Been doing this for 2.5 years.....24/7....with a 5 day break every 4-5 months and a maybe a 1/2 a day every month. 8:00 to 9:00 everyday - 7 days a week. With some nights woken up. Cleaning urine soaked beds, chairs, clothes. Trying to understand what my mom wants, but it takes a half hour to figure it out each time as they have aphasia and they get their "yes" and "no" mixed up.
I don't have any more patience. I am getting mad at my parent that I am taking care of. It is not their fault, but I get annoyed now at tiny things and take it out on them. Never used to. And I immediately apologize and try to be nice, but I really have nothing left.
I get so angry all the time over nothing now. I feel it just want to explode in me. And I have never been an angry person. I was always so positive, upbeat and easy going. And a very caring person. That is why I got this job out of all the siblings. "Oh, you have a gift! You're so patient! I could never do that! Blaa blaa blaa..."
I don't want to quit, as I know no one else will come in to take my place and dear ol' mom will head off to a nursing home. I won't let that happen!
I just need someone to tell me what to do to stop being so short tempered and down.
always change eventually Sometimes you just need a few moments to yourself. I would go outside and do some work for a hour or two. Now that my wife has passed away I wish I spent more effort showing my love. Don’t let your frustrations get it your way you will have time in the future to relax and reflect.
We all have certain thoughts after someone dies.
Please know that you did your very best. It’s obvious that you loved your wife.
Actually, love doesn’t ever die for the people that we care about, even after they are no longer with us anymore.
If your siblings will commit to helping EVERY week, that would give you some needed rest. But be forewarned that it is possible that they will not be reliable. That they will be too busy living their lives to be consistent. Do NOT get mad about this. It's OK if they don't want to do it. And you do NOT have to do it either. My mom lived with me and hubby for 7 years. Then as her dementia got worse I put her in AL. It's been great for me so I can live MY life not spend every moment caring for her. No thanks.
The first thing I did was hire a cleaning lady, that mom paid for because she could not keep her room and bathroom clean. Very helpful.
Then I started bringing caregivers in and kept increasing it until I had at least 4 hours 5 days a week, sometimes more.
You also should really start working on putting your life back together. It's no good for you to feel like you are between a rock and a hard place. You need to be independent. You should not wait until things change with mom to resolve your marital issues. See if you guys can work things out ASAP and if not, go ahead and get divorced. You have money and assets tied up in your marriage that you are not using.
Start extricating yourself from a hard situation. Mom won't like it but that is not the issue. YOU don't like the way things are - that's your #1 priority. Having been a caregiver, I know I will NEVER impose this onto my children. They deserve to decide how to spend their time and it won't be forced on them to drive themselves into the ground taking care of me. Who would ever want that for their children?
Best of luck.
Medicare will provide part-time or intermittent home health aides to come to your mother’s house to provide care for your mother who I’m sure is “home bound”. Medicare will pay for this service up to 8 hours a day but less than 35 hours a week. Please go online to medicare.gov and follow the instructions on how to get your mother qualified for part-time help. You can also call Medicare with questions regarding this. Getting part-time help will alleviate some of the stress that you are going through with taking care of your mother.
I quite understand your position of not wanting to place your mother in a nursing home as I’m aware that not everyone wants to be placed in a nursing home. Hopefully, you will get help from Medicare which will help to reduce your stress level.
One of the first things that my therapist told me after he listened to my long rants while I was totally lost in confusion was, “Why haven’t you been able to see that caring for your mother is a burden?”
At first, I was shocked that he said this to me. After all. I didn’t want to see my mom as a “burden” in my life. She couldn’t help that she had Parkinson’s disease. Still, her care was not fully my responsibility. I needed to learn this lesson.
Well, my unbiased therapist was absolutely correct in his assessment of my situation. His comments were spot on and challenged me to see things in the proper context.
The next thing that he said to me was, “You know, it’s okay to become frustrated and angry about things. It’s a completely normal reaction to things that are troublesome in your life.”
