New to this and feeling alone. Which way is up?

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It seems that mom has vascular dementia although we can't get anything positive nailed down (long story). We only started down the road with doctors in October, so this is all new to me. In the process of finding out what's been going on with mom, she had an MRI which showed a recent infarct with evidence of many small, old ones. Sometimes mom is mom and other times, she's just nowhere to be found. Sometimes, she is all of mom's worst traits x 10.

So I'm working on plowing through all of this step by step and my mom is fighting me (and everyone) tooth and nail. I spent loads of time getting doctor appointments and caregiving arrangements set up for her as well as taking care of paying her bills and getting set up to manage her funds while coming down as much as I can (I live 90 minutes away, am a single mom whose daughter is now in college and have a mentally demanding but flexible job that requires 60+ hours a week of work). I lived with her 1/2 time for the first two months of this. I think I was managing pretty well for a while. All of a sudden a couple of weeks ago, mom upset the whole apple cart and undid everything that I had done for her. She fired everyone (including PT, doctors, care givers), threw out the food that I cooked and froze for her or had sent to her (mom's meals), bought loads of junk food, and said she will no longer see any doctors. She hates them all, etc. etc. I'm feeling really down and desperate and not able to cope. It all just hit me when mom called to tell me that when a doctor's office called to confirm an appointment (one that I spent ages researching and trying to get) she effectively canceled the appointment by telling them that "She doesn't live here anymore. She died." She was proud of herself and thought it was funny.

If this is only the beginning and I can't cope now, I'm really worried about how things will continue. I'm not sleeping, I'm eating terribly, putting on weight, not exercising, and having a hard time focusing on work or anything else. My mom refuses to let me hire any care givers, she insists on relying only on friends and neighbors (she can't drive anymore) or me, or saying that she doesn't need any help. When I visit her and she's lost more weight and clearly hasn't eaten, it's alarming to let her be unattended so much. Clearly she does need help. I have a sister who lives about 2 hours away with kids in high school (she isn't employed), but she hasn't been able to visit mom except for one night. I try to give her assignments to help ease my load and she does them. What am I supposed to do? Just let my mom decline because she wants to be left alone and hates everyone?

In all of this, it's the emotional toll of being the one who sees her every week that I'm struggling with. I feel alone. I feel like I can't do this without messing up everything in my life including my own health. I'm not sure what my question is, I just feel a wreck.

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"You can't control or fix your mom and her choices, but you can chose how you treat yourself."

Yes, there is an echo in here.
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Do what you can in trying to convince your mother to do what is really best for her and try to focus more on taking better care of your own health and well being which has gone out of the window. Do something good for you today. You can't control or fix your mom and her choices, but you can chose how you treat yourself.
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Thanks, everyone. :) Mom is on an antidepressant, but needs to see a pdoc or a geriatric specialist to see if what she's on is optimal (it's not). She definitely needs anti-anxiety drugs but again, she refuses to go to any more doctors. I managed to get back the appointment that is in two weeks, but I'm not sure how I'm going to get her to actually go with me. I know exactly which AL would be great for her (I have a friend here who is in the medical field and very active locally). It's a great place. They have memory care. We have funds to pay for it. My friend's mom is there. My mom might actually have a social life. They even could let her do a trial/vacation visit to see what it feels like before making a decision. Thing is, mom wouldn't even come to my house for one overnight visit to see her grandkids. So my main thing is that while I can find many solutions, she vehemently refuses all of them. What I'd like to avoid is having my mom "taken away" in a really traumatic fashion (for her and for me).

What is a geriatric care manager, Babalou? Is that like a social worker? How would I find one of those? What I'm afraid of is that all of those services in her area are connected to the people we had been working with (and were great), but she "fired" them all. In the meantime, I have to sell her car, reconfirm all doc appointments that we think she had, do additional paperwork with her financial advisor, find her a new accountant (surprise, she hates the old one), and keep on top of her meds and her bills.

And there's my job. And my family. And my own health and well-being which has gone out the window. I'm so tired and this has just begun.

