Why can't it ever be about me?

Cwinter,

I have read Elaine’s posts for awhile. I must tell you that I have never once read of her insinuating that she was ever interested in her mother’s money or as you put it, “entitled to her assets”, so why would you even accuse her of that or even bring it up? That doesn’t make sense to speculate or insult someone.

The only thing she has ever expressed is her mother having enough money for herself.

Cwinter come take care of my mother since you are so wonderful at it. I’m not a kid I am almost 58 years old. She is mentally ill, a gambling addict, a hoarder, and an alcoholic and as she has gotten older it has gotten worse. She is 95 years old and it is worse. Until you have walked in someone else’s shoes, Don’t Judge!!!!!!!

Don't say "sorry" here! This is a place for ranting! What you need is support.

I relate. Only, I am unmarried and have no one at all to help or even talk to, unless I call a best friend (and I'm sure she's sick of my complaining).

Your Mom and mine have lots in common. The one thing that struck me is the fact that your Mom stays in bed 20 hours a day. So does mine. I asked a hospice nurse what I should do when she sleeps so much. He said, "Let her sleep." FINE!!!!! A rest for me!

You have way more physical demands put on you than I do. So far, my Mom dresses herself, showers herself, walks by herself, and toilets where she should (although not as neatly as I would prefer!).

My Mom just turned 100! The one thing you and I have in common is our Moms' fear of our leaving the house. When I have to go to the market or to the doctor, I tell her -- but due to her dementia, she'll forget -- so I leave a note where I am and about what time I'll be back. If I get into a conversation with someone (anyone, anyplace who is a sane adult!), and I'm late, my Mom calls me to find out where I am and when I'll be home. It's routine now.

I wonder if the self-centeredness is caused by the dementia. I've noticed it for years and it gets worse.

She has no life and I have no life. Why does she go on and on?

Wenmal my mother does the same thing!! Sits there and thinks all day long. I always tell her I’m not playing your brain teasers anymore. She waits until her toenails are out of control and calls me at work to tell me her toes hurt. I work the overnight shift and she is up all night and calls me at work at 3am. I said go soak your feet and I will call the doctor in the morning. I’m not leaving work now for this. I have to go back to work now. She brings it on herself. She is suppose to get her nails cut every 3 months at the podiatrist and she will wait 12 months and have them hurting!! She brings everything on herself!!

My mother always pulls her crap by saying if you don’t do this for me then I won’t do blank for you. Fill in the blank any way you want. This scenario use to go on all the time but I don’t play that game anymore. Now her new trick if she doesn’t want to bathe or wash her hair and I’m trying to convince her to let me help her, she will say GET OUT OF MY HOUSE OR I Will CALL THE COPS!!! Needless to say, I don’t play that game anymore either. If she wants to stink, then let her stink!!

Thank you Abby2018 I agree with you!! We were not put on this earth to take care of our elderly parents!! I would never move my mother in with me and I would never move in with my adult children!! My mother and I could never live with each other. She has mental illness. It is very hard living with someone with mental illness.

Wen, I totally understand what you feel. I’m going through the same thing with my wife still at home. I have had major remodeling done to our house to make it better for her. I have bought a different vehicle to make things better for her. I have bought a different bed to make it better for her. It feels like my life and even my house isn’t mine any longer. My sleep ( actually my lack of sleep) revolves around her. My daily activities are determined by her needs. It seems as if my entire existence is to serve her. I love her very much and am glad to be able to care for her. But I’m finally beginning to realize that for me to be a good caregiver I need to stay as healthy emotionally as I can. So I finally found a person who will take my place to give me a break when I need a mental break. The money I pay this person is so worth it. I still have to deal with getting depressed and frustrated, but not as much as before.

It sounds like you have already done so much. Please don’t forget yourself in all of this. I wish I had come to this point sooner. Both the caregiver and the patient benefit when the caregiver is in a healthier state of mind .

I wish you as much peace and contentment as is possible as you move forward.

