Greetings! I’m miserable. I take good care of my Mom, but I’m stressed all the time. It’s too much. I’m losing hair like crazy from the stress. I’m in college. I should be thinking of my future. Instead, I’m taking care of my Mom. She has aides, but the agency sends new staff all the time. The newcomers never know what to do, so I explain. Then another medical crisis. I live nearby. I’m considering walking away (from the caregiving). I can’t handle, don’t want to handle, so many problems. We tried to change agencies, same problem. My mom is mentally sharp, but the problems are overwhelming. She’s very appreciative of my help. She’s the best Mom in the world. But I want to stop. I want to enjoy college. She wants me to, too. I’ve become a miserable, unhappy daughter. I know she can’t handle the problems alone. Has anyone walked away (from the caregiving)? I guess those who have, aren’t on this forum.
Don't worry, everyone. I'll never abandon. I'm trying to find a good way - her health, my health. Have a great weekend!
"Don’t wait until you fall flat on your face."
Right. I am losing hair like crazy. It just falls out. Awful. My mother sees it too, all the stress I bear. My mother gave me everything in life. I'll never abandon. I must change strategy how I help.
Pray for strength and faith that things will be ok.
Do your mother’s diagnoses qualify her for hospice?
My brother qualified and when I was sick with a covid diagnosis ( my brother’s only caregiver) they came to evaluate him and gave me the backup I needed.
An RN came every week, they were supportive for me and we were up front with my brother regarding why we had the hospice.
Hospice was glad to come out and evaluate and my brother was receptive because I explained why this would be good for us.
It cost nothing and the person explained what they could do and could not do.
I know hospice in our area goes into nursing homes. I do not know how home aids affect them, but expect they would encounter that situation.
To me… the best thing hospice did was to manage things. And that seems to be what you need.
the right hospice might help you get on the right track to best provide for your mother’s needs as well as your own.
Do your mother’s diagnoses qualify her for hospice?
My brother qualified and when I was sick with a covid diagnosis ( my brother’s only caregiver) they came to evaluate him and gave me the backup I needed.
An RN came every week, they were supportive for me and we were up front with my brother regarding why we had the hospice.
Hospice was glad to come out and evaluate and my brother was receptive because I explained why this would be good for us.
It cost nothing and the person explained what they could do and could not do.
I know hospice in our area goes into nursing homes. I do not know how home aids affect them, but expect they would encounter that situation.
To me… the best thing hospice did was to manage things. And that seems to be what you need.
the right hospice might help you get on the right track to best provide for your mother’s needs as well as your own.
Plus the cameras are a good idea.
My Mom is sharp. But she's overwhelmed by all the problems. I understand. For example, new staff all the time. (The agency intentionally changes the staff all the time, with all clients). I'm trying to help. I'll find better aides. Even private aides: you never know how long someone will stay. One private aide we had, was about to start a family, so she had to stop working. Then we/I had to create a new team of private caregivers. There are pros and cons of agency/private caregivers.
"Could she or the caregivers give you a call if you need to come by?"
The caregivers call me about 7, 8 times a day. There are many problems (not necessarily medical). I'm extremely stressed. I'm trying to create a better plan for the aides: self-sufficient, so my involvement can be decreased. For example: in addition to lists for new caregivers, we now have videos that explain what to do (FAQ, frequently asked questions). This way they don't need to call me to ask.
Cameras, we'll consider yes. Thanks for helping! Have a great weekend!
I thank you for trying to help. We will keep my Mom at home. I'll find better aides. We now have videos that explain what to do, so I can be less involved.
Indeed, if you have ambitions, dreams in life - you can't become 100% a caregiver, forsaking all you ever wanted to do: get married, have children, graduate, career ---- in brief, that's called life/living.
"Give as we can & add in the necessary help so we can work our careers, families of our own, live out our lives as meant to."
This is exactly what I'm doing. I'm building a new caregivers team.
"Do not take in anyone's judgey chastisement."
Don't worry. I'm not.
No one can guess how I am: I'm someone who helps enormously. I love enormously.
"YOU need to live YOUR life."
