Follow
Share

I am Mom's only caregiver, have 4 siblings that do not help. She thinks I am someone else, she thinks I am lying to her all the time. She has dementia, but the last 2 months has gone down fast. I am referred to by her as THEY. She wanders where I am when I am sitting next to her, I have cared for her for 3 years 7 days a week. She hit me hard last nite when I was putting her gown on her. She tells me to go find that daughter that takes care of her. I am at my wits end, I need answers. The doctor put her on the Exelon patch thursday but she is worsening every minute. One of my sisters called her this AM and she whispered to her to call the police to get me out of there. She has completely lost it. I need advice.

This discussion has been closed for comment. Start a New Discussion.
I know this post is over 7 years ago but I am just interested in how things turned out.
My situation is practically exact other than my mum now 90 is nursed in bed due to leg trauma.
Please could you let me know
(0)
Report

Rsanford, my heart goes out to you. What an awful development! It sounds like you are handling it as well as it can be handled, but it must be very painful. Hang in there!
(0)
Report

I know this is an old discussion but I thought it would be appropriate. My mom had a major meltdown today, maybe partially due because we're been planning a move to assisted living.My mom thinks I am her husband/my father. Apparently there is bad history between my now deceased dad and mom. She is so angry at me (her husband in her eyes) now which, yelling and screaming. This is so bizarre. She is being so hateful to me(dear old dad). Yes, I know it's the disease. I never though I'd have to deal with her repressed anger from 40 years ago. I just leave the room when she starts the tirade.
(2)
Report

Luv, I can only say that it's a progression and that I think it's the scariest thing we have to deal with as caregivers and children mostly. I was hysterical when I realized mom no longer remembered me at times although it came and went. I have ABSOLUTELY no words of wisdom for you here but I do empathize greatly and I know that you are hurting. I only wish for you peace during this time. Hugs.
(1)
Report

georgi, your post really illustrates well that drug reactions are highly individual. What works for one is dangerous for another. I am so glad that your mother's doctor was willing to keep at it until something that works was found. I'm glad your mother is at least not vilolent now -- and I'll bet at some level she is glad, too.

I am very sorry for your losses, georgi. You have lost the mother who was proud of you earning your Master's Degree; the mother who knew how hard you worked; the mother who was very clear about who you are. These losses are all very sad. And they are not officially acknowledged. There is no little notice in the paper. Old friends do not call you up and offer condolences. No one brings casseroles or flowers. You are in mourning, but no one has died. It is indeed heartbreaking.

Other caregivers of persons with dementia understand your continuous unofficial losses. Come here and share with us.
(0)
Report

LU
My mother was placed on the Excelon patch twice and went CRAZY both times. The doc said "Take it off." Will never use it again. My mother sometimes doesn't remember who I am. It goes away soon after. She thought she was waiting for her hairdresser tonight, OMG, it was me. She calls me my sister's name quite often and I just think that all that I've been through, I've got older looking in the past three years, so I probably do look like her a bit. She also says mean things to me like I've never worked a day in my life and meanwhile I have a Master's degree and have been working continuously since I was 16. WOW. She doesn't remember these things. I've had a horrible weekend. I try not to take things personally, since I know it's "THE DISEASE" speaking, but I can't help but do take it personally and it hurts :-( My mother uses her nails as a weapon and digs them into my hands. She, if I can remember had done this when I was a child. She also, as I mentioned uses her walker as a weapon. She was recently placed on Respirdone 2.5mg twice a day. I know it has a lot of bad side effects with some people, but the violence and verbal abuse thank god has stopped. I sometimes have to give it 3 times a day when the HHA is here. But the Excelon patch does have some bad side effects that eventually go away if you live long enough. It doesn't calm the person down, it is used to slow the disease process. I truly don't believe it does, as Namanda made my mom worse and I was told to stop it immediately. Resperdone, small dose does help.. Please stay safe. I lock my knives in the diswasher, which she does not know how to open. I leave the apartment when she flips out and come back in about 10 minutes and there she is sitting with a smile saying "Where have you been hunny?" Sweet as ever. Oh it is so heartbreaking and I am not strong enough for it. I need my own life ASAP.BTW, "They" are always around and seem to buy the food, soap, and everything else. I ask her who they are and she tells me "the ones that own the apartment." YIKES. Mom is going downhill pretty fast and I think it's from lack of exercise,and doing things, this is why her life needs to change for the better and it's not a nursing home I pray. I pray they accept her in the ASL in Florida. I have my plans made. I can live with her and my two dogs free for a while and maybe try to get a job and apartment down there. I want her to make friends?? and enjoy the rest of her short life. SOB SOB. SHe's not the mom I remember and then sometimes she is. But I'm not the same person I was three years ago, smiling having fun. I am miserable as can be. I am so happy to find this wonderful group of people. Stay safe everyone. Mom and dad really don't mean to be bad people, their minds are so messed up and they don't even remember from one moment to the next. Georgi
(1)
Report

