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When getting your nails done isn't enough. I'm really starting to worry about my own mental health. I wake up every morning on the verge of tears - a lot of times I have tears running down my face while pouring my first cup of coffee. My mom is my first thought when I open my eyes and my last thought before I fall asleep. Then I wake frequently thinking of...wait for it...mom. EVERY time the phone rings my stomach clenches up, sometimes to the point of getting sick. I tried giving my mom her own ring tone or even a seperate line to call but often where she lives call from her room or she gives the seperate number out so that doesn't work. If I just don't pick up then I worry about what bomb is waiting for me on the message. Last night one of my moms old friends called - we had to move mom - again - last Monday and the friend wanted to see how mom is. The friend was so kind - asked me how I was doing, said I was a wonderful daughter for all I did - things I haven't heard from my own mom in years. From mom I get nothing but meaness. And yes - I know it's the disease but repeating that montra just doesn't help anymore. Because I have an adult son with severe autism living at home getting away isn't an option. And frankly "carving out me time" is so difficult and stressful it can make things worst. I just want to go ONE DAY without my phone ringing, without having to talk to her doctor, her pt, where she lives...her,her,her! Short of running away from home, I don't know what to do. I want to clean my own house, go to the store without picking up something for her. I want to be more of a wife than the tired, drained bitch my husband comes home to - he wants that too, I'm sure.

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I wanted to run away, but it wasn't even my house. It was my late mother's.
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Sine I have done this (caregiving) several times for family I have some different ideas on this (walking away). One time I did walk and another kept my involvement severely limited). A deadly communicable disease was enough reason for at least severe limiatation. If it were't for my Mom it would have probably been a walk away. The first walk away was my grandmother who had my help for about 10 years on different levels but continued to trash me and threaten my living circumstances. I joined a very active church and was no longer on call 24/7. Later we found out that she had cheated on my grandfather so I had made the right call. Now I am at home with Mom who has cancer in remission. Since I have a all consuming hobby (genealogy) and pretty good computer skills I am not feeling particularly "trapped". As for sex life--my previous bad experiences with that keep me from feeling "left out". Mom and I have become friends and though we have our problems of course I seriously appreciate the emotional bond we have and the place to live. I don't feel I am owed being supported. Now I am OK with our mutual support.
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Yes, I've had to do this before with my elderly friend. He was still pretty sharp for his age so I had to outsmart him by finding some excuse to become less available. What I did was take it day by day and incident by incident. I found myself not able to take care of some of my own needs, and I just had to get up and just go do what it was I needed to do. Toward what turned out to be the last stage of his life, he wanted me there more and more and more, more than what was healthy for me. I already had a home but he was trying to jeopardize that by pressuring me to move in with him, which didn't work. I had a much bigger and better place then he had, and I just couldn't leave everything behind, I already had a life of my own. Sometimes you just have to get up and just go home. What you do is just get up like you're going to step out for a moment and just go, I did and it worked out very well. There came a time he started realizing I was serious when I didn't give into him and things started going much better until right up to the point he had to be forced into a nursing home, but not by me. Sometimes you just have to get up and simply walk out when you're feeling the most stressed and pressured. I came to a point of realizing I really needed to take care of myself and actually did
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I sorta ran away, but I was still in my same house, and my very elderly parents were in theirs just down the street.

How did I run away, I broke my shoulder falling in my office parking lot thus I was out of commission for 6 months, because at my own senior age it took bones longer to heal, and after the hearling 3x a week I had physical therapy because my arm muscle froze up. And of all things, it was the right arm and I was right handed.... so much fun trying to eat, I resembled a 3 years old at the table, what a mess.... my hair was a rat's next because combing it left handed didn't quite work, same with brushing teeth.... forget eyeliner and makeup.... and most of all forget writing, it resembled a toddler trying to write.

Thus I was unable to help my parents for 6 months because I also couldn't drive... no way was I able to bend myself to put the key in ignition, and if I could we would be sitting in PARK the whole time as I couldn't shift gears. So I had to cancel all of my parent's dozens and dozens of doctor appointments because they wouldn't ride with a stranger [taxi]. Talk about guilt.

I still remember my Dad, a week after the break, calling to see if I could drive him to the barber shop..... hello, wasn't anyone listening to me???