I needed to hear this because I was like you. I was so blind that I thought that I wasn’t living up to being the ‘cheerful’ caregiver that my mother needed.
I was wrong! No one gets through this type of situation without suffering.
When I was no longer the primary caregiver I was able see my mother in a different light. The natural resentment that I had faded tremendously. We both began to realize that living together for so long wasn’t good for either of us.
Caring for a family member for a long period of time will result in the dynamic of the relationship changing and not in a good way. Unhealthy codependency situations may occur as well.
Place your mom in a facility and then you can go back to being her daughter. You can care for her by being her advocate that oversees her care. Take your siblings out of the equation. They can have their views and you can have yours.
My mom died in 2021 an ‘end of life’ hospice care home. My caregiver days are over but I remember them well. I feel your pain. I certainly hope that you will find a way to see that you do not have to do the hands on care for your mother yourself.
Wishing you all the best.
Same thing with "don't be so short tempered and down'. Doesn't help, does it?
Most of us get caught up in this cycle of caregiving in a very slow, vicious way. A day here or there to help with a couple of things--and before you know it--your LO is running your life and you can't even go out of cell phone range b/c your LO may need you.
If you DON'T want to quit--then you're going to have to find a way to take time off to decompress. Also, if you don't want to quit, then your post is kind of just a vent and we all feel sorry for you and nothing changes.
Do you WANT change? Do you WANT your life back?
Mom will probably hate a NH. But she's probably hating what's going on now, right?
I wish my DH would put his mom in a NH. I worry incesantly about his choice to support his mother's choice to stay home (where, frankly, she is NOT safe)--rather than have the hard talk about how her care is affecting her kids. ("Kids" being 74, 71 and 67).
Minimally, if they could each take one day with her and hire in home health aides for the other 4, it would be so much better. But MIL won't allow it.
I do worry, and with just cause, that one of the 'kids' will have a heart attack or stroke before MIL dies. None of them are in good health and this CG is literally killing them.
If you really want a change? Make it a priority and make it happen.
Did that help?? Probably not because you cannot recover from burnout while continuing to care for your mother 24/7. No one can care for anyone 24/7 indefinitely. No one.
Unless she has a lot of money to pay for her own in-home help, she needs to go to a nursing home. Many caregivers die before those for whom they are caring. It's either her life or yours. What will happen to her if you up and die? Have you thought about that?
People often think that getting put in a "home" is the worst thing anyone can do. It's not.
I'm sure that you would not just drop your mother off in a nursing home and never see her again. You can still be her caregiver in the nursing home. You can be there every day with her if you want to. You can advocate for her and make sure she's clean and cared for decently.
There's another choice. Bring in homecare. Hire two aides that will split the week and stay with your mother 24/7. Or hire one to stay there during the week and one for the weekends. Then it is their job to clean the urine out of the clothes and furniture. It's their job to take a few hours to feed her. You go back to being a loving daughter who spends lots of time with the mom they love.
Please consider this. If cost is a concern, hire privately from a care.com kind of caregiver website and negotiate with possible caregivers. Leaving an agency out of it will save money. I say this and I have a homecare agency.
Home care doesn't work.
Homecare works. It fails more often when it's family providing it though.
You are not a robot. You can’t work 24/7 with no break. You cannot set yourself on fire to keep others warm.
You need a shit ton of boundaries.
You need 8-9 hours of quality sleep every night.
At this rate, you will die before your mother.
Girl, you are running on fumes, adrenaline and placebo effect. NOTHING went away and it’s NOT all better because you took antidepressants for 6 days. Stop trying to fool yourself.
None of us is buying what you are trying to sell in your updates.
1 - Get at least 7-9 hours of uninterrupted sleep every night. Talk to mom's doctor about medications to help her sleep so you can sleep. Also put "puppy pads" on the bed as well as incontinence underwear/diapers on her at night. Ask doctor about medications to help her "hold her urine" throughout the night.
