I am so tired of caregiving! I feel resentful, depressed and angry all the time! I can’t even recognize the person I’ve become.

I think when your loved one reaches the point where they need 24/7 care, you can't possibly go back to a place where you enjoy caregiving again. Let's face it...... its too much for one human being! You've sentenced yourself to a life of hell because you promised your mom you'd take care of your stepdad? There are many ways to fulfill your promise without sacrificing your entire LIFE and state of mind in the process. I'm quite sure your mom did not have THIS in mind for you when she asked you to care for this man. You've interpreted her request incorrectly. Reevaluate your role in his life. Visit some Memory Care communities in your area, especially Anthem if you live in a state with one of their facilities, they are phenomenal. A good MC community's can provide a much more comprehensive and enriching life experience for your stepdad than you alone can ever hope to accomplish. The MC I work at took the residents on an impromptu outing to the Broncos training camp today. They all came back with huge smiles on their faces and everyone had a fine time.

Take the necessary steps to reclaim your life, my friend. You deserve to.

Anonymous,

Ditto honey! I feel your pain! I just got up at 3:00 in the morning to change my mom and change the sheets! I can’t take anymore either!!! I would cry but I can’t even do that right now...just numb! I’m a machine, not a person, not a daughter, not a nurse in a facility that gets off when her shift ends, hell no! I am a robot! A machine covered in flesh with a heart beating a mile a minute from nerves and blood running through my veins. That’s all... I don’t want to feel anymore because it hurts too damn much.

I'm so sorry, it's so hard, it sounds like you are working so hard and going through this alone. You know in your heart that something's got to give. You promised your mom that you'd take care of him, but sometimes that means letting someone else do it! Can the home be sold or downsized to pay for his care? Then you could just visit and provide love and care. You are doing an amazing job, but it's impossible to continue as it is. Good luck to you.

I know I am doing pretty close to the same thing I am working taking care of my mother I am pretty burned out I feel you’re pain

I always say some variation of two things here: this is the hardest thing you'll ever do and that it was really hard for me and I had it easy compared to a lot of you.

My father called me up, doing his mopey anxiety ridden BS the other day (I dread the 2:00 PM phone calls) and I didn't sleep. I didn't go into work today because of it. On the scale of hard, in this world, that's not hard, yet, my capacity for it is worn down because it's been 2 years of it and I never know when it's coming. Actually, it's getting to be "a lot" these days.

Now take your case, you've been doing this for 3+ years with a grind of care that I don't come close to providing.

So, I wish I had specifics, I don't, but I'll just say that a) you've done something that I'm not sure I could do (I'm pretty sure I couldn't) and b) to not be worn down after that would be superhuman on your part.

Others gave advice, I'll just add my support to the idea that you need some help and that you shouldn't feel bad about feeling bad. This is superhuman hard stuff at times.

Your mum would be proud you’ve tried so hard but wouldn’t want you to suffer the way you are currently. Get info re respite care in your area, info re nursing home care or just care homes if no nursing required. Contact your step siblings and ask if they have any preferences, suggestions or views re the info you have. Hopefully you can make an informed joint decision. But be prepared that you might have to make the decisions yourself. Whichever it is -once that decision made - don’t feel guilty but enjoy your free time so that you can both enjoy your times together and create new, happy memories.

It's about time for the daughters to step up. You need respite. See if you can speak with them. I am so sorry for the loss of your mommy! Prayers and big hugs to you!

Akward48,
First, please be kind to yourself and know your feelings are normal and you aren’t a bad person.
Second, one thing I really believe in is finding solutions somewhere “in the middle”....so what I mean by that is, to take a step back emotionally, and write down all your thoughts. Write down your stepdads needs, the duties you perform for him (and the ones you do for your own life). Write down your budget, your expenses, your income.
The “answer” might just be that all the family chip in to get some reliable, professional healthcare/personal care help. Stepdads doctor can help you find out if he meets criteria for home health help? Asssisted living? You would still be caring for him, ensuring he’s taken care of, in a safe and kind place, even if not always directly by you.

I hope you can find some solutions to this huge issue.

Best wishes.