My heart goes out to you. I hear you and understand. I was did everything for my husband before I got mental clarity and focus -- which took me 3 years and many health issues of my own I am still working through. Even though it is hard to do, you must ask for help and take care of yourself. The things I can share with you that finally made a difference for me... was to make a list of all the things that needed doing and ask for help from friends. For the things I felt I could not ask for help I hired in help from student nurses looking for part-time work. Starting with someone to be with him at night so I could sleep to someone to give me a break for 4 hours three times a week. Eventually I hired an Advocate to help me coordinate all sorts of help and talk with my husband -- who would listen to her more then he did me. He was always angry at me no matter what I did - it was never enough. It has been six years now and he is in a private home with 24 hour care. For me, it worked better to work and pay for the home then to try and take care of him myself. Everyone will tell you to take care of yourself -- please do what you can. I now have AFIB, and very low pulse and other issues that are very hard to resolve because of the extreme trauma.

It is about you, it's about the way you feel and how you are helping those in need. But also remember you are only human and you need time for yourself. It's time to say LET GO AND LET GOD. For years I have lived away from my parents and family in another city and I felled down on my luck so now I am taking care of all the elderly in my family. I took care of my Father just before he died two years ago all the time while taking care of my Aunt on my Mothers side who had just had a stroke. I was feel guilty myself for all that they had done for me while I was down and out. It's been seven years now and I have prayed and asked for guidance from the LORD above. He has given me the joy and knowledge that I can only do so much and when I get tired and need to rest to just rest. Everything will be alright and things will fall into place. I am not a nagging nor negative person like all the elderly people I have been taking care of but one thing I know is that GOD will take care of you whether you take care of them or not. Please be assured that your blessings will come and that talking thing over with others will give you a chance to be blessed no matter how hard it gets. This to shall pass. Be faithful and be good to your self also. If you were to be laid up for a while things will still go on. Its time to say change has got to come and I am going to change things around here. Treat your self and others will see that you are doing the best you can even if the ones that You are taking care of do not give you the gratitude that you deserved. Look into there health insurance and talk to there doctor to see what all can be done and also look for a person that can help you out for at least a couple of hours every once in a while and you will see that things are not really as bad as they seem because in the end they will be gone and then how will you handle that. Be brave and enjoy the rest of the time you have.

IMHO, you need respite badly, else you'll be good to no one, including yourself. Perhaps it's time for facility living for your mother because at this rate, you'll go nuts.

ohmigosh -- I was JUST thinking the same thing!!! I have tears in my eyes as I read your message.

We Mel are you still with us????

Sorry, but welcome to the ever eternal "mom guilt-tripping forum." Most of us have been there and most of us have learned how to deal with it. Thank goodness for this forum and for the input of others who have experienced this problem. You are not alone. That being said,..and hopefully helpful...let me say this. If you keep on doing what you are doing, you are going to keep on getting what you are getting. Mom is not going to change. One thing I would insert in here is that this is a scary time for your Mom. She is no longer in control of her life and living. Getting older is scary, especially if you can't take care of yourself as you would like and having to have to rely on other people to do it for you. Mom's only choice is to put the blame on you for her misery. Personally, I think that when a senior becomes blatantly selfish and combative, as your mom seems to be, she's barely holding on to her sanity. Perhaps a visit with the doctor to see if Mom should be receiving some medicinal help to suppress her anxieties or stresses would help.
Mom needs reassurances that, even tho she is a pain, she will be okay and that she needs to appreciate what you are doing for her. Easier said than done, I know. But persevere and be constant in your "me" activities. Give it some time, just be stubborn about it. Some Mom's have an inordinate capacity for guilt laying. Good luck.

I learned the hard way that you have to take care of yourself first. If you become seriously ill, then what will happen to your mother? Remember the first rule for mothers on an airplane. In case of an emergency, put YOUR oxygen mask on FIRST. Then secure the masks on the children.

When I finally listened to my doctors and blocked off some time for myself, a few things happened. First, the loved one I was caring for got angry with me for taking time away from her to rest, but I persevered. I told her that I was getting sicker and sicker and that I had to take time off to rest. She wasn’t happy and maybe didn’t care that I was ill but that didn’t matter. What mattered was that I cared and had to keep taking care of myself. It was working and I was getting stronger. The next thing was the crushing guilt for taking care of myself. She was unhappy with me and started acting out (pulling out all the cables from the back of the TV every time I went to rest). It got really hairy there for awhile but I persevered. I remember thinking, “How can this be right? Whenever I take care of me she’s miserable but I kept taking care of myself anyway.

