I am sooo drained and not getting any help from anyone Please advise me??????

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pr glo
Regular Member


Date Joined May 2008
Total Posts : 78
   Posted 7/7/2008 2:46 PM (GMT -6)   
My Aunt was diagnosed with the onset of Alzheimers Disease in January 2008 and my Moms and I have attempted to care for her since then. My aunt stayed with my mom after being hospitalized in march 2008 for hallucinating reallyy bad because she was not taking her meds back then she lived by herself she also started getting aggressive with my mom because she didn't want to take her meds she also had a medical bracelet which she took the info paper and threw out on 3 seperate occasions also kept telling my mom she wanted to go home so she did.  and she has progressed rather quickly she also has high blood pressure, high cholesterol and diabetes not insulant dependent we have tried evrything as far as her taking her meds she still hides them and only takes them when we are in front of her face her son moved down form Puerto Rico to care for her but she dislikes him soooo bad that she has gotten very agressive with him to the point of blows and sometimes he wakes up because she is over his bed with her eyes open very wide he is afraid she will hurt him while he sleeps. She can no longer pay her own bills as we found out her bills were not paid for months due to her forgetting she has no short term memory at all. all 3 of her son live out of state 3 men the eldest son lives in Florida the middle child retired from the marines and is relocating to Texas soon and the baby lived in Puerto Rico but decided to try to take care of her but he can't handle all the different situations that occur we are in the process of gettiing her evaluated an assessment to become her conservator because she still has her apartment but leaves stoves on constantly her cooking doesn't taste the same she forgets certain ingredients, still not taking her meds, she wears the same clothing for 5 days if you let her and she not even bathing but says she has when you go to the bathroom it's dry and so is the soap, even though we know she isn't paying her bills she says she has no problems with that or her memory and that she can live by herself and she is very tired of everyone treating her like a child. All we want is what is in her best interest we are afraid she will hurt herself or some one else because when she gets agressive she's very scarrie looking. my aunt hords everything and does not want to throw anything away she constantly through out the day looks for her purse as if some one has taken it and she also started acting as if we are all stealing her stuff. She also constantly is in the bathroom I guess her bowels are not working that well either and she keeps locking all the locks on the doors we are afaraid she will lock herself in one day and not know how to get out and we will just have to break the door down.. basically none of us can care for her at our homes as we have families and have to work and can't afford to pay a nurse 24 hours a day and she can not be left alone it kills me to see her deteriorate so quickly as she has always been self sufficient and has always done for herself and others.   Taking care of her is mentally, physically, emotionally and financially draining. and I have no help from neither her Dr, psychiatrist, social worker, or visiting nurse who see's her twice a week for about 10 minutes they all state she presents well and is very talkative and pleasant so I don'y know what else to do we have brought up to her about assisted living of course she said never!!!! our goal now id to have her assessment on the 29th and that the Dr can give a good prognosis on our end so we can get her in an assissted living place and become her conservator so that we can make her decisions forher as she can no longer make them for herself. because we are all burnt out and can't care for her 24 hours a day.   Can anyone relate to what I'm going through is she in the last stages ofthis disease what else should I worry about what advise can you give me I just need to hear from anyone to give me some piece of mind should I be doing more or less. Please Help. PR Glo   

AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 7/7/2008 7:24 PM (GMT -6)   
((((((((( PR Glo ))))))))))

Sending you big hugs Glo. I'm SO sorry that you are having such a hard time caring for your Aunt. I can't imagine being the primary care taker at this stage. My dad had Alz and my mom, of course, was his primary care taker and I would go over 2 or 3 days a week for a few hours and send her out of the house to visit with friends or shop. I don't know how folks live with this chaos 24/7. So . . . bless you for being so caring.

I sent letters to each of my siblings and assigned them each a Saturday each month to care for Dad while Mom had time to herself. That worked GREAT and each one did take their turn for many months. But it sounds like your family is too far apart for that. . . so I'm not sure how you get them involved . . . but they really should be involved. . . . they usually will if they know how to help. . . it just needs to be expressed very clearly (as my letter to my sibs). I had actually telephone each sib a couple times and asked for help . . . they each agreed, but the help never came. When I assigned an absolute day for each, they really stepped up.

You may need to take the post you made above . . . and re-write it in very clear paragraphs, making it easier to read. It is really a clear statement of what is going on. This should be provided to each doctor BEFORE the next exam so he/she isn't sitting there reading it in the exam room.

