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Old 12-02-2008, 09:37 AM   #1
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Looking for advice and support

Hello everyone,

I am new to this board and am looking for ways to help me to help my mother-in-law.

My mother-in-law is a dialysis patient of about eight years. She has had her ups and downs but has been a very strong, determined lady through it all. What has transpired as of late has me DEEPLY concerned.

Last year she had a spell where she ended up in the hospital because she absolutely could not keep anything down. She had become confused and forgetful and didn't know what time of day or what day it was. She refused to go to the hospital and my husband just had the ambulance come pick her up. She was in about a week and the doctor informed us that he thought she had Alzheimer's and prescribed Aricept. She came home, got stronger and better, my husband and her decided she had suffered from mini strokes and she discontinued the Aricept. She had no other episodes until recently. She started coming into the kitchen for her morning coffee late at night. She fell and broke some ribs and broke a collar bone falling out of bed at night. We bought her a walker and put a rail up on the bed. She recovered well from both injuries but her mind is just really going. She is really confused about what time and day it is. One night at dinner she got a few spoon fulls of butter and mixed it with horseradish sauce, ate it and never blinked and eye. She tried to drink out of the dressing bottle and blew her nose on aluminum foil and went to the laundry room and started putting bounce sheets in her drink. We were all devistated to say the least. Some times she is okay, but her mental state, for the most part is going down hill quick. The dialysis center has also noticed the change. We noticed she had quit taking her medication and my husband has to get it out and make sure she takes it . The major concern I have is her eating habits are pretty much none existent lately. I offer to fix things for her but she does not want anything. At dinner she eats very little. I am overwhelmed at times and am looking for some way to educate myself on how to best help her.

What organizations or advice do any of you know of. Please let me know!!

Darla

 
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Old 12-02-2008, 10:04 AM   #2
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Re: Looking for advice and support

Darla,

I am so sorry that you have had to find us, but welcome you to our board. It does sound like your MIL has Alzhiemers, and that she is slipping pretty rapidly. The fact that she is on dialysis may be triggering the slippage. Is she taking Aricept now? That will help slow down the progression of the disease.

Your local Alzheimer Association is an excellant place for you to start getting your feet wet. A good book also is the 36 hour day.

First off though, you need to make sure that while she is still relatively sound mentally your hubby gets a durable Power of Attorneyand a Medical POA for her and also gets on all of her banking accounts. Do this now before it gets too late. He will need this for all sorts of reasons. Then I would have him chat with her doctors and get a good diagnosis done. If she doesn't have a good doctor that is current with this disease-find one now.

start looking into day care for adults in your area. I assume that she is living with you. You will need to have some sort of respite soon as it is very exhausting caring for someone with this 24/7. In fact you should probably start looking for AL that is in your area. You didn't mention how old your MIL is, but I would bet that she is in her late 70's?

I lost my mom a year ago to this and my dad to vascular dementia and AAA. They died 5 weeks apart so I know how awful this disease can be. You are just starting to see how difficult it is going to make your mil's life. Soon she won't remember to change her clothes and to bathe. She won't remember if she has had anything to eat since you gave her her last meal. She won't remember what day it is. If you are lucky she will remember who you are. My mother didn't remember who I was for the last three years that she way alive..and that hurt.

There are many that will add alot more and welcome you also. I just wanted you to know that we will do all we can to help you over this first rough patch. And I am so sorry that you had to come to us this way...

 
Old 12-02-2008, 01:03 PM   #3
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Re: Looking for advice and support

It does l sound like dementia, sorry to say. Your MIL will need more help than you alone or with your husband can provide. Eating is not the only problem, or not knowing how to do things. She could also go out and wander off and get lost. She could also set a fire by misusing the toaster or toaster oven (My Mom set the toaster oven on fire). She could be persuaded by some crook to hand over her money, bank accounts, credit cards, jewelery if she is ever alone at home.

She needs protection as well as care. My thought is that she would be much better off in a good nursing home, and you might want to look around in your area to see what can be found.

There she would be treated and medicated and cared for by experts, people with only an 8 hour day and not 24/7 like a stay at home caregiver who often (as I did) gets overwhelmed by the impossibility of it all.

