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I have been helping care for my mom who has been on home hospice for the last couple of months. She has been declining in health for the last 7 or so years due to Parkinson's disease, and was diagnosed with cancer prior to being put on home hospice. At this point, she is bedridden and pretty much needs everything done for her, from feeding to changing depends. Her spirits are very low, she is often upset and cries a lot.


For the last few years, I have been struggling with anxiety and severe depression (which I am currently in treatment for). I often feel empty and emotionless/numb. I haven't felt very upset about the state my mom is currently in, and it makes me feel like a horrible person. I continue to just feel numb as I care for her. I'm not sure if it is because I have become so accustomed to my mom being sick for so many years. Or if it is just part of the depression. Or autopilot mode. Or if I've become this horrible, careless person. My mom can also be difficult to deal with at times, and I often find myself feeling frustrated with her...which makes me feel very guilty.


My dad and I take shifts caring for her. She usually needs caring for through the night as well (we tried 3 different night-time care aids to help us but my mom refused all of them). I care for her Friday nights til Sunday evenings, and Tuesday nights til Wednesday evening. I feel like I should be there more, but between lack of sleep and her frequent needs, I feel like I can't handle more than that.


Has anyone else experienced this "lack of feeling" toward their loved one, as well as frustration?

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You are absolutely normal.
Right now you are "doing the task" of caring. The mind and body usually just go into action mode and you are in survival mode. Don't feel you aren't normal or should be different.
I hope you can find a hobby or get to a movie or read a book once in awhile for your own well deserved health.
Mom refusing aids is not helping. You and your dad may have to give her an ultimatium - night aids or you go to a health care facility ( even if you might no follow through- it is worth the possibility she allows it)
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I am right there with you. Both of my parents moved in with us 13 years ago tomorrow! We didn’t ask for or even offer to do this. They were just there, broke and in need. Siblings all had reasons they couldn’t/wouldn’t help them. I could let them move in with us or let them live under a bridge somewhere. After caring for Alzheimer’s dad for 6 years before he passed then my mother’s decline after that I am past burn out and on to compassion fatigue. Extremely numb. My mother’s memory issues makes having any meaningful conversations impossible. 4 siblings have been no help. It has all fallen on me and my husband including how to finance them. Recently moved mom to assisted living. She would rather be with me but I just can’t anymore. I’m 74 and just can’t mentally or physically do it. Worry about regrets later but... I still manage her care, her affairs, her needs, visit often, call almost daily but am so, so tired. It has taken a toll on me and to some extent my marriage. I’m so ready to be done
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DJ9876543 Aug 2021
I am so so sorry dear one. You are a gem. You went above and beyond as a daughter.
Is there a senior county agency that you can reach out to for at least information on any resource where you can get a break? A church that may offer a half hour visit from a member/minister so you can take a walk or watch a movie?
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What you are feeling is normal. You have had to bear a terrible burden for so long. How can that not impact you? And it is hard seeing what is happening to her. You have heard of the fight or flee syndrome. You are overburdened for too long and its impact on you physically and mentally is great. So you "retreat" which is a safe human coping mechanism. There is nothing wrong with you - you are suffering in a different way than she is. I personally think this is just too much for you and if there is a way, hire a caretaker or look into Medicaid and have her placed where she is cared for.
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Imho, you are not a horrible person. You are a stellar caregiver who requires respite.
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Long-term caregiving can put you in auto-pilot mode as time marches on. You do the same things, face the same problems over and over. After a while you just react automatically. You can only take one day at a time because of your long list of daily medical needs assigned to you. It’s not that you have a lack of feelings towards your loved one, but you’re emotionally drained.
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Perhaps you might want to look up focus on the family for help. It is free
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You can only give so much. You need a rest.
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I have been a caregiver for my mom for a little over a year now. After this amount of time, I have found it necessary to guard my heart. I was on an emotional roller coaster trying to make sure I did everything to make my mom happy and comfortable. My mother too can be very demanding - much like a diva.
I am now in counseling and was just expressing my fear that when mom is gone I will feel guilty that I didn't do a good enough job. My counselor asked me what I could do to prevent the guilt. I have a hard time enjoying my mom's company. She is very social and would love to talk and have lengthy conversations, Because of some of the things she has said and the way she behaves, I find this very difficult to do. If I express my feelings to her she tells me I'm too sensitive.

