I posted here in the early fall. My mom's situation has changed dramatically since then. Now I'm faced with some hard choices.
About three weeks ago, she hurt herself getting out of bed. We don't really know what happened. She didn't fall. She just felt a sharp pain. Since then, she's been using a rolling walker, when she is able to walk at all. Multiple visits to her GP, the pain clinic, and an osteopathic surgeon show no injury. But her X-rays also show that the lowest vertebrae are basically disintegrating. The surgeon says that he would recommend fusing if she were younger, but that it's not an option for her.
Before she wrenched her back, she was very, very demanding. Now she actually needs me on call 24/7. I live with her, so I am here. But I also run my own business from the garage. Sleep is a thing of the past. Because she tends toward edema, she takes a water pill. That means every night just about on the hour, I'm up helping her to the bathroom, pulling down her pants, helping her clean herself, pulling them back up again, and helping her back to her chair.
Very early in the morning yesterday, she fell while trying to get out of bed on her own. There was a lot of blood and I couldn't get her up. I called 911, and she was taken to the ER. Fortunately, the blood was only from a skin tear.
I tried to let my brother and sister know what was happening. They weren't answering their phones. When they finally figured out their angles, that's when they contacted me back. I hadn't slept in about 36 hours at that point so I guess I was pretty snarky.
My brother lives several states away. He doesn't even seem to acknowledge the remote possibility that Mom's care is not just my job alone. My sister, however, went into our conversation with one goal in mind: keeping mom out of her house. When I told her that I'm not strong enough to lift Mom, she said, "You should probably start lifting weights to get stronger." Not joking, she said that.
I have thought and thought a lot since then, and I've come to a conclusion. I have to go. I've been here for two years. I surrendered my house, my life, and everything else so that I could come help. Since then, my siblings have settled into a comfortable existence where I do the work, and they call or text to give me performance evaluations. I don't clean enough, don't fix mom's hair right, don't dress her in pretty enough clothes, don't spend enough time on the couch keeping her company, don't keep the front porch scrubbed enough, don't drive her around to do things enough. Etc, etc.
I'm giving this one more year. I'm not going to start getting a plan together at the one-year mark. By 6 months, I'll have my plan. This time next year, I will be gone.
Mom needs home health now. I can't get her down the front steps to get to a doctor anymore. Not without risking a fall that could kill her. I'm calling Monday to ask her GP to order it. She and I both also need for her to have someone like an aide to come several days a week so that she can have that help getting to the bathroom and so I can operate my business before I lose all of my customers and have to shut it down entirely.
My siblings are going to lose their minds. But I have to do this. I have to get her lined out with help right now, and I have to also plan my exit strategy. If they won't help, that doesn't mean I'm not going. It may mean she has to go into assisted living or some other kind of long-term care facility. I'll just have to make sure they know I'm serious. Otherwise, they'll dig in their heels and play a game of chicken with me thinking that I'll give in and stay. If I devote three years to Mom's care, they can, too. At the end of the next 6 years, if we're fortunate enough for Mom to still be with us, we can re-evaluate the situation and go from there. Wish me luck. If anyone has advice on how to handle letting my siblings know, I'd be grateful.
I did not want to do this anymore. I am widowed, have grown children and grandchildren, work, friends, and my own life and interests. She had a carefree retirement, traveled, did as she pleased. I am not sorry I left and have no desire to return. Maybe help out a weekend now and then post-Covid on my terms. She owns a home and can sell it to pay for her long-term care if needed. Since brother has POA he can figure this all out and is perfectly capable of doing so. If he wants to consult with me, fine, and if not, that is fine, too. Whatever your boundaries are, be honest with yourself, define, and stick to them. You don't need to rationalize or explain to your siblings or anyone.
Stick by your guns. Give them a date and go.
Her GP ordered her a hospital bed and arranged for a home health nurse to come one day a week and home health aides to come three times a week. And I've hired a private care giver to come 5 days a week. Those things are going to help in the here-and-now.
My sister and I had a HUGE blowout a couple of days ago. It was ugly. She was criticizing Mom's care (as usual), and I had just had it. I told her that I've been here for two years, and that three is my limit. I also told her that I'm not waiting until the end of this year to figure out what I'm going to do. And I told her that she and our brother can work with me to figure out Mom's care, or not, but it's still going to be resolved so that I can leave. She has Mom's power of attorney and is a signer on Mom's checking account. Mom set that up several years ago when Dad died and I lived in another state. I don't think she will interfere with anything I do, but there's no way to know for sure.