2 - Eat 3 healthy meals every day and take care of your personal needs (hygiene, medication...)
3 - "Time off the caregiver clock" at least an hour and may more daily - to recharge your batteries doing things you enjoy.
4 - Extended "time off" at least 1 day per week - to meet with other family/friends and enjoy time together doing things you enjoy.
Since you have family, ask for their help - time or money to pay for your time off needs. Also ask friends and members of your faith community for help. Lastly, consider paid help.
It would be good to sort things out with your husband. The chances are that the amount you were doing for your mother was part of the problem, and moving in with her was the WRONG solution. You have a greater responsibility to your marriage than you do to your mother. The list goes children first, then the marriage, then other family members.
You are one of 6 children, and there is no reason why you should be carrying more than one sixth of the load with mother. If she goes to live in the appropriate level of care, between you all you can have someone there with her just as much as you think is appropriate, without any of you having to suffer what you are suffering now. Some siblings put on lots of pressure to ‘preserve the inheritance’, but with M having just a one-bedroom apartment and any inheritance likely to be split 6 ways, that seems like a waste of time.
Relying on anti-depressants to cope with a genuinely depressing situation is not a long-term answer. You need to change the depressing situation. Please enjoy feeling a bit better, but don’t stop trying to bring the current situation to a complete end. Good luck!
It absolutely can be a long term answer. Anti-depressants aren’t to avoid or ignore problems. Quite the opposite. They’re to help you from not being swallowed whole in a bad situation. You’re more able to face the situation with this help than without!
I wanted to provide an update today.
I have been experiencing a challenging time due to depression. I recently started taking antidepressants, and I am pleased to share that I woke up today without the heavy feeling in my chest. I have not experienced any tears or undue anger throughout the day. Surprisingly, I even found enjoyment in taking care of my mother and other activities that I previously did not feel inclined to do.
In my previous message, I may have presented a more dire version of my circumstances. However, I want to clarify that things are not as severe as I initially expressed. Since letting them know of my situation and how I was "at the end of my rope", one of my siblings has consistently checked in on me and will be visiting this week to spend a day with our mother. Another sibling has graciously offered to watch over our mother next week so that I can take some time off. Additionally, another sibling spent time with me yesterday for support. As for my situation with my husband, I believe we can work through our misunderstandings (with counseling) once I am no longer occupied with my current responsibilities towards my mother.
I would like to express gratitude for all the advice provided. While some of it may not be relevant to my particular situation, as I am not in as dire a state as my previous depiction. It was difficult to maintain perspective when caught in the depths of depression.
It was really enlightening to read Wiki100 who counseled me to stop waiting on my mom hand and foot (which I think I overdo, so I am causing some of this overwork.) It was good to get "permission" to not have to do that. So thank you Wiki100! Great advice!!
I still plan on having a serious conversation with my siblings to schedule dedicated time for them to be with our mother and allow me a break. Additionally, we will discuss the option of hiring assistance for a couple of days each week if necessary. Financially, our mother is in a good position to afford such assistance.
Upon rereading my previous message from just a few days ago, it feels as though it was written by a different person. I acknowledge that I still need to address the challenges I mentioned and develop concrete solutions, so as to avoid further chemical imbalances in my brain.
Currently, I am actively working on developing these plans.
Thank you all, once again for your support. I really needed to reach out and you were there. It helped a great deal!
What a great response to us and thank you for making it. So many people don't respond at all, and whatever our advice (some works well, some not at all) we all really do care.
I am so glad you are getting some relief, and often medication can build such a good bridge of strength to deal more realistically with tough situations. I just walked away from my own doc appt yesterday with a script for a low dose anti depressant, something I never thought I wanted or needed. She said that at 81 my blood pressure, chronic pain and general anxiety could benefit from giving this a try because the pain, BP and anxiety were "playing with one another". As an old RN I have always kind of just mustered on, and mustered through, but I so identify with what you said about awakening with that "heavy feeling" of "what-will-it-be-today".