So I find myself on auto-pilot being as caring and polite as I can be. I wish I could have a more lighthearted relationship with her, but I find myself stuffing my feelings down and going on with my day.

Know that you are perfectly normal, a very caring person, and not alone. Caregiving is one of the hardest things to do.

Find time to do what you love...reading, gardening, exercising, sewing, crafts...whatever it is that makes you feel content.

God Bless you,
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Bootsiesmom Jul 2021
It's hard for me to have any long conversations with my mother even though I know she would like to do so more often than we do. I don't feel guilty anymore about it and accept that we are very different. She's not mean or nasty or anything like that, we are just different on significant (and insignificant) issues. I also find I am also on auto-pilot when we speak, and stuff my own opinions. I just let her talk, try to avoid unpleasant topics until the conversation ends.
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Your reaction is actually very sensible and healthy. You recognize that you can't control the situation, your tears will not improve the situation, so you are getting on with things. You should be proud of yourself. Give mom a kiss on the cheek, rub her back once in awhile, tell her you love her. This is the best you can do. God bless.
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You yourself are suffering from some physical and mental problems. And you state you have to care for her to a great extent and it has made you numb. And you mention she can be and is difficult to deal with. Why on earth would you not go into a "safe" mode and shut down emotionally to protect yourself. She needs help and you provide it and yet she is difficult. That alone would be horribly draining on you and cause your anger and frustration. You are doing what anyone would be doing and feel. She has no right to be mean with you when you are helping her and you are enabling he by allowing this behavior. You should not be forced into this given the circumstances, nor should your father. I feel she should be placed so you can start taking care of your own personal needs.
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Riley2166 Jul 2021
So many times I have preached to everyone - but some won't listen - when people abuse you or make things so difficult for you and you are doing all you can to take care of them, then the buck stops there - you remove them and place them and take care of you first. You deserve it - and it is time to make the break before you are destroyed.
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I would say you are depressed. Talk to a counselor or friend and see if that helps.
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I call it self preservation.
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I had that really bad about 6 months ago. I provide 24hr care for my husband 2 kids and 3 English yellow labs. My husband had 2 massive strokes 8 years ago and can walk some, but mostly sits or sleeps all day. Anyway, I found myself bored and going through the motions of his care, without any feeling or thought, even though it disturbed me to do that. Sometimes I even felt anger or yelled at him due to over stress, which upset me even more. When that happens, I know it's due to stress, in which I need to take some time off by doing something that I love like playing a game or going outside for a bit for stress relief. I used to write about it, which helped too, just make sure to hide it from your Mom so she wont get upset after reading it. Once, I was reading a part of something I wrote in front of a writing class and got them laughing that it was like therapy for me to get it out like that. I'm happy to say that it comes in waves. I know now when it happens I just need a break and that I'm not a bad person, just a real person with normal feelings and normal thoughts. Anyway, I just wanted to tell you, you're not alone and remember: laughter is the best medicine. Find a funny movie to get your mind off things, or play with a dog/cat because they are naturally funny, without knowing it most times. Anyway, good luck, and keep me posted. Who knows, maybe you could publish your journal to help other people, just a thought, or read someone else's to help you.
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Sounds like you care a lot and are just overwhelmed and burned out. You numb feeling might also be a protective mechanism that helps you cope emotionally.
So sorry for what you are going through and what you family is going through.
I don't have any answers except to suggest taking as good of care of yourself as you can and certainly to know that you are the exact opposite of an uncaring person.
Take care.
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Clearly, you are not a horrible person!! Your brain is just trying to cope and survive. Horrible people do not give up their lives to care for another.
