Follow
Share

The amount of time and energy I have put into caregiving equates to a third of my life at this point and I feel so alone. Who notices and who cares? It feels like noone. I feel ignored and disrespected by others in regard to my role as a caregiver. From family that are MIA, neighbors/friends complaining to medical staff treating me like I am an annoyance. I am drained emotionally and worse I feel like it is never good enough. I am in such a vulnerable place emotionally it worries me.

33 Comments

Newest
First Oldest
First
1 2
Hi there. First of all. Do something g nice for yourself. Have a bath. Cup of coffee. Pat yourself on the back for the care you have provided when it was most needed. And most of all. Be realistic. It sounds as if your person is in need of more care than one person can handle. This may come across as firm but just maybe the care you are providing isn’t adequate because it’s just too much. No one’s fault. But you need to take one step back and trust. Trust that others want what is best for both of you. And perhaps. Perhaps you would be better taking a step back from the care. Sometimes medications are necessary. There is likely pain and fear and medications will help with that. Talk with the social worker. We had a caregiver in our family that refused meds and our poor Mother in law suffered from pain and fear. Injuring staff. Medicated they were able to provide care and the medications were reduced eventually. But remember. There is an end to someone’s life and that is not a failure.
(0)
Report
You need to get respite for the person that you are caring for, so that you can take a break. It doesn’t have to cost you much, just some me time. Try to attend some caregiver workshops to get updates and encouragement/support. Get counseling if needed. If you still feel the way you described, then it’s probably time to get another type of job. You need to feel better about yourself and rewarded in your work.
(1)
Report
Survivallmode....
Please contact the Hospice and tell them that it still seems as if your grandma is in pain.
Also now that she is on Hospice you can request a Respite stay. They will place her in a Hospice In Patient Unit or they will find a facility that they work with that has a bed available.
You will get a break, hospice will care for her.
the next thing you have to do is talk with the Hospice Social Worker and tell them that you can no longer safely care for her. Your Mental wellbeing is at risk.
If you really have to take her back home you can request a Volunteer that will come and sit with her while you can get out. Typically a Volunteer can be arranged 1 day a week for 3 to 4 hours. the Volunteer can do NO "hands on care" (that is the reason for the 3 to 4 hour limit.) but it will give you a chance to get away from the house.

Ignore friends and neighbors that complain.
Ignore and possibly report medical staff that treats you as an annoyance. You are advocating for someone that can not advocate for themselves.
the next thing you HAVE to do is talk to YOUR doctor make sure they are aware of the stress you are going through and ask for a referral (if you need one) to talk to a therapist.
(1)
Report
Unless ur in that situation people don’t understand how much of a toll that takes on someone, not only the time ur taking to care but also its putting ur life on hold. And for the simple fact of watching a loved one go downhill takes a toll that nobody but u understands ! It’s a lot for anyone. And u could talk to 100 people but unless one of them have been in ur shoes they have no idea. I’m right where u are . So I understand. All I can say is try to stay strong. I’m trying to do the same
(3)
Report
update: My grandma had a short hospital stay due to a fall - she was doing ok then they sent her to rehab "to get stronger with PT". It was a nightmare. They switched her meds around and didn't focus on PT hardly at all. She declined steadily there. It has been so stressful. The last five days there were scary with her showing signs of not getting better. I decided on hospice thinking it would be best for her to be comfortable but it is scary here. They gave her something for pain and she is not responsive at all. It sounds like she is trying to scream in her sleep. I am scared, sad and have guilt putting her here. I cried a lot yesterday and my head, jaw and face muscles hurt from tension. Today I feel numb.
(3)
Report
She/you (if you have her POA) could sell her house and use the money to pay for her care in a facility that can meet her needs. You could then enjoy visits with her, without stress and exhaustion. If she doesn't want to do that, you can tell her that she needs to hire caregiver(s) out of her own budget because you need to focus on your own job, health, and family needs.

Those negative emotions you feel are real but guilt is not justifiable because you have done so much already. As for anticipatory grief, turning her care over to others, whether in-home or in a facility, will enable you to spend time with her as a loving granddaughter rather than in a stressed, exhausted, and resentful mode.
(1)
Report
I do have a lot of emotions about this because caregiving has been such a major part of my life for so long now it is scary to change how things are. Even though I know things will need to change; emotionally it is hard. Add in anticipatory grief, guilt, and most every other emotion to how I am feeling. I have checked into getting her placed but it is private pay.
(1)
Report
@survival mode .