I wish you luck and hope you get the practical advice you need.

Love,

Martha

Last edited by Martha H; 12-03-2008 at 04:01 PM. Reason: sp

 
Old 12-02-2008, 04:20 PM   #4
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Re: Looking for advice and support

The combination of the kidney dialysis and dementia is definitely more than you and your husband can handle without help. She will not remember her meds without somebody giving them to her and making sure she takes them, and sometimes she will refuse to take them. She may begin to wander and they are sneaky. In a moment they can be gone. Accidents can happen and they will not know how to respond or they can create situations that are dangerous. One person cannot be on alert 24/7. That is too much to ask.

Bed rails are not a good idea. If they are determined they will climb right over them and are at more risk of injury. A few here have installed intruder alarms in the bedroom so they are alerted when they are out of the bed. I would definitely install buzzer alarms on the outside doors for those wandering days.

Mom tried really hard to care for Dad (Vascular Dementia) at home. She was failing even before she showed signs of Alzheimer. Now it is all that we can do to keep up with the two of them even though they are in AL. I shutter to think what it would be if they were still at home. I did resist that move, Mom refused, Dad didn't want to move, nobody wanted it to happen..... but it was the absolute best thing we ever did. Mom is a little more alert than Dad and therefore she's had a little more trouble adjusting..... but both are much better off now that they have fresh caregivers every 8 hours and a large extended staff to help on a daily basis. I have conceeded that 20 people CAN do more than I can .

The legal papers work is most important. I am not sure what we would have done without it. Mom was wise enough to get all of that taken care of for us and for that we will be eternally thankful.

I do hate you needed to find us but glad you are here. I hope you post often. There are great shoulders, good ears, and lots of experience here. You have some hard decisions ahead...... some that many of us have made or are making. So keep coming back....

Love, deb

 
Old 12-03-2008, 05:56 AM   #5
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Re: Looking for advice and support

Thank you all for you advice. My heart goes out to all of you who have cared for, are caring for, and those of you who have lost your loved ones to such a horrible disease.

My MIL is 77. She is living with us. She was diagnosed, by a doctor in the hospital, who ran tests and found nothing else and decided it was Alzheimer's and put her on Aricept(about a year ago). My husband, his brothers and my MIL, herself, denied the fact that it could be some type of dementia. She discontinued the Aricept. I strongly disagreed but it was not my decision. She has seemed to be okay, for close to a year, but has become very withdrawn for the most part. Everyone chalked it up to wanting to give up on dialysis. I have expressed my concern about her being evaluated again and put back on medication. My husband talked with the dialysis nurses who have noticed a change in her and asked if we needed in home assistance. He told them we weren't ready for that yet. I think we are there or are very close to that. I have noticed EXTREME changes everyday. Not just once in awhile. I do not work and homeschool my children, so I am here during the day. However, I am now terrified to go run errands for fear she will hurt herself if I leave the house. We now do all our running, library visits, etc. while she is at dialysis. I was searching for training in this area for myself, but I know you all are right. This is going to be more than I or my husband can handle. I have to convince him. He is not ready to accept this at all. In all honesty, I am scared to death and I feel horrible for having such little courage. Watching this happen to her is very depressing. I want so much to help him keep his mother at home, he hates the idea of a nursing home.

Thanks for listening and the advice. I have found a few very good sites with great info and am very glad you all here to help.

God bless,
Darla

 
Old 12-03-2008, 07:26 AM   #6
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Re: Looking for advice and support

I'm sorry for what you are dealing with. Having to deal with this while convincing your husband that neither you nor he can do it alone is over the most human of feats. I know I'm right with you.

I have a sister taking care of mother and she wanted to keep her at home. She watched every morsel of food my mother took, made sure medicines were taken, etc. Her goal "to make mom live as long as possible!!!".

The essence of who my mother was -- left a long time ago. Her slide with dementia was long so far 10+ years but it was her long-term memory that helped when short-term memory was no longer there.

