I am starting to get nervous about leaving her during the day. I can't afford home health and her insurance dont cover it. I dont know when to start considering a home. But she's told me since I was small to never put her in one so I get super guilty and depressed thinking about it. She has not problem so far taking care of basic needs to stay by herself and her memory isn't very bad. She knows people and can tell stories about her life. Short term memory is bad. She wont look at notes we leave her. Just calls us many many times a day. He boyfriend helps some but he doesn't want the responsibility and she plays us against what we say to each other. She is also very OCD and that can be very frustrating because things can't be simple. Grateful for any wisdom
2) It’s probably time for a meeting with a certified elder attorney well versed in your states Medicaid laws. If you don’t already have her DPOA for financial and medical decisions, it’s time.
3)As to the shaking. Does your mom see a neurologist? Perhaps it’s time for a thorough medical exam? Do you suspect Parkinson’s?
When you mentioned shaking, my mind went there as I have an aunt with Parkinson’s.
Medication can help with that if this is the case.
4) It is very hard for non caregivers to understand your situation. It is difficult to understand if not on the frontlines. Many doctors don’t understand. This forum can help you as well as a personal therapist. So try to let it go with those who seem indifferent and turn to those who truly understand.
5) You are entering a difficult stage where the elder has run into the part of life where they are dependent on others to keep them in their pseudo independent state.
There is usually a point where living your life AND your loved ones life is just too difficult without outside help.
It isn’t necessary to prolong for the both of you this long difficult passage after it’s reached. But you have to reach that point for yourself. From your post and bio it appears you are reaching that point now.
6) Mom can’t help her decline. She can deny it but you already know that she has lost touch with reality. Sometimes you have to withdraw a certain amount of support for her to accept how needy she has become. Sometimes that doesn’t work and you have to wait for an emergency that lands her in the hospital and rehab and then facility care.
7) You now have a new role. Arm yourself with the necessary tools to do your job well. In order for you to gain control of your emotions, you need a plan, You need legal advice. You need legal documents in order to help her. You need to give yourself permission to continue to live your life while supporting your mom in this stage of her life. You know you can’t breathe for your mom. Nor can you anticipate and fulfill her every need.
As her needs increase you have to have the mental clarity to manage her care and not be trying to do hands on care without the necessary tools and to your own detriment.
8) You matter you! Somewhere between mom and your precious grands, carve out some time for you and your husband. This is your life. If you are like most of us, we have a short window between our parents decline and the beginning of our own or our spouses health issues. I hope some of this is helpful.
My MIL has severe short-term memory loss. Before we realized she had it, we too thought she was "playing us" against the other 2 siblings but it was because she'd forgotten what she told the others and also she was just generally confused about things. Unless she was like this in her younger years, I would not interpret this emotionally. Also the OCD may just be her repeating behaviors because she doesn't remember she already did it.
My concern (from our personal experience) is that your mom is not remembering to eat. This is what happened to my MIL and when I called to ask if she had eaten she'd give me great details but in actuality she hadn't eaten anything, she just sincerely thought she had. Her making you promise to not transition her into a care community is not a promise you can or should keep. She is thinking about some past bad experience and today's NHs are much different today. Your first obligation is to your immediate family (and spouse/partner). My wisdom is to just try to finesse this conversation with her (and it may be pointless if she doesn't even remember you had it the next day). Her memory issues won't level off, they will just get worse. The question is whether she can manage in AL or if she needs MC.
Do you have DPoA for your mom? If not, you can't legally act on her behalf or make decisions for her... This info would be helpful. Hopefully her "boyfriend" is not the one with her legal authority. Also, if you are her financial PoA I'm hoping you are monitoring her accounts to make sure "boyfriend" isn't dipping into them (sorry for my cynicism...it's from another experience I won't go into).
I wish you all the best -- let us know how it goes!