I didn’t realize how hard it was going to be to focus on my life and my welfare. I didn’t think I had the right. Eventually I realized if I didn’t care enough about me, why would anyone else? It was up to me to care about me.

Hope this helps and good luck.

Theresa

Ranting is good, it's a stress reliever. I know, I've been there and done that for 13yrs with mom living in my home. It doesn't matter if they balk, sulk, like being a martyr, narcissistic or borderline personality it's always about them.

Three things I've learned from this looking back as mom died 5 months ago. One they have a difficult time letting go of their independence. They still want to be in control of their life. Declining health just doesn't allow for that. Your mom is losing control of her life. You do all the cooking, cleaning, laundry and management of her other affairs.The only control she has left is to control you by laying a guilt trip on you.

Second, being so stressed out taking care of mom didn't allow me to think clearly. I would of started to take care of myself emotionally a lot sooner before caregiver burnout surfaced. Get as much help as you can. I finally hired a part time service for caregiving. Mom didn't say boo about it. I think she actually liked seeing someone else in the house besides me.

Bottom line, it's your house, you make the rules. If mom doesn't like it then maybe it's time to consider other living arrangements for her.

The third, I wish I would of ignored half the things my mom said and did. I know it's easier said than done. Take the bull by the horns and do what you have to do whether mom likes it or not. She'll get over it. I was like you feeling my heart ready to jump out of my chest. One day out of frustration I said to my mom, "mom your going to give me a heart attack, her reply was "your too young for that". I didn't know if I should laugh or cry. You'll never be able to change your mom but you certainly can change the way you react to her.

I wish the best to you. I know how hard it is being a caregiver especially when it seems like there is no end in sight. Think about being a daughter again and not the primary caregiver.

You're allowed to rant.  That is the beauty of this forum. :-)

My suggestion is to tell her enough is enough. Tell her it is affecting your health physically and mentally.  Tell her you want to be her daughter again and not her caregiver.  Give her the choice of being involved in picking out an assisted living facility or letting you make the decision on your own. 

I know it doesn't feel like it, but you do have control over this situation.  You just have to park the guilt somewhere.  Once you remove the guilt from the equation the decisions become obvious.

I wish you well.

Your mother is not who she once was. She evidently has dementia and also feels very entitled to everything and wants to be the queen in the center the the activity and her behavior is affecting you very negatively. Ask yourself - do you deserve what she is doing to you and the feelings it causes in you. I doubt it. Then why are you allowing it and putting up with it. First I would sit her down and tell her of very specific boundaries. Let her know what you will and will not allow in her behavior and demands. Then you can either ignore her completely after reminding her she is outside of her boundaries or you can do what probably is the best - place her in a facility where she is cared for. Under no circumstances, ever, no matter, who, why, what or how anyone - especially someone with dementia - starts affecting you, your family and your way of life, you MUST put a stop to it at once. There is no other choice. You cannot fix them so there is no guilt involved. Think of yourself - this is your time to live.