notmydaughter, dementia is a devastating disease not only to the person who has it, but also to their loved ones. It is not "fair." It is not "reasonable," it is not anything we can anticipate and prepare for.

My husband was a very successful mechanical engineer, specializing in manufacturing design. Believe me, these professionals have extremely good spatial concepts. If I'd ask him to estimate how wide a ribbon was he'd say 5/32" -- and he'd be right! I always let him put leftovers away -- I never could guess the right size container. If I were shown a list of possible symptoms of the disease he developed (Lewy Body Dementia) and told that not every person with the disease experienced every symptom, the symptom I would least expect him to show would be visuospatial problems. Imagine my shock the first time I realized he could not figure out how to get into bed so that his body fit between the headboard and footboard!

That your mother, a kind, intelligent, caring woman cannot now recognize one of her daughters is equally shocking and perhaps more devastating. There doesn't seem to be a correlation between what kind of people they were and what symptoms they have. You can see glimpses of your real mother when she tries to do the proper thing and acknowledge you are her daughter, even though that does not seem reality to her.

Your mother's particular symptoms are NOT YOUR FAULT. And they are not her fault. This is a disease, and concepts of blame or guilt or fairness just don't apply.

I am so sorry for your loss, and the other losses you will experience in the days ahead, before the final loss. (I'm sorry for mine, too.) Cherish each moment of joy you can experience with your mother, whether she fully knows who you are or not.
(0)
Report

I agree with some of the others, it is time to put her into a memory care facility. I know it can be hard but you have to do what is best for her and you
(0)
Report

Thanks!! I was talking on the phone to her before moving mintes from her to help.. I got some feeling she was confused by me but thought well she probly is in a state that it comes and goes.. Not until i arrived to visit on our visits to look for our home close to her did i see it in person. Still thinking.. Must come and go. When i became more hands on with her daily did she spring on me. Who are you that you know so much about me and my family. I set stunned...... I felt like i was hit by a bolt of lightning.. Hurts to this day. I am more than aware daily she can't help it. it is not her choice to forget her child ( me) If she should notice me getting alittle upset by all the questions. she then begins to apologize. which in return makes me feel so very selfish. She says.. well if you all tell me your my daughter.. it must be true. Don't think you would lie to me, but still.. no real feelings.. I hug her and tell her i love you mom leaving or arriving and she says. i guess i am suppose to say i love you too. Another pain to deal with.. So hard. All new.. I guess i will have to learn to deal with it. but please know.. I am oh so aware it is not her fault. Mom was always a very loving, caring and understanding mother. A vey independant woman raising 6 children alone with a full time office job as a floor manager. This has rocked our family that dementia would get to her. She was the most intelligent woman i ever knew. Very proper and honest and kept her life mostly to herself. So for anyone to help her in any way is a devistatin to her that we knew a long time ago was going to be difficult. Thanks so much for your help and replies.. Need all he feed back i can get....
(0)
Report

Notmydaughter, Don might be right in his speculations about why it is only you (so far) that she doesn't know as her family. But it might be something entirely different, and I doubt you'll ever know. Just know this: whatever the reason for this behavior, IT IS NOT YOUR FAULT, and it is not your real mother's real feeling toward you. This is caused by a plaque in the brain, or a protein deposit, or a tangle -- it has a physiological basis. It is not about love or lack of love.

