Dementia Support Group

That Aging agency might also provide you with an aid to help your mother with bathing since she is using a walker. Since it sounds like she doesn't have a lot of money, it might be free or for a small co-pay.

I called mine here in Pennsylvania and was offered a home visit by a case worker. I'm not ready for that in my situation, but it sounds like you need one ASAP.

Oh you poor thing. My story is EXTREMELY similar...it started Nov 05 and is unfortunately still going on today. Same as your mom...it was out of the blue (sort of...just thought she was a bit senile), but anesthia and an illness really got her into an extreme state. I also had to bring her to a geri psych hosp after 2 other hospitals released her to me and said..."Good Luck!"...with no meds given. The geri psych hosp. thankfully commited her and kept her for almost 3 months until she was stabilized...(it was bad, VERY bad). She was then released to a very upscale assisted living that a lawyer(mom called him) (long ugly story) picked out for her. Long story short...2 1/2 years and over $84,000.00 mom is now living in my home. The assisted living cost up to $6,000 a month and since my mother owned a home, they had planned on draining her funds until she ran out (lawyers included). I have had her in my home now for 6 months and it has been awfull. I dont have many suggestions to give you yet, but I can offer a few ideas. First get a POA. Mom will present herself as "Normal" at the worst times for you, that's when doctors, lawyers, nursing homes etc will think you are the problem not her. Transfer the ownership of her condo or sell it asap and transfer it to an account you can have access to , to pay her bills. Unfortunately any money or property she may of had before this will be lost because there is now a 5 year look back with the govt. and medicare will want all of it until nothing but $2,000 is left to her name. At which point her care will then be paid for, but only at federally funded places. I have been in these facilities ( I'm an EMT also) and they are not so nice either. However, the $6,000 a month place looked nice, but was horrible behind closed doors. There really is no great answer that I have found yet. I did find a family friend recently that had elder care experiences and was loooking for work. I hired her 2 weeks ago and I can tell you for those 7 hours a day the relief is immense. If only it is to witness was I see and validate how crazy this all is. My health was at a severe decline from 3 years of this mess and was starting to look real bad at one point. I am slowly starting to feel a bit better, but during the last 3 years have lost my mother (mentally-& she blames me for everything), my father died (he also had vascular dmenetia and blamed me for everyhting), my 3 years of nursing school came to a terrible end ( I crashed from the pressure with mom & dad's death and failed my last class), have had gotten ill enough to require surgery and have been unemployed for over a year. I now stay home full time with mom and have lost "Myself" also along the way. I am just beginning to see the light now with some help. This whole disease and the way it works and treats "US CAREGIVERS" is disgusting. I offer you my deepest support and any knowledge I have that can assist you on what NOT to do or what to watch out for. I hope you have a good support group/family. I am an only child have lost everything including my family's home to this disease.I do have a wonderful son and husband, and if it was not for them I wouldn't be here today (seriously)
Write me anytime you want. It does not have to be hopeless. Mom should be on antipsychotics and watched 24 hrs a day. You can find maybe a companion (like i did) to watch and feed her etc for at least 6-8 hours a day. (I pay her $10 an hour privately). What you need is to protect yourself , children and family from mom. Her life is ending. This disease is terminal and gets worse. DO NOT LOSE YOU LIFE OVER HER. I cant express it enough. I almost lost mine and honestly it would have been a pointless loss. My Mom is gone. She was never very nice, but now she is just plain selfish, mean and almost evil.Nothing will save or change her. As daughters its very hard to wrap your mind around this whole thing. I totally understand. Even after 3 years, I still find myself trying to reason with mom , and it is trully useless.
Again...I am so sorry. When this happened to me I had no resources and absolutley NONE of the medical community was there to either educate or warn me(not even my nusing school professors). It was a mess.
Good luck girl!...you are SO not alone...Believe me!
Pam..aka Morganfairy*