So I am going to tear a page out of your book and hope for a bit of relief. We'll see!
You take care, and do update us, and help us answer questions here. We all come as desperate caregivers, and why we stay is to try to help others.
Again, best out to you. You are wise to pick what answers help you best, and leave the rest to float.
I've also just started on meds to help my depression and anxiety. I held off doing this, and that was a big mistake, as I'd been on it only 6 days and all the depression, anxiety and anger are gone. Still going to implement a lot of what was suggested here, but my situation is not as dire as I was viewing it. It has gone back to being a joy taking care of my mom in my new mental state! Won't let myself get that run down again!
Put mom in a nursing home today. You cannot continue doing this for mom it is killing you.
In my case, my mom is now in hospice in an AL, but I still put too much time into it (every day, putting her to bed at night so she's "comfortable") and finally had to say "no" in some ways. However that looks to you, I encourage you to try.
Also you have some good suggestions here...and I agree with anyone who says we just have to at some point put ourselves first, however that looks.
Your siblings can collectively pay for respite home care a few hours a day at LEAST--and they must. Tell them you are physically and mentally at the end of your rope (personally I was on the verge of committing myself just to get a rest). Until she gets into a nursing home (if you can manage that), they MUST pay for respite care even if that means they go into debt.
And putting her into nursing home...you can visit every day to monitor care, but have that time to yourself to get yourself back on your feet.
Best of luck to you...I am on your side and know how hard it is.
Please take care of yourself even if it means not meeting all her needs. I mean it. That comes from experience. I came close to a stroke from the anxiety and pressure. It took a friend on the outside (trust me, it WON'T be your siblings) telling me they could see my suffering and I was killing myself to wake myself up. I was suffering to keep a suffering person alive. It was pouring water into a bucket with a hole. Say' No" to at least one thing today. Please take care of yourself first.
There are Women's Shelters that you can go to.
It is up to you as to what you can handle.
This is not good for your mental health as I pointed out earlier.
Are there funds that mom has that would pay a caregiver?
I think, if you continue this you should be paid at least what it would cost to hire another caregiver. (check the area where you live $20.00 per hour is NOT unreasonable and that is based on what I was paying caregivers more than 8 years ago.) The amount that you are getting "paid" is ridiculous. Not to mention that it probably is not being reported, taxes are not being taken out so you are being cheated out of retirement earnings through Social Security when you go to file. "Room and Board" is NOT a legal exchange for work.
Just bc you are estranged from your husband doesn't mean you don't own half of that home! You can go back and try to fix the marriage with counseling or, if that doesn't work, get a divorce, split the assets, and move on. Or move into a spare bedroom even, it's still YOUR HOME.
To tell the truth there is no good outcome to this. Mom is failing. What happens when she dies? Do you imagine that all those siblings are going to let you stay in that home? Because they are not. And even sale of the home divided up will leave you with no home, no job and no job history.
Time to give the siblings the date of your exit. Then time to get a job, and whether you start at a shelter or not, you need to get on your feet and quick. This isn't going to work for your life and it isn't working for Mom's either, given she now is not even getting adequate treatment for her UTIs.
No one can do this for you. You have to make the moves. Your siblings are taking advantage of your needs. If you left your husband and have no job and haven't worked then you need division of assets, divorce, forced sale of home, and possibly alimony. You should see an attorney. You cannot go on like this because where you are going is so bleak it makes this look like a sunny day.
I am so sorry. But you are in the middle of a storm of poor decisions. I very much wish you the best. But you must get support and you must act to protect yourself. No one can/will do it for you.
I have been experiencing a challenging time due to depression. I recently started taking antidepressants, and I am pleased to share that I woke up today without the heavy feeling in my chest. I have not experienced any tears or undue anger throughout the day. Surprisingly, I even found enjoyment in taking care of my mother and other activities that I previously did not feel inclined to do.