Mom's condition seems to worsen daily. I called her doctor's office this morning to ask about home health and a hospital bed. I'm waiting on a call back. She has been crying for her mother all day today. She can use her walker, but not without direct assistance. Someone has to have a hand on her while she walks, and someone has to help her get to her feet.
This is getting so far out of my ability to handle it. My sister just called with her typical snarky attitude. She's mad because the furniture store she wanted me to use to buy a new more comfortable lift chair is out of stock. I told her I could go to another local one, and that pissed her off. "Just do what you want to do. You're going to do that anyway." I told her I rescheduled Mom's appointment for her COVID vaccine to tomorrow because I couldn't get a non-emergency transport with the ambulance service until tomorrow. Same thing. "Whatever. Do whatever you want." She had the opportunity to ask a nurse friend to come here to the house to give Mom her vaccine. But she said she didn't want her friend "to see how Mom lives." That translates to Mom isn't rich. My sister is, her friend is, but Mom isn't. Mom's house is an ordinary middle class place. Not fancy, but it apparently embarrasses my sister for people to know where she came from.
I'm just so over all of this.
So your brother wants that house inheritance huh? Well I agree with you 100% it is pathetic. Too bad! It's your mother's asset/money and it should go to her care.
I have a similar do nothing brother. My mom recently sold some property that she could no longer use (can't be alone there) and my brother was so angry. It made me sick when it became obvious that his anger was based on pure greed. I'm the one looking after my mom who I moved next door to me. But like you I'm not doing this forever, and using her money to get her quality care is definitely in the cards. If he thinks I'm doing years of free work as she further declines to preserve an inheritance for him he is nuts! But that is what he wanted! After the sale of the property I mentioned I was relieved the money would now be available for her care and he hasn't spoken to me since.
Anyway, I am glad you are now considering rehab for your mom. Let us know how that goes. And I know you have the best intentions for your mom, you are very loving, please don't let yourself get more burned out.
Your mother is now in need of 24/7 care. When you began your story with your first sentence I diagnosed a probable compression fracture of the spine. Very common, very painful, not curable, and will more and more affect her mobility, falls, continence, in fact every move she makes.
You are down now to your choices, knowing that they are your choices. It is not reasonable to choose to do this care, having given up your own entire life to do it. It is time for Mom to have care placement. She may require SNF; may not be able to sustain, nor have enough care in even memory care. Options about code status, and hospice need to be discussed; what life is remaining of her will be severely limited and full of pain.
Again, nothing to do with the siblings but to tell them the status and tell them that placement is to be made now. Discuss with Mom, and do the placement in LTC. Notify family prior to doing this. If YOU are not the POA, then notify you wi be moving out of the house and give them a date. Whomever is the POA can arrange the care ongoing as they choose.
I hope you have had a care contract and have at least some earnings small they may be as often in these cases the Forum sees people end up homeless, hopeless, without a job or a job history.
I wish you all the luck in the world, but where you are now is a choice and you must recognize it as such in order to move on from it, knowing it is NOT sustainable (unless you are a Saint, in which case you will die of it, then we will pray for you to fix all OUR stuff for eternity; bad job description).
I am so sorry. But that's the awful tough facts as I see them to be faced in this new year. I am sorry for your mother. I have seen many many seniors with compression of the spine. I myself and headed there and saw my brother with it. It is exceptionally painful.
I am thankful most of all that you recognize you must leave. And I would say sooner is better. Write them their certified letters today of your intention, and of your intention NOT to argue the issue. This isn't their fault; neither should you expect them to fix it. There is no good fix on this one. Get your finances together; your Mom's home may be sold by POA for her care ongoing.
Your siblings are showing you their boundaries. They aren’t nice or kind ones, but it’s the way it is. You need to figure out what your boundaries are, too.
Hope all goes well for you and your mom.
The years go by! Don’t make the same mistake that I did. I felt trapped in my situation. Get out ASAP.
My siblings didn’t help either, but were full of criticisms. All of mom’s doctors told me that I was an excellent caregiver. That’s all that mattered to me.
Caregiving usually becomes more than one person can handle.
It takes a huge toll on us emotionally and physically.
You deserve better. So did I.
Do what is best for you and your mom. Take your life back and find appropriate care for her.
Don’t give your siblings a second thought.
If they think they can do better then tell them to take over!
I admire you for accepting what you can't change, but another year of no sleep and nights like the one your described--they are huge red flags that mom needs a level of care you simply can't provide.