I really do understand how you feel, My mother is 88 and I am her caregiver, her Macular degeneration and glacoma have gotten the best of her sight and symptoms of dementia are really showing through now.. I too have two sisters, who cant help do anything.. they find it hard to even pick up the phone and call her when I tell them she is depressed and it would really help... I ask that same question you did.... How do they live with the decision that they arent going to help out... I makes me so angry because they just dont care and because I can see the hurt in my mothers eyes... Im 53 caring for my mother, working a full time job or trying too.. I keep the pill box filled, I cook for her ect ect.. But my sisters always have an excuse, they work 60 hours a week, they dont have time ect ect... They dont have a clue what it takes to do this,
Again... How can they live with the decision not to help... Ive talked to them about it, begged and pleaded with them to do the right thing.. and the dont...
Thanks for allowing me to vent as well...

Promising your mom doesn’t necessarily mean living with your step dad and giving up your life, especially when he has 5 daughters. They may think you’ve got this covered. It’s not breaking the promise that you will take care of him if that means getting his daughters involved in his care. Perhaps the time has come to ask his daughters to take care of him. They may have no idea what you’re going through.
My siblings were so happy to have me taking care of my parents. No one fully understood what was involved until I asked them to come and care for them while I got a break. Take care of yourself and your financial future (advice from my financial planner and many others).
I gave up my job that I loved and had less income . I understand your feelings. Don’t feel guilty for taking care of you!
Taking care of parents is what God expects of us. How you do that can look different from family to family.
Praying for you 🙏

You can not trade your life for his. Care giving is not slavery.

I agree with the family meeting/letter stating you rending date and your expectation others will continue the care in some method.

You gave time and love and energy. Trust your feelings, it is time to live again

You need Respite.
You also need to say..."I can not do this myself."
I suggest holding a Family Meeting and say that either help comes into the house or he has to go to Assisted Living or Memory Care (whatever is the best fit at this time and I would strongly advise going to Memory Care as it would not necessitate another move as he declines) In advance of the Family Meeting have a few places in mind with prices and options, as well as how much it would cost to provide in home care. Keep in mind the cost of Facility care includes food, utilities, no property taxes, no homeowners insurance just to name a few things you would no longer have to pay if this is his house. (If you intend to stay in the house then the savings is minimal.)
But saving your sanity is priceless!
The cost of getting a caregiver in to help out would be paid by him (I am guessing he has Social Security check and or a pension)

And have you considered getting Hospice in to help out as well? You would get supplies as well as equipment to help you, a Nurse would come in 1 time a week, a CNA a few times a week to help bathe him, a Social Worker and other members of the team Chaplain, therapists if you wish as well as the ability to request a Volunteer that could come in and sit with him while you run errands or just get out for a few hours. Hospice is covered through Medicare. And with that Respite is covered 1 week each year. (as long as there is a continued documented decline a person can remain on Hospice, my Husband was on Hospice for 3 years)

