I am new to this and I hope I am posting in the correct place. I am a daughter trying to coordinate care for my mom who has Alz/dementia. She has always had to have her own way. She was always very controlling and manipulating and it has hightened these traits making care for her extremely difficult. She still wants all control by way of guilting and denial. She lives in her own home though, has care providers in and out throughout the week as well as myself. I am feeling most guilty about considering taking more of a position in the background. I have always been there for her but it is never enough. As well as being my mom's main care provider and daughter, I am a wife, a mom, and run a small business. The huge amount of calls from my mom every day is very hard on me. She paints a lot of doom and gloom irregardless of how many positive activities/outings we attend. She hates being alone but, refuses to consider assisted living in any form. And in Wa state she is ultimately in control of her decisions up to the end.

Thank You for your time.

I can relate to this. I am a daughter and the main caregiver. I am single & work full time. It's becoming harder and harder to deal with a full time job, our house & her. I will have to soon be making her do things that she doesn't like or want to do. The difficult thing is that I live with her & have lived with her since my dad died 26 years ago. She has always taken care of me & to see her age like this is diffucult. I have no time to myself but now will get 4 hours after work once a week to do what I want. I love her & she is so important to me but, I feel my life going downhill & not my own.

Let me say that I've been dealing with my mom's dementia for several years. Actually, looking back, it's been more years than I realized - we just didn't have that diagnosis right away. Mom's personality started changing (not for the better) but eventually leveled out most days. If your mom has been "difficult" most of her life, it's going to be exaggerated now. Against advice from Mom's doctor, I moved her in with me when she was no longer safe alone. I am now struggling with having to move her - again - to a nursing home because I can no longer provide the care she needs. It's impacting my health and my relationship with my very loving and understanding husband, children and grandchildren. There is just not enought of me to go around. Heed the warning - you cannot do this on a few hours a week respite. Guilt? It will eat you alive if you let it. Some very wise people on this site have helped me to understand that taking care of yourself does not take away from the love of your parent. You must do what you must do for yourself first. Makes me understand why my daughter (a paramedic) was taught in training that priorities must be "myself, my partner, my patient". I understand that now.

Our family dynamics have always been strained. I have 2 siblings. One will have nothing to do with my mom and the other had nothing to do with her for 20 years. I was the the naive one that tried to make everything ok for her. That never helped much or for long. It hasn't changed much now. She has also always been very negative, judgemental, suspicious, needy, depressed/anxious (found that in her old medical records), and phony. I have always stayed on the front lines and I am feeling the effects of it. I guess I just need to justify for myself, that being more of a silent partner (in regards to coordinating her care) would be ok. Even if just for a short time.

Repeat after me - I must take care of myself before I can be of use to anyone else. I did not break my mother and I cannot fix her. Take it in baby steps. And I am resolving to practice what I preach! Good luck to us both.

Memaw - you are so right. hgw - write these words down and read them every day. Personally, I feel very strongly that I could not do this for my father - I would end up hating him and hating myself and I won't be guilty for admitting this and getting him the care he deserves - from someone else. Take care.

I would recommend that you contact an attorney and check into getting the guardianship of your Mother. Here in Michigan,,as long as you have 2 medical diagnostic statements from say the Nuerologist and the Priamary care physician,,you can file for guardianship. Of course each state has its own process.

Stop trying to fill your Mother's time and thinking that she's going to be happy the more you do,,,forget it,,its the phase she is at right now with the AD,,,and you are so right,,some personality traits do get amplified,,such as selfishness,,all about themselves and to hell with the rest of the world,,,nothing is ever enough,,,I know just where your'e coming from.

I would suggest that you hire more help to come and stay with her,,like live in companion,,so she isnt' home alone at night,,and so that you don't have to go over there constantly.

If that doesn't work,,then absolutely look into placing her into a nice ALF,,and visit her when you have the time.

