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.
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!
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!
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!
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!
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!
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.
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!
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.
Pray for strength and faith that things will be ok.
"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.
Don't worry, everyone. I'll never abandon. I'm trying to find a good way - her health, my health. Have a great weekend!
I've felt the same way after caregiver for my dad for close to 17 years. Do what's best for you are your mothers relationship. I say this because being in a position that you are incapable of or don't want to do can cause a strain on your relationship. Loving somone is admitting you cant do something and find someone that's equipped to do so. I wish you the best. Sending you hugs.
Because of many reasons, my health for one, I have stepped away from direct caregiving for my mom and my husband's aunt. They both have part time aides & my sister and my husband are very active participants.
These are the things that have helped me tremendously.
1.Get groceries delivered at a time when an aide is present. Find healthy frozen meals if mom has trouble cooking.
2. change mom's insurance to be eligible for a visiting physician. There are also visiting lab services & mobile x-ray businesses.
3. Have mom's meds delivered and get 90 day refills. All insurance companies have a home delivery pharmacy. Sort into pill boxes for many weeks at a time. Aides can put boxes out when needed.
4. All household supplies I order from Amazon.
5. If mom cannot get to door we placed a lock box on the front door for aides, physicians, etc.
6. Mom needs a life alert necklace.
7. You may consider an in home security camera like "Nest" for when she is alone.
8. For a health crises find a good local ambulance service that could transport her to the emergency room. My mom has a "to go" bag ready with her wallet( no cash or credit cards) and a printed sheet of her meds and health history. Also make sure your contact info is in this sheet. The ER staff will call you.
9. Pay all her bills online and set up auto pay. Discard paper set up so no trips to mailbox.
If mom is not in a senior community she probably should be. They do have independent living apartments depending in her needs.
Good luck to you and I hope you can locate some good reliable private sitters.
We were lucky to find some at a local church.
We/I have done everything on your list - except for point (7) cameras. We're considering that. Have a great weekend! Thanks for all your effort and kindness in helping me!
I'm trying to think of a way to word it properly but the correct words are not coming to thought.
Your mom sounds like a great person & pleasant to be around, she appreciative & mentally sound.
Sounds like most of your battle is downhill.
It can be very stressful taking care of someone but at least you have the option of help, many of us don't.
Is it you "can't " help or just "don't " want too?
Perhaps putting yourself in your Mom's shoes.....if she could she would.
You have help, contact the company & ask to speak to a supervisor.
Request if they can send the same person/persons out.
I know you want to have fun but it sounds as if you CAN you just need to find the balance.
You have a great Mom & choices, many of us do not.
I look at it this way, my parents took care of me my entire life.
They worked even when they were sick or tired, took care of us, roof over our head, food on the table...went to every school open house, brownie leader..you name it
It's their turn to be taken care of.
Please don't take this wrong but you sound a little selfish - again you need to find your balance.
Thank God my Dad's legally blind, he can't see if I've been crying & I've learned working years for Disney to put on a "show" so he can't tell
On the other hand if my cat could talk...he's a wonderful listener but may rat me out for cat treats.
I came across a wall hanging that I look at everyday "You never know how strong you are until being strong is the only choice you have"
Maybe reading suggestions you can pick & choose advice & find your balance
Be Kind!
Daily life has become much easier, but CountryMouse is right; the worry and the background stress doesn't go away. Visiting her is sometimes okay, sometimes traumatic. I go with gifts and a big smile on my face and give her lots of hugs and always tell her I love her. Then cry on the way home. But I know I couldn't look after her any more; it takes two carers to move her around and get her to eat anything and so on...
If you need to walk away, you should, for your own sanity. I know how hard it is when you love someone but you just can't cope any more. It's easy to say 'there's no need to feel guilty' (and I don't any more, or only a bit), but be kind to yourself and know that you did all you could. We're not all cut out for this journey. xxx
"Visiting her is sometimes okay, sometimes traumatic. I go with gifts and a big smile on my face and give her lots of hugs and always tell her I love her. Then cry on the way home. But I know I couldn't look after her any more"
I feel for you, and wish only good things for you and your Mom.
"If you need to walk away, you should, for your own sanity."
I understand what you write - to be clear, I don't mean abandoning my Mom. Thanks for your kindness.
what you really want is happiness for the both of you. The stress of feeling alone and carrying the weight of the world on your shoulders is wearing you down. I know…although I’m in my 70’s, I am in your situation. There is nothing I would love more than to be able to enjoy my retirement & family. But, like you, I feel stuck.
looking into an assisted living arrangement may be your very best option. They would give your mom excellent care, and allow you to return to having the loving mother/daughter relationship you crave. This is not walking away…this is finding peace for each of you.
I wish you the very best! (I’ve already informed my children I will never live with any of them. I know you understand) God bless you🙏🏻
"It’s not that you don’t want to be a caregiver."
