The demands, do they keep getting worse?

Coincidentally, your letter sounds so much like the notes I wrote last night. Only, I'm 72 and the caregiver for my 49-year-old son .... If I only wrote 'my son is a lazy jerk who sits on his butt all day long expecting me to do everything for him' - Oh the awful reaction I would get... but what IF I added...he has advanced Primary Progressive MS. He is basically a quadriplegic, now. He cannot even sit up anymore. He is legally blind. Soon he will have a colostomy...His cognition is declining - I expect his brain will be more like that of someone with dementia.

Reading through comments I can see that others can relate while some cannot.

Some days my once athletic son's demands are unreasonable to lay on me when it is 100 degrees and I can no longer drive - I take the city bus.

None of us in the position of full-time caregivers of loved ones are asking for a "pity party". We only need our feelings of overwhelming exhaustion validated.

I'm a retired RN. No, I am not perfect. But I have a bag of tricks.

1) I write down the problem, much like MDaughter50 wrote.

What words I use aren't professional. It is important to remember that Caregivers are human beings, too. We all have to find a balance. Our loved ones are not going to grow out of it like a baby will.

Writing down the problem gives us time to clear our heads and our emotional buckets instead of overreacting and snapping back.

2) I look at possible causes for the demands.
a) When my son is 'acting like a complete jerk' and I want to run away from home or quit - that is a CLUE that he may be developing a UTI - urinary tract infection.
UTIs are common in the elderly. My son has a neurogenic bowel and bladder. To manage his bladder not being able to empty he has a catheter placed through a permanent hole in his belly. (I'm not suggesting a catheter is an answer for someone with dementia. This is just a medical solution for him that still carries a big risk for bacterial infections to occur.
UTIs can change personalities. They can make people mean.

b) Look for opportunities to make their environment safe, more comfortable, or independent.

*Having your thoughts written down can be an enormous help later when you address your concerns about your parents to the doctor.

Remember, you don't have to pretend to be stoic to the doctor. You don't need to dump everything on the doc either. But, that list can really help you feel and look credibly rational.

3) Setting limits or knowing when to walk away is extremely important for everyone.

Setting a limit is NOT about arguing, or putting mom or adult child in their place. It can be that you may need to "disrupt a behavior" or 'break a pattern" in your reactions. You cannot "fix" the adult with a deteriorating disease. There is NOTHING ideal about caring for a loved one who is losing control of mind/ body.

It is emotionally devastating for caregivers who end up sacrificing normal mental health balance for that loved one.

Please do not shame a caregiver. Please don't let someone shame you.

My expertise is behavior management of children not dementia. But there are similarities that can burn out a caregiver, even the very experienced ones.

Keep doing what you’re doing. Give an inch and she’ll take a mile. If my parent pulled that, we’d be gone in a NYC minute.

My Dad has a brain injury, not dementia. What your describing reminds me of when my Dad is in a ‘mode’ (my word for it). He gets determined to do something. I’ve found if I can help him do it, it defuses the situation. Relieves something. He needs to act, to move, to do. Then he and I can focus on something else. It’s not really HIM, it’s the brain injury, or the fact that it’s late in the day or lack of fluids.

With your Mom, it sounds like it’s not HER. It’s the dementia. Reasoning, admonishing her, getting upset. She won’t remember—she might remember the emotional hurt.

Deep breath. Time for you.

But when these come up “ sure Mom, I’ll take care of that right away for you.”

Or try creative, “Mom I don’t have enough gas for that trip and the gas stations are all closed. I’ll take care of that for you tomorrow.” “Okay.”

It just depends upon where she’s at with the dementia. Will she accept the creative response or is she still cognitively alert enough to know it’s a fib?

I had a young caregiver who’d worked many years in a retirement home tell my Dad they couldn’t report his missing cattle, because the Sheriff’s office was closed. “We can do it tomorrow.” Dad: “Oh, okay.” By tomorrow, he forgot all about it.

I’ve found there are no resources or support for the ‘incidents.’ I have to figure it out as I go along. I just try to be living and kind. I know it’s not really HIM.

One other thought. Even though she has three caregivers, it sounds like you are tapped out. It sounds like you need at least a couple of weeks off duty or at least a day or two off duty each week to regenerate your own energy. Is there any way to do that. Local respite care resources? Siblings? Your Mom’s siblings, cousins, friends? Are there any other demands in your life you can lighten up—job, your own home?

Stop saying “NO”. It’s one of the worst things you can do …I hope this doesn’t sound harsh ( I felt the same way early on ) but after a couple of years for feeling used and abused and treating my man like dirt I started attending CareTakers meetings. I have learned a lot … His brain is broken and it’s not going to get any better … With your mom it will be the same way , She “CAN NOT” change, it is going to be you that has to change the way you interact with her . Some of it is so simple, as I have changed my reaction to HIM the atmosphere has changed dramatically. It might sound strange but the worse he gets the easier it gets to handle him . It took a while before things started to change .
When the answer is a flat NO, I have learned to acknowledge what he said , like . “I know you would love to fly north to attend the school graduation party , we will have to give it some thought .. “ and leave it at that . Things like that .. It might not work with your mom but you never know . There is a list of “ Ten Absolutes” to use when dealing with a Dementia patient. It has really helped me . I got it from my caretakers group . I tried to copy and paste but I wouldn’t work .. Prayers are with you .

MDaughter50: Thank goodness that you said "no" to your mother. After my late mother had asked me to remove heavy draperies to take to the dry cleaners, I said "That is not happening as we just had them dry cleaned a month ago." My DH and I never really had a vacation there even though it was supposed to be. We worked our fingers to the virtual bone with my mother's looong to do list for years. It is imperative that you take care of yourself.