No easy answers,,no easy solutions,,but we somehow manage to find the best answer and solution when are backs are against the wall and we have no other options. I wish you strenth to get thru this ...Peace

This is my first time on. Here it is, after midnight, and I am up, worried and agonizing about my mother who's dementia has gotten so much worse lately. Today was a nightmare. So, I decided to see if possibly there was some hope and help on this website - and here are all of you - ALSO writing late a night. What a tremendous relief and comfort. My mother's dementia has now taken on dimensions of psychosis - today she was sure people in the lovely facility she lives in were coming into her room to give her injections of harmful medications. She's just been put on some anti-psychotics to, among other things, help prevent her from hurting the aides in the facility - which she was doing more and more (hitting, biting, etc). My mother has always been a tremendously difficult person - and as I hear echoed in so many messages - I too am the "dutiful daughter", taking care of my mom while my far-away brother is living a peaceful, cushy-y life. Mostly, right now, I'm incredibly freaked out seeing my mother being so frightfully crazy and weird. Can't get the images of her being this way out of my head. It's a real comfort to have read your great messages.

Thanks for reading this. Wishing us all a peaceful rest tonight.

I personally think that AD should be renamed "Emotional Hell". At best it is very difficult to reverse the parental role. My mom was always the "caretaker". She cooked, baked, cleaned, etc, etc as if there was no tomorrow. It took a while to get her settled down. I think that she is actually starting to enjoy being waited on, something that she never would have allowed before. At first it was really difficult. Mom has been with us a year and has established a routine. My biggest problem now is the influence of outside forces. You know, the ones that didn't give a damn when mom was going down hill. But now that things are relatively settled they want to put their two cents in. If their is one thng that I have learned it is let go of the guilt! Just the fact that you care is much more than most people are willing to do. If you don't take care of yourself you will be no good to anyone. I used to feel guilty about not taking mom grocery shopping with me. She loves to go to Walmart. If I take her it is a 3 hour ordeal of fighting her to not buy everything in sight. I don't take her anymore. Grocery shopping is my time to think my own thoughts and even browse a little if I want to without interruption. Our mantra should be "No more guilt!". Do the best that you can for your mom, but not at the expense of your own life. Good luck hgw and God bless. We are always here for you! Fran

To daughters and sons--

Our sanity and health have to come first--or the ship will capsize.

We need to find ways to make our own lives easier. They won't be easy, but:

Talk to an elder lawyer since there is the possibility--at least in some states-- of setting up a legal caregiver's contract where you can be paid for your work. (I didn't do this but the lawyer suggested it.)

Also, if you live in your parent's home and care for them,the state won't place a lien on it if your parent goes on Medicaid. (Though Medicaid laws keep changing so you need to talk to lawyer.)

In some states now (MA), there are programs beginning where Medicaid will pay you to stay with your parent ($1500/month plus free daycare) rather than have them in a NH (but a NH may still be best for some families..)

We are saints, we love our parents, but we can make sure that our decision to take care of them doesn't impoverish us-- financially and spiritually.

After reading a lot of the posts, I too am new to caring for a parent with AD and new to this forum. My mother is 87 and has been diagnosed with Dementia/AD. I am not sure what stage, but after researching some websites, I would say moderate. She believes the people on the television can see her and she talks to them. She finally got to the point of putting the television on country music (not videos, but just where they play the music) so they can't see her. They are not real she says because they (the pictures) don't blink. She also is adament that people are living in her attic. My sister and I have tried and tried to tell her and try to show her there is no one there, but she KNOWS THEY ARE THERE. Can anyone help my sister and I deal with this psychosis? My mother lives alone, will not live with me or my sister and is in denial that anything is wrong with her. She is right and everyone else is wrong. We have tried to convince her to have someone should come stay with her, at least during the daytime, but she refuses. We are worried for her physical health living alone. Any words of comfort are welcomed. Thank you.

Cammy
It sounds like your mother is well past the stage where she should be making decisions about what's best for her.
maybe start by asking for a care consult from your local alzheimer's society and find a local support group (in addition to this forum..)..
You'll be amazed how much you'll soon know!

