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I feel for you and I understand. Even if there is no dementia a fading elder is nothing but a shadow of her/his former self. My own mother, at 95, has not (yet) been diagnosed as having dementia, but she is not at all who she was at 70, let alone who she was at 50. I feel as though my "real" mother passed on decades ago and that my sisters and I are caring for someone else entirely.

Those whose parents pass away before age diminishes all their most important character traits cannot possibly relate to "caring" for the shell that remains. Even the word "caring" is a mockery. The person you "cared" about is totally gone. You are doing a duty of service to a stranger who inhabits what is left of your mother's body. Ignore those who are critical. Their comments are as relevant as an American baseball lover's comments about cricket.

Above all, keep in mind that your emotions about your mother's current state have nothing to do with your feelings about who your mother was 20 or 30 years ago. Nobody has the right to fault you in any way for your attempts to assist your mother. You are very much entitled to your own feelings. I am sure there are days when you wish she would pass on and give you both a rest. Do not be ashamed of those feelings, they are natural, but don't dwell on them either. When everything gets to be more than you can deal with, do not hesitate to let your mother know that she must get help or go into residential care. You do not need to martyr yourself, that would do you both a misservice.
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Unless you do this yourself, nobody knows what it takes to care for a person who has dementia and you have to do almost everything for them. Like clean their asses when they sh*t all over themselves and the bathroom, bathe them. Like try to help them and they refuse your help. Like telling them not to do something because they will hurt themselves and they continue to do it. Why don't you ask these caregivers, how are you doing, instead of how is your mom/father doing? Sometimes we get frustrated and act out our frustration on them, maybe by raising our voice, so please don't assume we are abusing them, just letting out steam once in a while. We don't take her out to diner any more because it's a challenging to get her to behave in public. It's almost like taking care of a child again. You scold your children in public don't you?, so why not your parents when they act like children. We know it's the dementia, but we still get angry, The question should be "how do we stop being angry at them?", it's sometimes hard to control the emotions in those moments. Later on you realize your mistake and thank God they don't remember anything. It is hard!!!! Thank you for letting me vent.
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Rhetorica Mar 2020
Yep, I've been there. There's a lot of invisible labor that happens in caregiving.
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Truth is, telling anyone a personal story almost always results in that person thinking about and responding with how that situation has or would affect them. We all do it. It is natural. It is typical that relatively few people in our lives can respond with appropriate empathy to a personal story, especially one such as yours. That is why therapists are paid so well!
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That’s what we are here for too - we do know and appreciate the effort and tiredness you willingly cope with. Yet understand that an occasional voicing of how you feel personally is much needed. It is very draining physically, and emotionally to keep doing what you do with love for your mum.

Sure, it’s easy to say I wish after the event but I doubt those wishing were the primary carers: I’m relieved for my parents that they are at peace and out of pain. I wouldn’t want them back the way they were - I have wonderful memories - even through the tiredness of caring.

To the unthinking friend who’d like her mum to call her 21 times too - I’d suggest you offer to let her take on your mums calls for a week !

Just say to people whilst you are are grateful for the time left with your mum there are aspects that are very draining physically and emotionally and you’d appreciate any moral support they can offer to keep you going.

I used to ask folks to send me jokes - it didn’t cost them much in time - but used to let me know they’d thought of me long enough to send a funny. Some of them arrived at just the right time when I needed a light moment amongst the stresses of the day. Didn’t matter if it was old and corny or even close to the mark of present situation - those jokes helped keep me sane.

It sounds like your friend hadn’t had to deal with a similar circumstance to your situation. Or if she thinks she did - time has obviously mellowed the difficulties.

Chin up - and chat here with us instead!
Regards,
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I went through this! No one can understand your difficulties if they haven't been there. I used to get angry with the lack of understanding from even my friends at church. They only asked how my husband was! Don't be afraid to advocate for yourself. Don't take on any additional assignment from anyone. Don't let yourself feel guilty. You are overwhelmed. Don't feel bad about just letting people know you're tired and tell them they can take your place if they say you're lucky to have your mom. Use this forum! People here are going through similar things and most understand your plite and shouldn't be doing any shaming!
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Maybe you can reply with "I miss my mother already--it's very hard to watch her deteriorate and suffer." If the offending party doesn't back peddle at that point, then I say they are just a toxic individual you do not need in your life.

