My story isn't new. Many if not all of you have or are experiencing this. My husband and I are caregiving for my mom and my MIL. Yes we mostly do it together and I am very blessed. My mom has dementia and it's progressing. It is mainly her memory and high anxiety. She is thoughtful and grateful and a joy to be around most of the time. The caregiving is a lot of work and we have been doing it for 5 years. My MIL has a personality disorder and moderate Alzheimer's. She is mean, manipulative, angry, always complaining and verbally abusive which as been well before the Alzheimer's set in. Now it is just worse. She is paranoid now, hiding things constantly, putting a chair in front of the door, etc. Both are in IL in a retirement community. We take care of everything for both of them. So I have finally realized that no matter where my MIL is she will be her horrible self. She calls constantly demanding, complaining, screaming, etc. She threw me out of her house saying horrible things the other day. I know many of you will say put her in in memory care or AL. However, it won't change the situation really. Drug her? The dr. has prescribed antipsychotics but she gets bad side effects and can't take them. Oh and she has been in the ER 3 times, 1 short hospital stay, and 1 ambulance visit in 5 months. She was fine each time. She complains of being ill and puts on a very good show. Yes, I tell her to stop her behavior, it is unacceptable and herutful and don't respond for a long while (2 weeks). I am exhausted. I have RA and UC. I never imagined life like this. Moments of happiness are fleeting anymore.
Thank you for letting me vent. No one can understand this unless they have/are experienced it. It is nothing you are prepared for. I have a good support system and still it is really not fair. What do you do? Let a human being languish or be abused? It isn't a good outcome either way.
You and your husband need to schedule a break of a week or two even if it is a staycation at your house.
Caregiver stress is real. It is not uncommon for the parent to outlive the offspring that is providing their care due to the extreme stress of caregiving.
Start prioritizing you and your husband.
Outsource everything you can...laundry, med management etc.
How often are you visiting? I'd cut back to once a week for your Mom and zero times for MIL. If they can't function under this scenario put them in a higher level of care.
Prioritize your RA exercises and healthy meals for the UC. I also have an IBD and the fatigue can be rough. Make sure you are eating enough protein.
As for your mother, if her dementia is progressing and you and your husband have to do everything for her, then she certainly isn't independent and should be moved to assisted living or memory care, again, so that she has a trained staff to keep her safe. She'll get her meals and housekeeping and socialization at an appropriate level, and quite possibly a reduction in her anxiety. Then your visits with her can be focused on her and what you enjoy so much about her personality, rather than stressed because you have so much to take care of when you're with her.
It is a very hard path that you've been walking for a long time. Take pride in all that you've done and think about how to lessen the demands and restore health and joy to your life. Keep us posted. Venting is well understood here.
My mother was horrific and refused antidepressants/anxiety meds in AL . She eventually adjusted and settled.
Assisted living could take away some of the running back and forth that you are doing .
People with moderate dementia do not belong in IL . Move her to AL where she has staff to help her . Perhaps having staff around will help curtail some of her agitation . The agitation at least in part could be anxiety due to living in IL when she’s not independent . Having staff around may help her calm down and may eventually , after adjusting , reduce some of the phone calls you get .
At first she will still call you . You have to remind her to call the staff instead of you . It can take time for that to sink in .
Also don’t answer your phone all the time . Let it go to voice mail .
What are the barriers that are making it “ not so easy” to place her in AL ?
The choice you and hubby have made to do work that requires several shifts with several workers on each shift, isn't sustainable. Your throwing yourselves upon the burning funeral pyres of your mothers will not make anyone happy, and may well destroy you.
My advice is to explain as lovingly as you are able, that you cannot go on, and seek placement. However, this isn't my choice; it is yours and you must make it. Feel free to vent; letting off some steam is a necessity.
"I have finally realized" is what your mind is saying to protect you. It doesn't take into account that if you adopt different measures, the situation will change and your mind can adopt another thought such as "I understand that because we changed the situation, I don't have to accept and reach the same conclusion as I did last week." To change the situation, try new meds. Or refuse to take her phone calls, letting her scream into an empty phone. Or move her to memory care where despite what you've convinced yourself about not moving her there, it WILL change the situation because she may not be allowed to call you, or she will forget how, or she will have 24/7 team of professional caregivers, who by doing their jobs change her behavior (and she can focus her hateful behavior on them, upon which they will handle it professionally while you're elsewhere having a happy day).
I've been a caregiver x 3 for family members and now my husband, making it x 4 over the past 12 years. Husband is presently content in memory care, where I visit almost every day. I've learned that the pressure we put on ourselves is worse than the pain inflicted by our loved ones' behavior itself. How we choose to think is changeable, whereas the course of their illness is not. Our choices in thinking are often sadly based on wrong things that others have told us, such as "there is no such thing as a good memory care facility" (wrong). Caregivers in facilities are professionals. They know how to handle the situations that you can't. Or "daddy will die within a month if we move him from his hoarded home" (wrong, you don't know when daddy will die). Or "mama refuses to go to assisted living because she can't take her dog" (not true, many AL's welcome pets.)
Do not put up with abuse. Do not go back to MIL's house and risk a replay of last time you went. "Oh but I can't….." YES, YOU CAN! Change your way of thinking, and you change your world. I wish you luck in doing that.
HINT: Here's how a professional caregiver in a memory care facility handled someone like your MIL recently. "Miss Marie, I get paid to help you eat your lunch. I don't get paid to listen to you scream at me. Please stop it." Miss Marie kept it up and was warned again. Miss Marie began to swear and berate the caregiver, who said kindly, "I'm sorry, but you will have to leave the table because you are ruining our lunchtime and I don't get paid to take care of you when you don't treat me well." Caregiver got up, wheeled Miss Marie to the TV area, and said, "I love you, honey. I'll check with you later." She kissed Miss Marie on the forehead and went back to the lunch table. Miss Marie stopped cursing, and the CG fed her the rest of her lunch after the other residents had left the table. Miss Marie was smiling and pleasant by then.
I was an in-home caregiver for 25 years before going into the business of it. I've seen many people in the same situation as you. People who kept a 'loved one' with dementia out of a care facility long past the point where it was even safe to do so. Your MIL belongs in a memory care facility before her paranoia and dementia result in her getting hurt, or someone else. She needs to go into memory care.