I will! My Mom says it to me daily. She's very proud of me. Has cried with tears (joy/pride) at my various achievements.
Thanks, eatpraylove. Have a wonderful day!
If your mom really wanted you to stop caring for her she would have released you from the obligation a long time ago. Issues pertaining to moms care are always going to come up. If you are waiting for things to settle down you will be waiting for the rest of your life. Days turn into weeks. Weeks into months. Months into years. And before you know it a decade has past in the blink of an eye.
Suggestion for new caregivers who dont know what to do. You could write out a manual with all the details and information. This can be given to new caretaker to read so they can get up to speed. Have it in a binder with each page in those plastic protectors. Make an index with tabs for quick reference.
I saw your lists and video things below but I think a manual more detailed than lists may be helpful too.
"If your mom really wanted you to stop caring for her she would have released you from the obligation a long time ago."
She really does want to "release me". I won't abandon her. I'm now trying to set it up in a more self-sufficient way, so I can be less involved. Thanks for trying to help!
I'm surprised that your agency makes it a point to swap out caregivers so often. That makes no sense to me from a learning curve standpoint. You're always starting at square one! If they're not willing to work with you on a more consistent schedule -- for your mom's comfort level, for the quality and consistency of her care, and for relief for you from having to be a full-time educator for every new aide -- I would look for a different agency. My mom has three primary caretakers who rotate in and out, all of whom have been with her for at least a year (and one for 10!). They know the ropes, she knows them, they love her like family, I have personal relationships with all of them, and I can't imagine what we would do without them.
I would caution against private care unless you know the person very, very well. Too risky -- you never know what will happen and then you're the one stuck trying to find an emergency replacement instead of the agency who already has a pool of caregivers on hand. And if you stick around on this forum long enough you'll see a lot of worse horror stories (live-in caregivers trying to claim ownership of a client's home, stealing money, etc.). If you're like me you want to see the best in everyone but sadly, sometimes we get proven otherwise.
Don't let anyone tell you you're a bad daughter for wanting to step back from this role. I wish you all the strength, comfort and support you need as you move forward through this journey!
15 years, for you!
"Please do something now to (gently, lovingly) remedy your situation"
Thanks for the warning!
"I'm surprised that your agency makes it a point to swap out caregivers so often. That makes no sense to me from a learning curve standpoint."
They don't want caregivers to get attached to the elderly people. ALL the agencies here do that: changing staff continuously.
"for relief for you from having to be a full-time educator for every new aide"
That describes me perfectly.
"you'll see a lot of worse horror stories (live-in caregivers trying to claim ownership of a client's home, stealing money, etc."
Thanks for the warning! (We had theft with agency workers.)
"Don't let anyone tell you you're a bad daughter for wanting to step back from this role"
No one can guess how I am: I'm extremely loving. I helped, help, my Mom tremendously. I don't listen to anything like that. My Mom is extremely grateful. And she doesn't want to kill my life. It's about finding a good way - her health, my health.
"I wish you all the strength, comfort and support you need as you move forward through this journey!"
Thanks, you too!
Sounds to me like some of your Caregiving support "in-home care" is not that great.
First of all, Caregiving requires a lot of time, patience, planning. Not everyone is cut out to be a Caregiver. Your trying to go to College and cram all the caregiving on your shoulders. What you need is a break from it all. You need to consider assisted living for your Mom. You need to sit down with your Mom and discuss all the options. Then the both of you come up with a plan.
I been there seen it all, and it is not healthy for you to stress. Girl, sounds like you have a lot of weight on your shoulders, and it sounds like you need a break from it all. Whatever you do, do not blame yourself, tell yourself you need a break. The fact is, `when you sit down to come up with a great plan for your Mom, and with your Mom. Always ask yourself , what will improve your Mom's "Quality of Life" ?. Then research online what is available in your area. Then make a list of your options. Then sit down with your mom and come up with a plan together.
And, whatever you do, do not blame yourself, and do not feel guilty, after all no one chose to get a Disease, and anytime you need to talk, other Caregivers are here to support you.
Let me know how it works out for you, your Mom and you have a great day
Right. Very soon I'll finish organizing the new caregiver team. I hope to take a break. I wish you a great day too!