My parents figured since I was back to work that everything was ok.... my sig other drove me and picked me up, and the rehab doctor was right across the hall from my office. Oh, ever try typing one handed and use a Mouse with the other hand... that Mouse was scooting all over the screen :P
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I try to tell my mother jokes and funny stories when I speak to her on the phone. She laughs and loves it. She is 83 years old and has a horrible neurological condition and says she is in constant pain - no known cure.
She also moved 1,000 miles away from me 3 years ago. I do not have deep pockets and cannot afford to visit her there. All she ever talks about is herself and how much pain she is in. I try to listen wih a sympathetic ear but it seems like she doesn't care. She told me today she cries all day long every single day. Then when I call to speak to her she is busy with something else. So what can I do?
She will have to cry all day long every single day all by herself since she moved away and when I call to speak with her she is too busy watching TV, cooking, meeting friends or what have you.
I know she cries a lot and is in pain. She just seems angry at me for even calling. And heaven forbid if I have something on my own mind that I would like to discuss with her. She will not hear it. I guess this comes with old age. It's very tough.
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Lidia: Sadly, it will cease one day, but don't let the guilt kill you!
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At least she doesn't live with you. I relate to your feelings. I wish I could run away. I'm racked with guilt.
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Towards the end of mother's life, her telephone skills were horrible. There was one time when she didn't say hello for 5 minutes. I hung up and had the EMT's check on. Her response="I was just getting situated."
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Lol don, I was just thinking the same thing when I saw the numbers as I came here to post! The realization that so many people feel as I do has been surprising, comforting and disheartening to me - all at the same time! And this is just one niche in this wasteland called "caregiving". When I first posted this I never dreamed of this kind of response. Up until then I felt so totally isolated - I had so little knowledge of dementia. As stupid as I may have been - it never occurred to me that mom had actual dementia. I knew she was "off" but she has always marched to her own drum. When the word "dementia" was used about her, it was always some vague reference tossed in around medical issues. I just assumed "dementia" was an umbrella word for the "natural" deterioration of memory that comes with aging. It happens to everyone if they live long enough, right? I mean it's not like it Alzimers or anything, right? Sheez!!! I mean, I'm a fairly bright girl - how did I not know about this? So now I'm paying attention. Seems to me, other than Alzimers this subject seems to be a dirty little secret. And even Alzimers is mainly projected to the public as a memory issue - no one talks about the uglier symptoms. You know how I found this site? I was googleing "feces incontinence. One of moms new in home caregivers had called to tell me mom had unknowingly pooped herself and then proceeded to spread it head to toe and wall to wall when the caregiver believed mom when she said she could change herself. Seems this had been happening sporadically for a number of months - that the regular caregiver let my mom talk her into keeping it from me. But in the end, all I know now is there has to be thousands of people who feel like I do. And I'm lucky, mom has the money to live in a nice place with professionals taking care of her every need, while I provide for her every whim. When I read about the poor souls trying to take this enormous task on alone in their own homes it breaks my heart. I know we have social security and medicad and the few underfunded agencies to help but that just doesn't seem to be enough anymore. Memory Care has become big business. Retirement Communities are practically cities in themselves - someone's getting rich off that. As people are living longer and there is a drug for practically everything, the medical field is certainly getting their share of the pie. Yet there are no real answers for the people who come here - the people who can only find help and comfort from people who are as tired, frustrated, angry and hopeless as they are. For Christ sake - even in a society obsessed with celebrity most people don't know that Robin Williams had Lewy Body Dementia and that's most likely why he did it. His widow is trying to talk about it but seems people are more interested in the infighting over his estate. I only see the issue of Dementia becoming worse - but unfortunately there is no solution and not enough support or resources to help even the relatively small number of people who come to this forum. I don't have the answer - I wish I did.