I'm not sure if your Mom is incontinent--mine was, and my favorite stupid comment was "well, she changed your diapers when you were a baby". Well, babies grow up and become independent. Sick elders only get worse, and it's just sad all around.
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CaregiverL Mar 2020
& babies lighter to turn & portable. Unlike immobile violent dementia patients
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You are not alone..I am going through much of the same..My dad is 102 and up until a few months ago was pretty self sufficient. In the last 6mos his kidneys have failed due to a bladder that is not working anymore and has a foley cath which he doesn't understand,...We have been in and out of hospitals as well..I am the only caretaker..My brother lives in another state. When I tell people I am tired or he is driving me crazy i get the same response..Oh god bless him at least you have him etc etc...or Your doing a wonderful job..I don't want or need praise. I want a break, I want one day of not worrying about him, or running to do everything...It is very hard and I feel for you...No one will understand until they go through this themselves..I don't wish this on anyone...Hang it there....
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GAinPA Mar 2020
When I read or hear 101, 102, etc. all I think is “YIKES!!” And one of those black and white downward spiraling images. My mom just rolled up on 98.
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P. S. What people don't understand is ,,not only is it physically tiring, its mentally exhausting as well.. They tend to get very demanding, and sometimes nasty..or they throw the guilt trip at you..And because you are tired you tend to get just as nasty back..When my dad finally does leave this world..I will not feel the least bit guilty as I have gone above and beyond to keep him comfortable..
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Simply, I distanced myself from those that I felt were toxic to my emotional wellbeing.
One relative texts to say they are thinking of us, but never calls to actually hear how we are. Probably because they don't want to risk being asked for help. Brother never calls to check on Mother or talk to her unless I call. Mother's brother and sister the same. I was consumed with anger that we are not worth the effort. Now I've just accepted it and moved on and surrounded myself with those that have genuine empathy.
I'm not rude about it, I just don't go out of my way, same as them.
I'm sure at the end I will be the B, but I really don't care. I've got big shoulders, that's why I'm doing what I'm doing, and they can just bite me. Lol.
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Save your moments for a compassionate audience. Don't get sucked in by responding to the question "how is your mom?". I have been trying to train myself to say "Fine, she's fine" and change the subject, even walk away. I too took the bait and got in conversations that ended in some kind of contest of "you think you have it bad? blah, blah). Some people just do not know what to say and they fall back on platitudes. Some people are thoughtless. Some people are jerks.

I must admit that in the past I have fallen into each one of those categories.
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No kidding. My Mom is past 100, has dementia, has no life, and has stollen my life for years. I can't abide people telling me how "blessed" and "lucky" I am to have her. No, I'm not.
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CTTN55 Mar 2020
I know. The second time I got that, I said, "And SHE is lucky to have ME." The person thought for a few seconds, and then said, "Yes, she is."
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Rhet, I have never been given that response from anyone and clearly these individuals have never walked your path. And yes, we also get to lose our loved one(s) after closely watching their health decline, after sacrificing ourselves to their care.

Your audience is inconsiderate and self-interested, not something you need. There is nothing harder than what you are doing. Make sure to include what's right for YOU in this situation.

I walk a very thin line between helping/caring and harming/valuing my own health. Please be very, very, kind to yourself and take good care! ~Kim
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Rhetorica Mar 2020
I can relate to your "helping/caring and harming/valuing" response. I'm at a point where I'm always on "go" that I don't really know how to settle, relax, or just sit.
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I can surely empathize. I know others have spent years caring for a loved one who needs 24/7 care. I have been doing it for three and a half years "only", but I am physically exhausted and mentally exhausted. My 90 yo mom is living with me and does not "call" me several times a day on the phone, but she is constantly in need of me to help her eat, bathe, dress, take meds, etc. So I think that we caregivers, whether living with or apart from out LO, are "busy" 24/7.