In my previous message, I may have presented a more dire version of my circumstances. However, I want to clarify that things are not as severe as I initially expressed. Since letting them know of my situation and how I was "at the end of my rope", one of my siblings has consistently checked in on me and will be visiting this week to spend a day with our mother. Another sibling has graciously offered to watch over our mother next week so that I can take some time off. Additionally, another sibling spent time with me yesterday for support. As for my situation with my husband, I believe we can work through our misunderstandings (with counseling) once I am no longer occupied with my current responsibilities towards my mother.
I would like to express gratitude for all the advice provided. While some of it may not be relevant to my particular situation, as I am not in as dire a state as my previous depiction. It was difficult to maintain perspective when caught in the depths of depression.
It was really enlightening to read Wiki100 who counseled me to stop waiting on my mom hand and foot (which I think I overdo, so I am causing some of this overwork.) It was good to get "permission" to not have to do that. So thank you Wiki100! Great advice!!
I still plan on having a serious conversation with my siblings to schedule dedicated time for them to be with our mother and allow me a break. Additionally, we will discuss the option of hiring assistance for a couple of days each week if necessary. Financially, our mother is in a good position to afford such assistance.
Upon rereading my previous message from just a few days ago, it feels as though it was written by a different person. I acknowledge that I still need to address the challenges I mentioned and develop concrete solutions, so as to avoid further chemical imbalances in my brain.
Currently, I am actively working on developing these plans.
Thank you all, once again for your support. I really needed to reach out and you were there. It helped a great deal!
There’s got to be some middle ground between you losing your mind and mom going into a NH. When I was caring for mom every day I told my brother not only was I physically sick but I was on the brink of a breakdown and he agreed to come in 1.5 hours a week. So I wouldn’t hold out much hope for sibling help. Maybe since you have six one or two will pitch in. I couldn’t even do it for a month, let alone 2.5 years. I pray you find a way to save yourself.
Another thought, sometimes elders will listen to a perceived professional over their own children. Maybe if you bring in help it can be late afternoon/ evening so they can help mom with the depends.
I want you to consider that when mom dies you will lose that home anyway and it may happen at a time. You NEED to start making plans for that so you don't end up broken financially as well as in body and spirit.
My mom spent her final 18 months in nursing homes and in retrospect I know I could not have cared for her during that phase of her life, I never understood just how frail and helpless people can become or how long they can continue on in that state. BTW, my mom had home care twice EVERY WEEK which enabled me to leave the house - start there.
You recognize that you are overwhelmed and cannot/should not continue this. The amount of cortisol coursing through your blood every single day you continue in this realm of overwhelm is deadly to you. You may well put your immune system to sleep to the extent you get a disease that takes you before takes your parent. Yet you tell us that you have no intention of stopping your deadly behavior.
I am so sorry. That's about all we are left to say to you. I suggest counseling because I don't know what else TO suggest. I surely wish you the best, and hope you continue strong and healthy.
So, I am living with my mom and she is paying all the bills (rent, food, car, insurance etc.) And my sibs have agreed on a stipend (less than $2/hour) to give me in addition to my "room and board."
I don't know if giving me money has caused them to think they don't have to do anything else.
If my mom goes into a home, I lose my home. I am between a rock and a hard place. I am estranged from my husband and can't go back there either. At least not until major counseling happens. So, no home for me.
Until 4 months ago, when she started having UTIs all the time, which caused some dementia in her (all that went away once on antibiotics), I was totally fine. Mom and I enjoyed each other, even though she couldn't talk. I have always been "friends" with my mom, I enjoy her company.
But the UTIs kept happening, and her mind has slipped at night so that she forgets how to put on a Depends. Some nights she gets it, others, she either puts them on the outside of her PJs, or doesn't put one on at all, and puts on multiple pants. Then, she wakes up soaked and everything in the bed as well. Working on solutions for this.
