[Warning: Extremely long post.]
I'm my 64 y/o mom's healthcare POA; she had a major stroke last year and is paralyzed/in a nursing home currently that I'm trying to get her out of.
I'm 44 and single, work from home and moved back to my home state when she had her stroke last year. My mom has some mental illnesses (depression/anxiety/hoarding/undiagnosed PTSD due to a major traumatic event) and our relationship has always been..'different'.
First, let me say that the past year has been SO challenging. However, the past few weeks I personally think we've made great progress as I've checked a ton of things off of the tasks list that had been taking months to do. **Let me also say that we normally have way mostly good days despite all of the 'issues' from the past and the news ones going on as a result of the stroke**.
However -
This past weekend wasn't the greatest. Although I spent almost the whole weekend with my mom (visiting with her, taking her out places in a city an hour away like to the park/restaurants, etc.) she was just having a few bad days and many of you know what that's like. (Why does this always happen on holidays by the way???) Crying. Complaining. Agitation. Picking nonsensical arguments that just go around in circles. (She told me I don't know how to take care of her because I never had kids. She KEEPS saying I can't do a, b or c because I didn't have kids which is a new statement she makes post stroke so I had to tell her this weekend to STOP making these 'because you didn't have kids' comments anymore.)
Anyway, in reflecting over this past weekend, I've been going through the motions a bit I guess you could say. I'm a bit irritated that my mother couldn't just try to practice more gratitude and enjoy the weekend she had out. I'm kinda hurt by these constant comments about not having kids despite me knowing this has everything to do with suddenly something going on with her (perhaps her coming to the realization I'm officially getting too old to conceive and won't be giving her grandchildren perhaps?). I'm physically a tad exhausted because of all the prep work I did in order to be *completely* free to spend ~3 days straight and out/about with her. And ultimately, I'm feeling both "loss" and "lost". I feel the loss of the parent I once had. Again, she is not always mean - she's 'ok to nice' 90% of the time. But when she is mean, it hurts. And I feel like I'm getting a slightly new mom if that makes sense, and that the new one is different because they never made some of the comments the one this one makes. I'm feeling "lost" because I miss my old apartment and city...BAD. I loved the city I used to live in and I never wanted to move back to my home state and I'm still adjusting to being back in this place; to be honest I don't want to be living here in another 10, 5, or even 2 years. I had a life I really liked that I left. In addition, I suffer from my own depression and have gained 25 pounds in the past 7ish months. Going from an 8 to a 14 when I was a 6 most of my adult life has me looking in the mirror and not knowing who I am looking back at these days. (I'm only 5'2".) Despite the depression, I always did love one thing - travel...and now I can't seem to get that feeling of 'wanting to travel somewhere.' It has disappeared. It's hard to describe but I'll just say that I want the desire to take a trip but instead all I feel is guilt that I'd be doing something I love while my mom is sitting in a horrible nursing home and can't join me. So instead I just feel...nothing. Emptiness. I can't think of really anything I 'want' to do anymore. I'm starting to feel like I'm losing my mom but also somehow, some way, losing my own sense of self as well. And I don't know why this is happening.
This was a (very) long vent. But it's also me seeking to get answers on this question - who can relate?
14 Answers
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I am grappling with the timeframe (how long will this go on?) as well as the question of whether I want to continue this way; whether I should live my life according to what’s best for others as I’ve always done. Many days I feel like this is the right thing and the best thing if not the only thing we could be doing. But just today I thought: this is too much sacrifice for all of us. Last winter, I had fantasies of running away —before my son moved in to help AND I got on antidepressants. These fantasies are resurfacing.
I just planned a ten day trip to Europe to visit two friends, and I’m using my last bit of money for the trip. I’ve never travelled alone before, and I have not travelled much in general. So I’m very happy about the trip, but not sure what’s to come after this summer.
That’s me in a nutshell. I can relate to loss—of a partner while you’ve lost a parent. I also feel lost b/c I know where I want to be but I don’t know how to get there.
I know my situation is really privileged since my kids are supporting me, but I want freedom & independence.
I guess my advice is to accept that your mom is gone, plan for yourself and how caring for her fits into the life you want. Do you want to say that you cared for her until the end, if not, until what point? Think far ahead and plan backwards. That’s what I need to do.
It helps me a lot to remember that he’s not going to get better, enjoy the moment, but also remember he’s no longer a supportive partner or someone I can rely on for anything. He’s totally dependent even if he acts like his old self from time to time. Sorry if this seems brutal.