Please do not feel alone, I cried for you while I read your post and also signed up just to comment . I am to care for my godfather when the “time comes” so he can be in his home where his wife passed. He’s 91 and had a hugely successful knee replacement surgery but fell ill with staph infection that turned to MRSA very quickly when he shouldn’t have been sent home from a rehabilitation center with an open wound labeled eczema. He was not going to tell me he had Long Term Care he’s paid for 36 years, he wanted me to do all the work and was willing to relinquish his right to LTC just so I’d do it and I was angry to find out he had coverage. I had a horrible surgery recently (and he’s fully coherent and knows this) but still had me on my hands and knees killing myself to get him dressed...next morning he was in different clothing so I realized he could do that himself and again I got very annoyed and resentful. He fell ill at a later point, so then he really did need my help and he’s recovering in a hospital then a different 30 day rehab facility.
Please, for the sake of your life and sanity do not take this “promise to care” so literally. Caring for an elderly person sucks the life out of you, me... EVERYONE! The first break i got I slept 16 hours, I’m in so much pain, and had no clue I subjected myself to highly infectious disease. Even his “skilled nurse” didn’t identify the wound being staph, I did and yes this is now a liability on their end (but more work for me as well)
I've decided this... I promised I’d be by his side when his time is ending and I will honor that but the level of care he requires is far more than 1 person can handle. I am not certified nor trained to care for someone on this level and if it takes a village at a nursing facility then I cannot feel guilty and neither should you. In all respects I could be doing more harm than good due to my lack of knowledge. There is a level of liability on you, keep that in mind!! So just like you I inherit everything and I don’t care about any of it. However if money is an issue, especially Dementia care being THE MOST EXPENSIVE level then you should consider reverse mortgage to pay for it, if you opt for in home care, I strongly advise you get a baby monitor with an app on your phone to oversee him and to assure he’s getting treated well and properly cared for in your absence. Also so you can see if he’s fallen, best $80 dollars we can spend and fully legal in my state.
Your mom was not wrong in choosing you as she chose who she trusted most, but this is out of your league now. She would NEVER have asked you to die inside to take on all this responsibility, you must know that in your heart? I know how 2 hours turns to 7 and utter exhaustion, just look at all of the responses to your post. You’re not alone in these feelings and you’re not selfish for getting him the care he requires AND deserves. My godfathers primary care was infuriated that I was wrecking myself and had some referrals for me. Long Term Care is difficult, even for a mortgage underwriter like myself and as fortunate as I am he has it, there are case managers you must hire to help navigate and advocate for you( more time). Money well spent in my case. In your case, I’d reverse mortgage the home since you don’t want it and pay for a facility, that’s what they are there for. When it’s “time” bring him home and be with him so he’s not alone and have hospice care as well. That IS caring for him no matter what. Not even his bio children have stepped up, partly because they inherit nothing or partly because they don’t care to take on this burden...you needn’t waste energy being upset with them, just stay the course and get him setup with 24 hour care.
Save yourself, get him skilled care since you’re not trained to do it, it’s completely justifiable! I know we don’t have exact situations but we’re all here to help and share advice and experiences. So I hope you can use any of our advice. Much light to you.

We placed my parents in a nursing home because both parents were unable to perform any activity of daily living without assistance. They saved money, but never spent it on themselves. My mother had regrets at the end that she didn’t travel - even though she could afford to do so. She spent her golden years appeasing my father. He lacked her curiosity, and she was too beaten down to fight.

Don’t waste your good years taking care of your stepfather. Give the reins to his children. Move out of his house and get your life back. Take care of yourself. No one else will!!

Ive been there. Sometimes I think I'm still there! I am the only one taking care of my mom. I have 3 brothers and sisters in laws that have never been to see my mom in 5 years, but have already discussed with me what they want when she passes. They are getting nothing and I made sure it was put in her will when we revised it!

Hang in there, just love them for as long as you can. My escape is a run in the backyard and I scream as load and as long as I have to. It helps. Know you are not alone in this, there are many of us out here.

Hi Akward48 - I understand what you are feeling. I have the same feelings. My mom was diagnosed with Alz 10 yrs ago and for the last 6 yrs I’ve had to put my life on hold. I still work full time and that’s the only thing I have that doesn’t revolve around my mom or Alz or caregiving. I’m not sure what state you are in but here in CA we have a program that Medi-Cal (Medicaid) pays for called In-Home Support Services (IHSS). I removed my moms assets so she’s qualify for Medi-Cal. After evaluation mom qualified for 283 hrs of FREE caregiver hours. I use most of those hours, Mon-Fri, so I can work and I use 9hrs on Saturday and 9 hrs on Sunday and those are MY hours so o can do whatever I want and go wherever I want. It’s not a lot but it helps. You may want to check to see if your county or state offers IHSS or something similar so you can get some relief. I’ve started the process of looking for SNF for my mom even though I promised her I wouldn’t do that. I can’t take it anymore. I don’t like the person I’m becoming because, like you, I’m angry all the time because everything is a fight with her (eating, toileting, bathing, meds, etc). Bless for you taking care of your stepfather and mother.

"I promised my mom I would take care of him if she went first and I will but I’m losing everything that matters to me in the process."

and
 
"Everything my parents own is mine when my stepdad dies but to me it’s just another burden I don’t want to deal with!!! "

Well, this might explain why your stepdad's bio daughters aren't helping out. I actually think you're lucky that one of them comes to help. Do they know that you are to receive everything when stepdad dies? And are you sure that's the case, as in have you actually seen the will?

And, really, how much is it all worth anyway?

Dementia? Incontinence? How bad are things going to get?

