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Old 03-18-2010, 09:03 PM   #1
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Newbie - What is happening?

I've been looking over some of the messages and responses, and this looks like the sort of message board I've been looking for. Hoping you can offer some suggestions.

My mother's short-term memory is nearly gone! She's living in an independent living facility near La Jolla. But we're getting very concerned about her inability to remember something as simple as what she had for dinner just an hour ago. Tonight she said she just needs people around because she's afraid of getting lost trying to find her cottage. She realizes she's 'losing it', but she feels helpless to control it. She was taken to ER this morning for numbness in her left leg and arm, but everything checked out just fine. But she thinks she spent the night there!
We have an appt on Wednesday to begin the process of checking out her brain function. When she lived up here, in Washington State, she went through a series of brain tests, and I believe her doctor mentioned 'dementia'. Really... I think I blocked that term out of my mind, because I just didn't want to hear that word. That was a couple years ago. She really can't do much paper work (i.e., paying of bills), but she can function fairly well as long as life is dealing with the present, living only in the moment.
We've also noticed her not going to exercise classes as much. She pretty much stays couped up during the day, but she does enjoy getting out to the evening entertainment they offer.
Oh, one more big thing: I've witnessed her doing something like sleep walking on several instances. Last time I visited her, she lifted a huge, heavy suitcase up and over some furniture. This was within the first couple hours after going to bed. One time when she was staying at our house, I woke up to the sounds of her yelling, "They're trying to kill me". She kept repeating this, and she was walking, and it would appear that she was awake, but she wasn't 'herself'.
What is this? Is there hope?
Thanks so much
Caroline
Wa state

 
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Old 03-18-2010, 10:49 PM   #2
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Re: Newbie - What is happening?

Caroline... none of us want to hear that word dementia and many of us try to ignore it as long as possible. Even though I had much experience with dementia I missed the beginning of Mom's ALZ. Dad was diagnosed with Vascular Dementia and I just didn't want to believe that I could end up with two parents with this disease. So when Mom self diagnosed depression and blamed everything she didn't remember on Dad... we believed her. But at some point you have to accept the reality of the situation and do what needs to be done.

Yep, what you described is some of what I saw as well. Short term memory gone. Things that happened just a hour ago were gone from her memory. Mom also started isolating herself. She was not able to deal with new situations or old situations that involved cognitive abilities. To do the exercise classes she has to follow directions and that takes a great deal of cognitive ability. If she can't follow the directions she will probably avoid the situation as not to embarrass herself. My Mom, the Wizard of Bridge stopped playing. She resigned from chairmanship of committees. She told the same story over and over and forgot other things that happened. She repeatedly bought the same item and couldn't remember others. There were incidents of paranoia, unexplained over reacting, and getting lost. She lost the ability to use the computer or to pay bills... and she was a bookkeeper. The master cook couldn't make a simple pound cake.

I think Mom knew she was losing it for a while and tried to cover it. She complained that we were not helping enough with Dad when truly she was the one that needed our help to function. They ARE helpless to control it. There is nothing they can do, no matter how hard they try, to remember what is not there. As it was explained to me... At first it is like being in a dark room with a flash light. You turn it on and you see part of what is around you. You don't know what else is there. It's not like we forget where we put something. We know we put it somewhere and we know what it was that we lost. They have no clue they every had the object of put it anywhere.

The initial stages are easy to ignore but as it progresses there is no denying it. You are doing the right thing by having a work up done so you will know her abilities and what you need to do next. It might be time to move her to a more secure environment. She may take a while to adjust because it will be all new and she doesn't have the short term memory to adjust quickly but in the long run she will feel more secure.

What you described in the last paragraph sounds like delusions and sundowning. For some unknown reason the symptoms of this disease are worse in the evening and on into the night. My Dad was subject to delusions. He would wander out of the apartment they were in and was found once walking down a busy street at 6 am with it 13 degrees outside without his coat on. He was "walking to the court house". He was going in the right direction... just in the wrong town. He would get up and insist that he had to go check on the boys. There was no stopping him. He could walk down two flights of stairs on his bad knee that didn't work well on the flat floor during the day. His strength during these episodes of delusion was amazing. They are frequently coupled with paranoia and fearfulness. They are awake but in the throw of delusion. You need to be sure to let the neurologist know about these episodes.