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Wow 128 answers, you can see the number of caregivers feel the stress
Don
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I can truly say that I DID do my best, and then some. No regrets. I don't have to worry about her calling me, as she does not know my phone number. Same phone number for 37 years and I bet she hasn't called me 10 times.
We had over a foot of snow here today, with more coming. I think she is going to suddenly remember WHO owns the 4wheel drive SUV that can go ANYWHERE and who doesn't (brother). They often cannot get out of their neighborhood. Gonna be a long winter for her if her one last "driving friend" can't get up and down the hill mother lives on.
I did talk to younger sis. She is not going to even talk to mother. She is just going to show up at the surgeon's appt in Jan. Wow, that should be fun. "S" said she was too stressed with the holidays to do anything right now, and I trust she'll handle this just fine.
And yes, Depends duty is pretty nasty...mother is so many drugs, all of which are excreted in the urine...the smell is horrible, and those things need to go to the outside trash immediately....but they'll sit for days and days.
Yep, I do feel really relieved. Still smarting a bit from the comments she made, but those will fade. (She, no doubt, doesn't even remember)
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Midkid, that must hurt. I imagine there's some relief there, too, though. If you did your best while you were involved, you can hold your head high.
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Midkid--Isn't the Depends duty the worst thing ever? Ugh! Glad you're feeling better each day. Sounds like you've done your time. Let somebody else take over for a while.
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I literally went to Wikipedia to read what Caregiver meant. I was happy to see there was passages written that showed how a caregiver may literally "lose" their SELF. When I was in the ER today, I realized how I had let my SELF go. For the New Year and actually from this day forward, I know that I have to just separate Caregiver and Daughter and keep them separate. It doesn't help the fact that I live with my Dad, and that I came from an abusive household. However, I made this choice. Reading many of the entries each have given me hope that I will survive from my choice and start living. I have read enough articles that acknowledge that I am ok with the tears that I cry. I am also ok going into my car and screaming at the top of my lungs. I know that I have enough sense to release my frustrations that do no harm. Though it is very difficult it is true, in order to love one must learn to forgive. I thank each of you for sharing your stories.
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It sounds like other posters here are thinking exactly what I'm thinking, and that's changing your number and only giving it to the nursing home. Another thing I was thinking is to switch off your phone and consider getting yourself all separate phone such as a TracFone to take with you and your travels. Track phones are relatively cheap and easy to activate. All you have to do is get the air time cards for them and activate the TracFone on the spot. You don't have to be called for every little trivial matter, so I agree with only having the nursing home called you for real emergencies. Another thing that you can do is to block the number from which your mom is calling you, but unplugging the phone in her room is another good idea that was mentioned here. If you try this option, at least let the supervisor at the nursing home know before you do it. It may actually turn out but they may decide to completely remove the phone from her room. In fact, I've never heard of nursing home rooms having phones in the rooms like hospitals do. Given the circumstances you describe, it may actually be a good idea to not even have a phone in your mom's room.