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You are so young and you need to take control of your health because if you get sick there won’t be anyone to take care of you and her. If you continue down this path with your hypertension you will end up like your mother with a stroke. You are so young, and you have many, many years ahead of you. Please take care of your health first so you can be there for your mother.
I totally agree about the physical activity being the one thing I have control over and that can help me tackle the issues with my mom. I do look forward to being able to fit back into my clothes at some point this year God willing.
To add to the weight issue, I have very very high blood pressure myself (stroke level) that started in my early 20s but mine is controlled via meds. I did some research recently and realized the birth control I'd been on for 2 decades might put me at a higher risk of stroke. So I talked to my doctor about it and she immediately agreed I should come off. Only issue is I have horrible (teenager like) acne and that's why I got on it in the first place. I'm going to see a dermatologist as soon as I can, but add having acne like I was 15 again to the weight gain...at 44 years old at that...and again..I just don't recognize myself anymore.
So...1 day at a time. I definitely feel loads better not just when I've done a day of working out, but when I've been able to eat fairly well. I'm not cutting out much right now outside of sugary drinks (which I'm not big on anyway) and white carbs (bread/pasta) but I even still allow those rarely. I've never been a huge 'dieter' so I won't be doing that. I made a cherry crisp from scratch last week but I use home made oat flour and I freeze small portions of it and only eat a bit here and there.
Long story short, I'm trying to make small changes over time so I totally acknowledge the progress will take quite a bit of time as I am looking to improve my nutrition and fitness overall so I can be as healthy as possible to be able to take care of myself and ultimately also my mom.
Thanks again for your post.
Someone mentioned long distance caregiving. It is possible. I'm taking care of my mom from WA and she lives in CO. I am 44 and mom is 75. I'm doing this solo. You are currently near your mom so you can get everything setup to facilitate long distance care and then go back to where you had joy in life.
My mom and I had conversations about what she wanted, what I could/would be able to provide. We set up a living trust years ago with me as successor trustee (although this hasn't been as helpful as I thought), I'm her MDPOA. I found her a good AL and moved her in within a 2 week period after an emergency. I'm now working through the frustration of trying to sell her house/stuff while in WA with a trip back planned for late June.
Get your mom settled into a new NH that you like, find a trusted caregiver for extra visits if you need it. Set up the legal paperwork if it hasn't already been done and mom is willing/competent to do it. Then MOVE. Set a date and go.
I know it's easier said than done but it CAN be done. Make a new to do list and work at it a bit each week.
Good luck.
I get it. She needs support. A lot of it. You may already know my story which is that I won't bring her home unless I can get a live-in caretaker for her. Even if I find one, by that time there is no guarantee I will go that route as I am focusing on also just simply finding a better NH or an ALF for her. I have read a lottttt of caregiving posts here and elsewhere and I understand the reality that her care needs would likely increase over time meaning a limited amount of time in the home with me anyway, as well as a costly waiting period if she were to decline and need to go back into a facility. All very very real considerations.
Please set boundaries and live your life as much as you can . I curtailed my own life for many years and when my mother died , on top of grief , I was unexpectantly hit with such anger towards myself for neglecting my own life, career, (family at home ) .
Keep in mind that you can be a caregiver from a distance if you would like to live somewhere else . Whether you move or not , imo it’s not a good idea for you to have Mom live with you 24/7. She needs far too much physical care .
The lost feeling is because you aren’t living your life . You are too busy trying to improve your mother’s life . I understand getting her in a better facility . But aside from that you have to live your life. Don’t spend the bulk of your life trying to make your mother happy . I did that and when she died I had to pick up the pieces of my own life and learn to live again . I forgot how to live . I was lost because I wasn’t looking after my parents anymore ( Dad died first ) . I thought when they passed I would be free to live my life again . But I unexpectantly didn’t know how . I still struggle . Caregiving for my parents gave me an anxiety disorder . Since you already had depression before your mother’s stroke, my advice is ….do not have her live with you . Best of luck .
Regarding your response to AlvaDeer, you are correct in your interpretation of what my therapist is getting at. I just mentioned this in another response a few minutes ago, but my therapist and I started working together prior to my mother's stroke. Back in those days I was casually considering moving my mom in with me but I had a lot of reservations for many reasons. Then my mom lost her house and I was considering it even more strongly..then the stroke happened right after the foreclosure/official eviction and..well, here we are now.