A few things you will want to do NOW... if you have not already. Get a durable power of attorney signed by your Mom as well as a medical power of attorney, medical directive, or living will. Then have yourself put on all of your Mom's accounts. This will make it easier for you to deal with her affairs. The sooner you do this the better because she needs to be aware of what she is doing.

I am truly sorry you needed to find us but I am glad you did since it appears that you are in the same boat we are. I want to welcome you to the board and hope to hear more from you. Know that we have all been where you are. It's a difficult journey. There is no training manual on how to deal with it and we learn as we go. But there are lots of great people here that are good listeners if you need to vent and good advice if you need that as well. Take what you need from what we say. We are here and you are not alone

Love, deb

 
Old 03-19-2010, 04:14 AM   #3
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Re: Newbie - What is happening?

Most independent living facilites are connected to an assisted living facilty and a nursing home. If this is the case it would be easy to switch your Mom to a place where she gets more help. Otherwise it may involve some research on your part to find her the best possible accomodations and care.

Dementia is so common that we can assume that almost everyone will have at least one parent or grandparent with the disease. Usually it progresses slowly, so the doctor who mentioned it a couple of years ago may have been right ..and now she is getting to the point where she has strong signs of it.

She ought to have a thorough examnation. The night wandering (I think she is awake, not sleepwalking) is typical of the disease, and so is hallucinating and being afraid of things not there.

That is why a good nursing home is the best solution. Someone is on duty 24 hours a day, and she will always be noticed and helped if she is upset abot something and crying out in fear. Living alone is not good under these circumstances, and the day is coming when she cannot find her cottage and winds up 'lost'.

I went through it all with my Mom.

I suggest you get her to a thorough medical examintain including the mini mental test for dementia, and than place her somwhere where she gets real supervison and care. The dementia patient eventually cannot take care of her own needs, including dressing, going to the bathroom, bathing. You will feel so much more secure when she is in a safe place. They also make sure she gets any medicines she needs.

Remember that she has no control over her mind and the strange places it is taking her. Do not correct her when she says something wrong, it only makes her feel worse.
As Deb said, she is in the throes of the disease (there are many forms of it, one is Alzheimer's, but they all run a similar course) .Good luck!

Love,

Martha

Last edited by Martha H; 03-19-2010 at 04:19 AM. Reason: sp

 
Old 03-19-2010, 08:41 AM   #4
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Re: Newbie - What is happening?

Thank you so much for taking the time to respond. I do sense her frustration with herself. I think my brother and I are pretty hard on her to go out and stay active. As I've told her, "We know this is the situation, but what are you going to do about it?" Too harsh? In the facility where she's at, they have these memory computers set up in several places. She tried them... for awhile. How about medications? I heard there are meds that will help slow the progression down, with very little side effects.
My husband and I are flying down next Friday and we're all taking a cruise. She still enjoys traveling, but it's getting harder for all involved. Maybe one more big one this summer.

For the future:
* Where she's at now only goes as far as assisted living. But even there, if you're a 'wanderer' then you get 'the boot'.

*Thinking of remodeling an extra room downstairs and have her stay with us until the disease becomes too much to handle. Don't know how much my husband would appreciate this idea, and I'd have to quit my job. But 'family' seems to be what she's missing most of all - even right now.

*Then find a 'memory care' facility when the disease becomes too much for all. How do I find the best ones in Washington State, particularly those located in Olympia.

Thanks again for taking the time to respond. I'll keep doing some searches on this site and continue to learn more.
Caroline
Washington State

 
Old 03-19-2010, 01:15 PM   #5
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Re: Newbie - What is happening?

Hi Caroline, and welcome to the board. So sorry you had the need for it, though.

If you're seriously considering having your mom come and live with you, you need to read and learn about the dementia process before you make your final decision. Some here have cared for family members at home successfully, but it's not for every family and not for every dementia patient. If your mom becomes aggressive, in-home care might not be the best option. If she tends to be up often at night, again, in-home care might not be the best. Whoever does the caregiving for her needs to get their own sleep and not be in danger of injury from her.

You would also need to have something in place to get a break from her on a regular basis. Caring for someone with dementia is wearing, physically emotionally and mentally. You MUST get a respite from it or you'll burn out. My MIL goes to day care two days a week. That gives me a chance to go to the gym, do the grocery shopping, have lunch with friends, or just stay home all by myself. Those little breaks refresh me so I can keep my sanity and care better for her when I get her back home.