Now to answer your question about walking away without guilt, just do it. Just think about your own needs like I did when I had to take care of myself. Yes, I have at times walked away to take care of myself out of absolute necessity. No, I didn't feel much guilt because I knew the need was legitimate. You just have to put yourself and your immediate household first, especially if you happen to have kids at home as well as a husband. Whoever is in your household is top priority, but you are ultimately top priority if you happen to be running that household and doing most or all of the work. You must be able to take care of yourself before being able to take care of anyone else, and this requires self-care. Let's say you're at someone's house all day from very early morning and you happen to be tired. It's one thing to have to walk away to get some sleep at your safe haven, but prioritize that if you happen to have epilepsy or other health issue that can be triggered by sleep deprivation. Let's say you happen to have seizures that are triggered by sleep deprivation, so you must prioritize your own needs so that you don't have a seizure. Focus on your immediate emergency needs and you won't feel guilty about walking away to take care of yourself. Think of the consequences of not walking away when you need to.
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I know what you mean, midkid. My mom will have one of her meltdowns aimed at me - then a few days later she'll realize she needs something from me. Mom will call all sweet as can be, and take one of two stratigies: either she'll own up to the tantrum but say it wasn't her fault as she's been in so much pain, or a nurse aid had been mean to her, or, or, or...but usually she'll claim memory loss and says she doesn't rememder a thing (maybe, probably not). Every now and then she tried total denial - it never happened. Really? For the past week she had been super nice to me - I've been trying to figure out what she's up to - I suspect she's gonna try to get me to bring her to my house for Christmas. Not gonna happen - but I will go spend some time with her that day. BTW - I've got an amazingly similar situation with the whole hip surgery thing.
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Rainmom--
I am all too aware of mother's little machinations. I'm done. Sis can handle this issue and if and when I feel like stepping in again, I will do so. Not until after she sees the surgeon, for sure.
Oddly enough, the reason I was up there last week was to help her "make" Christmas cards for her to send her friends. I had taken some pictures of her when I took her to visit the newest ggrandchild. She wanted to have those printed out into cards....and now, nope. She doesn't think ahead, our "meddling" is what keeps her going. I think this may sink in soon.
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Midkid - at first I was going to say "sorry" but I think I will change that to Congratulations! You have been given a chance to reclaim your life - a fresh start. But don't be surprised when little sis AND your mom try to suck you back in. If it comes to that - at the very least set new conditions and boundaries that will work for you - and stick to them!
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Well---I got KICKED out and am dealing with a little guilt--less and less as the days go by. Mother (almost 86) got mad at me for meddling in her personal affairs and telling my siblings because she likes to keep all of us in the dark about a lot of stuff. She was trying to sneak in a 2nd hip replacement surgery again without our knowledge--knowing we'd all blow a gasket. She had one hip replaced 18 months ago, did a really poor rehab and for some reason known only to her, decided to pre-emptively have the 2nd hip done. She walked with a cane prior to surgery, relies 100% on a walker now. No pain in the "new hip" and seemingly minimal pain in the "bad one". Last summer she tried to get it done and we sibs found out and she was cowed by the pressure (so she said, in truth her GP wouldn't sign off on her)..now she's trying again. I found out about her trying again to do this and ratted her out to the other sibs. Now I am persona non grata. She told me to "butt out, get out and don't let the door hit you on your way out."
At first I felt just horrible....after several days, I am feeling lighter and better. I have no plans to visit her and lobbed the ball of "mother care" to my youngest sister who has done nothing to care for mother.
I used to have horrible guilt if I didn't get up to her place at least twice a week for general maintenance and cleaning....I hope sis appreciates what a pain this is...those depends need to go out daily...and I'm not doing it.
Yeah...a little guilt, but it's fading fast.
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Oops -- Donr827!
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Ribbman & Don187, I hear ya. My mom was never a drinker, never cared for fast food or processed food and quit smokng in the late 1970s. As I despair over her current mobility issues and impaired reasoning, a little part of me wonders if she'd have been better off smoking herself onto an early grave -- like my father.
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Right on Ribbman!
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Well said Ribbman, they are making all parts of the body last longer except the brain. As a caregiver for my wife the life I wanted to live is gone. Life is not a lot of fun.
Don
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The thing is, we're seeing great advances in longevity, but we're muddling along with the same old practices and attitudes about elder care from a century ago (or longer!). The demands placed on people simply to support themselves and live, can make the added burden of caring for elders, especially when there's dementia and/or mental illness involved, can become unbearable.
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I see I posted a comment here back in the middle of November. My story was much the same as many of you ... no matter I gave up home and career to care for her, no matter what I did, nothing was ever good enough. The three years she spent in the NH she refused to leave her room, associate with anyone or try any activities, just spent each day being mean and vicious and attacking me by phone or in person at every opportunity. An A1 narcissist, she'd been like that all her life but four years caring for her followed by three years in the NH was pure hell.

