Feeling down and out

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hope48
New Member


Date Joined Aug 2008
Total Posts : 12
   Posted 8/8/2008 9:27 AM (GMT -6)   

Hello,

I am new to this board and could really use some support about now. Are there different stages of Lewy Body Disease, or is it the same as the Alzheimers? My Mom was diagnosed back in 2006 with this horrible disease. I took her in for evaluation because of hallcinations and the report came back from the Doctor as Diffuse Lewy Bodies. I was told that it had probably been going on for some time because memory loss usually starts about a year prior. My Dad had passed away in 2003 after being married for almost 58 years. I can't imagine the trauma from that. You loose your soulmate after all of those years and have no one to go to bed with and wake up with. He was her life.

Okay, now back to my story. When I was in there on Wednesday for when she was having an ultrasound done I noticed some torn paper on the floor. I didn't pay much attention to it at the time because I was focused on sitting on the bed with her holding her hand. My Mother over the past year has been going in and out of conciousness. She will just lay there and not hear you or feel anything. At first I was told it was mini TIA's but now find out it is part of the disease. I am aware from what I read that this Lewy Bodies advances more quickly than Alzheimers, is that right? After about 10 minutes she came out it and then fell to sleep. Her vitals were normal.

After she went to sleep, I went over to the paper that was on the floor. Come to find out, it was my Son's picture torn up. I broke down. She had just spoken with him on Sunday. I take my cell with me because he likes to talk with her. She seemed fine and even asked him how were the kids? I realize that this is part of this disease, but really had a hard time with it since she loves my son so much. I also could not locate my sister and her daughters picture. (No big loss) but won't get into that.

Just when I think that I have my emotions under control, it seems something else happens. My Mother and I used to do so many fun things together and yes I do have wonderful memories. I think that is why it is so hard seeing her like this now. She can still talk but most of it makes no sense at all. She curses and says words that would never have been in her vocabulary before. She is unhappy and depressed. She is on Celexa, baby aspirin and a mild diruretic. She does have congestive heart failure and chronic Atrial Fibilation. So if she were to fall and break something she could not be operated on because she would die on the table.

I guess the reason for me writing is because, I can't for the life of me understand why these beautiful people have to go through this. And yes, when you say it is harder on the caregiver that is so very true.  I have been to therapy over and over.  I realize that the life span of this disease is shorter because of the advancement, but are the stages the same as with Alzheimers the same and do you have to have every symptom on the list in that stage?  If not, then my Mom would be in the last stage.

Well, I have been longwinded enough for a first timer on here.  I wish to pray for all of you caregivers out there because it is not an easy thing even though they are in a facility you are still the one facing every crisis and every change that they go through.

Thank you one and all and any feedback is certainly welcome.

Be blessed

Hope


SnowyLynne
Veteran Member


Date Joined Apr 2004
Total Posts : 1539
   Posted 8/8/2008 10:23 AM (GMT -6)   
Many caregivers have a need for antidepressants to stay cool,calm,& sane.Ask your Dr abbout them.Do you have hands on care for her or is she in a facility?Even tho it is stressful for you...........
SnowyLynne


hope48
New Member


Date Joined Aug 2008
Total Posts : 12
   Posted 8/8/2008 10:35 AM (GMT -6)   

Thanks for the reply.  I am already on Klonopin and have upped my dosage twice.  I have been on anti-anxiety meds for years. I have tried antidepressants but they always counteract with my klonopin.  I am very sensitive to these types of meds.  I wish that I could be one of the tough ones but its the seeing her go downhill that does me in.  I don't go as often as I used to.  My husband told me that was only hurting me more.  She has no sense of time anyway.  My Mom is in a Alzheimers care unit and it is secured where she cannot get out.  They also recently put braclets on them which I though was an excellent idea.  I am going to go to one of the support groups that they have next Wednesday.  I was going to another one, but dropped out because it was not helping me any.