I do have a lot of conversations with my therapist expressing frustrations/upset, hurt, negativity, indecision, fear etc. etc. that all began prior to my mom's stroke that often surround my relationship with my mom. Clearly my therapist believes that perhaps I'd be experiencing less of these things should I focus on mourning the loss of 'never ever having had a normal...maybe even nurturing or healthy mother-daughter relationship' as she believes healing from that by realizing/understanding and mourning would help me to move forward in certain ways such as by getting me closer to acceptance of certain things, 'letting go' in certain areas, learning how to have better boundaries which could perhaps help on the 'enmeshment' side of things, etc. etc. Just giving some clarity regarding the therapist's rationale; both you and AlvaDeer make good points.
However , I have been recently thinking of trying a new therapist as I am having more difficulties again since helping my husband deal with his father with dementia , which is how I found this forum . I’m thinking if I went maybe I can get hubby to go as well . He did not have a great relationship with his mostly absent father and is now feeling stuck . If you are stuck , I would not stay with that therapist .
I moved my mom to AL in April and I'm going through waves of grief, acceptance, anger....rinse and repeat. It helps me to go back to logic when I get too stuck although I allow myself to cry and wallow a bit as needed. My logic tells me that mom is better off where she is at, when she says something hurtful that it's likely the dementia (although some of them are her honest opinions that she is no longer able to filter and I just try to accept them and try to become better at caregiving). I am also reaching out to get some therapy guidance for the first time in years.
I agree with finding a new therapist. If she is no longer helping you it's time to move on. Maybe she was great at the beginning but perhaps she also met her limit with her abilities to help you and can't or won't admit it.
I wish you well. Caregiving is tough as the veteran caregivers on this forum know. Don't lose yourself-give what you can but set limits. You're being a good daughter but that is not your only purpose in life.
Everyone is giving me more to think about with respect to my therapist specifically. Not sure if this is helpful or not, but because of my mom's mental illnesses, my therapist has been mentioning the grieving part of 'never' having hard a 'normal' mom since almost Day 1 I started seeing her (way before my mom's stroke). She has stated it's because I treat my mom as someone I can have rational expectations for when instead I need to see/accept her as someone who is irrational, can't take care of or make decisions for herself, is unable to to understand or empathize with me most of the time, and that ultimately therefore never served in the 'mother role/capacity'. I guess for my therapist she has always seen my inability to maybe grieve the loss of never having had a normal mother-daughter relationship in life as a hindrance to me self-actualizing/moving forward in life, hence she always states my goal to grieve the loss of never having had a 'true' mother that was there for me and acted in the mother sense should be a major focus.
I understand both your and AlvaDeer's points and will truly consider all of this going forward as I do indeed really want to get the best out of therapy that I possibly can.
GUESS WHAT. You haven't lost her. She is only 64. As I said she is 3 years older than my DAUGHTER and she is gonna be around a long long time. She's not gonna be lost for likely another 3 DECADES.
If we are talking mourning HER LIMITATIONS? That's a whole other thing. But Psalms, albeit your Mom has more limitations than most, we ALL GREW UP with parent with limitations. Our brothers have limitations (right Lisa?) . Our spouses have limitation. And we still have to live with those limitations and not sacrifice our own lives to them.
So I am thinking your therapist is dead wrong. You can't mourn a parent who is actually VERY MUCH ALIVE and in your life to the degree your Mom is. You are right about the enmeshment.
A lot of therapist are stuck in psychobabble. Like I said, get one who will tell you "You won't find me to be quiet listening to your same old story every week; that's a waste for you AND for me". Get one who promises to shake your world. To play the violin when you start the same old song. Get a therapist who lives in the real world.
Like I said, to tell you to GRIEVE the loss of a mom who is VERY VERY MUCH ALIVE sounds like psychobabble and magic to me. Incantations won't work.
You Mom had and has limitations. But you are 44. All grown up. Time to take the reins and drive your own life.
As you are well aware there is such a thing called "anticipatory grief" which a lot of us have experienced during our journeys with loved ones who had/have dementia or even a stroke or major health crisis, as with all of those things there is loss that needs and deserves to be grieved over.
I believe that is what Psalms therapist was referring to when she stated that she hasn't yet mourned the loss of her mom.
To me that makes perfect sense, as my late husband had a massive stroke at the age of 48, only a year and a half after we were married and of course I mourned for not only what he lost, but what we as a couple lost as well.
And then of course years later when he developed vascular dementia, I once again mourned what he was losing but also knowing that I would be losing him sooner than later made me mourn or grieve once again.
So there is something to be said to be able to mourn the loss of someone though they still are alive.
It's very freeing and healing when and if it's acknowledged.