At the time my mother passed my blood pressure was dangerously high, I was supposed to go back for a recheck and if it was still high start on meds, but I decided to give myself time to breathe and just be me.

The palpitations, hearing my blood thumping as I tried to sleep, and the sick thundering stomach 24/7 have gone away. Christmas in a couple of weeks. I have no family and most friends are far away. I get invitations but, as usual, it will be me and my beloved dogs, eating things we shouldn't, curled up by the fire watching old movies.

I'm giving myself until after New Years then I'll see how I feel about getting the BP rechecked. In the meantime I'm puttering around home, doing just as I please each day and enjoying the peace and quiet of country living.
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So mom called at 9pm last night. Phone calls in the evening/night are usually the worst ones. Things have been a bit better lately - and of course I answer the phone. Mom is all worked up, seems someone stole the side railings off her hospital bed! About two weeks ago mom was falling everyday - sometimes twice a day. I believe some of the falls may have been legit but mom did tell me that many times she laid down on the floor on purpose. Seems her "plan" was for these falls to get me to move her into my home. Not quite sure how she had reasoned that all out in her head - but that was the goal. I, of course can't get her to understand that if anything falls just reinforce why she needs the 24 hr a day care that I can't provide at home. Anyhow - the facility asked me to get her a low hospital bed as part of the "no falls" plan. The bed was delivered Tuesday and I saw it Wednesday - all good, right? Then the call. Mom was all worked up over someone stealing the railings - it never had railings! Of course I try to explain that to her and of course she just wasn't having it. Mom asks to speak to my hubby. Mom adores my husband so I figure he can try talking to her. I marveled at the way he handled her! Hubby has no experience - beyond my mom - dealing with dementia. Yet he was perfect - listened, reassured, didn't try to reason, told her we'd get it all figured out. After about 5 minutes she was calm and satisfied with what was said and hung up to go to bed. My hubby just took it all in stride. The man is a saint, I swear! When he married me he knew he was getting a disabled child in the package but no one could have predicted this 5 year and counting, ordeal with my mom. And what a basket case I've become. Today I'm off for my regular Friday visit. Maybe the bed rails will be forgotten, maybe not. I don't get how they even became an issue - who knows - but I get the feeling today is gonna be a klonopin kind of day.
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Lovesdad....I hope you are having a better day too. It seemed like you were angry and exhausted and it came out in a way of condemnation for many out here, so thank you for explaining you had a bad day. I'm a long way from retirement still, but I can tell you the stress from my hub's cancer diagnosis and treatment pales greatly in comparison to caring for two elderly parents.

There are many stories of marriages failing, caregivers getting sick or worse dying, so we know tomorrow is not guaranteed. We can't wait out our parents and defer our own lives because sometimes that is cut short and the window of opportunity to really live is missed entirely which we've seen here. Just reading those posts are devastating to me though they are a complete stranger. It's just sad.

One night my hub and I both starting tearing up after we left our parents. Not because anything was wrong, but because our lives have been greatly impeded upon and it just seems to get blown off by them sometimes...very frustrating. I've seen where some say a parent wouldn't want us to give up our lives if they were in their right mind, and maybe that's true I don't know. But my parents are still with it enough that I honestly think our well being is a distant second compared to their every need. So, next month, hub and I are taking a week after my birthday and going to Vegas...for an entire week. I've already arranged to extend the companion care during the time. They will be mad, that's too bad. We are tired and stressed out and my patience seems to get shorter by the day.

Just wanted to offer this additional perspective along with others here. Please come back and let us know how you're doing and hope you take proper care of yourself to know the warning signs when you need to be first and do that for yourself and family. It will also help ensure you can be there for your dad going forward. All the best.
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I have to agree with Carla and others - everyone's situation is different, but it's just not realistic to think that each of us should automatically sacrifice our lives to care for our parents. There are so many extenuating circumstances that make a "one fits all" approach completely impossible.

And of course as humans we do have free will and have a right if not obligation to exercise it.

LovesDad, I hope today is a better day for you.
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lovesdad - I know you apologized for the tone of your post yesterday, but I have to take issue with the content anyway.

I couldn't disagree more with this statement "It's her time now, not yours." In my view, most of our parents had their time - their 15 or 20 years of leisurely retirement when they didn't have to think of anybody but themselves. My mother certainly did. She retired on a shoestring at 58 and spent the next 20 years flitting about with friends and activities and rarely giving her family a second thought. Then when her faculties start to fail she's back in the picture, expecting her children (mainly me) to tend her needs and throw in whatever extra money she needs to maintain her lifestyle.

I retired 2 years ago and I have not had a single day of carefree leisure, a single trip or vacation, nor is there any forecast in the foreseeable future. Mom's needs have taken over my life, making the kind of carefree retirement she had impossible for me. As far as I'm concerned, she's had her time. This is my time now. And she's stealing it with her lack of planning, poor choices, and sheer selfishness.
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As I read through this, it could have been written by me. I too check my phone constantly for new messages. My stomach clenches when the phone rings. I have been told by my niece to "put my oxygen mask on first". My sister, who is in another state and visits infrequently, is good at emailing me inspiring messages or articles, or telling me to do something nice for myself. The guilt is ever present, isn't it?
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