My comment is about the agency sending in different people. Our agency stated that they did not assign caregivers to a person. I was okay with that because I didn't know which way was best. I soon realized that it was a good thing as my Mom was very hard on people, and this allowed the agency to schedule different caregivers especially if the caregiver didn't like the client. However, it works both ways. If you or your Mom don't like a caregiver, you can put them on the "do not come" list. Going one more step, you can also tell the agency which caregivers you prefer and if the caregiver agrees, they can also tell the agency that they want to work for a certain patient (the caregivers new to the industry are reluctant to do this). When a caregiver and I both called in and said we liked a person, they tried to schedule the caregiver as often as their schedule permitted and we were both happy. The agency never promises, however, I understand that the agency wants the "out". Just make sure you keep track of each person and how they turned out.
One more thing. I'm a "list" person. When a caregiver first comes to the house, I gave about a 20 minute orientation tour (how to use the microwave, that my Mom wakes up all the time, don't eat in the bedroom, no television, where she is most likely to fall, how and where to help her, etc.) In those 10-15 minutes, I could get an indication of whether the caregiver was a potential fit, or wasn't coming back after this first session. In turn, for those who listened, they got a sense for what their night was going to be like. The ones who insisted they had lots of experience and wanted to just jump in and take care of my Mom, were in for a horrible night and usually never came again. I understand the file on my Mom was horrendous and long. There were even some people that I told the agency we could not retain for the night as they couldn't even make it through the orientation (I think one came in on drugs and one smelled like marijuana).
It was hard. We went through a lot of caregivers as we weeded out the ones who just didn't have the skills ("personality") that we needed. However, I had a reasonable amount of experience as a team lead and team manager, before I had to do this and we got down to a few people who were dependable and meshed well with my Mom. I also did a fair amount of coaching on the people I liked but my Mom did not and she eventually liked. It was hard work, however, I can say that I slept well at night knowing that my Mom was in safe hands.
I also stayed overnight in my Mom's house, so I could hear the interactions between my Mom and the caregiver. What my Mom said the caregiver did, did not always mesh with what I knew. We didn't realize at that time that my Mom can sleepwalk, sleeptalk and sleepeat.
Good luck. It might be the merry-go-round of the caregivers that is really stressing you out, however, having a single caregiver has its own issues also.
Orientation - I've done the same as you. I also found good people. One caregiver got pregnant later, and had to stop working. Ready do build a family. I had to interview new people again.
"merry-go-round of the caregivers that is really stressing you out, however, having a single caregiver has its own issues also."
Right, all those things are issues. Thank you for trying to help! Good luck to you too!
I believe there are categories and levels of caregiving. Most people here are hands-on caregivers; others are administrators. Seems like you fall in the latter: you manage the hands-on caregiving, which is stressful because you have to delegate the work to people over which you have little control beyond hiring & firing. Even then, your mother is an important part of that component. Still, you feel responsible for whatever happens.
What to do? You say that managing help is overwhelming for her, but you've reached that point, too. Looking into a new agency should help because switching caregivers on a regular basis makes no sense.
She seems to be overly dependent on you, & you seem to be an "I'll fix it" type of person. It's time to set limits. Review the day-to-day *and* larger problems/issues with her, try to come to an agreement about what each of you should or can handle & make a list of each. You may have to write directions for her portion, but when it's in black & white, it should show you that there's are things you shouldn't have to stress over. I'm sure the list will evolve - her physical condition isn't going away - but it's a starting point.
Summer break is coming, which should give you time to work through some of your mother's caregiving problems. They will never go away 100% but giving each of you some responsibility may make your mom less helpless, too.
Good luck, Sara. You're a caring person!
"Two, you need to take care of yourself too - take a break each day, and take a vacation a few times, when someone else is able to help out even just for a few days."
100% agree.
"So helping someone else is a good thing, it's a necessary part of life."
100% agree. Buttttttt, it's about how you help. Self-destruction isn't the way. Thanks for your kind words!
To be clear: I've never wanted to give up on my Mom. I'll never give up. I want to stop being a caregiver. I'll find a way to make the system more self-sufficient, so the aides need me less. Have a great day!