Hope


CharleyRice1931
Regular Member


Date Joined Apr 2006
Total Posts : 397
   Posted 8/8/2008 11:00 AM (GMT -6)   
Hi Hope, I think I know how your Mom must feel. I'm at that place now, my wife passed away last December after 52 years marriage. As to how you feel I have also been there, I placed my wife in a NH when she could no longer walk after a fall and was injured. Fortunately I removed her after a year and cared for her alone till the end, almost five years. Prior to going into a 'home' and while there I was like most other people, upset, stressed and on medication. It is not possible to think straight when you are upset. Only when I had the control of her care did I have to learn so very much about the illness, enough to write a book which I'm on doing now. I've yet to get to the part on the Alzheimer's 12 years journey. There are some simple things we tend to miss when confronted with what we perceive as strange behavour. We forget about our loved one's sight, in many cases it can't be tested. It doesn't improve with age, I should know, so if your Mom sees a picture it may not be of the person as you see. I recall about six years ago seeing two girls advancing towards my wife and I, they we two of our teenage grand daughters we had not seen for some months. Only when they spoke did I recognize them and I don't wear glasses. Many like me in their late 70s and 80s tend to look back on life, most have achieved what had to be done. My wife did not look back, but like most tried to go back home and did so in her mind. It was good to go back with her to a different world, one we both knew and understood. How I wish I'd got to know her as an even younger girl. I tried when it was too late, she could no longer talk in the final five years, this in spite of knowing her as a seventeen year old! I'm going to break a rule of never giving advice and just say; keep telling her how much you love her, kiss, hold and embrace her. If I have given you food for thought I'm pleased.
May your God go with you.
Padraig

hope48
New Member


Date Joined Aug 2008
Total Posts : 12
   Posted 8/8/2008 11:33 AM (GMT -6)   

Dear Padraig,

Thank you for sharing that with me.  My Mom and I are extremly close. Sometimes she calls me by my sisters name and that used to bother me but not any more. She does recognize my husband as well which is good.  When I visit with her, I always hold her hand and give her hugs throughout the time that I am with her and tell her how very much I love her. And when it is time to leave then I never say good bye I tell her that I will see her later and another hug and kiss.  She is a very depressed person and they have her on medication for that.

Sometimes I think that losing a loved one could bring on this disease. I hear that so often that once once spouse goes the other can possibly come down with it.  I am not sure how true that is.  She does have menenogomas in the brain which I am sure by now have grown.  But I am not going to put her through another MRI. That would not be fair to her.  I want her to have to best quality of life as possible.  She was living with us for a while, but she tends to wander and that put the fright into me and thought I am not trained in this and needed to find a professional place for her to be.  Although, she is in her 4th place now and I simply love it. The people are wonderful with her as well as they communicate with me which I never had that before.

Well, I better get a move on, I am going down to see her now.

Thanks again for your letter and God Bless You!

Hope


Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 8/9/2008 10:46 AM (GMT -6)   
Welcome Hope
I have lost both parents to this DD and I despise what it does to our loved ones
I have written out a piece on Lewy's body Disease I am sure there is something in there to help you
IMHO it does progress quickly .....

I am so sorry that you had to see that part of your mom hun they do get angry and aggressive and take it out on those they love
That is the hardest part of this DD

Know that what you are doing is HELPING your mom no matter what she may say or do
This is for sure
Love and touch is so necessary for them
I held my Dad's hand when he went to his Maker

YOU are now no longer alone

God Bless you and your MOM
  DX With Crohns,Pyoderma Gangrenosum,Anxiety/Panic,Fibro & Other DD
                                    Donate at  www.healingwell.com
 
Moderator @ Alzheimer's,Co Mod @ Anxiety/ Panic,Co Mod @ Crohns 
 
                                    FIGHT the FIGHT with all YOU HAVE
               Look For The GOOD,Even At Your Lowest
 
     Listen To Your Heart,Look Inside Yourself,Understand You
 
 
 
                    


hope48
New Member


Date Joined Aug 2008
Total Posts : 12
   Posted 8/9/2008 11:08 AM (GMT -6)   
Howlyncat,
 
Thank you for your response.  I do the best that I can for her.  Does DD mean what I think it does?  You are right, I cannot for the life of me understand this disease.  My mother knows that she isn't right and get so frustrated when she can no longer get the words out to make a sentence.
 
You mention that you wrote a piece on Lewy's Body Disease, could you please tell me how to get to it as I am new to this board I don't know how to get there.
 
I certainly do appreceite your time in writing to me, it means a lot.
 
I am sorry for your loss.  It must have been devastasing to lose both parents to this disease.  The reason that she was labled with Lewy Bodies is because of her hallucinations.  I am now worried about me coming down with it along with my son and grandchildren.  I know that this is going to sound off of the wall to you, but do you think that when her time comes that an autopsy should be done to verify this type of dementia?  I honor your opinion.
 
Thank you again and God Bless
Hope

hope48
New Member


Date Joined Aug 2008
Total Posts : 12
   Posted 8/9/2008 11:27 AM (GMT -6)   

Howlyncat,

I did manage to navigate to the Lewy Body site.  Thank you again for your caring.