Dear wenmal,
I write from the patients perspective. I was diagnosed with early onset ALZ 3 1/2 yrs ago and I hope you find my comments helpful. I have given this same advice to my DW and adult and minor children.
I am no longer able to work professionally any longer. I do receive SSI. I look at my job now as being in the role of doing everything I am still capable of doing. I can run errands, pick up stamps at the Post Office, shop for simple groceries, make lunches for my DW and daughter as they head off for their day. I am still able to wash dishes and put them away. I no longer cook when I am home alone while my DW and daughter are at work and school. Voluntarily I no longer drive outside of the town we live in. I'm just not comfortable venturing out on my own.
What I would recommend you do, is respectfully set limits with your mother about what you are willing and able to do. I would put an end to caving in to her every request.
Right now, your responsibility is to your DH, the two of you are entitled to share time and experience things that you would like to do while you still have the time to physically accomplish those goals. Travel, share time with friends, read a book or go to the movies. Sounds to me like it is time to move mom out and in to AL or memory care.
I have had the hard conversation with my DW and children about what I want for them. When it is time for me to go in to Memory Care, I want to be placed 100mi away from where we live. I want my DW and children to continue making their way in the world. I am 60, my DW is in her early 50's. I want it to be inconvenient for them to visit me, so they don't have to spend endless time with me who probably won't know who they are or what is going on in the world. We've had a great marriage, traveled throughout the world with our children, practiced our faith, volunteered in the community and enjoy life.
I would encourage you and your DH to set up your estate if you haven't. Prepare POA's, Medical Directives and Pour over Wills, and plans for your funerals. We were in the process of doing all of this when I was diagnosed. The legalese has been done for 3 yrs. We're going to tweak a few things with more detailed instructions on some wishes.
We enjoy everyday we have together and there is very little stress in our home. Perhaps you've done these things for yourselves, if not, please consider doing, so you can lighten the load for yourselves. I am sending up some prayers for all of you. I hope this is helpful. God Bless.

Have you considered a small home-based facility? I don't know about cost, but there may be some sort of aid available. Something that looks like an ordinary household but has people that can watch out for the residents. Then you don't have to feel guilty about a "nursing home" (that comes with a century-old idea of a warehouse).

I don't know about your parents, but my parents never "took care" of their parents.  My mom never had to play care giver while working full time and taking care of her own home and family.  I have no desire to be my mothers care giver, but I do it out of obligation.  I feel less angry about it since I sold her house and car and moved her into assisted living.  Still lots to manage, and I still do her laundry, manager her appts, buy her personables,  but it's doable.  It was not doable when she was still in her home...it just about killed me.  There is no way in hell I would have moved her in with me.  Do you have any other options for your mom...like assisted living or a daily daycare she can go to?  Think outside the box a little and don't let her guilt you into this "assumed servitude".

I have to comment on debbiesdaz response - My mom chose to have children and that does not obligate me to a life long debt to be paid to her.  I have an aunt who ran herself into the ground taking care of her parents.  People can live for years and years and years needing back breaking 24 hr care.  Everyone is not obligated to provide that to their parents because they were born!

Was she the way you describe about yourself when she was the one who's life was taken over when she was raising you? Did she resent giving up her life for you when you were growing up? I would be looking into counseling for yourself, as well as joining a support group for yourself, and using those outlets not only as time away from her care, but time to re-evaluate your feelings towards your mom. There is resent me there usually for everyone because it IS giving up things that used to be important in your own life before you became a caregiver of someone. You do have to realize that when they are dead and gone, you can resume your life like it used to be before becoming a caregiver. The caregiver aspect allows you to see the shoe on the other foot of what your parent or loved one gave up when you were the important one in the picture.

My personal hypothesis would be because parents, particularly mothers who did not work while children growing up felt because they made all sorts of sacrifices, like time with friends, etc, that their children should sacrifice all their time for them. As for cooperation, I am guessing maybe some receiving care do not cooperate or act out are paying back their children for driving them crazy when growing up, when, and failing to understand that it is easier to care for a newborn than it is a senior, if people really think about it. There is a difference when a child not grown acts out and drive parents crazy ( I am a mom, I would know this) and when a senior who has the ability to know what they are doing acts out or refuses to do what is necessary. A lot of seniors probably feeling, they raised their children and care for them, so, they can expect their children to care for them, or some people have children to dodge nursing homes when they get elder, not thinking or understanding not everyone can be caregivers.
However, like when parents became happy when their kids grown so they can do what they want, when they want, if they want, they should realize their grown kids need time for themselves, and if they got kids themselves, raising kids and helping elderly is extremely tough, especially when kids not grown or may be grown but with special needs comes first, and they are not getting attention needed because grandparent or who have you getting the attention when childhood and teens years are only for 18 years of life.
My thoughts anyway.

Go ahead and rant. Then realize that your mother will not change but you can. Assuming you can't move her out, get some help in your home. Let someone else cook a meal, do the laundry etc You don't need her permission to get help in your own home. Once you find someone, schedule some regular time off even if it is only 1 day a week.

