I can't handle being my mom's live-in 24/7 caregiver. What do I do in this situation?

My guess is your sister will step in after you leave and force your mom to move into a better living situation. They will both blame you but hold steady. I would tell mom and sis exactly why I was leaving so they clearly understand. You can also say it is your doctor's orders. If sis balks ask her, "Why do you think I should do something you are clearly unwilling to do?" Lay out, again, what you ARE willing to do - help her downsize, find a new care arrangement, ask a local church to visit, call and talk to her frequently, etc. I'm praying your life gets better.

Folks, I turned to youtube to look for motivation for my mom, how to stay healthy at age 100. I showed videos to my mom, age 98. These videos of seniors who are fully functioning centenarians are truly inspiring. The isolation of being a senior and also the pandemic, and failing health, is crushing. Whether they helped my mom or not - it did help me to focus more.

You and your mother have to plan for her condition to get worse. There may be a time when she can't leave her bed at all and needs to be cleaned and cared for in bed. It may take 2 people to do this. Would you even be able to do this on your own? She may have to move to a skilled nursing/assisted living facility or even a hospice facility or have 24/7 care in her house. What options can she afford? You'll have to tell her that you can't do it alone. Can she afford to hire people to help you with cleaning and other things so that you can get breaks while you work out what needs to be done? Especally during the pandemic, it's very important that she get her paperwork in order while she is still mentally capable, with POAs for medical and financial matters, a living will so that you know her medical directives, a will, and some banks and financial institutions have their own POA forms. Social security/medicare should also have on record who can speak on her behalf. You may need an attorney to help with this. Maybe the attorney can help her focus on the importance of doing this. Get connected with a social worker and elderly care networks who know what the options are in her locality and can discuss options with you. She will need help at some point with decluttering, cleaning the house. Can she afford to hire someone or a team of people to help you with this? This would be needed if you will be getting home care for her or if you will be selling the house (and to make your stay better). If strangers are going to be coming into her house, be sure that her valuables and financial papers are locked up. Good luck!

Hello, thank you all so much for your answers.

For an update, my mom just started hospice on Saturday, the 16th, and at this point I decided to stay and help as much as I can, since we don't know how much longer she has, and with hospice there is more help and resources and I think respite if I need it.

I feel good about this decision, and I feel good about actually making a decision, I think being so indecisive was adding a lot to my stress.

I feel terrible for you. Your mom is using guilt to manipulate you! The fact that her living conditions are unsanitary and drug infested and that your mental health is suffering is reason enough for you to take charge. You must not continue letting her do this to you. While I fully understand that your mom is in poor health that doesn't give her the right to ruin your life. Make an appt with a lawyer and tell your mom you are taking her there re a POA. If you let her know that this will ensure her final wishes re her health care will be honored she might be more cooperative. If she isn't cooperative take her anyway! You absolutely need to have a POA. Tell your Mom that because she is refusing outside help your health is suffering and that you need to make other arrangements for her care. Then visit retirement/nursing homes or assisted living facilities. Get her accessed by CCAC. Once you have determined what level of care she needs visit a few places and take your mom to see them. We did this with my mom who is 92. She agreed on a room at a beautiful retirement home but changed her mind 2 days later. We eventually had to tell her nicely that we had picked out a room for her and that her condo was being sold. We moved her in a few weeks later. She loves her room and the food and gets her meds on a regular basis. Despite her initial reluctance she has adjusted very well. Your mom may adjust or she may not. That is her choice, not yours. Do what is right for your mom and let her decide whether she is happy or unhappy. It is our duty to see that our parents are safe and cared for but you don't need to sacrifice your health and happiness because she is being difficult. Tell your mom that you love her and that a move is the best thing for both of you. If she doesn't accept it at least you will know that she is getting good care. Her stubborn refusal to be happy and agreeable should not be your problem. Take charge and preserve your health and sanity. Good luck to all of you.

