that is telling me she is waiting until it's time to eat and she has to get up anyway because she don't want to walk an extra 20 or 30 steps.

She is giving up before our eyes. When you don't have the desire to do the basics such as use the bathroom, it's getting bad. She is still able to do it, somewhat weaker than before, but still capable...she just don't want to.

Oh well, it's all just hitting so fast. I don't know what to really look for. I read all this stuff but it's not the same as observing it and understanding if it is AD or just her or both. I told you I had AD on steroids with her personality!

I hope things get better for all of us. As for my gift of words, I only say what is in my heart & what I feel lead to say. It helps so much having you guys to be able to express things to & know you understand. I get so much from you all and your experiences and I hope to give just a little of it back...from the heart---as I always say the good, bad and ugly!

Have a good Wed. you all. I hope it's better for us all.

Kathy
 
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suezee52 responded:
Hello my friends,

Marla, I'm sorry to hear that the Ativan doesn't help your hubby. I've seen Ativan not work at all on some people and on others, like your DH, works too well. You need to find some other kind of med for him.

(((((Jaye))))) Cyber hugs for you. I know how those days go. It's like you wish you could wake up from the nightmare, but it's reality. So you know the drill...vent like there's no tomorrow! It really helps your stress level go down. And we can all sympathize and relate.

Darlene, I hope you get good news about your nephew. I'll say a prayer.

Dani!!! We haven't heard from you for awhile. I hope everything is ok with your mom. I know she wasn't doing really well from your last post.

Cindy and Kathy, I'm glad you girls keep on posting and giving inspiration and hope and comfort. Bless you.

Here is my latest update... I may be off line for awhile as I am not in great shape. My neice called my this afternoon and told me that my dear SIL had passed away. I had told you in an earlier post that things looked pretty grim for her. All I can say is I am so thankful that I saw her last night. And that she knew I was there, if only for a moment. I loved her so much and will miss her alot. She was better than a sister to me. She was my best friend for the last 40 years! I went back up to the hospital to be with my neices. I will, as always, be there for them, as will my husband. Those girls will need us and we won't let them down. The funeral will be either Friday or Saturday. At least my SIL's daughters didn't have to make the decision to take her off dialysis. The Good Lord made that decision today.

I'm sorry if I'm rambling. My thoughts are a mess and so am I. I'm trying to keep it together as best as I can but I'm sure I'll lose it soon. I'll keep in tough as best as I can, but just not right away. Don't worry about me tho, my hubby, son and daughter are all here for me.

Keep taking care of yourselves and I'll check back when I'm able.

Suezee
 
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kan12 responded:
Oh Suezee! Giant Cyber Hugs to you!!!! I'm so sorry! But as you said, God did it His way and that's how it should be. I find we all are trying so hard and for most people it is human nature (some it is not and we know who don't we girls) to try to keep a person going and help them even at our own expense....but so many times God is trying to do His will and nature is taking it's course and we are trying to keep them here and prevent that although not intentionally. I see that happening with MIL. She is giving up, she is tired, she is giving up before her time which is the sad part, but if she don't want to be here anymore, who are we to try so hard to keep her here! We are fighting harder than she is to keep her going and I question should it be that way? But as you all very well know, we can't/won't give up so we have no regrets or "what ifs"! I think we have to care for them, provide the basic necessities they need and then some as we all do, but be aware God has plan and so does nature and has been that way since the beginning of creation until medical science has tried to prolong and create life. Which is many cases it is great, in others we begin to play God...which is another subject.....duh, I'm rambling!

You are a good person Suezee and I know you will be there for her family....just let someone be there for you. You have a great loss too! She is at peace....it's our human nature than mourns "our" loss. God's speed to her soul!

As for the rest of you, I hope today is better than the previous for some of us. Dani, where are you? Is everything ok? Marla hows hubby and mother, Darlene, MIL, Cindy--good day? Jaye....feeling better? The rest of you checking in, hope you are well.

Today really sucks for me....I don't like that word but it's appropriate for my life today! My middle son is at the mountains with his friends...been hearing about all sorts of fun things they are doing, Dollywood, tubing down rivers, etc.....My hubby and daughter are gone to the beach on a youth group outing and my oldest son is working. I would like to be out and working right now....the operative word is "out"! I"m really happy for my kids, I want them to have some normalcy to their lives....but then I have the "what about me" syndrone!! I'm here waiting for a nurse which has just left. Good news is MIL pt level is 2 so it's still good, however energy and blood pressure still low. Still dropping to 80/60 when she gets up with the therapist. It's still running low just sitting. Got to push more fluids and it comes out as fast as she drinks it. This morning her clothes and bed linens and the mat that goes under her were so wet when I lifted them up they dribbled urine everywhere!!!! What a good thing to wake up to. I told her if she insists on going to bed early....6 or 7 pm then she is going to have to get up around 10ish and use the BR again. She says she is so tired but stays in bed and watches tv till about 11 as she does in her chair all day long. She sleeps until 10 am and is soaked and it smells so bad!!

Oh well, it's lunch time and I haven't had breakfast, only coffee. Took care of MIL, her breakfast, nurse and laundry....guess I need to take care of me for a few minutes.

I send blessings and peace to you all and hope you have a great day ....at least as great as it can possibly be!

Kathy
 
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kinikia1948 responded:
Good afternoon everyone.....Suezee...I'm so sorry to hear about your SIL. She was suffering and now she is better hands. I know how it feels to lose your best friend. I lost my niece to ovarian cancer and she was only 42, and she also was my best friend. Had an episode with mom during the night. She woke up screaming at 2:30 am that she was in pain because they were beating her up. She kept yelling "help me I'm dying" this went on for about 30 minutes then I gave her a pill (respridone) and she finally calmed down and went back to sleep. This morning she remembers nothing. Hope everyone else is doing ok.....Cindy
 
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ladytrojans responded:
Good afternoon FRIENDS!!!! Hope all is going well....Kathy....I think we all go thru the "what about me phase"......I know I do.....Hubby works and the kids have their own thing to do....Hannah has ball practice and when we can scrape the money together, she goes out with her friends....J.C. has a girlfriend, so they go out and he goes off with a good friend of his.....And that leaves me, here with mom by myself....Sometimes I feel resentful, because they get to go and I can't...Maybe I'm jealous.....It doesn't seen fair....But I want my kids to have a life and not be tied down like me....I wouldn't trade this time with mom for anything....God put me here for a reason.....If only my 2 brothers could see what a toll it is taking on me....Maybe they would help, but I doubt it....Cindy....Sorry you had such an episode with your mom early this morning....It's strange how they can have these episodes and then not remember anything about it....Dani....Where are you???? Hope everything is OK....We're all worried about you.....Darlene and Marla.....How are things going with you guys???? I'm still having trouble with mom propping her foot up.....She'll prop it up and when your back is turn, its back down on the floor....When you say something to her, she gets mad....So I keep my mouth shut and go on....A friend of mine is having VBS at her church next week.... I would love to go....Maybe if mom is in a good mood and J.C. doesn't have any plans, maybe he can watch her and me and Hannah can go.....Of course I have to wait til the last minute to decide whether I can go or not....My brother is having a bone marrow biopsy tomorrow....Keep him in your prayers.....And I'll keep all of you in mine ....Take care and have a good day....God Bless....Jaye


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