What exactly are the “ many things “ keeping you from placing grandma ?
She’s declining and in need of care that is too much for one person . Her condition is what should dictate the placement that is needed . Don’t let fear, obligation , and guilt drag this out any longer .
I did the running back and forth to my parents house for over a decade until it was necessary to place them . You are there too .
It does no one any good dragging this out .

We do “ understand the toll” . Which is why you are receiving the answers here that you get “ asking for wisdom “.

Someone who comes here sounding as distraught as you are will be told this is not sustainable . I don’t know what other “ wisdom “ there may be . I agree with Alva that you may be stuck in some habitual thinking . I was too . Like Danielle123, It has taken me years to recover from losing myself in someone else’s problems for so long .
(3)
Report
I can relate to the vulnerable place that you are in, emotionally. A number of members on this site know that I was my mother’s primary caregiver for 10 years until she finally moved to another city, closer to my sister, near the end of 2024. I am working hard to get my life back.

The prolonged caregiving experience changed me. I am still struggling with emotional exhaustion. You appear to be in that place too. A third of your life is a long time.

The one thing that I have resolved to do is to never put myself back into that situation again. I have aging women friends who are single. I would be willing to point the way, but not be the way (as one poster wrote).

It’s you or them. That’s what it comes down to.

I wish you freedom and peace.
(3)
Report
@survivalmode

I'll say it again. At some point in caregiving for a needy elder most people have to choose. It's them or me. You're there, my friend. Put her in a care facility.

Also, you don't know how long she will live. Only The Almighty knows that. I've known people who stayed in caregiving and said the same thing as you that the person didn't have long left. They stayed in that situation year after miserable year. A few of them died before the person they were a careslave to.
(4)
Report
For those commenting that this is not sustainable - yes I know. Like I said I have been in survival mode. I have zero help from family or anyone else and I am doing my best. When her care began to significantly increase five months ago - it was one thing after another and I would solve one problem and another one would come up. I am very much aware of the absurdity of the situation which is why I am seeking out resources and contemplating my choices for care going forward. I don't believe my grandma has a lot of time left based on how quickly her disease is progressing. While it is easy to say put her in a home it is different in reality as far as many things are concerned.

As far as the comments about my child I get what you are saying. As far as feeling bad about it and worrying about my son I have that covered I really do. I am not going to continue to be there every night and certainly not into my son's teenage years.
(1)
Report
I apologize for being blunt .
This is no longer sustainable . You are about to collapse . That is not fair to your child .

Grandma will need to be placed ASAP . You tell her that she needs more care than you are able to provide . If she refuses , you step back and stop helping and call APS or the County Area of Aging to place grandma . You are allowing this woman to take over your life as well as your son’s life .
(3)
Report
I agree with Mia. Yes, it's cool that your son has gotten to know his great-grandma so well, but "For the last five months I have been at her house every single day long hours and sometimes twice a day - no break." This is substantial that time that has been taken away from your son. It will only get worse. If your son goes with you, is it really fair to expect him to spend his teenage years with an old lady when he should be developing his own friendships and and interests and skills? Time for a serious realignment of your time priorities, including taking care of yourself for your son's sake.
(3)
Report
Please take several days off. Pay someone else to sit with grandma so you can get a break and rest.
(1)
Report
Dear survivalmode,
I'm so sorry that you are experiencing caregiver burn-out. I can almost hear the exhaustion in your posts.

I do sympathise, but I would also like you to take a moment to try and see your situation from a different perspective.

You've been caring for your grandma for 12 years and you were pregnant in the early days. That means you have a young child, a pre-teen, who is completely dependent on you.

What I want you to consider is that your child's needs are far more important than your grandma's. At least in terms of them being met by you.

Anyone can provide your grandma's care, but only you can provide your child's care. Your child comes first. Then you. Then your grandma.

You can't really make your immediate family your priority when you are providing your grandma's care needs yourself. Something has to give.

Please realise that you aren't in a position to be your grandma's caregiver forever. This is an unsustainable situation. It can't go on and you still maintain your health and sanity.