You and your dad need help. You need to hire a caregiver or find a care home and unfortunately, your mum is not in a place where she can refuse this. She is not the decision-maker in this.
Your roles need to switch to being companionship roles and in finding yourself some quality of life, maybe you can share that with her.
I have seen people say this before on here and I think it is sage advice.. put your own oxygen mask on first.
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This is rather like the position I was trying to get over in my response to SoLost21. This lack of feeling is a way of coping - it is what you need to be able to get on with your life. You have the right to do whatever is necessary for you to cope and if that is separating the person you knew from the person you are now caring for that is perfectly acceptable. No need for guilt look after you. If your mother were in a facility she would be being cared for and your visits would be a time you saw her as your mother. Currently you see the "person being cared for" as a patient whilst you are caring and struggle because she is your LO the rest of the time. There is absolutely nothing wrong with separating the two - medical staff would never survive if they could not separate work and away from work. Your "lack of feeling" is how many carers have to be to survive and maintain their own health. It's fine, you look after one person and your LO is a different person, they just look the same. If you can move her to a facility that can provide the care you can start to look after yourself. Don't fight how you feel it is part of your system dealing with your depression.
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Your post is verbatim to how I feel too. The job of being a caregiver is not easy and so overwhelming. Please know you are not alone, many like you feel exactly like you. Except we are not brave enough expose that side of ourselves. Thanks to your post I, too, have found comfort and useful advice. You are good source of inspiration.
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YOU are suffering from not only burnout but the more severe form of caregiver apathy. Meaning you are in crisis mode and need to step back and regain your life. Of course with your mom is such dire straits it will be difficult but a night nurse or Hospice caregiver is needed. You could be headed towards a total breakdown. Or facing severe medical issues - heart health suffers with constant stress. I'm not trying to scare you but you need help NOW! Don't put it off.
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Tumbleweed4242 Jul 2021
I was feeling the same way for a while and unfortunately, now I am angry a lot. That is worse. I have no means for respite or help either. So, get some respite for yourself and your dad before you get where I am.
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Yes. Certainly. I believe it is very common AND is a defense mechanism to survive and to 'go on' as you need to do. People in shock feel numb.
* You and your dad need to agree that you need to hire caregivers PERIOD. Your mom needs them (and you/your dad). You have to make decisions that serve her best interest, and the health of you and your dad to 'keep going.' If you burn out, as it sounds like you have / getting there, you will not be able to care for her at all and need/rely on caregivers.
* Do what you need to do. Do not argue with your mom. Tell her you understand how she feels. Then hire people. You have to - to survive. Do not wait until you have a breakdown.
* Ask your healthcare provider about how you feel. Since you are on depression meds, hopefully you can get some medical professional support.
- I would also suggest you research / read Andrew Weil MD website or purchase his book(s). He is holistic/focus on preventative healthcare and an MD. Get his DVDs or CDs. He will help you understand what you need to do - and how to take care of yourself.
Gena / Touch Matters
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I absolutely have! You're not a terrible person, but probably an overworked and overwhelmed one. I don't think we lack emotion, I just feel, in my case, that I am so busy sometimes doing the job of caretaking that the emotions just get in the way. Autopilot for sure. I feel them later on though, they come at the strangest times. Plus, there are so many emotions to deal with, sometimes the brain just needs to rest so it shuts itself down (again, just my opinion).
You sound like you can use a break. Is there any way to get live in help for a few days or maybe a week, so that you can take care of you?
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Yes. This is most likely a coping mechanism in your brain as you are taking responsibility for your mom’s needs. But please try to take of yourself and you dad as well.