Also . . . very clearly specify what you want the doctor to do. I'm not sure what that might be . . . but you should contact your local Alz agency right away and get some good advice from folks who should know what you need. They may need to put her in a facility some time soon if her kids don't step up and figure things out. I'm not sure why this is being left up to you . . . except that you ARE doing the doing . . . so that lets everyone else off the hook for now.

You may need to put the kids on notice that they must take over. That would only be right. What would they do if you weren't living so close?? Distance really isn't an excuse to leave your mother's care to a niece.

I'm sure you'll get some great advice from HowLynCat when she see's your post. She cared for a mom and then a dad who both had this DD.

In the meantime . . . hugs, prayers and . . .

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

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Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 7/10/2008 8:39 AM (GMT -6)   
VERY GREAT INPUT SIS
  DX With Crohns,Pyoderma Gangrenosum,Anxiety/Panic,Fibro & Other DD
                                    Donate at  www.healingwell.com
 
                  Moderator @ Anxiety Panic..Alzheimer's..Co mod @ Crohns
                                    FIGHT the FIGHT with all YOU HAVE
               Look For The GOOD,Even At Your Lowest 
   
 
                   
 


Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 7/11/2008 11:19 AM (GMT -6)   
If you look thru resources and other back threads there may be something to help as well .......

I am so sorry for all you and she is going thru

I DO know firsthand how it feels having looked after both parents til their deaths ............

LYN

Please do stay with us
  DX With Crohns,Pyoderma Gangrenosum,Anxiety/Panic,Fibro & Other DD
                                    Donate at  www.healingwell.com
 
                  Moderator @ Anxiety Panic..Alzheimer's..Co mod @ Crohns
                                    FIGHT the FIGHT with all YOU HAVE
               Look For The GOOD,Even At Your Lowest 
   
 
                   
 


Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 9/24/2008 8:20 AM (GMT -6)   
Pro Glo

Just wondering IF you have found any help and how you are making out

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
 
 
 
                    


pr glo
Regular Member


Date Joined May 2008
Total Posts : 78
   Posted 10/2/2008 3:00 PM (GMT -6)   
Howlyncat, Sorry I haven't written a response on how i'm doing. The answer to your question No I haven't gotten any help except that I had to move her into an Assisted Facility because she can no longer care for herself and can no longer live alone anymore so atleat now I can sleep better knowing she has a nurse on call 24 hrs a day and that they dispense her Meds to her and keep her busy during the day with activities and she has no stove in her room they provide all 3 meals per day. But as with this disease her memory is getting worse and worse. The Assisted Living facility can provide her dial a ride to and from appointments but she can no longer go alone anywhere because she can't comprehend direction or remember to relay messages and I'm afraid she will sign her life or saving away to anybody with out knowing. My Aunt Loves the Facility she is in it's very clean and all staff their and other tenants are wonderful and she has many friends there. I take care of all her mail, bills all her stuff comes to my address and I transport her and go with her to all appointments, I help her with buying a little groceries, It's still very difficult for me as I have my husband, and 3 kids to take care of and I also suffer from Chronic Psoratic Arthritis  where I sometimes can't even get out of bed. I have severe Acid Reflux Gastritis, Swolen Stomach, I also have problems with my gallbladder where I need to have taken out. I Love My Aunt Like a Mother always have I am so glad I'm here for her because she has children but only can count on me and I'm happy she is safe and taking her meds. PR Glo   

Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 10/3/2008 6:52 PM (GMT -6)   
My friend
'YOU truly are a
BLESSING to her
Remember that
I wish you did not have all these health issues ............

Take care of you FIRST
YOU have too

Luvs
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
 
 
 
                    


sue1109
New Member


Date Joined Dec 2008
Total Posts : 2
   Posted 12/11/2008 12:58 AM (GMT -6)   
pro glo there is help out there. i tried to get it for a friend who was diagnoised with alzheimers. and she has had it for 2 years now. You can can get e-mails addresses for the aging and disability services and explain to them the problems you are having and they will put you in touch with someone to help you. you have to be very persistant with these people, but they will help and will assign a case cordinatior for the patient. Let me know if this helps. if not i will get everything i have i did to get alice approved for her care . also she will able to get all medical supplies. like ensure, personal items, vitiams, diffferent. things. good luck

Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 12/12/2008 9:24 AM (GMT -6)   
...Alzinfo.com is one you can go to ..........

