My mother has end-stage renal failure (though does not yet qualify for hospice) and has recently been diagnosed with dementia. She has been in assisted living since last summer. The facility where she lives is one of the nicest in our area. I visit her on average three times per week, and I have spent a lot of time interacting with several of the staff members there. I feel they do a good job and provide high quality care, meals, activities, and living spaces.
My mother does like the food and many of the staff, but she feels that the care she is receiving is subpar. She calls me frequently in tears telling me that nobody cares about her there and demanding that I bring her something right away (OTC medication, food, beverages, etc. the list never ends). I think her expectations for the speed at which her requests are fulfilled is unrealistic. Often by the time I take her whatever she asks for, she already has it. I've started being more assertive lately stating that the next time I go to the grocery store, I will pick up whatever she has requested. Today, though, she got mad and sarcastic, stating that she needed it RIGHT NOW and that if I didn't care to bring it, she would find someone else who would.
I cannot and will not be able to extend the time and other sacrifices I make to invest in helping to support my mother's care, nor do I feel it is wise to give in to her never ending and urgent demands. I have a demanding but fulfilling full-time job and a life of my own. I cannot reason with my mother because she has dementia. It's just difficult to know what to say when she calls demanding that I drop what I am doing and bring her something right this minute.
Has anyone else dealt with this who can offer some tips about how to respond? I want her to know that I care, but I also want her to respect that I cannot do what she is asking me to do.
Grandson makes a demand.
Many times, this demand is unreasonable for my daughter to fulfill.
Occasionally, the demand is dangerous.
First, my daughter has to teach him how to request something with a polite question.
Then, she explains to him just why the demand is unreasonable, or even dangerous.
Sometimes, my grandson understands. Sometimes, he LOUDLY protests.
Either way, my daughter has to hold her boundary. This is both what’s best for him, and what is best for her, as well.
The difference between my grandson, age 2, and my mother, age 80, is that he learns from these exchanges. My mother with dementia does not.
Like my daughter, I must hold the line with my mother. I must decide what is best for her, and for me.
Maybe decide what your boundary is, and just keep sticking to it. It will get easier with practice!
Best wishes to you.
I am not certain why this is difficult for you to do other than to guess she trained you to be what she wants you to be, and breaking free of that training is proving difficult.
No guilt words allowed here. Guilt is for evil-doers and felons. You are merely a daughter with way too much on your plate. I can allow you to use the word "grieving" which is a whole other G-word. You can grieve that your Mom just doesn't "get it". You can grieve that you aren't God and therefore are not omnipotent. You can grieve that you aren't a garden-fairy with a golden wand. But you can't assume the martyr's mantel of guilt. If you are a Saint we have to fill you full of arrows, then pray to you forever to fix all our problems.
Practice. "Oh, sorry, I can't POSSIBLY do that today; in fact I am so busy I have to rush right off the phone now. Love you. Bye."
“I’ll take care of that as soon as I have a moment. In the meantime, see if one of your helpers where you are can get a substitute for what you need. Love you dearly Mom- Oooooops there’s my door bell HAVE TO GO!”
Use it EVERY TIME she makes an unnecessary and/or unreasonable request. If she protests or cries, repeat the response and HANG UP.
You BOTH need her to realize that her home is where she is and that people are there to help her.
BE STRONG. Remember that you are addressing her needs in the way that is BEST FOR YOU BOTH.
Suggestions:
Don't answer every single phone call that she makes to you. Allow some of them to go to voice mail allowing her to recognize the fact that all of her requests do not constitute emergencies. She will begin to understand that when she leaves a few messages that you do not return. Screen the calls, of course, keeping in mind that the AL will call you directly if there is a REAL emergency!
Let mom know you will be going to the store once a week on X day; that she should keep a list of things she needs and give you that list so you can get her the items ONCE PER WEEK and no exceptions will be made. The AL can get her other items if possible. If not, refer to the once a week rule. Remind mom that you love her, but that you also have a full time job that requires your attention and therefore, your schedule only allows you to visit her on XYZ days and shop for her on X day every week. Period.
Our mothers have conditioned us to consider their every wish to be a crisis or an emergency and to keep us on high alert and alarmed, normally for NO GOOD REASON. We need to remind ourselves of this quite often in order to keep our blood pressure down, especially as the dementia progresses to moderate stages and the crises ramp up. Taking care of OURSELVES is also important in the grand scheme of things b/c if we drop dead, then what happens to THEM?
End stage renal failure SHOULD qualify your mom for hospice services. In my experience, elders always get turned down the first time for hospice, I don't know why. But they do. Ask for another evaluation asap. It depends on WHO is doing the evaluation, but ask to speak to the nurse who's doing it beforehand. Let her know how your mom has declined recently and how she's acting out and getting more demanding and sarcastic, lay it on thick. That's what I did at mom's 2nd hospice evaluation, plus the nurse did it later in the day when she was Sundowning something fierce, so she was accepted, 45 days after she was turned down the first time. Keep after them, is my point. Once hospice is on board, the elder gets A LOT MORE attention to the tune of 3x a week that someone is coming to see them! It's wonderful and my mother eats it up with a spoon. They shower her, rub lotion on her, the chaplain comes to speak with her, the social worker, the nurse comes to hear her latest delusion about where the CGs are moving her furniture to, or what restaurant they're going to that night (they go nowhere), etc etc. Then the nurse calls me with updates and med change suggestions, so it's all good.
Bottom line is this: don't encourage the needy behavior on mom's part. Be tough but loving at the same time. It's not an emergency if she feels cold or needs Q tips. It IS an emergency if she's having chest pain. Reinforce to her to please pull the cord or push the help button at the AL (which is THE mortal sin to them, for some reason; they can pick up the phone to call us 120x a day, but God forbid they use the call button).
Wishing you the best of luck setting down some boundaries for YOURSELF as you move forward along this journey with mom.
🤣🤣Such truth here:)