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This may have already been discussed in various questions in the forum, but I really don't have a space to share my thoughts or feelings about the challenges of being the primary caregiver for my mother. My mother, 77, began to physically and cognitively decline about three years ago. Already diagnosed with diabetes, cirrhosis of the liver (fatty liver disease), a stomach ulcer, and anemia, she developed a UTI infection. She went through a state of delirium for almost a month. When she was released from rehab, she contracted the flu and developed shingles. She was hospitalized several times over a period of several months. She hasn't been the same since. After her hospitalizations, she was later diagnosed with congestive heart failure and macular degeneration. As a result of the chronic conditions and prior mental health challenges, she does have cognitive impairment. She has good days and bad days. Since my sister lives 15 to 16 hours away from my mother with me living only one hour away from my mother, I took on the task of being the primary caregiver. Needless to say, it has been a very hard, lonely road. Knowing that many individuals have their own challenges in life, I have avoided dumping my own frustrations and challenges of caregiving upon individuals. However, there are times, especially when the challenges feel extremely overwhelming, that I have confided in certain individuals. While some individuals have been supportive, most make remarks such as "at least your mother is still alive," "you should feel grateful that she's still alive," "I wish my mother could still call me." When I hear such comments, I try to empathize with these individuals. I know that many people miss their loved ones. I also know that what they're saying is coming from a good place. However, their remarks do come with a tone of condemnation, that I should feel ashamed or guilty for voicing frustrations related to caregiving. I love my mother very much. She is my hero. I have made very real sacrifices to make my mother happy and comfortable. It has been painful to witness her decline. Even though it has been painful, I'm always there, supporting her 100%. I know that most of that support is invisible to many people. Just recently, my mother called me 21 times within a span of 24 hours regarding a small change with her diabetic meter and lancet. I picked up the phone every time she called. She had several meltdowns. She gets hung up on things now, fixating and ruminating. Her confusion certainly doesn't help. While trying to ease her anxiety, worry, and fear, I was working, teaching to be more precise. It's the last week before spring break, which means everything is much more challenging. Again, when I expressed how tired I was, a friend stated, "what I would give for my mother to be back alive and call me 21 times." All I said was that I was tired. As caregivers, what do we do when people can't or won't empathize or acknowledge our challenges? What do we do when people attempt to silence us by shutting down the conversation or reminding us of our 'place'? How do we express our own anxieties, fears, frustrations, concerns if we can't share them in the places/spaces we most frequent? How do we even navigate everyday conversations with coworkers, colleagues, friends, or family members? Are we just supposed to put our nose down, shut up, avoid our own physical and emotional challenges, and continuously guilt-trip ourselves for our 'ungratefulness'? I know that these questions are quite open with no clear or defining answers. I just really wonder how I'm going to be able to do all of this if I'm going to be silenced even when I just say that "I'm tired."

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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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So here’s the deal. Some people say things because they haven’t experienced it so the just don’t get it. Some people say things because they want to make it about themselves (“I wish MY mother would...”). I was told to “grow up” by a friend who lost an alcoholic mother. Everyone is messed up, tired and hurting. Find people like “us” (care givers who love their loved ones, sacrificed almost everything to do what they can, etc) rather than people that try to help with “tips” that come off as criticism and judgement. You don’t need that kind of downer. You need people that can lift some burdens off your shoulders, not add to the physical and emotional piling on....even if it’s just an “I hear ya girl.” So: I see YOU. I hear YOU. I acknowledge YOU and your selfless love that makes people like us think you’re a hero (or shero). I think your superpower is “getting through the day” with all the insensitive and unempathetic people who profess ( from the sidelines, no less) that you have it made....How the hell do you do it with a full time job??? YOU, my friend are a true gift from heaven. Seek out those that can help you carry your emotional and physical loads not ask you to carry theirs... They do it because you make it look “easy.” I don’t know you, but I love you. Hang in there girl. Your mom is lucky to have you. You may seem like a pebble, but you are a rock! Xoxo
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Daughter62sad Mar 2020
Wonderful & emphatic response! Thank you!!
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I've given a lot of though to your questions (at least some of them) and as hard as it is to accept, I think one just has to accept the fact that caregiving is a uniquely stressful and challenging situation and unless a person has experienced it himself, there's no way he/she can begin to understand or empathize.  I liken it to "mourning."  I remember attending several funerals when younger and seeing the deep grief of the loved ones.  I would genuinely offer my sympathy and support and then go on as usual.  It wasn't until I lost my beloved sister that the impact of grief hit me.  It was devastating.  For years after that, when attending funerals, I would cry with compassion, having been there myself. 