I am planning on having a talk with all my siblings about each taking a weekend here with her. Problem is, I have to find a place to stay, like an Air Bnb. No one has room for her at their house (no extra bed near a bathroom etc that does not include stairs) for mom to go there.
Or, having someone come here to give me a break. But that means I have to stay here with them here, as I have no where else to go as this "cottage" is a one bedroom home.
Thanks for your insight. I will definitely be making changes to what is currently the status quo. If things don't shake out, I will be open to putting her into a home before I fall apart.
I should have asked for help as soon as I felt myself slipping. And actually, before that, knowing that I would eventually run out of steam at the rate I was going. I am angry that no one saw this coming and took things by the reigns for me. They could have at LEAST done that. Someone take charge and decide who would come to be with mom, when etc. But, I have to be the one slaving, and the one orchestrating all this "help" at the same time.
I am sure you will say that should have asked for help, but it makes me angry that they are so blind not to see that I did need help. Plus, they don't visit their mom but once every few months. Despicable. "What goes around comes around" and they will be elderly very soon. What their children see them doing, is how they will be treated.
Mom can hire caregivers. (Use her funds to do so NOT yours.)
You say you are living away from your family to care for her. What does your husband say about this?
You have given the very definition of caregiver burnout.
You say you have no health problems. (I say YET!)
Having caregivers come in and give you a break..more often than 2 times a year..is critical. Honestly would you work for an employer that made you work 24/7 for 5 months then gives you a week's vacation?
I know what you are thinking.
I know what they need. Someone else won't
I know what it means when they do this.....Someone else won't
I know she would not want a "stranger" in the house.
I know it is my "obligation"
I would feel guilty for placing her in a Skilled Nursing facility, Memory Care or other place that would meet her needs.
I have to ask you this.
What happens if you are injured and can not continue?
What happens if you are helping mom and you hurt her while you are helping her move from a chair to the bed?
You know what you need to do in order to stop being short tempered and depressed.
But by placing mom in a facility that will meet her needs you will feel like you have failed. Or having caregivers some in and help you even a few days a week will be amazing.
You have not failed.
You have done more than most people would do.
But this is effecting you, your health (mental health is just as important as physical health) and I am sure it is effecting your family.
Why do you give up your life and your siblings get to continue with theirs?
Of course you're breaking...you are only one person and you're doing the job of at least 8 people.
So unless you want to be the one dying before your mom does, you're either going to have to have your siblings step up and all take turns caring for mom, or you all need to start looking for the appropriate facility for her where she will be around other folks her own age and she will have lots of fun things to do and where she will receive the 24/7 care she requires, so you can get back to just being her daughter and advocate.
I do hope that you're smart enough to know when enough is enough(sounds to me like you're already there)and that you matter in this equation as well.
Things will not get any better unless some major changes are made.
You and your mom deserve better.
Mother of 2 adult children
Living away from my family to live with my mom to take care of her 24/7."
This is simply untenable for your physical and mental health.
So out of 6 sibs, you are the only one who is insisting that Mother can't go into a NH? WHY? What are the other 5 seeing that perhaps you aren't?
NO ONE has the "gift" to be so caring that they can be a 24/7/365 caregiving slave (which is what you are). NO ONE.
How far away is your family? What do they think of your caregiving?
Your last sentence is that you just need someone to tell you what to do to stop being so short-tempered and down.
STOP being the 24/7/365 caregiving slave to your mother. Your 5 siblings aren't doing it. You don't have to do it, either.
If you won't let your mother go a facility, then you will continue to go downhill. You will be sacrificing your own health. If you aren't going to change, then simply accept that.
You say “I got this job out of all the siblings – because blah blah blah”. You need to resign the job! Tell everyone else involved that you are running out of oil to manage, and everyone needs to get together and look at alternatives. There may be choices besides a NH. So many people on the site have said that M adjusted and actually enjoyed the AL, or the small group home.
Don’t just stay put and let the walls collapse around you!