Your mother was selfish in making you promise to take care of your stepfather. Would she want you to die before him? Because that is what could very well happen.

PLEASE get some counseling -- you are worth far more than being a slave to your stepfather's illness. Your stepfather needs to be in a facility.

Your mom shouldn’t have asked you unless he raised you from an infant and you feel like he is your father. Taking care of him doesn’t have to mean that you live with him. Is he a veteran because my mother-in-law was in an excellent VA nursing home for Alzheimer’s. The VA even paid so much a month for her diapers, haircuts, whatever she needed. There are also regular nursing homes that Medicaid will pay for if he doesn’t have money. Medicare or Medicaid will pay to hire someone to come out about 15 hours a week.
I don’t understand why his own kids don’t handle it.
Don’t feel guilty if you need to find other arrangements. You can’t save him at this stage of his life but you’re missing out on living and life is short.

Hi, I too want to cry for you when i read your story. Let me first say i would imagine the promise you made to your mother carries the greatest weight on your shoulders to start.
I want you to think about this... you promised to make certain your step father was taken care of correct? and bless you for doing so! Sounds like there was a lot of love between you and your mother! That makes me smile for you!
There are two ways to interpret this, To make sure a loved one is taken care of, does not necessarily mean you personally have to be that caregiver, there are many ways to make certain a loved one is taken care of.
Taking care of someone and making sure someone is taken care of are really two different things, please recognize that. You cannot let the guilt of not being at the bedside consume and define who you are. It is perfectly acceptable to reach out for resources.
I see some really great feedback as far as respite ideas. Is he by chance a Vet? They offer great respite services, even though it does take some time to put them in place. Do you have a local church you could reach out to? I have often had many volunteers through the church take shifts on days to sit with a loved one. Does he qualify for home health for any reason? The daytime care centers i know have been really helpful for some of the families in our community.
If a facility is an option financially, please do not let the promise you made remove that idea from the table. You would absolutely be making sure the loved one is taken care of. Utilizing the healthcare resources, who can take good care of this loved one, is still respecting the promise you made.
Could you possibly contact your local college, often nursing students and or certified nursing assistant students need a part-time job, for a fraction of the cost of an agency employee. I know the nursing instructors will help connect to a promising student you could meet with, to determine if they fit.
I wish you the very best!! I'm sorry the bio daughters are not helpful. I think the comments are right, make the suggestions needed, or create a schedule with designated times for each shift and sent it out!
Best to you!!!

YOU are facing serious burnout and need to get respite care quick. YOU should not be facing this burden all alone. I feel you! I too want to run away, take back my life and see my friends and partake in my interests and hobbies. See if your step-dad could possibly go to adult day-care or have someone come and give you respite care. And what the heck is up with the biological daughters???? They are the ones that should really be stepping up. I feel you and just yesterday had to talk to my nasty, mean brother. My 92 mom has been under my roof for the past 3 years and while independent is starting to falter. Especially since my brother died suddenly at 69. I sent my brother a long text message explaining that our mother was going to need more assistance as I work full-time and am a single home owner. I do for her non-stop and barely get a moment to myself to even go get a haircut or visit friends. He called and after about 5 minutes starts yelling at me! I will not stand for his bullying as he took all her money several years ago so she can get on Medicaid. It's almost 22K - I told him she will need some of that money to take care of her personal business. I also told him I was diagnosed with a severe eye condition which is probably not going to allow me to continue working full-time. I'm so tired of this burden - I feel annoyed, disrespected and ignored. Immediately his answer was well she probably needs to go into a nursing home. No one wants to go there and she is lucid and can still cook, drive somewhat but not much and bath, dress herself. I'm thankful she is still in decent shape but she literally wears me out on the weekends with all the errands, major grocery shopping, banking, etc. So yes I hear you and I'm working on getting her to move into a senior apartment as she's going to need people around her as she does not need to be alone all day in my home. Good luck to you - it's a shame we have to get almost completely burned out before anyone takes notice.

I am so sorry to hear your story. You are definitely suffering from caregiver burnout. Sometimes taking care of someone is putting them in a place that they will be safe and taken care of. You cannot continue to do everything yourself. If the other 5 siblings don't want to help out then you have your answer. Please look into hiring a PCA a few hours a week at the minimum. They can help not only with your parent but with cleaning and laundry. If you can't afford a PCA, then please contact your local senior services to see about reduced pricing for help. You are not alone here, even if it mean just venting your frustration. Hang in there!!