You always have to make difficult choices in life or you won’t have one.
These things will effect you and your health long after this situation is over.
If you were my daughter I’d send you far from the situation, I take it you’re an only child.
I’ve had to caretake since I was 10, it causes resentment and an inability to nurture your own family when the time comes bc you’re already empty and burn out.
Start talking to the folks in charge of these different agencies, senior care officials tell them your not going to be available. You may be attending college across the country. You can end it on your terms before things happen in a way you can’t control.
"tell them you're not going to be available."
I did exactly that - when our care team was quite self-sufficient. But now I'm setting up a new care team.
"These things will effect you and your health long after this situation is over."
I'm thinking exactly that.
"If you were my daughter I’d send you far from the situation"
My Mom tried to do that too. I won't abandon her. I'll set up a new care team. Then the stress will decrease.
I suggest investing in biz ad classes if you’re not already. Find an applied small business course, or how to structure one.
There will be a manager. That’s you. Set your burn rate to when there will be no more money of hers for aides. From there, should you choose to hire private, do so exactly as your biz ad professor says.
My in-laws hire private. She is paid 105k year but um, they are not paying attention to the liability. She gets so hurt she can’t work, she will successfully make the case she was a slave. She might to the irs too if when they catch up to her.
Thats the one thing about private. Just make yourself a company or do whatever to limit the liability from them
Thank you! I can feel you care about my life. I will find a way.
You're right that a new care team, will only temporarily solve the problem, because very likely, more care team issues will appear. We/I am looking into live-in caregiver options - but theft is a real issue. I'm looking at many ideas with my Mom.
"I would be absolutely emotionally at my wits' end if she were doing what you're doing."
Thank you. My Mom is too. We're trying to figure things out. Thanks - I really feel you (and everyone here replying) care about my life, my future. Have a wonderful day!
Is your mom able to go to assisted living for help? Is there any other family members that can help? Her family members like her mom, an uncle, aunt? Reach out. Maybe they think you are handling it OK. And don't know.
Can you write up a caregiving list for things that need to be done? That way you don't have to get phone calls. It can be in a notebook. All prepared with the meds put out for those hours. What is expected. 1, I worked places that had that.
Id make sure you take time for yourself. I bet your not doing that.
Maybe you can exercise the stress away, or go on date nights or a date day for a few hours. That way you still have down time and fun.
It might have to be planned ahead, but so what. Something to look forward to the whole week. Like go skating. A bike ride for 3 hrs at a park. Or a walk. Or have a brunch with your college friends. How about indoor skydiving with friends. I went out with school friends to afternoon brunch at a local tapas bar. It was fun. We also went to an indoor rock climbing, and then out to early dinner another time. Go try that great coffee bar. We only went a few hours bc people had commitments. Take care.
You can always vent on here.
I was taking care of my husband and finally I knew I just couldn't do it anymore. There were so many issues with his health and mental state. I spoke with his sister, a few very close friends and they all advised me to find a memory care facility to place him in. It was very difficult, but I did find one that I could afford.
He's in there now and I know he's not happy, but I had no choice. I know he's well cared for 24/7 and I have peace of mind. I thought about care givers, but it was just too costly, and I couldn't afford it. I visit him every other day and that helps me too.
You may want to consider placing your mom in a facility that will take care of her 24/7 that is also within her budget. Peace of mind for mom and also for you.
You'll have to find a facility that is reasonable and one that you can afford, it won't be easy, but you should be able to find one. Don't wait too long. There are independent living facilities that will help oversee her care and still let her be
independent. I wish you peace and hopefully you will find a place for your mom, and all will be well. My best wishes to you and lots of hugs to give you hope and peace. I know how hard it will be for you & I'm praying for your guidance and strength to get you through. God Bless you & keep you safe.
Still, I get many calls. We've now made videos for FAQ (frequently asked questions). There is also the theft problem. Some caregivers (whether agency or private) steal. No solution is easy. One needs luck in finding honest caregivers.
"Go enjoy college"
Thanks! Yes! I'll find a way - my Mom's health, my health.