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I'm not a full time caregiver to my mom, but I help my dad out a lot since she's retired and he's still working full time; since I also work full time, we tag team a lot and I feel like I often am used as her emotional outlet. Oftentimes I feel like I'm too young to be dealing with the issues my mom has because I just turned 31 but ever since a head injury 4 years ago forced her to retire, mom's health and emotional/mental stability has been on a decline. I often feel guilty for needing a break from her - because she'll constantly text, call, or email me. She's always wanting to come over and she'll even sneak over to my house on the premise of "dropping something off" and then stay for hours, even if we tell her we have plans or are expecting guests, then she'll act hurt, as if us having plans prior to her showing up announced was purposeful. If I don't answer a text right away, she'll go behind my back and text my husband. She often repeats herself, telling the same stories or asking repeatedly when I'll be picking her up to run errands. She will send novel-length texts multiple times a day (even when I am at work) and if I do not respond, will get her feelings hurt. Sometimes when I call to check in on her, she'll randomly start crying and I often feel like its an attempt to make me feel bad and come over to her house. Every time I'm around her, I am left feeling drained, negative, and angry because conversations with her always focus on what's wrong, and never anything positive. It's put a lot of strain on my marriage because my husband is my only outlet for my frustration.


My dad, who is a mental health professional, seems to have blinders when it comes to my mom and even though I've asked multiple times to get her into therapy or on medication because it is clear to me that she's depressed, he refuses to listen. They also wait until things get really bad to go to the doctor, which often ends up in ER trips and hospital admittance for my mom. I can't count the number of times I was called with the "mom's in the ER" message in the past year and half and had to leave work.


My brother lives across the country and hasn't been to visit in over a year, so I feel like the burden of care is fully on me and my dad.


To top it all off, I feel so much guilt for being frustrated with her because she's my mom, and she raised me. But her inability to look at how she talks, acts, and communicates with us is very trying. I know much of it has to do with the brain injury, but she has always been a more negative person. I simply can't imagine decades more of this. Is anyone in the same boat? What have you done to assuage the guilt and frustration?

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Many of us here have struggled as you have. For starters I recommend this book: Coping With Your Difficult Older Parent: A Guide to Stressed-Out Children by Grace LeBow and Barbara Kane - should be able to find on Amazon. Was VERY helpful to me in those beginning months/years. I also have a website specifically for those starting out caregiving, setting boundaries, etc., caregivingwithoutthecrazy.com. Hope this helps.
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After reading your poignant question and the following answers, I’m wondering if it isn’t your dad, and not your mom, who is possibly the root of some of your painful reactions.
My mom was a severe cycling agoraphobic, and also had a severe eating disorder. From my early childhood, that was my “normal”. At 85, she had a severe stroke which damaged her language functions, but stubborn as she was, she absolutely refused all therapy services and rehabbed herself, returning after a 2 day hospitalization to the home where she had lived by herself.
Five years later, she fell and broke her hip. Following hip replacement surgery, her degree of dementia finally both obligated and allowed me to assume her full time care.
As you can tell from many of the responses you’ve received, situations like your mom’s may be very individual in their original causes, but are not at all unusual in the resulting guilt, and the confusion about who should be doing what.
Is it accurate to infer from what you’ve said, that you may bear a heavy measure of guilt for her care without having the capacity to take action in managing her needs?
Relying on your dad to objectively address her management and care doesn’t seem to be working that well for any of the three (or really FOUR) of you, and attempting to meet “expectations” that you’ve put on yourself must certainly be exhausting AND guilt producing.
In my situation, I found a therapist, actually not a particularly skilled one, but AT VERY LEAST someone to whom I could vent.
What you’ve been doing is too much, and your father’s “blinders” are serving the on going lack of balance in the team.
The “water-on-stone” technique may help you, if you can convince yourself to try it. Restating a need calmly as many times as needed to get through to your dad is certainly a worthy and immediate goal.
When if ever was your mom’s previous comprehensive neurological evaluation? Affective status can (and should) be addressed then.
FINALLY, although you’re apparently doing the tasks of at least 3 1/2 caregivers, give yourself a pat on the back for getting this far, and I’ll give you one too. You deserve it!
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I agree about setting boundaries. It feels "mean" at first because your loved one will be unhappy. However, you need to for your own sanity. Tell your mom you will call her or to call you at a certain time and then turn off the phone or let calls go to voice mail until then. If she shows up unnannounced, tell her you are busy, and that you can make plans another time provided she calls first.