Do you work in a field that you can jump back into when the time is right, if you decided to quit your job? Would quitting be an issue for your family or for your own future? You said that your husband might not be too thrilled about it. You need to talk about it. You'll need his support if you're going to do this. It's stressful to care for a dementia patient at home, so you need to be together on it, if for no other reason than so you can vent as needed on a frustrating day. (You'll have frustrating days and some that are much easier.)

Certainly look into facilities either way. Look and see what's available in your area and whether she can afford it. Even if you and your husband both decide it's a good thing to do, you'll want to have an option on the back burner in case she reaches the point that it's too hard for you to take care of all her needs. NO GUILT! It's not your duty to care for her at home. If you can, that's wonderful. But if you decide to find an appropriate facility for her, there's absolutely nothing wrong with that either.

Keep reading and asking questions. We're in different stages and situations with our loved ones here and will be able to offer a variety of information and insights.

Blessings,
Emily

 
Old 03-19-2010, 02:06 PM   #6
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Re: Newbie - What is happening?

Please be very careful with your Mom while you are on the cruise. Realize that she will be at her worst by being taken out of her familiar surroundings. The least little thing could get her very disoriented. If you are walking, it's very good for you to lead with her in the middle, your husband behind her. For instance, if you are walking to a table in the dining hall, she might need extra help finding her way in and out.

This trip could be far for stressful for her than she's realizing. Since she is accepting of having troubles, make it more enjoyable for all by telling her in advance that you and your husband will be watching out for her.

Good luck.

 
Old 03-19-2010, 02:55 PM   #7
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Re: Newbie - What is happening?

Yes, anytime you take them out of their familiar surroundings it's a problem because they don't have past memories to work on. You will have to be VERY watchful of her while there. She can easily wander off and become lost and confused. So just be aware that this can and probably will happen.

As for what to do with Mom after the assisted living. You need to put a LOT of thought into bringing her home. If staff, fresh every 8 hours, can not deal with her care then can you? If she is wandering off at all hours of the night and day (they have no concept of time and don't know what time it is) then are you ready to give up all your sleep. Are you ready to watch her 24//7? Please do not even attempt it without the necessary help in place so that you have time for yourself.

As for a facility... find an appropriate facility that deals with dementia. Mom is in a locked ALZ unit. It has been a blessing. You need to check online with your state agencies to see what ratings they have for facilities and check for any deficiencies. You need to go to the facility you want to check out more than once. You need to talk to family members who have resident there, not in ear shot of the staff but in the parking lot when they can be honest with you. You need to ask questions about care and staff. You need to go to the unit you are considering and spend time. Watch what is going on. Don't just take the flowerly advertisements of the sales staff. Talk Talk Talk... Check Check Check.... take your time and make sure you have what is right for Mom.

As for medication. Those are intended for the early stages of the disease and sorry to say you are probably pass the point where they would be the most beneficial. They DO have side effects from intestinal upset to behavior problems. They do not promise to stop or improve the disease. They only say that it slows the progress... and that is not even a noticeable slowing. I can not tell they did anything for my parents except cause diarrhea in Dad and behavioral problems (agitation) with Mom. One thing you do have to ask yourself.... If it does slow the disease is this the point at which you want to have Mom? When I ask myself that (we caught Mom's dementia when she was mid stages) the answer for me was NO. I wanted and still want her disease to progress as it was intended.

I'm late for a date out so I am going to run and type more later... keep asking questions We are here for you

Love, deb

 
Old 03-19-2010, 05:55 PM   #8
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Re: Newbie - What is happening?

Everybody here is right in warning you about quitting your job to care for Mom. I know it sounds like the noble and loving thing to do but take it from me, it's not. loving, fresh caregivers in a seniors facility is the most selfless thing you can do for your Mom.
Be careful with the vacation thing...every change in her surroundings can cause her not only distress but a cognative drop that will not be recovered.
I thought last year that going out west to visit my daughter at Christmas would be good for my Mom... well, it only caused her anxiety. She wanted to go because it was her family but she knew that she wasn't able because she was afraid. Afraid because her memory was so bad. That is why they withdraw from social situations. I didn't press it and even told her that she was right not to want to travel. she was relieved.
Don't press your Mom into doing anything she doesn't want to do. Chances are that she will only be doing it for you. Even if it's a wonderful vacation, she just might not be up for it...
Lori

 
Old 03-19-2010, 06:20 PM   #9
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Re: Newbie - What is happening?

sorry..i forgot to address the sundowner's...
the midnight ramblings...that is what my mom experienced just before her admission to a nursing home. they are not sleepwalking (although that is what it seems like). It is the delusions and hallucinations that seem to be present after sunset. Very common and unsettling as hell....
Lori

 
Old 03-19-2010, 07:26 PM   #10
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Re: Newbie - What is happening?