Sister has been fighting putting mother in nursing home. About 3 weeks ago, a nurse evaluator came in to set mom and her up with a nurse to come in for a 2-hour respite visit once per week. I guess this time that's been given and my babysitting so sister could go to reunion seems to be the thing that now has sister desperate to get mother into a nursing home. It seems now being with Mother is becoming overwhelming for her but I don't know how it wasn't overwhelming all this time already. She's been a saint, a gift of God to mother and a wonderful person who deserves to have her life. I can't fault her for her new desire but now she has to take it a day at a time to navigate the process it apparently will be.

She called one nursing home our area and learned what the daily amount and freaked out! -- She's scared, I'm scared. Should tell you our home is a duplex with me renting other side. House was placed 7 years ago into an irrevocable trust. Actual money is about enough to pay 4-5 months.

Sister is now appearing anxious to get her into one and do it fast (kind of feeling) etc., but I'm trying to calm her down to say, you need to set up an appointment with a social worker and talk with her. We're not the only ones to have the house and money in a trust. We have to find out what we need to do and how and start the process.

Listen to IBake, DGabriel, and others on this site. They are people of great wisdom who has walked the walk you are undertaking.

You are not going to have an easy time of it with husband. Be prepared, as much as he loves you, he may direct anger at you for making him face what he doesn't want to accept or face because he's going to feel like he's failing his mother.

The guilt will be there for all of you but him most of all. Let him know that he's not failing his mother because she is no longer the mother he had. She's a stranger in his mother's body. A new, confused, person whose life has taken a different path.

Write again. We are here for you and care about you. But when he's ready to put his mother in care of someone else's hands, hold on tight! He'll want it to be a quick thing and it certainly isn't by any means.

Last edited by caringsister54; 12-03-2008 at 07:36 AM.

 
Old 12-03-2008, 08:26 AM   #7
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Re: Looking for advice and support

Bless you Darla.... you are caught between the reality that you see and the denial your husband is in. Not a pretty place to be. You need to keep talking to him. You need him to visit a nice care facility to see what is there. You need to be sure he knows what you deal with on a daily basis. Make sure he understand every episode. Express to him your fear of leaving her alone in the house to run a short errand. Express your fear of what it is doing to your children. Explain to him you are not super woman. That you can't do what fresh care givers every 8 hour and an extended staff of support people who are all trained to deal with this disease can do for your Mom on a daily basis. Placing Mom in a good care facility that fits her needs is not neglect.... it is what she needs. Not doing what she needs is neglect. In her right mind, Mom would not want him giving up his life and his family for this disease.

I have been through this struggle with both of my parents and sisters who were not ready to move them. We struggled for a while to keep them at home and it was a disaster! There finally came a day when we had no choice. We were forced to deal with the entire move in a week. Circumstances forced our hand. My only regret is that we didn't do it SOONER. Mom and Dad are still a hand full with new and different problems along with some of the old ones...... but there is an extensive staff of caring, well trained employees that are there to deal with much of it and help us when we need them. What a blessing they are.

Our crisis moment was Mom's emotional melt down. Martha's was her Mom breaking a hip, little deb's was a realization she could not longer care for her dad as she should. We each have that moment. I just pray it is not as dramatic as some here. At least demand an in home caregiver to help you at some point during the day. Tell him that is not an option. Then you will have the assessment of the caregiver to help you convince him of the next step. Yes, you need to stand firm. Make up your mind this is what needs to be done and go for it. You will not regret it....

I will keep you all in my thoughts and prayers that his eyes will be open to what needs to be done.

Love, deb

 
Old 12-03-2008, 10:44 AM   #8
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Re: Looking for advice and support

darla, I was the one who had to convince my Daddy to put my Mom in a NH. What terrified me was when I got my birthday card with the corner burned off. Oh, that's not too bad, Dad said....Mom had put the card down on the hot burner...The whole apartment could have gone..but that's not too bad! I've been there, done it..got the T-shirt and don't want to wear it...but it was the best thing we could have done for Mamma.