I went through this for many years with my mom as well, the calls, texts, hospital visits, self-created "crises", etc. and we recently moved her to a facility, but she has had many issues there too, and is currently in a geriatric psych unit because of another episode this past week. Part of it is her natural personality, like your mom very negative, depressive and emotionally dependent, but she went into a diabetic coma 7 years ago, and has been paranoid and delusional, and getting steadily worse since, now having memory problems too. It sounds like the brain injury your mom sustained may be causing some dementia like symptoms and exacerbating her already troubling personality issues.

Any chance you could call her doctor and let them know what's going on with her? They won't be able to discuss her health with you if you don't have a signed HIPAA release, but you can give them helpful information to relay to her doctor and ask if he/she could give her a referral to a neurologist.

I'd start there and see what they can do. A neurologist will be helpful in being able to assess your mom and determine the best course of treatment, and finding medications that can help.

In the meantime, take care of you and your marriage, and don't feel guilty about setting boundaries. She will probably cry and be upset, but just assure her you love her and will talk to her soon at the next agreed-upon day and time. Don't feel bad either about saying, "I have to go, I'll talk to you later" and ending the conversation if it becomes too draining.
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Wow anonymous. Very heartfelt. I can relate. My mom has all the anger & frustrations related to living in an assisted living facility. She began taking out all her frustrations on me, saying I don't care, you don't live here I do, you don't listen, just come in and sit down & don't talk. Being a bully. It was so painful. I finally had to make a decision. I knew I needed to be there to prevent negligent actions against mom. She is going thru a lot in there, however it was time to set boundaries for my own mental health. They will try and crush your spirit to get what they want. Your situation can be handled by you speaking to a family focused therapist. This is your dad's responsibility. Its his wife. If he is still able to work full time, then he is well able to make decisions about what kind of help she needs. You have to have a serious talk with him. He may be in denial and cannot deal with the changes his wife is going thru. Visiting Nurse Services can come in and speak with all of you, based on that evaluation will recommend a care plan & services to help you & dad. The main thing is to take an "action step, get your control back" so your equilibrium can get back in balance. Your mom realizes she's going thru changes & she's upset. It comes out as anger, repeated stories and comments. My mom does that too. Not all the time can medicine fix that. We just have to listen and somewhere in their story we will find something we can work with to soothe their discomfort. I learned this from moms psych m.d. just let her talk. We have nothing to feel guilty about. Your doing all you can. I know its hard. I had to run back and forth to er, too! Stay all night. Missed time from work. Guilt. I am better at it now because I began recognizing the manipulation. You will too. Get the help you need for you right now, talk to her medical doctor & family counselor, or Visiting Nurse Services. Move forward. Dont stay stuck in the pain of what's going on. The goal is balance & peace of mind. Hugs to you!!! Move forward!! You can do it.
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My sister had a brain injury too. She told no one about falling off a horse and getting hurt. Later she began behaving in ways that were not her. We chalked it up to menopause, depression, migraines and lots of other things! Little did we know about frontal temporal dementia!!! Or for that matter any types of dementia!! All of us including her were in denial!

Get a neurologist to examine her to see if she has this. Typically this causes their behavior to change, repeating then follows until speech is impossible. Now incontinence too. Many OCD habits.

If you do nothing else get her legal affairs in order while you can. See an elder Care attorney for medical and non medical POA, Directives etc!!

Good luck to you!! I am in the thick of it now and my sister is helpless!!
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I am SO sorry you are going through this, especially at a time in your life when you shouldn't be burdened with such heartbreaking and frustrating serious issues. I agree with the others about boundaries and self protection, in order to keep yourself in a healthy place (more on that). For the immediate future, what I would suggest is, if you haven't done this already, to find and schedule a meeting (for your father, you, maybe your brother can attend or call in if that works) with a licensed social worker who specializes in counseling families on geriatric, mental health, and other care issues such as your mother's.

My elderly mother (who suffered severe depression all my life) was hospitalized (due to a broken hip, surgery, complications) and she refused to sell her home to live in an independent living community, even though my father was exhausted and ready to downsize. The social worker I hired (who was worth every penny I paid her, both for this one session and the many useful Dr. referrals she provided, including a psychiatrist my mother now loves) professionally mediated the family discussion (which was tense; my father was untrusting, and my sibling participated by phone from a different state). I set up the meeting at my father's house and she came to us. Ultimately, everyone agreed they had to sell their house and move to a more suitable living arrangement. Shortly after my mother got out of the hospital/rehab, she saw the psychiatrist who gave her a new prescription and she did much better (though there are still issues that persist, including marital issues between my parents which the psychiatrist occasionally mediates because I stopped discussing this w/them). I plan to re-connect with the social worker in hopes she can see me for my own therapy, which I need.