At some point, your mom’s ability to refuse care can’t be her choice anymore. You and your dad should talk about that. The added caregivers are as much for your emotional health as it is for your mom.

Once I found someone I trusted to hire and come in, I simply told my wife that “Linda” is going to come and be here while I run to the store. Over time, my wife accepted Linda as a personal friend who sat and read to her, told her stories, talked, etc. You can move into using a caregiver slowly and gently. And you will see how it benefits everybody. You are not a bad person. These are new experiences that we have to walk through carefully. Good luck and God bless you.
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Yes! I’m going through the same thing! I personally feel it is my brains way of protecting myself from overstimulation. I’ve been through years of watching Mom go downhill. I’m at the place where I’ve had to stay numb in order to be able to continue my work of caring for her. I can’t allow myself to emotionally fall to pieces. I love my Mother & watching her go from a vibrant young movie star beauty to this stage has definitely numbed my mind!
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I too am on auto-pilot. Been caregiving mom for 10 yrs. She’s in hospice now for end stage chf and now cancer. I am numb and wonder what I will be like when I no longer have to care for her. She’s always been dependent on me due to blindness and her hesitation to be social and make friends because of her blindness. Totally dependent on me for everything. Now medically dependent. She’s 95 yrs old. Declining slowly. I am not the same person.
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My mom makes me feel this way, too. She lived her life already and I call her and take care of her when I see her. But I am not about to stop living to take care of her. I have too much inside of me; I want to explore, learn new things and my mom has to understand that. She is 83 and lives alone by choice. She is difficult and could not live with any of her children because of this.
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InFamilyService Jul 2021
Sounds exactly like my mom. I care from afar and she has everything she needs.
85 and in fair health, low mobility by her choice, no hobbies or interests. She refuses to socialize with the new friends at her senior community. She refuses to call old friends and check in.

Mom has part time day and evening sitters who she adores.

I am her target for frustration, boredom and anything else.

I enjoy my own family and help to care for my six young grandchildren.

I also help care for my husband's 92 year old aunt and help my husband with his business.

Mom tells the world I am micromanaging her life, am controlling and mean. She has dementia and I know her brain is not well. It still is hard to constantly hear this.
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Are you taking medication for depression? Because this will make you feel numb.
In any case, it is hard to take care of someone else when you do not want to.
Why do you feel guilty for this? Do you have your own passions and dreams?
If so, go after them and you can still care for your mom while pursuing your own life. Stopping your life to help your mom, is not good for you or her. You need to feel happy and healthy. Taking care of someone else and ignoring yourself is not helpful in anyway. Live your life before you get old too and can't do anything but stay home.
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You aren't alone. I am feeling the same way. My dad has diabetes and hasn't walked in years. He depends on a scooter to get around and he doesn't eat what his doctors and the nutritionists at his retirement home are telling him to eat, so he doesn't end up in the hospital. He doesn't listen and so he he has in and out of the hospital over 40 times since 2019. I can't help but feel so much anger at him and resentment. Every time someone calls to tell me he is in the hospital, I don't rush to get there anymore. Also, when we are talking, he repeats himself over and over again and its the same story all of the time. I keep asking for the doctors to test him for dementia but no one has been able to really find a "good reason" why he should live in a nursing home yet. I am done with this and feel envious of all of the other families out there that I see who are as old as my dad and can still live great lives because they took care of themselves.
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InFamilyService Jul 2021
I am so sorry for this miserable situation you are in. Live your life to the fullest, dad has made his choices.

It is exhausting to try and run back and forth. I did this with my dad until he passed because he refused all doctor's advice.
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Acceptance. You're at the point she won't get better and is just going through the motions until she passes.
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Sounds like you're doing the best you can.
If you are on any kind of depression meds, they can help you feel indifferent to your mom's condition. Also, maybe your feelings are your way of dealing with it.

I would install a camera in her bedroom so you can check on her whenever you wanted 24 7and I would hire Night Caregivers and sleep with ear plugs. Your mom will end up allowing the Caregivers if you explain to her that for you to be able to function and take care if her during the day, you need your sleep at night, then just stay out of your mom's room after saying hood night.

I use Nest Cameras fir my 97 yr old Dad that is living in his own house with 24 7 Caregivers
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InFamilyService Jul 2021
We have used Nest cameras too and have been very satisfied.
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Your "lack of feeling" is your defense mechanism for coping with the despair and grief and anxiety of watching your mother decline. The emotions of care taking can easily become overwhelming.

Sometimes it helps to mentally take a step back and see your situation as part of the human journey. "This is what people have done since the beginning of humanity."

You are not a horrible person.
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You’re not alone with this. I, too, often feel like I’m on autopilot. The exhaustion and numbness I have sounds like you, too. I don’t think you’re horrible at all. Just a tired and sad daughter. Hang in there. Remember, you’re not alone. Cindy
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