If the finances are available find a good facility for him. If his kids complain tell them you need a written schedule of times they are going to care for him. That will change their tune fast.

No person is a 24/7 care facility... and it sounds like you have been trying to. Your Stepdad's life is important but so is yours.

You need some respite to think out the situation. When the one daughter comes for 3 weeks - take the time off and away if possible.

Ask yourself:
What is important in your life? Friends, family, pursuits...
What would a better balanced life look like for you and stepdad?
What aspects of care can be delegated to others?
What are the resources, including finances, top gain better balance in your own life?

You are in the position to make the decisions and the changes necessary. You can do this and regain rest, strength and care that doesn't wear you out.

Your are doing the best that you can. Sending you a hug. I was in a similar situation with my Mom
except it was my siblings that did not take an active part in her care. I moved into her apartment for 2 years trying to keep her there. My dad was deceased. I also worked full time. Eventually I had to make the decision to place my mom in a nursing home. A very difficult decision but in order to be a caregiver physically and mentally, I needed to care for me also. On the plane they tell you in case of an emergency put your air mask on first so you can help the person next to you. Are you able to get respite care for your stepdad sometimes? Have you had a conversation with his children in person or by letter? Is it affordable for him to go to temporary care or hire someone to take care of him while you take time for yourself. Mom had Alzheimers for 19 years, 17 years in a nursing home and I was still her caregiver. I went there daily, took care of some of her needs because I wanted to, took some trips, was able to spend time with my grandkids. My sons and my grandkids also visited. Had bithday parties there. It was her home. You will experience a range of emotions and it's ok. Find a support group to attend. Praying with you and be Blessed in abundance. You are important!

I was diagnosed with breast cancer about a year before my husband was diagnosed with Dementia/Alzheimers. I can't take care of both of us. So he is in a facility and I am living in our home. It is emotionally devastating for me to have him in a facility and he continually tells me he wants to be home.

My husband has moments of lucidity and then he is off the wall again. He calls me 7-8 times a day and even though it is good for him to hear my voice. And I don't want him to feel abandoned or unloved. Our conversations often exhaust me. And I find it hard to get things done that must be done. He left lots of messes behind for me to clean up before he was put in the facility. So, periodically I get angry at having to do it all myself. And sometimes I feel lonely. So it is normal to have a myriad of feelings under adverse circumstances.

My lawyer knows that I have seriously contemplated bringing my husband home and trying to get some help via medicaid I would be taking on the bulk of the help he needs. My lawyer told me that he has seen many caretakers die sooner than the person they are caring from due to the constant stress. Maybe it is time for you to find care for your step Dad and take your life back. It is not selfish for you to take care of yourself.

Note: I'm not saying this is going to happen to you but it is important to understand the strong impact of feeling helpless and trapped in impossible situations and stress and creating dis-ease in your body. See Mira Kelley's work, Dr. Joe Dispenza and Dr. Bruce Lipton.

Time for you to take care of you, Akward.

Awkward48 I'm sorry you are so stressed about this.

When you promised your mother you would take care of your step-father, did you promise you would do everything for him day and night and be there for him always? Or did you simply promise to take care of him?

I understand how you feel. Truly, I do. I promised my dad that I would care for my mom after he died. I have been caring for her since 2005. I had no idea how difficult it becomes. It’s emotionally and physically draining. You’re absolutely correct in saying that everything revolves around their needs and we cannot live our own lives. Your feelings are normal.

If I would have known it was going to be this hard I don’t think I would make the same choice.

My siblings don’t help either. It’s overwhelming to be a full time primary caregiver.

Forget about help from siblings. You will not convince them to care for their dad. As for the sibling that helps but judges, she will never get it either.

Decide what you can do for you and your father. That’s all your mom would want you to do.

I have Council on Aging coming every other week to bathe mom. I bathe her the week in between them coming. It’s better than nothing.

I do have to say in my area it was a long wait! I waited over a year for service to begin. Call and make a request for help. They will set an appointment time for an interview assessment. It’s a lot of questions so set aside enough time to go through it all.