Perhaps if you find such a social worker consultant and schedule the meeting, insist your father attends, there can finally be a healthy/open dialogue about your mother's situation and plan for needed care. Since your father is a mental health professional, he may be resistant at first but I would be as forceful as you can to get him to attend, as an ultimatum, so that he may finally realize the time is now to appropriately address her issues, particularly if another professional is raising this as necessary. He also needs to fully understand that this is having a negative impact on your health and well being as well as face the fact that a time may come when neither he nor you are around or able to care give on a daily basis. 

About guilt - something helpful I read is that it is much better to feel guilty than resentful. Of course you love your mother and want to help her any way you can, but you can't do this at the expense of your own health/well being. You are not a full time caregiver, nor do you have to be. You have other obligations. This is where establishing firm boundaries/limits, by making clear to both of your parents what you can/can't do/when. This is hard but I often say to my parents: "I can do X but I'm not available or able to help with Y." I screen/limit incoming calls, visits (weekly).  The calls from ER are extremely upsetting and turn your whole life upside down as you know. You must pace yourself & practice strong self care, self protection. This includes knowing when to detach (with love, there are many good articles on this out there). This year my parents had many stays in the hospital. During each crisis, I did as much as I could (w/a full time job & my own family), took off work, going during lunch/after work, calling nurses in the evening/morning to check on status, paying their bills, etc. However, after things stabilized, I realized I had to turn off my phone at night &  step away because I was severely burnt out. They wanted me to continue to come every day because it was a reflex to ask me, they had more things they wanted me to do, but I had to be firm and they have help. I feel healthier now even with the guilt.
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When you say you feel guilty...really what you are feeling is that your mom has encroached on your boundaries and has none of her own. So you wanting her to respect your's is misplacing what you feel and calling it guilt. Yes it is difficult when you love someone and wish to be kind and helpful but is very healthy and totally necessary to set boundaries with friends and family members. There is a great book about boundaries by Henry Cloud, PhD. Another thought is to see a counselor and express what you’re feeling and going through to get ways to act and cope. When you don’t have boundaries, we feel out of control and at the mercy of others. Is it easy at first? No..but each time you do it and you see it works it gets easier. There is a saying by Dr. Phil which is "we teach people how to treat us". When mom's overreaching or unwanted behavior is not reinforced, she will get the message.
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waterfalls Sep 2018
Yes this is true Harpcat. I recently in very small ways, began changing how often I see her but not so drastic that she would feel unwanted or deserted but by letting her know we have to make changes to help the both of us. Seems to be working. When the caregiving affects our emotional & physical well being its time to start setting boundaries.
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Try to convince your dad to hire a companion for her during the day when you guys are at work. I feel as if boredom is part of her problem, a companion could take her out for lunches and shopping or even just walks, anything that will keep her occupied. Try to set up times where she knows she can come visit you and be welcome to stay, if you have something planned tell her ahead of time you won’t be available, it may not stop all of it but I really believe the companion will help a great deal.
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Anonymous.......#1. You have NOTHING to feel guilty about. You have done what you could or can and that's all anyone us CAN do. #2. You are waaay too young to take this on when your own dad has blinders on. Unfortunately, you and your husband might have to block your mom from texting and give the excuse that something is wrong with your phones. It sounds harsh and no one wants her to get hurt but it's up to your dad to see that she is taken care of. If she falls, breaks something, or burns the house down sometimes that's what it takes for a person who is in denial to finally get some help themselves. It's possible he just doesn't want to deal with this and is letting you take on way too much. It's time to step back and let the chips fall where they may. Or you could tell your dad you are getting ready to get social services involved if he doesn't do something. Sounds like she shouldn't be left alone. How does she get to your house? Drives??? (don't open the door and tell her you weren't at home) And yes, I also have taken my anger and frustrations out on my husband of almost 46 years (thank God he took it. maybe he had earplugs in for the last 10 years plus he traveled for his job before he retired)(just this past weekend moved my 96 year old father into assisted living a mile from me instead of 17 miles)(should have done it 2 years ago). I also tag teamed with my dad taking care of my mom with dementia until his heart attack 8 years ago and she just went off the rails not understanding why he wouldn't get out of bed to take her to eat or why I was over there so much. I finally had to put her in a facility because I caught her starting to hit him. Pretty bad day since she was always the most loving and sweetest mom. My sister worked full time, only lived a few miles from them but had health and ppersonal problems of her own going on so she was no help. I let me being the only one that could do it do way too much and my dad became very dependent on me and still is. I have been worn down with all this. Driving back and forth, drs. appts., ER visits, etc. Calls for 3 bananas, ensure, or the ever popular favorite call.....my mobile phone isn't working. Yes dad, it is. TURN IT ON!!! I'm really proud of him for making this transition easy on me and I told him that. This man is a proud man. Still gets up and gets dressed and looks like a million bucks. Heck at 96 and if I go through everything he's gone through (WWII veteran, Iwo Jima) I won't get out of bed or brush my teeth. Moral of this long story.....(sorry about that) You and your husband are too young for this to fall on your shoulders. You didn't mention if you had kids or not but that just adds to more frustration. Work, marriage, then caregiving?? That's tough and no wonder you are frustrated. Please get some kind of help. Doesn't mean you don't care. You are just needing some direction and guidance on this since your dad is not.