Of course, you can and should make your own decisions, but maybe move a little quicker? And I would def consider moving mom, not yourself. It would be a pretty big shock to her mental state, but she's slowly killing YOU.
we're in the same boat with MIL. We're all just waiting for the next fall, the one that will put her in the NH for life.
You will absolutely need to be POA or have the sib who IS be totally on board with you.
Best of luck.
Do you have control of moms finances? POA?
Your sibs have no say in this as they’ve dumped it all on you. Don’t ask for their approval just inform them of your plans for mom. Either home care or assisted living. You need to get your life back and save yourself.
I went through this with both parents. Long story but in the end I finally got them in assisted living during a medical crisis ( This is usually what it takes to force the issue of moving) and sold the house to pay for their care.
I was at the point you are now. After one particularly harrowing trip home to deal with multiple crisis I truly wondered if I would outlive my folks. I had developed AFib at this point and had to start meds.
My parents were good people but had no idea how it was killing me trying to keep them in their falling down house and take care of all their problems, bills, dementia and medical problems for five years.
My folks have since passed on but overall it was about ten years that I was their sole caregiver at home, saw them through assisted living, nursing homes and later hospice.
Also if she isn't a candidate for back surgery, you might want to ask her Dr about her getting a spinal cord stimulator implanted into her back to help with her pain. While it is still considered surgery, it's not nearly as invasive, and it should help with her back pain. I'm actually in the process of getting the ball rolling on that for myself, as I too live in constant pain in my back. Wishing you the best, and for your own sake, please don't wait another year to get the help you and mom so desperately need.
"Mom needs home health now. I'm calling Monday to ask her GP to order it." "In home care" is privately paid unless your Moms supplimental pays for it. Medicare does not pay for aides. The only time it does if there has been a hospital stay and instead of rehab "in home" is recommended. That is usually for physical therapy or maybe woundcare that family can't do. In this instance an aide is supplied, but only for bathing and maybe enough time for u to run an errand. Its not permanent.
If rehab is recommended, send her and take advantage of the time she is there.
Btu you know, all of this just reminds me. Why is it solely my job to figure this stuff out? I can actually tell you why. Because I let my siblings get away with it. * sighs *
You have done quite a bit and finding an assisted living arrangement sounds like it might be right for you at this time. Your siblings have bailed on you and that is not at all uncommon, unfortunately. Best to tell your siblings the reality of the situation and your plans for your mother. If they don't like it, they can step in, but it sounds like they will complain and go along with anything you do in the end. It sounds like she needs full time help at this point. My only other suggestion is that you all chip in financially if needed and hire a live in 24/7 for her, or hire a few caregivers on shifts for her. You've really done a remarkable job and continue to do so.
I would agree with the other poster, get help started right away.
I had hoped we would find something to relieve her pain. But her GP ordered Tramadol. It did very little to ease the pain, and it made her "crazy." Crazy was Mom's word for it. She was waking up all hours thinking someone was breaking in the house, heard voices everywhere, and believed that Dad was not only still alive, but also young. She was also calling friends and neighbors all night without me knowing it. Right now, Tylenol is where we are in pain relief. She's allergic to codeine. :(
If this experience has taught me anything, it's that I will NOT do this to my kids. I won't live my whole life not making any sort of plan and then just assume I'll descend into their lives for them to sort out.
Your siblings are going to lose their minds? Tell your sister to go to the gym it will help with her stress.
I decided on a year because I don't want to scare Mom with an abrupt change. She's so fragile emotionally. She can really be an abuser when she is in the right mood, but she's also very prone to severe anxiety.
I think if I put it out there like this, I can gradually transition and so can everyone else. I bought a house about an hour away from here. I'm not sure yet if I'll live there or if I'll flip it, but regardless, the house is a big part of my future. It will be my home, or it will help make me more financially stable when I sell. Right now, I can't even go over to clean, much less do any of the necessary renovation work. My sister's answer to that is "Well, you shouldn't have bought it knowing that you have to take care of Mom."
My brother has a 12 year old daughter. That's one of the big reasons why he thinks he is immune to any responsibility to Mom. My sister is raising her granddaughter. That's why she thinks she is immune. Neither of those things are my problem. I raised my kids and launched them into the world on their own two feet. It's what we do -- we raise our kids. If my sister had raised her own daughter instead of sending her to Mom and Dad to raise, she might not be raising her granddaughter now.
Just one question from me, Caro...why are you waiting a YEAR? Sleep deprivation is a form of torture, you know.
Do you have POA? HCPOA? Time for a facility for Mom, don't you agree?