New to this and feeling alone. Which way is up?
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.
Yes, there is an echo in here.
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. :(
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.
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.
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.
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.