(And even if Don's theory is right, she is NOT "choosing" to not know you. She has no choice in the matter.

Have you tried talking to her on the phone lately? In Jolene Bracey's book she explains that often dementia patients can continue to recognize voices long after faces cease to make sense to them. It would be worth a try. Perhaps in person you'll have to be the hired help, but on the phone you could be her daughter.

I hate dementia too!
(0)
Report

rebecca139. Thank you so much. This memory thing is so very hard for me. More so than any of my other siblings. I am still confused though. Why i am the only one of all 6 of her children she cannot connect to. Don (mybrother she lives with) says maybe because you do more physically for her ,,, baths, her laundry in her drawers to pick out her clothes for the day. That she is chosing to not know me ats her daughter that she is more ashamed that her daughter has to do this for her and choses to think of me as an outsider that comes to help. Was so hard for me to continue with the physical help and trade it for who i really am to her.. Her daughter..I hate dementia!!
(0)
Report

Not my daughter, I am so sorry. I care for my 86 yo father with dementia. He doesn't always know I am his daughter but he does know I belong here, in his house. I live with and take care of him. He goes to an Adult Day care and knows my name and knows I am there to pick him up and take him home but doesn't always know I am his daughter. I have a sister who comes about evry 6-8 weeks to stay with him for a couple of days. She got so upset the first time this happened to her she spent two hours showing him pictures. It didn't help him but helped her. She makes herself a name tag when she comes now. It makes her feel better. With her he knows he has a daughter Patty, he doesn't make the connection she is that daughter. There are some days the not knowing gets to me and does bring tears to my eyes. Most days , I can acknowledge it hurts to grieve yet one more thing this disease has taken , take a big breath, exhale and move on to the next thing. I am thankful he is not physically aggressive at this point.

I take big deep slow breaths alot. these days.
(1)
Report

Thank you very much Jeannegibbs. Would be i think so hard to talk to my mom as me in a third person. Guess i should get use to it and deal with.. Not easy at all. Can't even guarantee you i can. Thanks for the kind and caring words.
(0)
Report

Rsanford, my heart goes out to you, too. It is so hard to deal with loved ones who are there and yet not there. We suffer all the little losses along the way.

Nancy and rsanford, I'd like to point out that the first several posts in this thread are from last year, but there is a newer one by notmydaughter, whose situation is a little different. Just thought you might like to respond to the newer one, too.
(0)
Report

"The doctor put her on the Exelon patch thursday "...I wonder if this medication could be having some type of effect on your Mom? I also have become multiple people in my Mom's eye. I've found that simply changing my clothes will cause her to not recognize who I am. Sometimes I am her son she calls by name , then I'm the unnamed "other one", other times I'm her brother, her husband. Occasionally she calls me Doris (very strange since I'm male and have a beard!). Doris was a co-worker from years ago.
(0)
Report

lu42501, a certain amount of paranoia is supposed to be 'normal' with dementia/alz, but your mother seems like she's gone down too fast, and in too short of time in my opinion. If she were my mother I'd be getting a second opinion AND/OR camping out at her doctor's office till I got some answers. With all our medical technology these days, they better NOT be just throwing up their hands and giving up.
(0)
Report

How very sad for you, notmydaughter. You go ahead and cry. It is important to recognize and mourn our losses along the way with dementia. By the time our loved one dies we may be all cried out. That is OK.

Does your mother have Alzheimer's or some other kind of dementia? The pattern of memory loss is different from one kind to another. Your mother has not forgotten you because your life had little significance to her. Really! Although it feels extremely personal, this is not about you. It is about tangles or plaques or abnormalities in your mother's brain. You are right that she can't help it, but wrong to think that means she has loved you less or that you were less important to her.