I can empathize with the mess of stress. My husband and I took care of my mom for 5 years when she had Alzheimer's. Assisted Living just didn't work. She was miserable there. There were days I told Hubby, "I can't do this anymore," and he'd say, "I know," and I went right back to doing it. I tried to find the humor in the situation, such as when my mom wanted to tell someone that she had pounded the pavement, looking for an accounting job in NY after college, but what she said was, "I walked the streets of NY, if you know what I mean," My mom might have been a sweet talker, but she wasn't a street walker. I even wrote a book about our travails called, "My Mother Has Alzheimer's and My Dog Has Tapeworms: A Caregiver's Tale." I wrote it with humor and heart, because, as you know, you need both when it comes to Alzheimer's. Maybe your local Area on Aging has volunteers who could sit with your mom for a few hours here or there. You could warn the volunteer in advance that your mom might accuse her of stealing, (the way my mom did) and to not take offense. Your local Alzheimer's Association might have some resources and/or suggestions, too. Maybe you could tell your mom that the person who's coming in is doing a study on people from a certain region, (maybe your mom's hometown), and your mom's input would help this other person. (I learned to be creative when it came to "adjusting" the truth a bit, when it came to dealing with my mom with Alzheimer's.) In that way, your mom would feel that she is helping someone else out.

Given all you say, irupop, you need to start focusing on your needs. (Congrats for posting this question, you've just done that!). Except for the uncle part, a lot of what you describe was my situation. I got roped in for over two years from what was supposed to be two months. During that time my mother started accusing me of stealing from her, though my home was across the country and I only had one bag of my clothes and toiletries. My mother told everyone she could how horrible I was, which wound up alienating me from the rest of the family.

I only tell you this as during that time I read and posted here many times and heard the same thing over and over - you need to get out, get your life back and help your mother from the distance you need to take care of yourself - or as is my case, give up on trying to help as it will only be met with hate and criticism and dangerously false accusations which will in time ruin your life. The longer you stay, the worse the damage to you.

You came to help which shows you are a good person. Give yourself some of the love and care you are giving your mother. You deserve it.

Nursing home is your only other alternative unless another family member will take care of her. Trust me they can live years and years and it only gets much worse

First of all YOU are not doing yourself any good being in an environment like that. eventually YOUR health will deteriorate - then what?  I would tell your mother that you can no longer live there and that either she will accept help from someone other than you or she is on her own.  It sounds harsh but a hoarding situation is not even good for her.  it is only going to make her more sick.  She might not like the idea of having to go somewhere else and the only thing is that she might get depressed, but her breathing will be easier than trying to breathe in dirt, dust, mold, etc.  I am sure there are more things in that house other than spiders.  Contact the office of aging in your area and ask what can be done to help your mother.  I wish you luck and hope someone else has more ideas.  But please take care of YOU, otherwise, you will become sick.

There are so few ways that a terminal patient can show autonomy, so sometimes they become very, very stubborn, about both large and small things. If your mother refuses to let anyone but you take care of her, hire someone anyway. Let that person sit in the room and just talk with her. It probably wouldn't be long before she felt comfortable enough to let the person help take care of her. (This worked with my late fiance, who flatly refused to let anyone help until he talked with the aide a couple of times. Then it was suddenly not a problem.)

Please look online for a form will, and also a Medical Power of Attorney form. Then, no matter how much your mother protests, just have her answer one question at a time. It is essential.

Can you take it upon yourself to tackle clearing out your own room? You don't want to sacrifice your own health by living in unhealthy conditions. Discard those things that are trash WITH the trash, which I'm sure you're still putting out every week. Even a few things at a time will go a long way towards an ultimate clean-up.

Also, why don't you have a bedside commode? Then your mother wouldn't have to transfer but one foot from the bed. (If you get one, be sure to get commode liners too so that the "results" can be easily thrown away.)

Good luck to you. I know it's hard, but you'll get through this.

Your move to Hospice sounds like a good start. Maybe the Hospice Social Worker can connect you with senior services or someone you could hire to help deal with or clean up her home.

Your mother might not like it, but don't let her guilt-trip you into jeopardizing your own mental and physical health.