Thanks so much everybody! I'll be forwarding these messages to my brother (who's also down in San Diego).
Well... she did recently return from a two week cruise around New Zealand. She had a great time. That was in January. She would probably be okay on this cruise, but the fact that she mentioned she didn't want to go makes me think she shouldn't. However, she's also mentioned she's excited about going. She says it's the 'Mexico thing' - that people shouldn't be traveling there anyway. It's not safe. She does have an appt. with her doctor this coming Wednesday, and if he doesn't think she should go, then maybe the insurance will cover.
Several years ago, she took a cruise by herself to Mexico. But they had to medically evacuate her and she spent several days in a Mazatlan hospital. I guess she was found curled up in a ball in the elevator - in her robe! Insurance didn't want to cover it saying it was a mental thing, but her doctor swore she was perfectly sane, and the travel insurance finally kicked in. Over $10,000 worth. Could this have been the start? Needless to say, she hasn't traveled solo since. Sure was scary. I called her, and it just didn't sound like her at all, saying they were trying to kill her, and she was saying her goodbyes. I remember the Mexican doctor asking us why we would have let her travel by herself because he thought she was crazy, and that we were just using the cruise staff to provide for her care.
So, thanks again everybody for listening. Hopefully, I'll be contributing here shortly.

 
Old 03-19-2010, 09:36 PM   #11
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Re: Newbie - What is happening?

Good question about the last solo cruise dc. It is one of those things we will never know. A couple of years before Mom's diagnosis she got lost at the beach. At the time there was all sorts of rational for why it happened... but I will always wonder if it was just a really bad day in early ALZ. It probably should have been a wake up call but we do like to make excuses for one episode.

The thing I try to remember is that what was good a year ago is probably different today. Even what mom could do 6 months ago, she can't do today. This is an every changing illness that only goes down.

Love, deb

 
Old 03-20-2010, 05:07 AM   #12
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Re: Newbie - What is happening?

One of the hardest things for someone on the 'outside' of direct involvement is dealing with someone who is in the throes of living or dealing with someone who has the illness and they make excuses for many signs that were there in front of them the entire time.

I remember my mother having signs for many, many years before it actually got worse but when I'd talk to my sister about it, she said 'oh Mom had a lot of things on her mind" or "Mom, just has to concentrate better', etc. She always rationalized the failures because we (none of us) wants to admit there may be a problem that will have to be dealt with.

I know my boyfriend's Mom is up in age. While she doesn't directly exhibit major loss, its evident that the age is catching up to her and little things are happening all the time. She lives with a daughter whose taking advantage of the living arrangements by being there with her husband and kids while Mom pays for everything. BF and I have had numerous discussions on how he needs to be involved in what is going on with Mom but all he says is 'my mother's not that bad' OR his other statement "we don't have to do anything about it right now". My sentence is "when do you????" I already know the answer but its hard to get others to see it. The answer is . .

YOU deal with it as soon as you know there's a problem.

I am watching my sister. Ever since Mom died, little things are occurring that causes me to wonder what's going on. While I rationalize she's only 59, this illness can strike at any age -- my cousin by marriage (a male) was struck when he was 57 yrs old.

when Mom was in the hospital at the end, Sister went to visit her and was there for 4 hours before she realized that she didn't ahve her car keys. Apparently she left her car running in the garage for 4 hours!

She went grocery shopping, came home started carrying the bags into the house, for some reason went to sit down in the living room, fell asleep and slept for quite awhile, the whole time her trunk was 'open'.

Now a few times I went over and she's out doing an errand but there is the door wide open and the lights on. While its the way i always leave my house (lol) for her it is highly unusual.

the lastly, she's all alone, she only cooks for one so how much dinnerware is there? a pot or two, and one dish, cup, fork, knife, spoon? and yet I go over and the dishes are piled in the sink and it seems to be for more than one meal. When I ask her why are they like that, she said "oh, I just didn't feel like doing them right now, I thought I'd wait until my entire day is over and do them in the morning".