I wonder if it would work better to just go along with her. Don't try to convince her that you are her daughter. Call her by her first name. Tell her you know about the family because you know one of her daughters well. Perhaps tell her that you have lost your own mother and you are glad to have her in your life. If she wonders where "that daughter that takes care of me" is, tell her she couldn't come today but you'll help her.

I think the loss of the ability to recognize loved ones is one of the very saddest aspects of dementia. You go ahead and mourn!

A book with many, many tips for caregivers whose loved one does not recognize them is "Creating Moments of Joy" by Jolene Brackey. It may provide some comfort to you to know that you are not alone and to have some ways to share moments of joy with your mother, whether she knows you or not.

Hugs to you, loving daughter.
(4)
Report

My mom has been living with my brotherand his wife for 5 years now. I recently moved closer to help him as she is needing feminen help now..I knew for about a year her memory was getting worse but nothing like what i have experianced these past three monthes. I have been doing my best to deal with the fact she says i am not her daughter. To beat it all. I am the only one she does not recignise. There are 6 of us total. I was in her life more off and on as an adult than 2 family members where.. but i am the only one she does not consider her daughter.. Did my life as a child have that much less meaning to her. I wasn't the oldest. I wasn't the youngest i wasn't the first son or daughter nor one of the twins. I feel my life had very little significance to her to not remember me only. I was the middle child. She gets very upset when she ask how i know my brother.. how i knew what year she was born. How do i know her mother. It is very confusing to her. This is the first i have noticed for a parent to only not know one child of 6 births. I am trying to just blow it off. Keep in mind she can't help it. It is so very hard to accept i have lost my mother and she is sitting at the table with me talking to me like i am a friend of the family or something. Trust me i want to do all i can to help with mom, but today i am affraid it took the cake. I was yelled at, at a family bbq. for butting in on her personal family business. I joined in on a family conversation that we have often when we are all together, Nothing seriuos just family talk. I cried so hard. Told my brother i love her and you very much but this is just way to hard for me. Now i am crying and and cannot stop. I truelly have lost my mom......
(0)
Report

we all have so many similar things going on....i too go to my mom's world...it is hard, but the less stress better for her...we are strong people to be doing this and remember we are in this together, i may not know each of you personally but on a different level we know each other very well...my mom continues to decline as well, she will have a stent put in on march 1...not sure how that will effect her....i will be praying for you all...god does answer, sometimes we just don't know it.
(0)
Report

Ruth does not remember me. i can go outside and smoke, come right back in and she has no idea who I am. I get called, Mama, Laney, Mary, Oma( German for Grandmother) and some choice names I will not say. I just go to her world. It is useless to try to get her to remember who I am. Right now we are having the nightly conversation of where is she going to sleep, the door needs to be locked, where am I going to sleep. We do this for at least four hours, sometimes, like tonite, i am very tired. So am having to ignore some of it because I will use a tone with her that will only escalate the situation. God Bless us all
(1)
Report

We went through that with my daddy before he hit the end stage of Alzheimers and to my mom I am now "that woman that works here" quite often. Not all the time yet but I know it will come as it did with Daddy.

It sounds like you are stuggling with the stress - I can also identify with that! That said, only you can say when the time comes that you can no longer handle it. Remember that what you have done for your mom to this point in her life is wonderful! Life is too short however for you to put your own life at risk because you still have many years to enjoy.

I agree that the violence is the concern. If it is just combative but not hurtful that is one thing but if it escalates and injury will be a concern, then it might be best for you to move her into an Alheimer's Unit.

My husband and I have had these discussions and as Mom continues to slowly decline, we continue to talk about it so that we stay on the same page. If you have a husband, a sibling or a friend that you can talk it out with, try to do so and don't feel guilty! Again, remember that what you have done so far is wonderful!

If you have not been in contact with them yet, you might also reach out to the Alheimer's folks at www.alz.org.