I live in California and all of my living family lives in the Mid-West or East, except for my son and his wife (they are older and just married last September). They both have demanding full time jobs and are trying to start a family. They come and visit when they can and sometimes are here long enough for me to get a quick break, during which I do laundry or grocery shop.

My mom has progressive Dementia since I moved her here from Ohio three and a half years ago. She has severe arthritis in both knees and one frozen shoulder. She is unsteady even when using her walker, so must be assisted to the toilet or doctor appointments, etc.

I was not trying to ask for sympathy with this message, just giving background. Yes, I am delighted that I still have time with my mother, yes, I am glad she is living. However, the types of statement friends and loved ones make regarding that fact are not helpful, and as you said, can make you "feel guilty". My family is doing somewhat the opposite. They tell me I have done more than anyone could to help her these past few years, and that I should place her in a Memory Care facility. They tell me what I already know - it is not good for me to continue this way.

We/she has no money for a private pay facility. She does have MediCal (Medicaid), but I understand there are limited places that accept it and there are long waiting lists for a bed. I recently got approved for receiving payment from the state for the care I provide, which will help us financially. However, I still need to find a trustworthy caregiver, for the times I need to go out to doctor appointments, laundry and shopping.

I agree so much with the comments to you about, answering they way that they have recommended.
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Rhetorica Mar 2020
Since my mother is a retired teacher, she does pull in a retirement pension. She also pulls in social security. Although her retirement pension and social security covers her rent and personalized services, she does have a bit of debt. So, my partner and I have been shouldering her financial needs so that she can live at her ALF. Unfortunately, my family is the opposite. I won't go into too many details about my family. It's a complicated story. I'm sorry to hear about your challenges. When my mother was living with me, I also had to search for caregivers. It was challenging to find the right fit for my mom. I acknowledge the tough, hard work that you're doing for you mom.
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Just accept the fact that these people have no clue what you or I are going through. My mother (93 in 2 weeks) has dementia & is immobile, incontinent & miserable. I discharged her from SNF 3 years ago this month. She was there 10 months. I have to use lift machine to get her out of bed & into wheelchair & then onto commode. I get abused by my “mother” everyday now. She calls me ugly, homely, prostitute, Shtik Drek (pos in Yiddish) courve (prostitute in Yiddish) she calls the private pay aide shvartze(black) bastard. The aide stays despite the abuse...I’ve had numerous aides leave. This so called “mother “ is not the mother who I knew. She’s already gone. The ironic thing is ...I’ll get her a cup of coffee & cheese danish & she’ll tell me she loves me! I don’t answer because I know she will abuse me soon after. I feel my time with her I want to limit as much as possible. I won’t even get into the physical violence against me. I’ve had to defend myself as well, so she won’t injure me further. She’s making it so I won’t miss her too much when she’s finally gone. I can’t wait for that day. So don’t worry about these ignorant people. Hugs 🤗
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I'm so sorry you're going through this. When I read your post I thought BINGO! I get it. I have felt guilty for being annoyed at someone who said to me "At least you still have your mom" or "What I wouldn't give to spend time with my mom" or some similar idiotic remark. Really? How would you like to have that free time you enjoy spent going to non-stop doctor appointments, CT scans, ER visits, other lab tests and the prep, grocery shopping, medications, meal prep, cleaning, house maintenance, just to name a few! And I have help! There are five of us, me, my brother, his wife, my ex-SIL, and we hired a PT caregiver. FIVE people to take care of ONE older person. Thankfully she can still toilet and shower alone. I do not want this to be my life for the next 20 years. They live longer, and longer, and longer, and longer...and can do less, less and less for themselves. I won't apologize for being angry about it. I have lived a clean and healthy life so that as I age, I don't steal my kids' lives.