Totally not anything that would've been allowed when my mom was alive.

If I even say anything about maybe we should go to the doctors for checkups she says there's no need she just had a lot on her mind.

So, I still sit by (once again) and watch these 'little signs"

CaringSister54

Last edited by caringsister54; 03-20-2010 at 05:14 AM.

 
Old 03-20-2010, 05:57 AM   #13
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Re: Newbie - What is happening?

Oh Diane. Not again. Let's hope she is just depressed, and will snap out of it eventually. I hope for your sake that your sister does not have dementia. Your boyfriends's Mom will eventually need more care - it would make sense for the people living with her to do it.

I have read that there is hardly a family with people over 65 in it which has not experienced at least one case of dementia; often 2 or more. In my family it was one uncle, and then my Mom, plus my brother's mother in law. That's already 3 people in a relatively small family.

It may have to do with longer life expectancy. (mom, uncle and MIL were in their late eighties when it began) if so, it will decline - new stastics say that due to our national obesity rates, the newer generations will live 10 or even 20 years less long than the older generations. This means the 80 year old mother and the 60 year old son dying the same year.. How sad that our prosperity and overeating is causing this decline, but the dementia problem is solved by early deaths. YIKES, how did I get so morbid! I wish a long and healthy life to all! Get thinner, exercise, eat well, and live! Dying young is no cure for anything!

Love,

Martha

 
Old 03-20-2010, 07:14 PM   #14
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Re: Newbie - What is happening?

Caroline..

I understand you want to go down to San Diego and "rescue" your mom and bring her home with you but please think long and hard before you do that. My mom has had this disease for at least ten years now and oh my gosh I could not do it 24 hours a day...though some have.
(Where's lil Deb and that list of how things are really like with them living in your home)

Do your homework. If you and your brother agree that she should move to Washington to be nearer to you then call your local Alzheimer's Association and ask them for their help. When I began searching for places for my mom I asked everyone I knew...and lots of nurses. I kept getting references to the same place, so I looked into it. My brother and I spent a week looking at several places but the one suggested by most, won out.

It has 3 living facilities on one campus. It has an independent living facility that she lived in for two years and this past January we moved her right next door to the Assisted Living one...and on the second floor of the assisted living one is a locked unit for Alzheimer's patients. My mom is not ready for that yet but when she is we will just move her to that floor. And if she ever needs more care than that, there is a nursing home right across the parking lot.
We toured every bit of every building so we would know what lies ahead for our mom.

These people who staff these places are good people who are well rested and understand dealing with this disease. Since my mom moved into the ALF she has an aide who dotes on her. Her name is Judy and I love her. She is so kind to my mom.

What is nice about this kind of situation is that each time we have to move her she is still known by many of the roving staff...she is not just another new face in a new building. They know her as a person..as my mom.

We took my mom on an Alaskan cruise for her 80th birthday, six years ago...and then another one to the Caribbean a few years after that. I knew on that one that it would be her last. I never let her out of my sight on that cruise.

Beyond that things got rough.
(this was before we moved her to the independent living facility)
She turned her angst and frustration to me..it became my fault. She accused me of stealing from her...she stopped talking to me for a year and a half...she cut me out of the will.

We have made it through that stage and now have other challenges to deal with...so...I do. And then I leave her in Judy's capable hands and go home to my husband and my life beyond Alzheimer's. This disease will suck you in if you allow it.

My mom did and does take the drugs that slow the disease down. And remember the word is SLOW it down. It does not stop it. She has not had the side effects experienced by others. Talk it over with the doctor and you will come up with a plan of attack.

Love, Meg

 
Old 03-21-2010, 11:02 AM   #15
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Re: Newbie - What is happening?

hi caroline, i am so sorry you are going thru this. i went thru the same thing with my mom. please read up on dementia. we tried care givers, but it just became too much for my dad. finally my mom fell and hit her head-went to the hospital and they would only release her if she went to a nursing home. we were all stunned by the change in her. we switched nursing homes and thats when my mom started a major decline in memory loss, she thought she was raped, etc. what i am trying to say is the responsibility of a care giver is overwelming. we lost my mom last june and i miss her so terribly much. i saw her almost everyday and i made sure we had the best quality time no matter what. this is a horrible disease but you still have your life to live. i hope what ever you do will work out. debbie

 
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