Trying to Get Out of Crisis Mode

calmmorn

Hi everyone,

This is my first post. I have been reading posts on this forum for the past couple of weeks and have found it so helpful. Thank you all for being here.

As brief background: I am the primary caregiver for my mother who is in her early 80s. Although we don't have an official diagnosis yet, I suspect that she is in the middle stage of dementia. To be honest, I sensed that something was going awry with my mom over the past couple of years, but with both of us living busy lives, I just kept pushing aside my suspicions. It took being in a pandemic lockdown with her to finally pull me out of my denial and ignorance. 

I am writing because I really want to get out of what I call "chronic crisis mode." My mother has always been fiercely independent and I have learned that even hinting that she may need to do something (i.e. see a doctor/dentist, bathe, brush her teeth, eat more healthy, etc) will end in an exhausting battle of wills. In addition, she has become more and more paranoid, which has made any kind of medical/financial planning nearly impossible.

Yesterday, she casually tells me that a tooth fell out. I look inside her mouth and it is clear that she is long overdue for major dental work. I ask her who her dentist is and she says that she can't remember. This sends me down a frantic rabbit's hole to find a dentist in her insurance network who will accept new patients with dental emergencies. It was not easy.

As long as my mother is unable to see that she needs help, I feel like we will just be jumping from one crisis to another. I don't feel hopeless, but I am feeling frustrated, angry and sad.  

Sorry for the long post. I am not sure what it is I need right now, but I wanted to introduce myself and wonder if others have any advice/stories about getting out of this endless crisis mode. 

Just writing this post has helped me calm down. Thank you again for being here. 

King Boo

The good news is, once we stop expecting them to see they need help (never going to happen), we, the adult children, are able to fully step into the parental role and take the reins, as much as we are able to.

An elder law attorney may have some success in talking with you there with your mother.  My very resistant LO would not plan or agree, but he was super happy to go to an appt. when it was about 'saving him money' or 'making sure he got what he deserved.'    Keeping my mouth shut was hard but he knew how to talk to him, and lo and behold, documents were completed.

A critical tool to be able to help her. 

You can at least be prepared for the crisis by harnessing her information.  It is very helpful to put together a grab and go care binder, that contains:

Business cards of PCP, geriatric psychiatrist, dentist, podiatrist, admissions dept of whatever care facilities you have researched and chosen, bankers cards, attorney card.

Copies of Medicare and insurance cards

Copies of DPOA, Living will.

Duplicates of records you would hand out in the Emergency Department, frequently a chaotic place.  Easier to just hand out records and not expect them back than chase down the originals after the copies are made.

Yes, everything can also be kept digitally, but a screenshot makes a poor medical record.  Old fashioned binder was very useful.  

Be very aware that your 'opportunity' may come in the form of a hospitalization.  Be prepared with your care model and choice of facilities for short term rehab that could morph into a LTC situation if needed.  

star26

Welcome to the forum. One thing that helped me was redefining “crisis” based on my Dad’s age and diagnosis.  Your Mom is in her 80’s and has dementia. What was important 20 years ago is much less important now and can be made even less important if you decide to make it so. Deciding my Dad could eat whatever and whenever he wanted, could go up to 2 weeks without a shower, could skip the dentist altogether if he refused and wasn’t in pain, etc. improved the quality of both of our lives and made the most sense for my Dad. His geriatric medical team, including the geriatric psychiatrist, were the ones that encouraged and agreed with these decisions. Before that, it was constant power struggles and frustration. Each situation is different, but I encourage you to see where you can pick your battles as you continue on in the caregiving journey.  My Dad giving up driving and financial control were non-negotiables for me along with other major and immediate health and safety issues. For those things, I let him be as angry and pissed off at me as he wanted. I stuck to my guns and got the legal stuff in order and eventually he forgot about it and moved on.  If you do not have financial and healthcare POA right now, that is a crisis and will become an even bigger crisis if you wait for your Mom to see that she needs help (unlikely to happen). Once you have DPOA, then everything is a lot more workable but without them you are really stuck and your Mom is at considerable risk. Get an attorney and get your Mom in to sign that paperwork if needed. If she’s already at moderate stage you are on the border of her no longer having the capacity to sign these documents and you could be stuck with having to seek guardianship through the state legal system which is an expensive headache best avoided. There are past posts here that you can search about creative ways to get your Mom on board with signing the documents if needed. 

calmmorn

King Boo and star26, thank you so much for your responses. Your wise counsel was exactly what I needed. It has really helped me to reframe the situation and reconsider what I see as "crises." I get so caught up in the struggle over daily activities, that I lose sight of what is really important. 

I have started gathering together important documents (at least what I have access to at the moment). Luckily, my mother has willingly given up driving so that is at least one less concern. 

I will start researching elder care attorneys, getting POA(s), long term care facilities, etc. My mother does not have a medical care team (as far as I know), so will need to start working on that. My mother was a small business owner, so up until about three years ago, her life was her work. 15 hour days until the very end. She never paid much attention to her health and I am sure that she never imagined that she would ever lose her ability to manage her own affairs.  

Again, thank you so much for your help. It was the push that I needed to focus on what is important. 

M1

Hi calmmom, I agree with what's been said, but I must comment ruefully that part of the chronic crisis feeling is inherent in the disease, because no matter how much you plan, your loved one will not remember what's occurred, what's been said, or what's been agreed to. I have a dental example going on myself right now-my partner told me last week that she'd broken a tooth but doesn't know when it happened, and it became acutely painful on Good Friday.  We already had a routine cleaning appointment scheduled for Monday, so I gave her penicillin over the weekend, which calmed the pain. Now she's scheduled to go back Thursday for both a crown and an extraction, to the tune of a cool $2500. But tonight she announced that she wasn't going, because she didn't want to spend the money, and besides she'd never had any pain!!!! So I had to pitch a fit to say yes indeed, we are going, no, I wasn't going to let her weasel out of it, (again, I'm the one who has to do the scheduling and driving), and yes indeed, she had been in a lot of pain. My point, again, is that you just can't get away from some of it, so don't let it throw you.