I wish you well in this journey!
(0)
Report

I am conserened about the violance. As far as the memories some times looking at old photos helps, to show her who you are. But it does sound like she needs to go to an alshimers home. There are special nursing homes just for alshimers patainets. And as for the siblings, I have the same problem and have just relised some peopel can handel care giving and some can't. You are the angel on earth in your family, and you have a special gift of careing that no others in your family have. But angel or not you still have a life to lead, and don't feel quilty if you do put her in a home. Relise we all have our limitations. big hug and god bless
(1)
Report

My heart goes out to you i can relate to you well. my mom didn't know me any more or my sister. i ahd a hard time getting her to wah herself she wouldnt get dressed i couldnt get any nursing help at all. yet and still i had my one friend help me out to bathe mom and dress her she never wanted me bathe her or dress her acppted my firned tohelp her out . I know what your going through. I had to put mymom in nusrsing home back in November her demenstai alz got worce she was ikn the later stages of it it got so hard thatno-one couldnt handle her anymore when i finally had one nusrsing agency come to my place she was agressive with the nurse she wouldnt let her check her heart or bp. that weekend nov 8 she kept falling i had to take her to the hospital I told the social workers i wanted to put her in a rehab nursing facility she was admitted permittly Ilost her Deceber 10. she died from alz demstia at 92 yrs old.. i know its hard have you tried talking to the alz associattion? or going to any of the support groups? they have counselloers ther you cvan call on 25 hours i spoke to the alot I didnt get a chance to get to any of the support groups . hang in there. i wish you well.
(0)
Report

my heart goes out to you and understand this situation unfortunately...my mom has a 95% blockage in her right carotid so this attributes it to her confusion does he have blockages?? also understand the no help from siblings i have one sister doesn't visit or do anything...also...they prescribed my mom resperdal helped her with her "episodes"..remember ton breath, count to ten before responding or reacting to your mom because she doesn't know what she is doing...and most of all keep praying...i have been staying wth mom almostn 2 yrs and understand completely what you are dealing with..hang in there and keep inn touch....lucy
(0)
Report

Thank you Lynn, the doctor has run testing for urinary tract infection, none found. She has been on the same medication since 2006, no changes in meds, She started acting violent and belligerent before he put her on the Exelon Patch. The past three months she has referred to me as "They". Now she is thinking there are 8 women who take care of her (I am the only one). She thought I moved her bed and furniture out of her house yesterday to an empty house up the street, she now says she wants to go back to her house. No furniture was moved. She refused to eat her dinner last night and threw the plate (full of food) across the room. She is imaging that I have disconnected her phone, which I haven't. I am afraid to leave her because she has stated that she would take all her medicine and kill herself, burn the house down, everything dramatic you can think of. I promised her 3 years ago I would take care of her...now I am thinking she needs to be placed in a resthome (which I dread to do), however I absolutely cannot stand seeing her this way, The other sisters say for me to do what I think is right, it seems they don't have time or either don't care, I am at wits end and feel like I am carrying a heavy burden that I can no longer do. Again, thank you for commenting, I need someone to talk to about this, and I greatly appreciate you kind words. Lewanne
(0)
Report

LU - If it were my mom, i'd call her doctor immediately and ask for an appointment to run some tests - perhaps she's having a drug interaction or UTI. It might also be that she's finally hit the point where she won't know any of you. When my grandma got to that point she though my mom was her sister - until Mom held up a handmirror while she sat next to grandma, then grandma talked to the reflection of BOTH of them like it was her daughter... totally weird.. Anyway - if there's no physical cause for this, perhaps it's best that you find a spot for her to live then visit her often. Hopefully, she'll remember you then. I know it's hard to move them after you've cared for them for so long but if she's starting to hit you, she could be capable of greater violence and YOU need to protect yourself. # years is a long time to put in, take care of YOU too. Best of luck,
(3)
Report

This discussion has been closed for comment. Start a New Discussion.