No, I truly don't want to be a caregiver. But we might have a different understanding of what that word means. I love and - care - for my Mom. I don't want to be her caregiver. She doesn't want that for me either. She didn't give birth to me to become her caregiver, she says. In addition, she can see the physical stress it's putting on me, and it affects my studies. My mother has always been a feminist - therefore, even more so, she doesn't want me to be her caregiver. She wants me to have my own life. I wish you the very best, too!
What are you planning to do?
PRO TIP! If you are paying privately or with Long Term Care insurance, the first question you should ask when calling an agency is, "Do you accept Medicare or Medicaid?" If they say Yes, hang up and cross them off the list. There is a huge difference in the type of care and type of caregivers you will get from a (good) private agency than a government-paid provider.
Do you have a set schedule for care? In an extraordinarily tight marketplace, it's hard to find an "at-will" caregiver. Set up a specific schedule (preferably 6 hours or longer shifts) on specific days. (Flexibility is good, consistency is better!)
Be clear and precise about the tasks and responsibilities your Caregiver will need to take on. Mom needs to be showered, on Monday, Wednesday, and Friday. The Caregiver needs to leave three meals in the fridge for the next day. Ask mom what she wants for lunch, don't tell her what she's getting for lunch. Those are the types of directions that leave the Caregiver empowered to provide for your mom and provide your mom's care. Communicate this clearly to the agency and the Caregiver.
Make it clear to the agency that you want one Caregiver (or a small team) taking care of your mom. A different Aide every does nothing except make the agency wealthy.
Don't make the Caregiver, the maid. First, you are paying a lot of money for someone to dust the house, but more importantly, you're taking away from your mom's care. The Caregiver doesn't need to be working up a sweat every minute of every day. A good Caregiver will talk to your mom, ask her questions, and communicate and entertain your mom. Those are the things that will make your mom more comfortable and help her recover faster.
Trust and verify. Have your Caregivers keep a care log and ask your mom for feedback every day. Give feedback to the agency and ask the agency to provide coaching and correction to the Aide - that's their job.
Finally, quit shopping for the lowest price. There is a reason some things are cheap! On the other hand, the agency with the highest price probably has the best salesmen, but not necessarily the best aides. Before you start a conversation with a new Agency, find out who you are talking to. If it's an Account manager, intake manager, etc. Ask to speak to the scheduler or the person who will be staffing your mom instead. If they won't let you do that before you sign the contract, that probably means they are more concerned with their profit margins than your mom's care.
We don’t choose caregiving… it chooses us. It is a very difficult job no one applies for. And no person wants to be dependent on someone else for their care. But now they are. And we are their daughters, the ones the gave birth to and took care of and raised, whom they look to for help, reassurance and loving care.
We are now in this place and time where God can get to our hearts and teach us lessons like giving, patience, forgiveness, understanding, sacrifice, selfless love, and service to others. He wants to develop our character and service ability so that we will become stronger in our own lives.
Caregiving is one of the highest forms of love, and giving we can do for our loved ones, or even those we don’t know. Our parents now depend on us with their very lives as they cannot and do not know what to do or how to take care of themselves. And we must remember they took care of us and raised us all those years when we were helpless and didn’t know what to do or how to take care of ourselves.
Some day you and I may find ourselves in similar health situations as our parent and I pray someone would stay with me and help me through the most difficult time in my life.
It is good that your mom has you in her corner and that you have caregivers coming in. Yes I have to continually train the ones we have too. Reach out to others to build a team to help you with her needs with financial, medical. Legal, etc.
I will be praying for you to find peace and joy in it all and build a stronger relationship with your mom while you can . 🙏🏻❤️
Of course. I agree 100%. I'm doing all I can, more than that.
"I will be praying for you to find peace and joy in it all and build a stronger relationship with your mom while you can."
We have a wonderful relationship. I thank you for your help, Loveandhope!
it is time to talk with Mom and possibly your local agency on aging. You need guidance on what to do to make sure Mom has continuity with Caregivers and that will allow you to have more freedom and less stress.
have you and Mom considered assisted living? I had to do this with my parents and it turned out to be the best for all of us. It is at best a part time job but I know that my Mom (Dad passed) has a Dr who visits her, regular staff etc. I take care of all financial and other issues for my Mom but she is happy despite being bedridden.
you are a wonderful daughter and your Mom seems very caring and concerned so I know she will want to make things easier on you.
i really think finding a regular caregiver for Mom is the way to go. I did and agency for my Mom and it was a nightmare. I was in another state and intil the facility was done being built near me we had to have in home caregivers through an agency. There were times they didn't show up, they could never find the key etc.
If it was going to be a permanent situation I would have found a regular day and night nurse.
hugs to you and your Mom
Yes, you are young, and yes, it is time to grow up... it's not without pain. With all the pain life can dish out... I try to consider it's natures way of letting us know we are alive, though I wish it felt better. Take heart, you are not alone, especially in wanting to run. Don't, please.