As an RN, you know about PIES - are your needs being met? Physical, Intellectual, Emotional and Social? Or are they being neglected? How long can you juggle everything before you drop a ball?

Your wellbeing is suffering, right now, because you've got too much on your plate. Please think about taking steps towards reducing your caring responsibilities.

Wishing you well.
(4)
Report
@PkPoet58

I would have told that hospice nurse to 'F-off'. I have told a few of them exactly this over my many years in caregiving.

You're the one doing all of the actual work and care, i.e. feeding, washing, changing the diapers. repositioning, etc... YOU are the one in charge not some self-righteous hospice nurse who believes there's a halo appearing on her head who pops in for a few minutes.

Don't ever take one moment of cheek from these people.
(2)
Report
I wish I had answers but I don't. I'm in the same boat as you. I've decided it's better to navigate alone than have toxic people in my life that judge and condemn me. I got scolded by a hospice nurse because I was in a bad mood. I'd rather do this alone than have negative people in my life. My mom is 99 and on hospice now for over a year. Totally bed bound and dependent on me. She has Alzheimer's but eats and drinks well and is stable. She in a hospital bed and totally incontinent with bowl and urine. Its a hard job my friend. Hold your head high. You're doing a good job no matter what others think or say. Hugs ❤️
(4)
Report
I totally get it and I sympathize with you. I know what it's like to have my own life wrecked and worn down to almost nothing by my narcissistic mother with decades of untreated, misdiagnosed mental illness and abusive, weaponized neediness. Now add some dementia to the mix.

So I'm going to level with you and tell you plainly. With caregiving especially for a needy elder you have to make a choice. It's either you or them. Your life, or theirs.

I chose myself over caregiving. You should do the same and choose yourself and your life.

Put her in a care facility.
(9)
Report
I hate to tell you, but people aren't going to respect you or admire you for your constant sacrifice. People have their own problems and simply don't care. I've lived alone 24 years as a widow, so I'm already truly alone. I get it.

Sure, I've gotten a compliment or two from being a caregiver, that's it. I don't want to make it my life, since at 71 my life is winding down. I start to wonder, "Who will take care of me?" There isn't anyone I can truly count on.

I understand the feeling of disrespect from family, the medical staff seeing you as an annoyance....it is very draining emotionally. I never thought "doing the right thing" would hurt me so much in the long run.