My dear soul - no one could or would put up with this situation. YOU should not have to live in premises like that and you must remove yourself at once. It will only get worse in many ways. This woman obviously has dementia along with medical problems. She should NOT GO INTO SOMEONE'S HOME TO BE CARED FOR. Disaster looms on the horizon. Some how, she must be placed into a suitable facility where she can be monitored and controlled. She brought this end onto herself. You are not wrong in not wanting to be her caretaker - how could you given the circumstances. Remove yourself - now.

After reading the question. I wonder if you are downplaying the hoarding/ clutter situation out of your kind heart. The clue being your mom was afraid of someone stealing her things when her own precious lungs are failing her. If someone offers to help you take it.

The compassion you have for your mom is amazing. But please extend that same compassion to yourself. Guilt is a powerful emotion and sometimes it clouds the situation. I hope you can find some outside resources in your area.

I feel for you. What your mother is expecting is way beyond what you or anyone in the family should have to do. She is manipulating you by making you feel guilty. You should not feel guilty; the fact that you have remained her only caregiver and in those conditions for this time is laudable, but it has to stop. Your health is at risk.
You probably have done so but if not, see your doctor about antidepressants - I'm 24/7 caregiver for my husband and even though he is easy to get along with (in spite of Parkinsons and dementia). It is stressful and tiring and at times I'm ready to give up. I do have a caregiver come in for 2 afternoons a week and that break does help.
Her condition sounds like a nursing home, or if the doctors feel her mobility can improve with rehab, perhaps assisted living if she can afford that. Frankly, if she refuses to accept that (and accuses you of moving her closer to death), the consequences are on her not you. She also needs psychiatric help, given her hoarding and behavior.
I wish you a solution that is best for you, and her.

Get you sister to help and at least get a medical surrogate form . Mom would not give anyone  POA but she did give medical surrogate get it if you can. Social Security doesn't honor POA but you can become a representative payee

I'd talk to her doctor about her housing options. Don't even give living with her a second thought. Your mental health is important.

1st thing. Just because someone can't walk very well doesn't mean they can't use a walker or wheelchair themself in to the bathroom.

They can also use a walker or wheelchair herself in to the kitchen to fix herself a microwaveable breakfast, Lunch or dinner.

My Dad was doing it at 95.

You should let her know that you will not be looking after her 24 7.

You can install cameras to kerp an eye on her 24 7 whenever you want to check in on your cell or computer.

I had my son install Nest Cameras in my Dad's house.

Your mom's options have to do with how much money she has.
1. Hire a Live In
2. Hire a Caregiver for a few hrs a day.
3. Go to a Senior Home to live.

She just might be able to do more fir herself then she's letting on.

Prayers

Your Mom is a controller and a manipulator.
As was my Mom, for a great portion of the 10 years years I cared for her. You gonna have to put on “your big girl bloomers” then say & do what is best for your mom and yourself. Tell her like it is. Until you do, nothing will change. What wonderful suggestions and alternatives she is offered by you wanting to do the right thing lovingly caring for her. Your mom is a piece of work! Girl get out of that mess!! Imagine you are someone else... not you. Now read your post. What would tell the writer?

My Mom? She graciously slept away November 22, 2020, Following my own advice and sincere pray ... eventually, it was an honor to live with and care for my mom of 94 years. But it was a process of ACTIONS. Your mom like mine didn’t suddenly begin displaying this obnoxious attitude and behavior of manipulation ... it’s always been there. OMG!! And the place is nasty, cluttered and unsanitary! I’m through.

But let me comment on a classic statement of control, “you don’t take care of me [like I want] I’m going to die”. Really.
What should you do? Grow up.

Hi there, I'd reach out to her primary care provider and get some suggestions. Also, what about some home care options or looking into assisted living?

I'm not sure if your mom is trying to manipulate you or if she is just afraid. I suspect it is a little of each. At the risk of sounding callous, we are all going to die - putting your mother in a home is not going to hasten it. She may in fact receive better care than you are able to provide. I mean no offense by that but these homes are staffed by nurses and personal support workers whose sole job is to assist and care for the residents. Your mom's meds will be supervised, she'll get regular meals and will have a call button to summon help. She will also have opportunities to socialize with others. Your mother might be afraid that her family will stop visiting her if she enters a home. Try reassuring her that this won't happen and point out all the positives. You and your mom have both been through a lot. You need a break from each other in order to maintain a healthy relationship. Good luck to both of you.