People often mean well - but have no idea what they're talking about. 

I have lost "friends" since becoming a caregiver, because the stresses and demands have changed my life - and me.  Most stresses in life are secondary and, or limited and will get better over time.  Caregiving, especially for the demented or otherwise challenged loved one, becomes increasingly more difficult as the disease/illness progresses.  You have to find outlets to give yourself relief.  If not, the resentment builds.  And when so called "friends" make seemingly unsensitive remarks, you feel like unloading on them.  Don't.  It won't make a difference.  It'll make you look bad. 

Find a support group in your area.  If you can't, reach out for just one good friend who genuinely cares and share with her.   For me, the only place where I find total acceptance and understanding - is this support group.  They have kept me above water, many times. 

You have a LOAD on you Rhetorica.  Don't give up.  Reach out for help.  Check with family physicians, senior centers and any place you can think of for support.  You are wise to share with us.  We care.  We understand.  ((Hugs))
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Rhetorica Mar 2020
I know that the council of aging services in my area do have a support group. Although I've thought about attending the supporting group, I've been reluctant to attend the support group since I'm afraid that that group will not able to relate to me.

My mother had me when she was 40 years old. She was a a single parent. Although it's not entirely uncommon for people in their 30s to caregive to a LO or parent, it's not entirely common either. Or, at least, it's not entirely common in my current location, in the Southern United States. I'm also LGBTQ. I've been with my partner for 15 years. She has also taken on the task of being a primary caregiving to my mother. While there is definitely a growing acceptance of LGBTQ individuals across the nation, many communities in the South are quite traditional.

Being an LGBTQ caregiver has presented its own unique challenges in caregiving. Again, that's another story, one to be told later.

Unless I go to a support group, I'm never going to know. I need to just go and see what happens.
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I think this falls in line with another discussion that is going on about how people don't get it if they have never dealt with someone with dementia. They really don't!! They are totally clueless on the situation. I feel 100% confident that if those same people had parents with one of the dementias, they would NOT want their parent back or to call them 21 times in a 24 hour period. We all would like our parents back in the condition they were in BEFORE dementia, but you couldn't pay me enough to selfishly want my mother to suffer the way she did when this all hit her.
Just realize there are those who get it and those who don't. This is a totally different disease than most and it comes with an entirely different set of challenges.
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My mom fell on Jan 15. Last 8 weeks have been pure hell. The first hospital put her on an anti-depressant with a side effect of stimulating her appetite since she stopped eating. Best thing that ever happened. She is no longer belligerent with meltdowns. I was advised to go the Psychology Today website and found a phenomenal therapist specializing in dementia/elder caregiving. He has been my rock even before she fell. He *acknowledges* my resentment and frustration and helps me cope with this living nightmare that has become my life.
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Your post is so on-point for many of us who can relate to others not understanding our situation. That’s why this site is needed and valuable- to connect with others in the same boat, who can understand and encourage each other. Even so, I am surprised to see some posts here that add to the guilt-trip. Ignore those and focus instead on the uplifting messages. Others in our real world circle may never understand. Some people don’t want the real answer to “how are you?” (Tired, frustrated, etc). It would be tiring to deal with 21 calls in 24 hours, of course it would! Thank you for a well-worded description of the challenges of caregiving.
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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 can sooooo relate to you! My mom is 93 and I'm getting ready to turn 60. She's back to living with me and is getting harder and harder to deal with. I'm exhausted! There are some friends when I would say I deserve to have a life and need to get away would say things like - "Oh your poor MOM!"....WHAT???? She's had her life - what about poor me??? It would be exasperating to the point that I quit confiding. I finally went to a counselor who would listen to ME! It's a hard, lonely, depressing road. I'm single too so I don't have a husband to help out with errands, housework, yardwork. I also work F/T. I too have suffered physical ailments due to the stress of caretaking. I finally am starting to set boundaries and let her know I am one person who cannot do it all! I become so angry sometimes and I know that is affecting my health. My mom acts like she can just keep putting me through the paces but this year things will change. If we hire someone to come in and check on her. She's been healthy so THAT I am thankful for. But yes I have friends that say "At least your lucky you have your mom because when they're gone....they're gone!" Yea then the guilt and depression sink in and I feel like I'm a horrible human being! I've learned not to be too hard on myself and I have people that tell me what a great job I'm doing. but to me...it's a thankless job. I just want my life back and not to have to worry about this all the time. All I can do is tell you I relate!!!!! God Bless.
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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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