I wish you inner peace and the ability to brush these selfish people off. They are not worth it. Worry about yourself from now on!
(8)
Report
(((Hugs))).
(2)
Report
To everyone who has commented thank you so much. :-) Lots of good advice and kind words. I am on an emotional rollercoaster as far as my grandma's care to where i'll be sad and scared to lose her one day while other days resentful of the sacrafice of my own life for so long. As far as my child believe me I have mom guilt. My child is THE best part of my life and I love him dearly. Of course I worry on my bad days about how much time I have spent on grandma - on good days I think about how cool it is my son spent so much of his life getting to know his great grandma. My health has suffered I am sure and if I am not healthy I can't be here for my son. I know I am at a crossroads where I need to decide how caregiving will look going forward that will also include my well being and not just my grandma's.
💗hugs to everyone who is caregiving - it is really hard 💗
(2)
Report
I hear you! No judgments here, whether you continue to care for her yourself or choose a facility. And I know sometimes your feelings on that can change from day to day, or even hour to hour. Even if you chose to put her in a facility, you have given her many years of support that you can be proud of.
I just mainly wanted to say I see you, I’m in the trenches with you. It’s a tough job but we know why we stay with it as long as we do.
(2)
Report
I just realized you said you started taking care of your grandma 12 years ago when you were pregnant. That means your child is twelve now. He or she needs the time, attention, and energy you are currently giving to your grandma. The teenage years are challenging and you don't want to miss out on both the fun times before your child goes off to college/adult life and the challenging times when you need to be aware of where your teenager is with their life and provide the guidance needed during this crucial stage. Let that provide you with the courage to say enough is enough with your grandmother, and turn her care over to others. (Especially since doesn't even appreciate it.)
(3)
Report
Survivalmode, this is a group that cares! My wisdom to share is this: it's time for your grandmother to hire in-home care at her own expense, or sell her house to pay for facility care at whatever level is necessary. You DO NOT have to continue in this way. Look back with pride at all you've done for her, and now step back. If she wants to stay in her own home, she needs someone other than you to enable this. There is nothing magical about a home that entitles someone to entrap someone else in order to stay there. Your own home, your spouse if you have one, your children, and your own health, both physical and mental, plus any future grandchildren, are entitled to your attention at this point in your life. You are so kind and generous! But don't let that become your downfall.
(7)
Report
I can honestly say I know exactly how you feel!!
Icame to look for an elder care attorney that might actually help me without putting me more in debt. I have cared for my parents and downs syndrome brother my whole life. I'm 58 now. Mom and wonderful brother have passed on but past 5 yrs had to quit work and devote ALL time to dad. It's thankless Most times. Realize, you cannot make the parent happy All the time. Try to set a schedule for yourself if you can and if it allows( which my father would not let me get any outside help) utilize any outside help. Once a week, at least do something just for you even if it's just for an hour. Do something that makes you feel pretty buy a new shirt if you can, I know it's cliche but take a walk get outside even if you don't want to, the fresh air does help and I don't know your thought process but prayer is huge! Talk to God,Allah whoever ask them for strength and guidance and realize how wonderful and important you are because it's easy to forget. Obviously, and I hate when people tell me this, support groups counseling, you have to find what makes you feel good inside makes you feel worth more than somebody in their pajamas half the day or sweatpants because you know you're going to be cleaning up urine or maybe vomit or whatever LOL it's a tough road definitely cover your butt legally. Because once everything goes downhill therewon't be time. I really hope this does something for you maybe just knowing somebody else is going through it and somebody else does care. God bless you.
(4)
Report
Everything you describe is me. Wish I could give you a hug.
Right now, my shoulders and neck are aching terribly due to the stress that you have described. Sometimes my body aches so much. It feels like I've been in a fight, like I've taken an awful pummeling. I'm taking care of mom and sister by myself. It's taken years to figure out my threshold for caregiving. If I don't step back when it reaches that level, I'm in danger of losing it. Last week, I wrote in my journal to save myself like I'm saving them. I'm listening to my inner voice more. I deserve as much care as they do.
(6)
Report
You’ve been at this an incredibly long time, no wonder you’re exhausted and burned out. Caregiving most always starts small and with good intentions, it’s the mushrooming over time that comes and overtakes your life and depletes you. I hope you’ll find a new balance so you can continue to be good for your own family as well as advocate for grandma
(4)
Report
It is hard to fit twelve years into a few paragraphs so I was focusing on my feelings and hoping to get emotional support from others who understand caregiving. I think one of the worst parts is not having someone to talk to. Being vulnerable is not easy for me so if you knew me you would know it was not easy to make a post asking for support.
Just to clarify in response to some of the comments - of course I started caregiving out of love and care for my grandma without expectation of payment. I am not at risk of self harm. I am a mom, an RN and a grandma carer. I am proud of all I have done to keep my grandma in her own home. However as any caregiver knows sometimes it all feels like too much and all you need are kind words.
(1)
Report
Please see a good in-person "cognitive" (not "talk) therapist. This person will help you change habitual ways of thinking, and will help you to discuss and define option for your own life. I sure wish you good luck. It is a wise person who saves his/her own life from self-harming when caregiving in the home is no longer sustainable.
(4)
Report
Thank you for responding. I started helping my grandma about 12 years ago after my mom stopped helping suddenly and went no contact with my grandma. I was close with my grandma and at the time it was more minor things like taking her to appointments, getting groceries, household things. I was pregnant at the time. I remember putting her walker together a few weeks before I was due. Her mobility started to decrease at that point. Every year care increased for her medical health and in addition I was taking on more responsibilities with her bills, pills, house maintenace, appointments, everything. I was the only family member helping and it seemed my grandma just expected me to do it as I feel she wasn't grateful for my sacrifices to care for her. It just snowballed over the years where I would have more and more responsibility and feel more and more alone. The last few years have been particularly difficult with many late nights. It is like a full time job that I don't get paid for. My relationship with my grandma has shifted also to more of a parent child relationship and she isn't providing any kind of emotional support as my grandma. For the last five months I have been at her house every single day long hours and sometimes twice a day - no break. My stress level is high and any attempts to soothe myself are unsuccessful.
(1)
Report

Recent Questions


Popular Questions


Related Questions

Start a Discussion
Subscribe to
Our Newsletter