You have many activities and responsibilities in your life, hgw. Of course, you can't handle it all without help. So delegate what needs to be delegated. And focus most of your attention on the things you deem most important. And don't feel guilty about it. You're the coordinator, the organizer. The boss, so to speak, of your life. --Jim

Welcome, hgw,
My heart really goes out to those members who find themselves in the position of caring for a Parent who has put them through a "difficult/abusive" childhood. The guilt must be overwhelming at times. In my opinion, if your Mom's needs are being met; if she is safe and relatively happy; if there are caregivers in place, so she is not alone, I see no reason for you to NOT step back, if that is what you need. You cannot be the caregiver you need to be, if your Mother's disposition is as you describe.

I love Memaw's mantra-"I did not break my mother and I cannot fix her."

See my post (Bela)....I and the things I did were called stupid and this childhood issue comes up for me..My mom too always had to have her way...unfortunbately she lives with me...when she first got here it was all abouther...when are we going for a mocha (I work full time) first thing on Saturday mornings...when are we going out to dinner/Macys/malls etc. She notices all fat people and always has to comment onhow badly they look...she's been on a zillion diets in her day (not now of course)...she doesn't see the positive in the world either...actually often negative which causes me to feel depressed....she never sees the bright side of much....occasionally, the sky, trees, drives are nice...
My issue, I'm afraid to spend too much on caregivers (she could live alone except for cooking/driving and a few other minor things) because she demands she sees her bank statements....
whew
I hear ya....let's hang in there....how can we stay positive in the negative atmosphere? Let's brainstorm

Bela

My problem with Mom's moods was quite different. Mom was never difficult before the dementia starting progressing. When she hit that stage, I was at a total loss. Fortunately, I've been able to develop a good relationship with her doctor so I spoke freely to him. He actually recommended taking her off of the anxiety med she was on and put her on a low dose of Zoloft. It only took about a week before we started seeing a huge difference. Her doctor explained how meds can react quite differently in dementia patients. Mom still has some times when she can be difficult, but that is the nature of this beastly disease. For us, I've learned (most of the time) to not react and to remember that we are dealing with the disease and not the person. Fortunately, Mom doesn't remember the times that I get frustrated and fuss back. I remember, but most of the time I can forgive myself. As for siblings who aren't involved - to he** with them (can I say that here?). I have 3 siblings living. One helps as much as she can from where she lives. The other two who live here - nope. Which led me to the decision that they have no input into what I do. I'm sure they complain to each other but that's okay - not my problem. Mom's needs are my focus, not theirs. I am nearing the time of moving mom to a nursing home and that is a struggle for me, but it will be best for her in the long run. When you reach a certain point, you have to let go and let someone else step in. At least then the time I spend with Mom will be a better quality than a burned-out, stressed out hag of a daughter.

Thanks so much for all of your responses. I was in desperate need. You helped me to see straight again. I get so frustrated with my mom because she won't allow some forms of help that we all know would aid her. The denial and manipulation techniques make it very tough to get her some of the aid she would benefit from. The hardest part for me is the emotional slights that she spits out at me-or worse the ones behind my back. I have seen an elder law atty and he made it clear that for Wa state, she is able to make her own decisions up until the end. Her own mother went through this very same disease and I think that she sees me to be the daughter (that she was) that had to move her into a facility. Thanks again to all!

HGW-- I just googled "washington state guardianship Alzheimer's" and washington does have guardianship (they even have a public guardianship program for people who don't have family available to make decisions.)

Your elderlawyer doesn't seem to realize that she's been diagnosed with alzheimer's (Normal people are allowed by law to make terrible decisions for themselves but ALZ is different.)

I would talk to a different elder lawyer. If your mother won't sign POA over to you, at some point your family will have to go for legal guardianship.
I'm certain your local alzheimer's association can tell you more about this.

Believe it or not, I do have DPOA-! He insisted that she can still change/take me off at any time. She loves to take us on and off of both DPOA and her will. I suspect the problem lies within her refusing to take the tests they have attempted to give her. Once she started to score very poorly on the MME she refused to take it anymore. At one point, she agreed to take a full neuro-psych eval. but, the minute they got to the memory specific portion, she refused to do anymore. She has had some rehab testing done to evaluate her for driving and safety-and scored poorly. So, maybe because it's not a specific ALZ diagnosis-just dementia, anxiety, and depression. All imbalances were tested, not medications, not pseudo-dementia, not just deep depression/grief. I guess guardianship would be about the only route. Thanks!