I can feel your pain so much and wish I could come hug you all. I have cared for my Father, now 85 for almost 10 years as he slowly declined from Parkinsons and Vascular Dementia. The paranoia is horrible and the nasty comments and rages are just debilitating. I have found that it never helps to reason with him, but do have a bit of success with rubbing his arm and giving him attention. But it is all consuming. This weekend I had to place him in a nursing home when I just could no longer provide the care he needed. Fortunately he was a veteran and had a few options on where to go, but he is an hour from my home and it's wearing me out trying to visit and help him transition. No one knows what this is like until you live it and my heart goes out to you all. I feel like I've found friends already on this site. I wish I had a way to tell how this will progress and how long he will live like this. It sounds morbid, but I know he does not want this to be his life. I also know I can't keep up with this forever.

I have found community aging advocate groups to be a help with sorting out all the paperwork and options, but this takes time too. I wish there was more answers and I'm going searching for them. We will survive and remember you have your husband and child...what a blessing. I have no children although I wanted them and no husband. It is a lonely road we walk isnt' it..

Dear morganfairy and pounder - Oh my - my heart aches for you both and I wish I could offer something more than my hand of support and an ear to listen.

When I hear about how other countries take care of their elders, I wonder where the U.S. dropped the ball. Or maybe we only hear of the good - the grass is always greener type of thing. But it seems that so many elders in our country fall into this grey area, as does my mom - and therefore they and their families are placed into such stressful situations, mentally, physically and financially. Family members should not be forced to compromise their well-being to such extents on any level in order to take care of an elder. It is a sin to have to loose financial, physical or emotional health in order to maintain those for an aging parent. I just wish there were more programs out there to support all of us who want and/or have to take care of aging parents/grandparents. Why is it so hard to do so? One would think that the state and fed govts would want to support this instead of having to build and maintain "facilities" for folks who could otherwise be at in-home settings when possible.

Anyway - my mom has settled in surprisingly well so far. I think she is contrite for having lashed out so, although I do believe she still harbors all of her negative thoughts and feelings about me and my family. However - as I've mentioned in earlier posts - she still has enough faculties to connect enough dots in her mind - so she has realized that 1. there is a dementia issue she can no longer deny and 2. We are her only option, for now, anyway.

She has made real efforts to "be good" and compliant. However, I suspect the dam will burst at some point because she still needs to reconcile her frustrations and anger with all of these changes in her life, which are certainly understandable, and maybe start acknowledging what she still has as opposed to what she doesn't. Anyway - we are being given a time to catch our breaths, so to speak.

I am so thankful for this forum and for people like all of you who care enough to share your stories and support.

Dear Mrswall,and all..
Nice to have friends...I consider you all my instant friends since we share an unfortunate bond.
Beware the "connect the dots" moments mrswall...please. My mom was very educated and quite billiant in her day. This being said, combine that with this disease ...it can cause quite the mess. Mom has on and off understood she has dementia. Then she has hired lawyers to prove and remove the word dementia from her file.(What file she is talking about...no one knows)..But mom takes it as a personal insult 99.9% of the time.
Sounds like things are falling in place for you, I am so happy...Be strong, brave and keep in touch. Things can go either way at any moment and we are all here for you. It is a lonely road...but you have us now and hopefully it will help.I have often wondered about my own sanity when being with mom. She can be so convincing at times. As a daughter, I automatically assume she means what she says, then I am thrown into the turmoil and doubt about what is really real. It's like living in OZ sometimes. Reat assured, nothing you can say or do will shock most of us...we have unfortunately been through the mill and have seen it all. Ask any questions...and write as often as you need. I joined this group a couple of months ago and I swear that was a huge part of what saved my life. Brightest Blessings...Morganfairy*

My goodness, Morganfairy - I suspect we are sisters with the same mother! I couldn't have said it better about your mom being able to make you question your own sanity and perspective. When things were so bad in the hospital last week, I never would have forecasted the guilt feelings that welled up in me. It is hard to separate the person's illness from what they are doing and saying.