At the end of the assessment they will tell you if you qualify for assistance. I only receive eight hours a month for help for mom, two four hour visits. They will bathe, do light housekeeping in their room, food prep, etc.

If they tell you that you need to wait a long time for services to start, call back periodically to check on the status. I didn’t want to fall through the cracks. I called once in awhile for an update from them.

I am assuming your mom cared for your dad. Was he in very bad shape then or has his situation become worse after her death?

I am sorry that I don’t have experience with dementia. My mom has Parkinson’s disease but no dementia. I can’t imagine going through what you are.

How old is your dad? People are living longer now. This could go on awhile. My mom is 94.
Did mom leave money aside to care for him? Can he go to a memory care facility? Does he have a home that can be sold for funds to help? Does he any money set aside to hire additional help? Perhaps a nursing home if he can go on Medicaid. You have a lot to consider. None of the siblings has a right to judge you because they aren’t doing the heavy lifting like you are. Just like they decided not to be involved in your father’s life. You get to decide what to do regarding future care.

Take care. Get a plan in order and things will work out.

I joined this forum just to answer your letter. It made me cry. I've been caring for my Mum for 2 years. She has severe dementia and suffers from seizures and recently had a hip replacement due to a fall although believe it or not, the latter is a non-issue she's recovered so amazingly well from it. I can't even fathom doing what I do all alone. My husband and myself are both disabled but between the two of us we get things done. At this point my Mum is still able to eat and go to the bathroom by herself for the most part. I do help her dress though. I was very fortunate to get very good advice from both her Dr and a good friend who had just lost her father after caring for him for a year before his death. My friend told me that she waited waaaaay to long to get help and that when she did, it changed her life. Unfortunately, that change was only for the last few weeks of his life, but that's exactly the point. Our Dr. advised me long ago, while my Mum was still able to understand, that when we got help, it should be hospice. Thank goodness he did! Because hospice does not necessarily have to be end of life. If your step father has an illness that is continuing and not curable so to speak, he can be on hospice for years. Also, the Dr. said that she'd get better care with hospice than just hiring a caregiver and boy was he right! Plus it's covered by Medicare/Medicaid and a caregiver would be out of pocket. That's a no-brainer. As it turns out, because of her seizures, her last hospital visit sent her home with hospice, so I didn't have to do the work myself. The blessing for me was that it didn't set any alarms off for my Mum because the Dr. had already discussed it her. My Mum's going to be 86 next week, and I'm sure you're aware of the generation that feels if the Dr. says so it must be right no matter what. Not to mention the fact that we happen to love and trust our family Dr. implicitly, however I am of the generation that would get a second opinion if I found the advice questionable and the admitting Dr. who actually put her in hospice doesn't have the best track record with us, but in this case, he got it right. Girl! Get yourself some help! NOW! My Mum has a CNA that comes in twice a week and bathes her. If I wanted her to come more often or if they felt she needed it more often, she'd be here more often. She has a RN that comes in twice a week. I have a Chaplain at my disposal. I can get a person here with a phone call. Call your Dr. and get hospice care!! Take all the help you can get for sanity's sake. You deserve, if not more than your average bear, to have a life of your own. Not to mention at some point you'll need those relationships that you've let lapse. Call a friend and get a cup of coffee, it'll do you a world of good.

Do you realize that you made a promise that you had know idea what that promise entailed? What it would cost you? Please don't think I am judging you because I'm not. I think your heart was/is in the right place. We all make promises with know idea what we are signing up for. CM has a very good point "it takes four to seven people to do this job."

You are not alone in wanting to run away. I have offen thought about it myself. When I get to feeling this way I know I am getting burned out; therefore, it is time for a break whether it is 10 mins or a few hrs. You my friend are becoming burn out as well. I would think about--look into what Barb's plain is and explore it, then but into action.

Trust me your mom understand that what she asked of you was unfair and it is my belief that she knows that now. The vail has been lifted up and she sees it clearly. She still loves you.


Hugs!!

Hello... I'm glad you enjoyed caregiving, (& you might like it again someday)...but GET OUT of there now! Your mom still loves you (from heaven), & does not want you to suffer this way... So, happily move on to a better life, (have no guilt)...cuz mom does want you to have a good life:) 🌈 be fierce.