Good Luck and God Bless
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Do not feel bad about having those feelings, it is normal. Do what you can, when you can and try to refresh.... Does your dad even discuss the "mom" situation? Make sure you have things in place, POA, etc... It gets much harder if you have to deal with who is in charge as things progress... This forum is a Godsend....
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It sounds like your mom has the same condition as my mom - an acquired brain injury leading to dementia - when she was in ER they did a scan & could see exactly where the damage was -

Now at 92 she still speaks clearly but makes little sense - she has picked up a habit of saying 'amen' all the time - the louder & more frequent then that's when she is in pain but also just off out of the blue [I think that's better than swearing]

My dad was a dr & in complete denial of her mental decline - I have found that most literature is based on Altzimers & that she had a different path - her injury was to the front right side & if your mom had a scan the drs could tell you where & possibly how it would progress

If she got that injury at work then she should be able to get help from her employer's insurance but if it was away from work then that may not be covered

Don't feel guilty for anything it is just life's bad luck - yes take time for yourself & don't feel guilty about it - we are supposed to honour our parents not sacrifice our lives for them - how did your mom deal with her own parents & in-laws? - above all try to keep your sense of humour
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waterfalls Sep 2018
Yes so true! Sense of humor, controlling the upsets, not letting it take over us but just be happy anyway. God will work it out!!! No guilt. We are all doing the best we can.
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If it's the same message, you already have answer. Set up your phone with an automated reply. It will help her feel you are paying attention. Also don't think of her as the mom you knew. Your father's behavior may sound cruel and heartless, but he understands his wife is gone.
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Psalms 51 will destroy and kill all guilty feelings and its hell on earth pull on the heartstrings. Read daily upon rising to face the day when tough emotional decisions must be made...for better or for worse. May sound crazy....IT WORKS AND NEVER FAILS TO WORK! You do not have to believe or not believe. Works for all who need to be free of a guilty conscience! Yay!
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While it's clear that your Mom has has indeed lost some mental functions due to her head injury, she still seems capable of some things, and perhaps you can get her interested in vollenteer work, maybe through your local Senior Center, or something like that, to take the burden of her boredom off of you.
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I would think with a head injury Mom is seeing a neurologist regularly. Dementia follows brain injuries. Mom is Dads responsibility. You need to tell him that Moms texting all day is stressing you out at work. That she just can't stop in. You and husband deserve ur privacy. Explaining to her doesn't seem to get thru. Maybe a daycare or a companion. Your Mom needs to be evaluated and Dad needs to get her there.
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You can’t get rid of frustration about behaviour like this, and you shouldn’t allow yourself to feel guilty when you have totally reasonable reactions to it. From your post, it sounds as if you are coping with most of your mother’s most difficult behaviours, and this may be why your father has blinkers on about it. Can you find a way to divert her queries to your Dad? He needs to see what she is doing to realise the impact on you, and her true situation. If he is like my husband, you can tell him until your are blue in the face and he is beyond bored, and he just won’t see it. He needs to experience it. You can’t shift things until your father is on board. Good luck!
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Your mom has some serious mental issues. If she had a serious head injury, they may not be all her fault. Does she take medication for anxiety and depression?

The “blinders” Dad is wearing have to come off and you’re going to tell him they have to come off or you’re cutting your involvement at least in half. Mom needs to see a neurologist if she hasn’t been in a while. She may even need behavioral therapy. If her issues are serious enough, she may even need to be somewhere.

She is holding you hostage with the myriads of calls, texts, unannounced visits, tears, etc. and Dad is letting her by ignoring the situation AND your own needs. He’s putting his own comfort over your’s. At some point, your husband is going to say “Enough!” And you won’t be able to blame him. Change your locks if you have to. Your house is your home and mom shouldn’t have free access to it. If she shows up at the door, tell her it isn’t a good time.

But do get her help. There’s probably many things about her behavior she can’t help and you need to know what they are so you can react accordingly.
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