Don't guilt trip yourself. Come here and vent. Avoid the negative nellies who judge.
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Kimmotion Mar 2020
Omg this is so on point! Half the people I talk to are either completely understanding or completely ignorant. It's hard, but I try to forgive the ignorant people because they truly have no clue what it's like. It's so easy for them to say "I wish I could have that time back with my parent" but having time back with their parent and caregiving are not synonymous- it's one thing to miss spending quality time with a loved one, it's completely different to sacrifice all your free time trying to do necessary tasks and deal with the challenges of caregiving. "

"That time mom fell because she refused a walker and stayed in hospital for weeks/months?! Good times, wish I could go through that again!" - said no one ever.
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I’m going on my eleventh year of caregiving. I think if I knew all the things then that I know now, I would have chosen a different path. I had no idea how involved , how physically draining and emotionally exhausting the whole experience would be. I’ve aged so much, at this point I don’t know who looks worse...me or my 90 year old father. A few months ago someone asked how I was doing and I responded, “How does it look like I’m doing?!” I normally just say that I’m doing the best I can. There is no sense in opening myself up to the hurt of not being genuinely acknowledged, so I stopped trying for the most part. I understand that people don’t know what to say. But I think even more so, they don’t want to get involved. It’s so much easier to pretend to care, say something useless, and exit quickly, than it is to actually help. I’m grateful the hospice SW told me about this site. I know I’m understood here, in ways that the rest of the world doesn’t care to know.
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MaryBee Mar 2020
I agree with you that many people don’t want to get involved, pretend to care and exit quickly instead of actually helping. But when those people are the children of the one you are caring for, that infuriates me! Not that that does any good. But I’ve started giving honest answers to How’s mom today? And How are you? Maybe mom’s had a bad day and it’s rubbing off on me. Now I let them know.
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Rhetorica, while I miss my mom I don't miss the stress and heartache of her declining years. Those people who say "what I wouldn't give to have my mom call me twenty times a day" probably weren't sole caregiver's for a sick parent.

I would just chock those comments up to ignorance of your particular situation and not give it a second thought. People who have been where you are understand.

You hang in there okay.💓
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No longer in active caregiving, but I had to leave my state to do it. Prayers to you.
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Rhet,

If anyone can’t empathize with what you have posted doesn’t have a heart. I mean that.

They aren’t just ignorant but they seriously don’t have a heart.

I’m so sorry that you have been through so much. My heart breaks for you. You’ve been through so much.
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(in my best Darth Vader-like voice) "Dear haters: I find your lack of empathy disturbing."

Rhetorica, I know exactly how you feel and I have to admit I'm glad someone understands what and how I feel regarding caregiving. I'm honestly surprised at those people whom I thought were my "friends" turned out to be "frenemies". It really shocked and hurt me. Just now, I found your post wondering if this had happened to anyone else, because I just got that same smug judgmental crap from a coworker "friend" telling her how I've had a hard time with Grandma lately. "Well, I hope someone is understanding when it's YOUR turn! Someday you're going to miss her!" No, honey, someday I'm going to miss NORMAL Grandma, not this bs. I love my grandmother dearly, I don't mind taking care of her because she's always been good to me. She is mild by comparison to others' plights, but that does not mean that this is easy- it isn't. There are days I want to put my own head through a wall. I'm doing everything I can think of to try and help her, but I can't do everything. And she doesn't help by resisting all sorts of help. But somehow people BLAME ME for things that are NOT my fault! I can't make her do stuff she doesn't want to do or refuses to do! It is absolutely insane the stuff people judge you for.

I hope that when the time comes for those critics that people are more forgiving and understanding for them, and they realize that being a caregiver is no walk in the park! We need all the love, kindness, empathy, and support we can get!
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NeedHelpWithMom Mar 2020
Wonderful reply.
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I've learned that not everyone has the capacity for empathy. Sometimes not even me. Some project their feelings, some micromanage, some criticize, some stay silent, some speculate. Maybe all well intended, but somehow become additional hurdles to overcoming the overwhelm.

It would be nice to be asked as a caregiver "what do you need" or "how can I support you", and sometimes you have to figure out what works for you because no one else will. For me: a hot cup of tea when I say I'm tired.

Don't second guess yourself. That was the best thing a medical professional said to me.

Want to walk. That was the best thing a friend could offer.