Hope


Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 8/16/2008 7:29 AM (GMT -6)   
HOPE
I believe there is much more to learn from the threads and resources
How is she doing lately my friend
God Bless
LYN
  DX With Crohns,Pyoderma Gangrenosum,Anxiety/Panic,Fibro & Other DD
                                    Donate at  www.healingwell.com
 
Moderator @ Alzheimer's,Co Mod @ Anxiety/ Panic,Co Mod @ Crohns 
 
                                    FIGHT the FIGHT with all YOU HAVE
               Look For The GOOD,Even At Your Lowest
 
     Listen To Your Heart,Look Inside Yourself,Understand You
 
 
 
                    


hope48
New Member


Date Joined Aug 2008
Total Posts : 12
   Posted 8/16/2008 8:02 AM (GMT -6)   

Good Morning Lyn,

Well, this is the second time this week that I have received a call that she has broken her glasses. I had bought her one of those bands to hook on her glasses, you know one of those ones that bikers use.  So, I am going down there today and taking the glasses and going to Walmart and get some heavy duty frames if there is such a thing. She has been declared legally blind so I don't know how much good they are to her. The problem is that she cannot go with me, because she is so disoriented and with my anxiety I can't handle it.

I am frustrated and I hate this disease.  I love her so much and just have to try to remember the good times that we shared when we went on vacations together and laughed so hard we cried.  I wonder why God put those people that we love through this H _ _L?  I find some comfort in listening to Christian music and church and know that one day God will take her home to be with him.  My father is waiting for her.  I also find comfort in getting in the pool and turning on music and dancing. I think that helps me more than anything else because I am helping my body exercise and my brain isn't on overload.

Thank you so much for your care and interest, it means more to mean than you know.  But then again, I am sure that you understand.

Regards

Hope

 


Mr. HealthWize
New Member


Date Joined Sep 2008
Total Posts : 1
   Posted 9/12/2008 9:53 PM (GMT -6)   
Please see forum rules and get permission from the forum administrator (admin@healingwell.com) before advertising here.

Post Edited By Moderator (AlwaysRosie) : 9/13/2008 6:51:23 AM (GMT-6)


Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 9/17/2008 5:33 AM (GMT -6)   
Morning Hope
Sorry I have not been around
Out ill
I know just how you feel hun about this DD as do all that loose their loved ones to it
Please know you have been in my thoughts and prayers


How are things going now??


  DX With Crohns,Pyoderma Gangrenosum,Anxiety/Panic,Fibro & Other DD
                                    Donate at  www.healingwell.com
 
Moderator @ Alzheimer's,Co Mod @ Anxiety/ Panic,Co Mod @ Crohns 
 
                                    FIGHT the FIGHT with all YOU HAVE
               Look For The GOOD,Even At Your Lowest
 
     Listen To Your Heart,Look Inside Yourself,Understand You
 
 
 
                    

Post Edited (Howlyncat) : 9/17/2008 4:38:50 AM (GMT-6)


hope48
New Member


Date Joined Aug 2008
Total Posts : 12
   Posted 9/17/2008 7:22 AM (GMT -6)   
Thanks to all of you for your kind words.
 
Yesterday I was going through her Medicare Papers and found out that she had some Physical Therapy back in June and July.
 
So I called her facility and they told me it was for a balance issue.  First of all I told them that I am very proadvocate and am mad that no one told me about this, plus I told them that, "Gee, wouldn't you be off balance if you were legally blind too?"   The fact is that you cannot try to teach these people something new, they forget. What is wrong with this picture???  Plus the fact being proadvocate, if I knew about it, I would have checked to see how everything was going?
 
I was also told by the facility that it was not related to any kickbacks or anything like that. That seemed rather strange to me for them to mention that out of the blue.
 
Well, I will talk with them this morning and get all of the paperwork from this PT. It cost medicare almost $4500.00.
 
I will report later in the day as to my findings.
 
Thanks again
Hope
 
 

Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 9/17/2008 8:01 AM (GMT -6)   
smilewinkgrin  HOPE.........
You sure live up to your NN
I am so PROUD of you for being as you are
NO this should have been reported IMMMEDIATELY to you
I owned a retirement home here in Ontario and I know that this would have gotten to loved ones asap......if not quicker
 
YES it is very strange and very weird that they would bring this up out of the blue isnt it ?? nono         Something dont smell right ....Nor sit right in my guts as well
I know I live in Canada ( Ontario) BUT if there is ANYTHING  i can do to help just let me know........
If it is just to vent know I am here k
God Bless you .......and yours
 
  LYN  
 
Please do keep us posted
With you in Spirit
  DX With Crohns,Pyoderma Gangrenosum,Anxiety/Panic,Fibro & Other DD
                                    Donate at  www.healingwell.com
 
Moderator @ Alzheimer's,Co Mod @ Anxiety/ Panic,Co Mod @ Crohns 
 
                                    FIGHT the FIGHT with all YOU HAVE
               Look For The GOOD,Even At Your Lowest
 
     Listen To Your Heart,Look Inside Yourself,Understand You
 
 
 
                    

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