Did I mention that mom refuses to stop smoking even though it's the one thing she most needs to do. We weren't home 2 hours after her discharge from the hospital from the stroke before she lit up a cigarette. She was in the hospital 2 nights after they saw the stroke on the MRI so they could check her out thoroughly to make sure she wasn't bleeding out or had a clot somewhere. She keeps telling me that my taking her to the hospital (where they "put her in the basket") is what caused the stroke and that otherwise she would be just fine. :(
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This is so sad, and ao stressful for you! Youve gotten lots of good advice above. I might only add that you might call your local area agency on aging and seek their advice and resources. One person here posted that ahe was able to engage a geriatric care manager locally who, as a professional, was able ro show her mom the very real advantages of moving to Independent or Assisted Living. Sometimes, an AL will work with potential clients before they have decided to move and get them familiar with the facility and the services , staff and residents. Folks with dementia are resistant to change and scared of the unfamiliar. Your mom might certainly benefit from antidepressant and/ or anti anxiety meds.
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It sounds like you may not be able to do much until there is a crisis. I suggest you start investigating options for when that happens so you won't have to do everything under emergency conditions.

If she fell or had another stroke, for example, and wound up in ER and then perhaps the hospital and was told she couldn't live alone, would you want here in a care center closer to you or in her current location? Look at likely care centers just to see what is available in both places, what they cost, what they offer, etc. Look into both assisted living level of care and also skilled nursing, because you can't predict what she will need in the future.

I am so sorry you are dealing with this! Have you found a support group for person's whose loved ones have dementia? That can be extremely helpful.
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Her caregivers were helping her with cognitive and physical therapy. Those points of contact were also reassuring check-ins about how she was doing in general. There is someone who comes in to clean but she needs someone to make sure she eats and to help her deal with her agitation and disorientation. They can also make sure that she takes her meds correctly. She also won't let us get her a medical alert button.

There is no way I can give up my job even if I wanted to, so no worries there JessieBelle! :) It does sound like what you both said, that she will have to do it her way for a while until she figures out that she needs help.
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It sounds to me like your mother is a candidate for assisted living. I just wish you could make her believe it, too. It can be hard to convince combative people that a change will be good. They feel like they would be just fine if everyone else would act right. They are probably frightened and holding on to what they used to know, even after it isn't working anymore.

Whatever you do I would recommend that you keep your job and your home. So many in your circumstance will quit their job and move in with their parent, then regret it. It sounds like you are doing exactly what you need to be doing. It may be that you will have to wait for a crisis before your mother will be open to changes in her life. I just hope that the crisis is a gentle one.

Does your mother have a medical alert button? If she is prone to strokes, it would be a good thing if she would wear it. I wish I had more advice for you, but I know that trying to get a resistant parent to do something is like pushing on a big elephant. We have to wait until the elephant is ready to move.
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What exactly did her caregivers do for her? Would she be more likely to accept a "cleaning service" ;P? If you rehired her caregivers and made it clear that only YOU could fire them would she let them in or refuse to open the door? It's good that you have taken control of her bills, at least you know she won't have her services cut off for non payment. As for her poor choices about her diet and doctors I don't think there is much you can do. You need to take a step back and let her try things her way. Perhaps she will soon wear the good will of her friends and neighbours and have to admit that she really does need some help.
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Thanks, Cmagnum. I do have POA for her. Mom refuses to see anymore doctors. I don't know how to get her there because I'm afraid she'll freak out at the office if she's not on board with going. I don't think that she's needs to be in a NH yet. She could manage with lots of in-home care. She's physically able to do lots of things, but her short term memory comes and goes. She is very irritable and angry. She freaks out about her computer and then calls the cable company and has them on the phone for hours or makes them come out. She keeps resetting her password and that causes a huge upset and freak out. She is too far away for me to manage these things, but she doesn't need to be out of her house. I'm actually afraid that she would take a nose dive if we moved her. Mom has funds, so that's not a huge issue. Thank goodness because I'm financially strained with the cost of college tuition right now (my daughter's father will not help).
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This does sound horrible and I can understand your feeling like you are all alone for you are. It sounds like it is time for professional care because her dementia sounds very deep. I assume that you already have durable and medical POA for her. If she hasn't already she needs to be seen by a doctor who will evaluated her for being competent or not competent. His or she needs your input in private because parents with dementia will put on a great act for doctors to looks better than the really are. I had to do that for my mother with her neurologist. I also think you need his profession opinion about if this is the time to put her in a nursing home with a memory care unit for people with dementia.

Are you spending your mom's money on her caregivers, etc. If yes, that is good. As long as your mother is considered to be competent until she has a doctor who says otherwise, there is not a whole lot you can do to take charge of someone who does not want to be helped. I don't know of any agency that can come in without her permission and just take over.

Maybe some others will have some ideas, but that is all I can think of right now. I wish the best for you and hope you will do something nice for yourself today.
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