How do I cope with being a caregiver? HELP! I’m miserable!

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I love my mother but everyday I’m absolutely miserable being trapped in my home caring for her and feel guilty about feeling that way. My mom has stage 4 lung cancer from 55+ years of smoking. She was diagnosed May 8th and was in the hospital until May 19th. I was with her the whole time and traveled back and forth daily the second week once my husband almost lost his job because we didn’t have anyone to care for our children while I was away taking care of her. I have 3 children and my husband who also live in the home. I’ve always been the care provider for everyone and it has gotten to the point now that I can’t even care for my own children much less myself because I am caring for my mother. I feel the resentment creeping in. Why would she want me to put my kids off to care for her instead? I have to call someone to take my kids to where they need to go because I can’t leave my house unless someone is here with her which is never. This started before she was ever put on hospice because she said she was nervous when we left her alone. Very seldom my sister visits but only when it’s convenient for her and it may only be for 30 mins-1hr at a time. The resentment and anger has seemed to take over. I just want to scream. I want to get into my car and just drive away. I feel awful for feeling this way but I can’t shake the feeling. Right now I’ve had 3 hrs of sleep because she won’t get up and go to the bathroom alone anymore and I’m just sitting here while she sleeps thinking about how I need a shower before the hospice nurse and social worker comes today but I just don’t want to move to even get myself dressed. I know I sound like an awful person but I can’t make myself feel better about this situation and it continues to get worse. Not to mention all the other questions that are going on in my mind like how am I supposed to live in my home after my mother dies here, what if my 11 year old is the one that finds her dead and it mentally messes her up, once this is over what toll will it have taken on me mentally and physically and on my marriage?

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You’ve given it the old college try, and through no fault of yours, it hasn’t worked. We all have the best intentions when we take on the task of caregiving. When I read the posts on this site, I tend to believe that 95% of those cases have disasterous consequences. If my husband had nearly lost his job because of my caregiving obligations, that would have galvanized me into action. What would you have done if he had?

We have no magic advice to give you that will solve this. No magic wand, pill, book, or anything else. Your situation is particular to you. You know if Mom can self-pay. You know if you are motivated to research and apply for Medicaid. It’s obvious that her time in your house with you as caregiver is up. Caring for her, as well-intentioned as you’ve been, is taking it’s toll on everyone.

As Barb writes, if she goes to a facility, she will be cared for around the clock by trained, well-rested caregivers who have medicines, equipment and help available.

It’s time to be honest with yourself and everyone else. Good luck with your decisions and come back to let us know. We care!
Helpful Answer (7)
Reply to Ahmijoy
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Hugs, AB.

I don't know if this would work for you, but one way to think about it is that you do owe your mother the courtesy of being honest. Honest and *practical*. She needs good care, and good, strong support. Asking *all* of it from you is simply not realistic.

You love her very much. You care about what happens to her. But no matter how nurturing and dedicated you would wish to be, the fact remains that there are only 24 hours in the day and you have other people, equally important people, to consider.

You are going to have to harden your shell a bit, at least to the extent of not letting yourself be distracted by unhelpful, unspecific emotional accusations.

It may be that with additional support things could be more manageable, or it may be that there are hospice facilities that could offer respite care, or who knows what? But when you talk to the social worker, focus on the tasks to be carried out in a 24 hour period, the manpower available, and how these are going to be aligned. Right now it's all got completely out of kilter. You can't function.

If your mother has never been the nurturing type (I understand. It hurts, even when you do accept it) then whatever you do do not expect her to change, and do not blame her for her lack of consideration. You might just as well ask her to start speaking Touareg. She doesn't have it in her.

She'll be hurt and angry? Well. Maybe. Hope not, but maybe so; at least until any changes you decide to make have gone ahead and settled down. But don't forget - you are all adjusting to a comparatively recent diagnosis, and this is a time of huge upheaval and flux. There are bound to be upsets. Why should they *all* land on you?
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Reply to Countrymouse
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So your mother has come to live in your house, with you, your husband, and your three children; and your mother is on a hospice programme as a terminal cancer patient, yes?

The reason you are feeling so terrible about everything right now is that you are absolutely exhausted. Of course you want to scream. Of course everything seems a nightmare. What you're going through is a dreadful experience anyway, PLUS you are shattered.

With three children on your hands you cannot at the same time provide full time nursing care and companionship to your mother - that's two full-time jobs, and two jobs into one person won't go.

First off, if your social worker is coming today, talk to her/him really frankly - don't be afraid to show how close you are to the end of your rope. You need more help, so you need to know what all the options are.

Take deep breaths. You *will* get through this. Please come back and let us know how today's appointment went.
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Reply to Countrymouse
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Hello AB,
When I was had my first child and he would driving me crazy, (colick) my Mom would say,

" 2 kids are like 3, and 3 kids are like 5"

How right she was! Of course I went on to have 3 total. ( I knew more then her) There were times I wanted to jump off a bridge! Raising kids is a lot of work.

So if I had to take care of my Mom being terminally ill, kind of needy, and maybe a bit selfish, (ouch sorry) I just know I'd break. Definitely a nervous breakdown, for sure.

So I really hope you will step back and look at all you do. I never mentioned the cooking, cleaning, laundry, hubby, kids activities, homework and the alone time with each kid. How about adding in your personal care, haircuts, Dr. Appointments, shaving your legs......etc. Hopefully you don't manage the family finances or do the food shopping. How about shopping for kids summer gear. A few weeks and it's back to school time! Sheesh!