Bless your heart, mine is cat food and do we have some cussing dousies over a near outage.

My mom settled down a lot and is much calmer now but my friends mom remains a demanding grumpy old gal. I started saying no to my mom..but by refusing to jump each time she demanded or became needy. I would say we can do that next week or next visit. The neediness drove me crazy! A trick I use to soothe me is I call my mom by her first name {Mary} when I get exhausted with care. It separates me from her being my mom…makes it easier to cope. I do it a lot when I am alone and thinking about her or even when talking to friends. It puts up an emotional barrier. I have learned this lady is in my moms body but NOT really my mom. It took 2 years to get here but I feel better. She is healthy and may live to 100 so I need to get strong. Mom is 89. Good luck!

You poor thing, you did fine. "Invalidation of feelings', and over your lifetime, that's the key to how you're feeling now. since she'll never acknowledge your feelings, you just have to stand up for yourself, and you did fine. I was always wrong, my feelings never counted for crap, I always had to suck it up. Later in life when I was an adult, if I ever brought anything up that really hurt me when I was a child, my Mom would always say, "Oh that never happened, you're full of it, the other kids don't remember it that way". Fortunately my sister does remember me being the whipping girl for my mother's frustrations, but Mom wouldn't believe her anyway, so why bother.

You walked away and took care of yourself, because no one else is going to stand up for you but you. I tell my grandkids that all the time, stick up for yourself even to me or their parents. No, she's not going to change, this is just her personality. as children we always want to please our parents, and we try and we try, but now you're an adult and you know better. Kudos to you for helping at all, even if she won't appreciate it.

I get it. The past relationship with our parents often seeps into our response to their demands of us. I’ve come to see how often times daughters are expected to give in more and whatever little bit the sons do is so wonderful yet my sister and I are only as good as our last time at bat.

My Mom is caring for my blind bed bound Father with dementia at her insistence. But she also needs lots of support and it’s been going on so long. I can sense her decline as well. They are 85 and I’m 63 with health problems, disabled husband, and full time job.

I won’t go into my past details growing up, but my Mother expected me to take on great responsibilities of our household at a very early age and she still wants that from me. I’m not doing it this time. She and Dad refused to look ahead and make smart choices for aging in place. I love them but I don’t want to resent them more than I do already.

So acknowledge your feelings and perhaps do virtual therapy. It really helped me stand up to Mom in a healthy way. Now I won’t have regrets one day yet I’ll have done what is right for all of us.

I just want to say thank you to everyone who has commented on my post from last week. I also want to thank you for having my back to the troll who made a very unhelpful comment, no one knows what sparks that kind of behavior but on here it is usually an anomaly because we are all here for support and help. We all hurt, and the only thing I can say about that poster is that hurt people hurt people. Keyboard warriors and all, it was evident that I struck a nerve with that person and they blew up. Who hasn't.

In the week since I posted this, Mom turned up the heat and wanted me to drop everything three times to come over and either bring her something, or show her something on the TV, on the computer, etc. neither one of which she can see or hear well on. Two days after this post she called me on Skype to get her a list at the drug store and bring it across town, a 30 minute drive, on a vacation day I took from work (and everything else). I said, "I am not driving all the way across town for this." This was the first time in 25 years I'd ever said such a thing and I'll be honest, it's like a puppy that scares itself the first time it barks.

Her caregiver for the day, in the background said, "the (same drug store) is just up the street here, I can get it for you." She was absolutely incensed that I said no, but dialed it back when the caregiver said she could do it. "Mom, you can have things in 10 minutes with (caregiver) right there. Why do you need to ask me? You have three wonderful ladies to help you and they love you dearly. Give me this day." Crickets...

Maybe it takes time for her to learn (although it's been nearly two years) what a hired caregiver's capabilities are, or maybe it's just been so automatic that I said 'how high' when she said 'jump' all these years that she expects me to just be the person-that-does-it-all. But when the caregiver showed up with the groceries/items that she wanted, she was like, "oh...there's someone else that can do this?" Maybe there's a learning curve I'll give her that benefit of that doubt. But that's all. Her bills, taxes, vendors, and whatever else get paid by me (by way of her bank account of course) and I keep her lights and gas on, among other things. My husband by the sweat of his brow and vertebrae of his back has also tried to please that woman only to have her come up with more. Enough, is enough.

All I know is that for a woman who demanded so much of me, who cannot demand ANYTHING of me anymore, it's going to take some time... But for me that time is now.

Thank you forum, for hearing me out all these years. I will survive this because of all of you. I pray we all would or did have The Brady Bunch or Leave it to Beaver or Donna Reed show as families. That ain't always the case. What would life be like, if it was.

Your Friend,
MDaughter50

Divert, distract, and deflect. She doesn't understand the word, "no" or logic. Try to divert her attention and hopefully she'll forget her demand for a little while. Say, sure Mom, first, let's have a nice cup of tea/coffee, then I'll be happy to do it. You'll have to get creative with your diversion tactics. It's a phase that should pass. Trazadone was a Godsend for me. It kept her calm and less demanding without being groggy. Another post mentioned calling her mother by her name instead of Mom. I did that as well and it really helped me keep my boundaries. Good luck.

You did the right thing sayiing good-bye and leaving. Ignore her when she starts up and pay her absolutely no attention whatsoever when the demands and the asinine nonsense start up.
True she has dementia but catering to her and jumping right to it will only make her worse.
As you say she has three caregivers. So her needs are met. The other nonsense should just be ignored.