Already I am seeing her cycle again. As I had noted, she was being real good. Then yesterday i noticed she started getting more depressed again. This morning I realized that her respirdal pill managed to stick in her pill box and was not taken last night (my fault for not noticing). This morning she came out and her demeanor was almost cocky and snide. Could it be due to missing that one dose? Just the normal course of this illness? I can go crazy trying to figure things out and tell myself to let it go. But of course, it is not that easy as I find myself always trying to figure things out, predict things, etc.

I will certainly stay in touch here with all of you wonderful folks and again, I hope I am able to offer back as much as I gain.

my mom has dementia and she is in the middle stages which is loneliness depression suspician and paranoia, she lives with me and my sister is blaming me for everything. But mom is doing a lot of complaining about everything and now there is division between me and my sister.

I am in the process of getting a referral to a geritritionist(sp.?) to see what soet of dementia she has.

Choco - I am so sorry to hear about the division happening between you and your sister. I have learned it is so very common that family members who are not present on a daily basis just have no idea whatsoever of what it is like for the the caregiver, especially if the caregiver has his/her parent or whomever, living with them. PLease invovle yourself with a local support group - it makes a huge difference in your own mental and emotional well-being.

My mom has continued to cycle up and down - the dementia and the depressive psychosis is a tough combination but after 8 months we have finally been able to somewhat stabilize her. She is on repsirdal for the psychosis, and it has been very effective for her. They have upped her anti-depression med (effexor) and she has been on Aricept (dementia) for 5 months now. We've had a few really bad, nasty events, but I just have to detach myself emotionally from her when it happens and go into a strict caregiver mode - as if I am caring for a patient - not my mom. It does help - me, anyway. We get through these tougher times. Life is totally dofferent since she has moved in with us - our family time is changed, our schedules are impacted, our flexibility is non-existent, meal times are a different deal now, - well, the list goes on and on. When I start getting frustrated, I just try and step back and remind myself that this is part of the life cycle that we will probably all go through. I can not be selfish. Yet, I also do not want to forsake too much of my family's life, either. It's a tough call where to draw that line. Anyway- I also wanted to respond to your statement about getting with a doctor to determine just what kind of dementia she has. I was bound and determined to find that out as well, when all of this was rearing it's ugly head. Answers, any kind of answers, were so desperately sought by me. Now, to be honest, the kind of dementia doesn't matter to me anymore. I meanreally, what difference does it really make. This illness is what it is and can not be predicted very well. Labeling it doesn't cure it. So I would rather put my energies on the day to day aspect of our lives and help her get through it all with as much comfort, grace and dignity as possible.

As I have been told by others in this forum - You are not alone. Hang in there - hang on tightly to those who understand and know you are doing all the right things.

Actually knowing what kind of dementia you are dealing with can be important. If it is FTD, the dementia drugs don't work and can make the situation worse. So it is important to know that much at least.

Also, a neurologist ought to go through his checklist of diseases that mimic dementia but which are actually treatable to make sure it isn't one of those.

Knowing if it is mainly vascular dementia rather than mainly Alzheimer's can also help since symptoms will appear more suddenly with vascular dementia. But the treatment is the same for both, and most vascular dementia patients also have Alzheimer's. In that case it is not absolutely necessary to know which kind it is.

Thank you for your comments. The Alzheimers Assoc. suggested to have the test done, but the doctor doesn't seem to think it is very important.

Mom has been on Reminyl for the last three years.

Yes I did hear from professional who work with this kind of thing that is very common thing to have happen to families. My sister is leading me to believe that mom is complaining to her about everything and that maybe she is trying to divide mom and I. Then I wonder if mom is trying to divide my sister and I. Anyway the division has happened between my sister and I but she isn't turning me against my mother because I know it's the dementia.