All the other responses, usually you have to dismiss as crap.
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Texasgal May 2020
OMG I can so relate - Just once I would love for someone to say - "How are YOU DOING?" It's always how's your mom...yes that may sound selfish but I'm the one taking care of her. And many times it is a thankless job. I feel resentful, irritated, exhausted. She's moved back in with me for the past 3 years give or take a few months when she visited others. She acts like I'm suppoed to quit my job because I spend too much money and have 50 of everything. All lies - I'm single, there is no one to take care of me and at 60 I am starting to need major dental work, and who knows what else. I own a home that is 25 years old and needs maintenance. Geez I guess I'm supposed to just give up everything for her - she is so selfish and narcissitic it's crazy. I want to be free to go and enjoy interesting people, sites, museums, road trips, nature. But I'm pretty stuck with her - I know it sounds harsh and even friends have said but you will miss her when she's gone and you are lucky to have her...blah...blah...blah. They can be so judmental - they don't realize all the pain I've endured of her constant criticism and manipulations. I used to feel worthless, unloved, not good enough. Thank God I don't feel that way anymore and I now stand up for myself. Then I'm told I could get picked up for Elder Abuse!!! I just want her GONE - out of my house. She needs to be around people her own age. I want my life back and this will probably be the year I tell her she does not need to be my herself all day and what does she plan to do. If I'm not doing for her she pouts...so tired of her BULL! But I'm trying to do the right thing but it is hard..unless you have been there - people have no idea. Just wanted to say I totally agree with you! Peace!
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You know, this whole situation has got me thinking: maybe those haters that put us down and judge us are really just jealous because we are handling the situation better than they did- with more honesty, integrity and understanding. And we have the bravery to speak our truth whereas they were told to shut up and put up.

Maybe they tried to honestly express their feelings/struggles, and instead of getting support, they were met with resistence and told to suck it up, so they had to be "pleasantly fake" about the whole thing while shoving their true resentment down, which makes them take it out on us.

Not exactly defending these people or saying their right, but this is just my thoughts on why some people might react the way they do. That or they just don't really know how to handle our venting. No matter what, folks, we will always have AgingCare.com to vent to, and I'll gladly lend someone an ear and a shoulder.

You ARE enough and you doing a great job, so stay awesome. This isn't easy, so please be kind to yourselves and each other. Love and support to you all.
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You are to be commended on the care, patience and love you give to your Mom. You did not ask to be born and although you are caring and forgiving of her with all her physical problems you should not be the only to carry all this responsibility. All siblings need to share in the caretaking of a parent. To bad some seem to shirk their doing just that because they live a long distance away. I have been the care taker of my Mom, Mother in law and husband. I am now elderly and live 1200 miles away from my children. All men, my daughter in law says not to worry but if I become ill or disabled I will have to pay my own way for a caregiver. If your Mom can afford it or has some health care insurance she needs to use it or else get your siblings who live far far away to help out and take more action on their part before YOU to will require a care giver. Getting old is not for Sissies! Good luck and stay healthy.
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I'm 64 and on full disability for PTSD. I have 2 younger brothers and yet i am stuck with all the responsibilities of our 96 yo father who is a sociopathic narcissist. No financial help and not even an ounce of moral support. Out of sight out of mind I guess. I feel abandoned and want to be done with whole family. The stress is killing me and taking toll on my physical health. High BP, liver disease etc. I have felt no love or respect for years only obligation. He is in ALF going on 2 years. I am DPOA and trustee. I signed a DNR last year. He is so abusive i don't visit or have direct contact with him even before the pandemic. He has taken and ruined my best retirement years. Mom died from a heart condition caused by 64 years of stress (narcissistic abuse) so indirectly he killed her. I am NC with one brother and barely hear from the other one but you can bet the minute dad passes they'll be holding out their hands for the inheritance check. I am beyond exhausted and so done with entire dysfunctional family. As you can imagine I have no patience for people who tell me oh but he's your father or you are so lucky to still have him. Every time the phone rings I hope it's the call telling me he is gone. I will cry tears of relief and joy. Thank goodness for support groups!
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