The staff at the home is fresh and caring and calm and come back every 8 hours. They provided far more care and coverage than we could have. They were trained to dispense meds, lead classes, sing-alongs, watched her all night, changed her when she became incontinent, nursed her, bathed her..and I could go on and on. Nursing homes aren't what they were. They are well kept and clean and cheery. Staffed with caring people who know what they are doing and have been trained for their tasks. If this isn't what your husband is expecting, then he hasn't been in a good nursing home in the past few years.

Keeping your MIL at home will cause stress and strife and come near to tearing your family apart. Your own health with suffer-ask Martha, your children -if you have any at home- will suffer-your marriage will suffer-ask little Deb-your entire life with become fraught with tension and exhausion just for starters..is your husband willing to put the family through this just for his guilt?

Here's your towel Darla, hang on tight..you're going to need it...welcome to Planet Alzheimer where nothing is what it seems...as your MIL is already showing you.....

Last edited by ibake&pray; 12-03-2008 at 10:45 AM.

 
Old 12-03-2008, 11:29 AM   #9
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Re: Looking for advice and support

I should also mention that the year we tried to keep Mom and Dad at home after Mom's diagnosis.. along with the few years before that which we were running ourselves to death not knowing what was going on... I wrecked my health. It has taken me a year of hard work to get back to some sort of stability. It was mostly stress related. I was oblivious to the problems until Mom and Dad were placed because I was so determined to keep going no matter what. I shutter to think what would have happened if that one day of chaos has not created a situation that left us no option but to move Mom and Dad to AL.... I don't want you where I was then.

Love, deb

 
Old 12-03-2008, 04:06 PM   #10
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Re: Looking for advice and support

Darla, we also tried to keep Mom out of a nursing home and in fact waited a good year too long .. finally she did have to go there and to all of our amazement she enjoyed her life there, and was much happier than before .. who would have thought it! There were quizzes, outings, musical entertainment, friends her age and in her condition, whereas she had felt isolated and alone when living with family members ...

It all turned out for the best and I wish you luck too.

Love,

Martha

 
Old 12-04-2008, 05:04 AM   #11
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Re: Looking for advice and support

we are now going through the stress of money for nursing home costs. I thought I did good putting the house in an irrevocable trust, the only problem now is that the trust was set up for mom's care and the house is in the trust therefore we are now learning that it appears to be a strong possibility that both my kids and I, as well as my sister may be forced to lose the roof over our heads. Who knew??? We did it through an Elder Care lawyer and even though he tried to talk Mom into signing the house over to our names or adding our names to the deed and she refused, he said 'you do realize that this makes you obligated for your mother's cost?" at the time she had "X" amount and we thought that was going to be plenty.

Well, its not and now we're trying to see if we can keep the house in any way. It may mean that my rent will jump $500./mo. and my kids are going to have to chip in somehow while still paying their bills
but there's no way my sister can come up with rent for her side since she hasn't worked in 7 years while taking care of Mom.

And if anyone said that she'd be able to stay in it and be exempt from eviction because she was Mom's primary care giver, the answer is apparently "no". The only way she could stay is to pay the market value of rent in our area which is $1,400/mo. Here in NJ, it appears to be that the only person who can stay in a house and have Medicaide pay for the NH costs once the actual money is gone, is: The spouse, any dependent child (under 21), any disabled children.

If I totally deplete my retirement account I may be able to scrap up the money to buy the house from the 'trust' but then I am left with nothing BUT this house and nothing else. I need to get my life, I want to move out. I've been in the same house since I was born. I don't want to be forced to buy it but Sister can't think of leaving it as its the only place she knows as well.

I am putting my prayers in God. I feel there is something thats in the plans. Maybe it is that this situation is to force us to sell and split up and go our own ways. As someone wrote "when you're down to nothing, God is up to something". I just wish I had a crystal ball to see how the future is going to turn out. Right now stress is forcing me to live in a bathroom, having my stomach hurt, and I have to take Tylenol PM to get any sleep for the stuff spinning in my mind. Stress! isn't it great.

Just wanted to let someone know so they may be able to plan better. I thought we were doing right with Mom by protecting the house in some manner from alas, it may not be right. I'll keep you all posted so that others may learn by our mistakes.

Take Care and pray for all of us.

Last edited by caringsister54; 12-04-2008 at 05:06 AM.