I did actually have a sort of sit down with my therapist. I told her that I felt I was doing quite a bit of 'venting' and that I wanted to understand where she thought I could focus on in order to improve my quality of life, and any areas she felt would be currently priority for me to focus on. Her 'angle' was that I have not grieved the loss of my mom ever and that I haven't done the work to grieve the loss of her which is the reason I am not able to move forward. In other words, she has stated that she and I both recognize the need to be future-focused, but in her opinion in order for me to do that I need to take steps to grieve this important loss first. That was her side of things and why I stated I feel a bit stuck because it is not clear to me (yet) in therapy, the 'how' behind what I'm supposed to do to grieve so I can indeed move forward according to her.
I will give all of this some deeper thought. My next session is tomorrow actually so you've inspired me to ask some more detailed questions surrounding what my goals are here and her intentions to support in getting me there.
I am indeed aware of my mom's limitations not being my fault. However I do recognize that I am perhaps enmeshed a bit with her which could be leading me to unnecessarily sacrifice certain things to my own detriment that do not add a sensible ROI or enough value so to speak to either one of our lives. I'm honestly just coming to this understanding very recently and am therefore trying to work through what all of this means for me (and her). Things like setting more or different boundaries and learning to separate my feelings from hers because I have always 'absorbed' the feelings of those around me. Again, things I'm just coming to awareness about.
There have been some good things that have come out in the last year, but it's not the things I can control that are the issue. I can stand all the stresses without consciously breaking down but it feels like physically something is going to give and I have no control over that. Like I'm going to wake up and find that the stress has caused my bile ducts to disintegrate or whatever. That's kind of funny but I think you get my point.
I'm literally taking it hour by hour. Like I said, I did very well in the the past. I don't know why this happening to me now but at least I have something that gives me hope. Thanks again.
My father recently went into assisted living and while everything is so much better now for him I feel a loss and grief like I never have or could have ever imagined. At one point, for a moment. I went into a different reality, a type of spiritual reality?, where I saw that life is not just what we know. It's also magical, fantastical, in a way and I saw clearly what some of the observers of mankind throughout history have said about loss - that it also ushers in a new period of your life that was just begging for change.
My brother's poor character and values came out during the last year and our lifetime of a relationship is over. My career took a major hit. I have become depressed but what's keeping me somewhat together is the fact that I did well in my past and there's every reason I should be able to do well in the future. But the reality is I'm in very bad shape right now. I always knew that environment is so important to well being. This place is very difficult for me.
In part thanks to this forum I have learned to not let other's comments and behaviors bother me. I'm trying to live my own life and while it's not going good right now my input is there, and that really matters, regardless of the outcome.
I would say if you just "hang in there" and try to do your best things can go really well for you in time. Maybe you're in a new stage of life and you just need to work things out now. You'll probably travel again and you should get back to good feelings.
I walk every day for about an hour and it helps immensely. You may want to try some different activities in your local area and maybe meet some new friends. There are lots of people in a similar situations or have gone through similar situations and genuinely care. You can always post to this forum, too.
I am wondering if you have any plans to move at any point in the future since you do not like where you are currently living and since your father is taken care of in the ALF?
That is so true that loss can usher in various life changes. I will say that some of the positives are that I personally know that my patience is not just being tested but actually strengthened during this time. So is my empathy. And although sometimes things are bad, I am now in place where I'm able to share memories with my mom I hadn't done before. And have quality time for her in addition to being a strong beacon of support. So there are positives. Overall what is being increased the most is my gratitude. I thank God now many days as I'm showering that I can do it alone. And that I can cook a meal by myself, drive, use the restroom, change my clothes, go for a walk, leave my house when I want...it is now a daily thing that I find myself just being immensely grateful for SO many things I took for granted before. Really.
I am very sorry to hear about your brother :( I am now 'officially' estranged from mine, who had told me a few months before my mom's stroke not to ever contact him again about her. He meant it as he never responded to any of my requests to speak to him about her condition so the last time I spoke to him was before my mom's stroke. I does hurt, I admit. And my job also took a hit when I took 2 weeks FMLA off and upon returning did not 'immediately' produce - I quickly found out how people would protect others at work who were personal friends (by giving them 'time' to copy/'get back up to speed') but that if you weren't in such a circle, your job would be on the line. I turned things around at work but it is still challenging knowing how quickly things can get derailed due to personal circumstances.
Environment is indeed so important. I never wanted to return to this area due to my own trauma. I have no motivation to establish friends/connects here because of the fact that I don't want to even stay here. But social interaction is indeed important; I get it. My thing used to be the gym so I'm back in it a few days a week for now, and on non-gym days I will often go walk for 5 or 6 miles. You're right - it does help immensely. I am very glad to hear that you have found good support on this forum. I perhaps should visit it more often myself. I would like to find some type of support group in person or virtually/online that meets via webcam regularly. Another poster mentioned a grief support group which I think may be a good idea.