Wihing you all the best
There is also a thread with links and info for AD

LYN
 DX: Crohns,Pyoderma Gangrenosum,Anxiety/Panic,
Fibro & Other DD

Donate at  www.healingwell.com
 
                               Moderator@Alzheimer's..
    CO Moderator @ Anxiety and Panic........Co Moderator   @ Crohns                    
                            ~ FIGHT the FIGHT with all YOU HAVE ~
               Look For The GOOD, Even At Your Lowest
  We Have Anxiety and Panic...................Anxiety and Panic DO NOT Have us         
   
..........LYN


tyno3
Veteran Member


Date Joined May 2008
Total Posts : 1081
   Posted 12/21/2008 8:46 AM (GMT -6)   
This is such a common storey amongst us caregivers. Isn't it odd that although all these behaviors are odd, we are all pretty much dealing with the same issues. The issue of the one being cared for thinking we've taken something of their's, the issue of refusing meds of denying there is anything wrong with them, becoming suspicious and paranoid of us because they think we mean to harm them,the aggression, the rooting behavior, digging through stuff as if looking for somethng but not clear on what they are looking for, and much much more. I am one of the 24/7/360 days a year caregivers, and at my ropes end. I am tired of arguing about stupid stuff spending meaningless time arguing and explaning stuff, over and over, tired of being called out, yelled at, verbally threatened, tip toeing around my own house because I'm afraid of waking the sleeping bear. All I can say is, my son says he is coming tomorrow to help. My siblings may as well, not be related to us at all. They don't even call Dad anymore. Except, they call me about when such and such a property will be sold so they can get their greedy fingers on it. Welcome aboard everyone, anyone, hello, can you hear me now, how about now? Guess they're not available. They managed to get themselves located far far away as soon as the final diagnosis was made. Sometimes I just get furious, but that doesn't help. Makes my other ailments that much worse. Thank-you for listening and Pro Glo, best of luck and love to you for being one of Us.

Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 12/22/2008 10:55 AM (GMT -6)   
Tyno
YOU needed to vent
'I am sure glad you did
I am going thru the same with property and all I get is emails and MSN lil quips
"Is the house sold yet??
It is so frustrating
'They could have come ONE dy to say helllo or to let me rest for a bit as well
I too have many a health isue
I never really had either parent get aggressive with me but the accusations are part of this DD

God Bless you and I wish you all the best

Luvs
LYN
 DX: Crohns,Pyoderma Gangrenosum,Anxiety/Panic,
Fibro & Other DD

Donate at  www.healingwell.com
 
                               Moderator@Alzheimer's..
    CO Moderator @ Anxiety and Panic........Co Moderator   @ Crohns                    
                            ~ FIGHT the FIGHT with all YOU HAVE ~
               Look For The GOOD, Even At Your Lowest
  We Have Anxiety and Panic...................Anxiety and Panic DO NOT Have us         
   
..........LYN


tyno3
Veteran Member


Date Joined May 2008
Total Posts : 1081
   Posted 12/23/2008 1:56 PM (GMT -6)   
Of all the things I've lost, I miss my mind the most. confused I realise I just comitted plegarism, but so, sue me. At least the time I do will be similar to the time I'm doing now. And, I  may stand corrected but, I believe inmates are paid, albeit only 17 cents an hour but paid, nonetheless. My son, I retrieved yesterday in a raging blizzard, a 200 mile drive through white-out conditions because compliments of the zoloft, I take, I was comfortable in my own skin and asked for help from a garage attendant. I asked him how best to get over the mountains in a whiteout. He said get behing a large tractor trailer, they know what's what and stay behind him. I did this both ways and it worked extremely well. Now my son is here for about a week, thank-you Santa, and that means I can lean into the intense body pain from the fibro, and just let my son take over.That initial letdown from stress, it is very intense, and hard to let go. Now Dad isn't following me around the house like a little lost puppy. he's actually talking intelligently with my son, about all kinds of fascinating things like WWII to tractors through to dairy farming. All stuff I've heard plenty about already. Also son is up to getting our mail, depositing chequue, and vip getting the muffler attached to the car. I have (hopefully climbed under there probably 15 times to gerry-rig the exhaust system. If he  is sucessful in getting it fixed, it's anoter load off. Now I get to play patient for a while.
Hypothyroidism, Fibromyalgia, Facet Joint Syndrome, High Blood Pressure, menopause, Migraines, Chest Pain, Anxiety and Depression/BiPolar II
Synthyroid .075mg., estradiol.5 mgs., Amyltriptilene, 100mgs, bedtime, Tylenol 3 PRN (six-eight, daily), Valium 7.5mgs. daily prn. Flexeril, prn (not so helpful), Zoloft,150mgs., Zomig approx. 12 per month, prn., Meds for High Blood Pressure, vary.

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