You aren't alone.Insert my dad and we are in the same boat mostly.
I will say that my dad does get an aide three times a week ,and is receptive to any services that would assistance in his care and my well being.

When I have my own affairs or my son's to tend to thankfully I have an aunt who will come given advance notice of course and stay with my dad.I wont let my well being or my son's suffer while carrying for my dad.

I also have me time once a month for my own sanity.We shouldn't feel guilty with wanting to do the same.As well as getting any additional help you need.When your mom says why you need help just say everybody does sometimes and you want the best care for her.Goodluck

I feel everyone’s pain only a little differently. The details are different but ”parent burden” is very similar.

In my case I have finally arranged for assisted living for my mother. Move in is next week and can’t come soon enough! If my mother is awake, she constantly needs something so I am up and down all day and sometimes all night. She stays in bed all day thinking. She doesn’t watch tv, read or have any hobbies. I’m hoping she will participate in the activities at the AL and make some friends.

I learned something new that could be helpful to some of you if you were the spouse of a military person. There is a stipend available to help with AL costs. I am going to check it out for my mother. I don’t know any more than this now but you can search veteran spouse benefits for assisted living or contact your local VA representative.

Keep ranting. It will help your sanity.

Learn to "shrug" and try to ignore. You can't change your mother, so stop trying and just don't let her change you.

Good time for the Serenity Prayer.

Your mother sounds like a carbon copy of mine, especially with the fear of doctors, neglecting her health, and her hermit lifestyle.

I've been having problems with a lot of pain in my right leg (it's the one I brace on when I get her out of bed). When she asks me what's wrong, and I tell her my leg is bothering me, she launches into a 20-minute spiel on how HER legs hurt HER (her pain is always worse than mine, naturally).

If she hollers for me and I'm conducting business on the phone (or even talking to a friend), she says, "You're on the phone AGAIN? Why?" If this happens while the CNA is here for her twice-weekly visits, she tells the CNA, "She's ALWAYS on the phone! I don't understand it!" She can't accept the fact that I actually like people, have friends, and enjoy my contact with the outside world, because she never did.

And when she needs something, she'll call for me repeatedly until I respond. I've tried telling her to call once, count to 30, and then try again if I don't immediately materialize (if it's an emergency, she has a call button she can push). She still won't do it, and thinks I'm ignoring her. She can't figure out that I may be busy with something that - horror of horrors - doesn't involve her.

I know that part of this is due to her previous solitary lifestyle, and the fact that she now has the self-centered attitude of the invalid. But that knowledge doesn't really help with the frustration of being treated like a machine that exists solely to serve her.

Fight that guilt as hard as you can. It's not your fault that she is the way she is - it's hers. It sounds like you're well on the way to regaining some freedom and independence. Keep at it. Best wishes.

Your needs are important. So are everybody else's. It seems mom can not discern that your needs are not being met. Do whatever you must to regain that balance. Remind mom that you love her but that you need to do_______ for your mental/physical/emotional health. She may balk because it doesn't fit into her view of life, but do what you must and don't feel guilty.

This is not easy (as you already know) and many of our mothers are unreasonable and demanding. My mother does not live with me and never will simply because she sucks the oxygen out of life. I can only appreciate your living situation through your words and underlying unhappiness that is so obvious. If she makes your heart rate go "out of control" the red flags are flying. You deserve to live your life even though you made the hard decision to take mom in and care for her. This should not make you the sacrificial lamb to her whims and selfishness. Her personality sounds similar to my mothers and unless you set boundaries (and stay firm in implementing them) she will take over your home and your life. But beware.....the very elderly are stubborn and oftentimes dig in and only perceive their life through their own distorted lens and fail to recognize that LO's have needs as well.

If she is unwilling to accept the boundaries you set in place....remember, your house, your rules....then the time has come to consider placement in a care facility. You can't spend the rest of your life feeling "guilty". Know that you did your best and restore your peace of mind.

It can be about you. However, it's your decision about how to make it so. Maybe it's not just about guilt, could underlying fear that something might happen while you are gone be involved? Why not start small? Say an hour at a time? Meet a friend for coffee, take a walk, the possibilities are endless. It is important that you take care of yourself because if the caregiver crumbles, the ship sinks.