I hope that you continue taking care of yourself and that things do turn around for you but that in the meantime you are able to eek out some positive things and find moments of joy and fun to support you through this chapter of your life.
So of course you're feeling a bit lost, I would be too. It's a lot.
I think finding a good therapist or counselor(in person)would be helpful at this point, as they can help you work through all these feelings you're having and sort through them in a healthy way.
Then perhaps some kind of support group with folks going through similar things. Even a Grief Share meeting would be helpful because you are in fact grieving the loss of many things.
Next I must ask....why are you trying to get your mom out of this nursing facility? Surely you're not thinking of trying to care for her yourself in your home are you? That will most certainly push you over the edge as her care is now 24/7, and there is NO way that you'll be able to do it yourself.
I get that you're wanting to help your mom any way you can, but at what cost? Your health, your sanity, your finances, giving up your life and happiness???
Think about that. You matter too in this equation, in case you've forgotten.
Until you take better care of yourself there is NO way that you'll be able to take care of someone else. That's a fact!
It's why when you take an airline flight that the flight attendants always tell you to put on YOUR oxygen mask first, because otherwise you will be no good to help others.
So please, do now what is best for you as you have so much living yet to do. I'm sure your mom would not want you being miserable because of her.
It's been a while. Remind me if you were seeking help with a GOOD strong counselor? I honestly think that's the answer. By strong, I mean a counselor who will shake up your world, who won't sit collecting 100-dollar bills while listening to your retelling of the same-old week. A counselor who will help you change your habitual ways of thinking.
I have several times been through counseling when I was stuck like a dray horse walking in circles. As uncomfortable as it could be, the best ones were the ones who rattled my tree so hard that the old fruit stuck in the branches fell right out. There has to be room for new growth.
Old habitual ways of thinking have to go. For me, it was exceptionally uncomfortable, because while I was in PAIN, it was a pain I knew and understood, and pain that had payoffs for me (sad as that is to say now I somehow wanted to live as a victim so I at least get some sympathy from others).
I can only suggest that you do counseling, and if you have someone who doesn't shake your world, move on to another counselor.
I know I already recommended to you the book by Liz Scheier called Never Simple, the memoir of her enmeshment and helplessness trying to deal with a troubled mentally challenged mom for decades.
You seem still to expect mom to change; she won't. Only you can make change FOR YOURSELF, and it will be hard and uncomforable work. If NEITHER of you is to change, then we will hear this long post again. We will feel sorry for you. But then we will move on, and you will still be stuck there.
I surely do wish you the best. You--we ALL--deserve a decent, quality, content life. Will there still be problems? Sure, but they won't be the all of your life.
Only yesterday, another poster we haven't heard from in a long time came to us in "discussion threads". She had been literally STUCK in grief. It had become her entire life. She was able to get help and to move on and now does the most marvelous work. She's had even further losses, so that wasn't cured; but she now has used her own losses to help others with all she has learned, to help those still walking in the maze. She is justly PROUD of herself.
You can do the same with all you have learned. I hope that you will.
After reading your post I realized I do have things I want to do at some point. My job is supposed to be moving me abroad to Europe (my 'dream come true' so to speak). Now the company is doing layoffs and the move may or may not happen. I want to start working in the field of either coaching or counseling 'one day' as I feel like my experiences could help others as I've dealt with a family member with NPD impacting my life, I've had my own social anxiety and depression, I have a mom with mental health issues who I now caretake for and a myriad of other things that have really only strengthened my empathy for others. I want to transition from my current corporate job into maybe some type of counseling and I could see myself doing that all through my retirement years. However I admittedly have not put any work into researching that; I spend all of my non-work time taking mom out, checking up on disability paperwork, Medicaid paperwork, now cleaning out her entire storage unit, obtaining documents since all were lost during the loss of her house (i.e., social security card, birth certificate, med records, etc.). I have only recently just started to try to put way more priority on my health (i.e., working out again, got a FitBit, meal prep healthy things at home, implementing better sleep habits slowly, practicing gratitude, etc.).
I want to say that I'm likely going to have to come back to your post and read it again and again. Back to the whole therapist thing, I can't say I'm seeing someone that 'shakes up my world'..I honestly do feel quite a bit 'stuck'. And I'm not sure (although I think I'm fairly self aware) which thought patterns exactly that I need to get 'unstuck' from - and knowing that is key to me being able to express that in order to ask for help to be delivered from it through therapy.