 
Old 12-04-2008, 08:12 AM   #12
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Re: Looking for advice and support

Sorry this is such a hassle. It is a shame you are letting it make yu sick. I will add my prayers to yours and expect things to get better.

The rules seem to differ from state to state, and because of the general shortage of funds everywhere they are becoming more and more strict.

I hope a solution can be found.

Love,

Martha

 
Old 12-04-2008, 11:37 AM   #13
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Re: Looking for advice and support

Caring... when one door closes another one opens. If you do lose the house use it as a jumping off point for something new and better. Hold on to your faith that all will turn out for the best even if you don't know what that is at this time. My sister tried to push just such a trust and the lawyer we went to told her it was "not needed". Thank you for that information because it only validates what we did.

I think you are right Martha. With the current shortage of state funds it is getting more difficult to qualify for help and they are more strict about the guidelines. Hopefully something will make it better soon.......

Love, deb

 
Old 12-04-2008, 05:06 PM   #14
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Re: Looking for advice and support

Please do me one favor. Don't necessarily think an irrevocable trust is a bad thing. It did protect Mom's interest and made us the co-guardians of the trust for her care.

At the time I looked for an Elder Care Lawyer, she was coming into a certain amount of money from a house we sold in PA. She was also doing strange things with the Pychic (sp?) Friends Network (you remember the commericals on TV).

Well she was lonely and she was also a hypocondriac (sp?) After she called them (I think once) they started calling her and saying "Susan, we have a special message coming through for you, call this 900 # and we'll give it to you). She'd dial the 900 # and with all the calls, one phone bill came in at $700.00!!!

We realized that she wasn't going to be responsible correctly for any money she was going to be getting. Also some of her 'friends' living on limited income, I guess thought they could talk her into sponsoring a vacation trip and they'd pay her back (ha ha)

The Lawyer praised me because when I met him I phrased it that we needed something to protect the money to make sure its there for her care and he said it was refreshing because most kids come to him saying, what can we do to protect my inheritance.

Everything would've been ok and the irrevocable trust would've been great had the woman (my mother !!!!) allowed either gave us the house or added our names to the deed.

Yes, it may vary from state to state. But I'm telling my story so others may be better informed. Here in NJ the 'look-back' period is 60 months (5 yrs).
-----------------------------------------------------
One other thing. Please don't take offense, but my mother's been in this decline for about 10+ years. She only managed longer because it was a house and area that we've lived in for 40+ years so she worked off of long-term memory for about two - three years after we moved her back to NJ upon the death of my Dad.

So my question for you all is
How long??? can this go on? Could my mother last 10 more years? She's got medical problems on top of the dementia but nothing that would put her life in jeporady per se'. I'm not wishing it for tomorrow but I hear others losing their loved one so fast when it begins (my cousin lasted 1 1/2 yrs after being diagnosed with ALZ at 55 years of age, he was gone when he was 57)

I see my mother as like an EverReady Bunny, she just keeps going and going, God Bless her. I'm not wishing for it to be over immediately, but I'm just so afraid that she could outlive all of us. She's got one sister younger
(82) but also one older (91).

Last edited by caringsister54; 12-04-2008 at 05:08 PM.

 
Old 12-04-2008, 05:23 PM   #15
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Re: Looking for advice and support

My mother lived 4 years after the doctor finally recognized that she had dementia. I had known it 4 years before that. It eventually prevented her from being able to swallow, and then to digest and process food. She died peacefully in December 2007, 99 years old and weighing only 75 pounds. She had been in nursing home care since September 2005. The first 3 months were covered by Medicare, we paid for the next 3 from her resources, and the rest was covered by NY Medicaid after a lengthly and complicated application made with the help of an Elderlawyer.

At that time the look back period was 2 years, now it is 5. Luckily (as it turned out) Mom never owned any property, rented her apartment, and had some savings but not much by today's standards, although she felt all her adult life that she was 'rich' compared to the poverty of her childhood in Europe!

It's all relative, I think.

Love,

Martha

Last edited by Martha H; 12-04-2008 at 05:28 PM.

 
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