Imho, you should speak to her town's elder care worker. They should also have on staff a social worker. Start there. Prayers sent.

Please put yourself first. It may take some adjustment on her part to go to a nursing home but your life as you know it will be over quickly if you agree to be her 24/7. It has destroyed my relationship with my mother by letting her move in.

Hire a caretaker!

HI,
I understand completely. I hope that makes you feel less, guilty, angry, frustrated, and down right sick about how you feel right now. I also am in the same boat. I dont know why I ever decided to do this. My mother does things on purpose to make my husband and I miserable. she lies, cheats, never takes responsibility for her actions, is never wrong, and will do anything and everything and take it to the last degree to save her face. She purposely disrespects me by lying to friends, family and relatives and doctors hospitals, whom ever she can to save face. She has thrown me under the bus many times, reported us for abuse one of those is isolation. She drives, so I am think how can that be, but she means financially because I pay her bills and keep her payments on time to credit cards she has run up. She feels she doesnt have to pay those. SO many things that I have no feelings anymore, I only know that I want her out. the system is broken no one will help us, give us answers, or step up because shes a master manipulator. She has done this all her life and has very few people that like her, want to spend time with her. I told her straight out when she was whining about her grandkids never coming to see her or get involved with her, and why. I am the one who tells her right out why. And then she hates me for it and then begins the anger and nastiness. I am the one she cries to. Everyday she cries but refuses to take her medications correctly. But now she is (able to do everything for herself) she states. She has been through bankruptcy 3 times but she is convinced she can handle her own money which is minimal and is very tricky to control so she has spending money because her most favorite thing to do is shop. Even amongst Covid which she will not comply with the rules and I have nightmares thinking it will get me, because of her, but she doesnt care. She drives yet, and goes out shopping (looking at everything and having fantasies of how each item would be great to have, all day long. I hate the fact that she can be so right on, when she wants something but acts like she cant do anything at times and just cries and uses her tears to manipulate everyone else she can find she has left, against us here. She has pds where she is confused and cant remember how to turn on the microwave but I cant get anyone to understand that she has those episodes. We called the Police twice just to have a third party present when she gets difficult. We also sent her to the hospital to have a psych evaluation and she was so mad she made appts with a lawyer to sue us all the while living here. she will come out of her room humming like she is very happy but that is not the case. She has gone to OUR neighbors and told them things that should only stay in the house. Such as my personal health information. When I confront her she says I am lying then calls her doctor or whom ever to say we are abusing her. I hate this and i want her out. There I said it. I want her out. But with COVID and nursing homes and available rooms or apartments and the waiting list. It just goes no where. I am disabled and wondering where my rights are. Why am I subject to so much stress that makes my health worse while she scoots around singing after she does these nasty things. I tell you I am so uptight. I have a movement disorder and its getting worse and really gets bad when she starts her stuff. She can be a loving woman, and believes she is, but at the same time a real witch. I love her but i dont like her. I want her out. I told my husband I have a plan and that is to sell our home so we can live on our own and she has to move. She said the police said we cant throw her out of our home, which we never said that, we said the house rule is you get mental health and keep going and get something done or you cant live here anymore. I have to inject Methotrexate weekly to control psoriasis. Well that doesnt work anymore either. She doesnt care.

I was saddened to read about your situation. My situation is somewhat the same just a little different in some ways. My mother agreed to move to another house - one bigger so I could help her and we could have enough room. She currently lives in a small house and now that she needs me to live with her I have no room to run my business or have my stuff that I use all day. I found a place that would be perfect as it has a an in-law area with a separate entrance that she could live in and if she needs help, since I’m not a skilled caregiver, she could have that assistance without me falling over them like what would happen in her present house. I took my mother to get a place next door to a friend of mine in an independent living facility and she signed up then she called the office and backed out. She promised me she would move somewhere that I could help her and be comfortable myself and now I know she has lied to me since she refuses to cooperate and I don’t know what’s going to happen now and it’s a daily struggle with the way things are going.