AB, every area mentioned above is most likely being short changed.

Please don't think for one brief second you are a horrible person! Like ahmijoy said, you gave it a try. Now it's time for plan B.

Your family needs you. Mom lived her life, and raised her children, the way she saw fit. Now it's your turn. They are only young once. You know how emotional neglect feels. You harbor it till today.

Be strong for your family now. See the guilt trip for what it is. Just a manipulation tactic.

You're an awesome daughter for even trying!
Big Cyber Huggz 🤗
Keep updating, we're here for you.
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Reply to Pepsee
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I have had 2 dear friends who had cancer. When they were estimated to have only a month or so to live, they were admitted and moved to a local hospice facility run by the Franciscan nuns. It was beautiful, peaceful and they catered to their every whim. All private rooms, a few activities for the people who could participate, and the nuns would even sing to them! There were communal dining rooms for people who could participate. My SIL volunteered in the kitchen cooking occasionally. They could have visitors round the clock. It was a a real blessing for the patient and their loved ones. There was a very nominal fee, as most of the costs were covered by donations. Perhaps you could look into such a facility in your area. Ours was called Francis House. Both of these gentlemen only lived there for less than 2 weeks.  The nuns comment that many people wait too long to be admitted. 
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Reply to rocketjcat
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You don't have to shower and put on a good show for the Hospice folks. Tell them that you're drowning.

Reread CMs advice.

I will add, get your mom on meds for her anxiety RIGHT AWAY. It really sounds as though, with her medical needs, she needs to be in either a hospice facility or a nursing home. Three shifts of trained well rested caregivers and you can visit and spend quality time with your mom.

Does mom have funds for NH? Otherwise, you apply for Medicaid for her asap.
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Reply to BarbBrooklyn
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You’ll need to take the social worker to another room or outside and have a private conversation. Your mom is using guilt to have things her way. But you have more obligations than just your mom, your family needs you present, rested, and available for them. It’s hard to make decisions when someone is guilting you into not doing what’s best. But you’re clearly exhausted and that’s not good for your mom. I hope you’ll make a change for the good of all, and don’t let the guilt be the guiding emotion
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Reply to Daughterof1930
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AB, you are a Rock Star! Now is the time to tell the Hospice Social Worker Everything, your Frustration, your Anger, you are Exhausted and even your misplaced Guilt, All of it, as Believe me, they have heard it all and will do everything they can to find you the aditional resources available, or get your Mom into a Hospice house, where you can visit as often as possible and where she will receive great care! And do not worry about showering or looking gorgeous,  they need to see you at your whits end!

You have definitely come to the end of your rope, but that's OK, you've given it your best effort, and have gone longer than most, with the amount of other responsibilities that you are attempting to manage! Hospice care at home is hard work, I know,  I've done it twice with 2 parents. My FIL died in our home on Hospice care last Fall, but it was just me and my husband,  both of us retired, and No outside influences,  so we were able to manage him quietly as a team, which worked out pretty well for us.

I think your concerns about your Mom dying in your home, and whether or not your children can handle this is REAL!

I know that when My Mom was dying and on Hospice care on my sister's home,  it was the Head Nurse that came to my sister and said, "for the sake of the small children (sisters Grandchildren) in the home, now at the end, where our Mom was entering into the active dying phase, let us transfer her to the Hospice Hospital,  where she will get wonderful care, and the whole family can be with her as much as they like". So that is what we did, a decision that was agreed upon by all of us siblings,  as well as our Mom. Our Mom died peacefully 8 days later, with all of her kids present.

Also, if you weren't able to get All of your feelings out to the SW in one visit , then call her back, and keep her in the loop and up to date on how things are going,  that is what they are there for! You! My thoughts are with you! 
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Reply to staceyb
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AB, also, as I wrote previously, my FIL Did die in our home, on Hospice, and even though he had lived with us for the past 13 years, it is Still difficult now 7 months later, for me to enter his bedroom, even though there are No reminders of him ever being there, it is completely empty of his personal belongings. I am still waiting for that feeling to pass, so everyone is different, when it come to a death of a loved one in their own home.

Even though I feel like I've been through a fairly smooth grieving process, I had high hopes of turning that room into a Craft/guest room for my Grandies, but still not up for the task. I know that this to shall pass, I'm just not ready quite yet.

Everyone deals with death and dying differently. I personally would not put your kids through it, if it can be helped as who knows how they might handle it, but then again kids are very resilient, and all of the grandkids (7 under 13) in our family have done really well handling 2 close family members deaths recently, which has surprised the heck out of me! I love it, and I'm so proud of them!
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Reply to staceyb
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I guess you haven't had the "Mom, I can't do this anymore" talk with mom.

It's the hardest thing that you'll ever do. I know.

But won't your mother understand that you MUST put your children first? And your marriage? And your family's livelihood?

Mom probably remembers nursing homes from the old days--dark, dank, smelly places. You'll find her a nice place, preferably a hospice facility.

Just for starters, I would not be able to face the pain that an end-stage cancer patient goes through and I wouldn't be comfortable giving morphine. I REALLY think that you need to protect your children from watching your mom deteriorate.
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Reply to BarbBrooklyn
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