I guess that I am a new, very causal caregiver for my mom. We live together in her house. She was having some financial problems with paying bills (and paying them on time) and I am a single mom with a child in college so moving in together this past year and sharing expenses just made sense for both of us. I get to live in the house rent/mortgage free (win for me) and I pay all the bills for her (a win for her so she doesn't have to worry about that anymore). I also moved in because my brother and I were worried about her and some of her odd behavior lately (things along the lines of just starting to believe telemarketers, etc). She's mostly independent, but she does have some issues with bad days, mobility (she has Parkinson’s), and needs help around the house at times.
I am usually an easy going person and pretty jovial, but I find myself getting annoyed and frustrated at my mom in ways I never did before I moved in with her. It's like a simmering anger I have. I keep it to myself most times, but sometimes it boils over and I snap at my mom. Then I feel guilty about it all. I feel horrible like an bad daughter. How can I stop this cycle of feelings?
I've identified a few triggers. The first is my mom is so eager to please me that she has no backbone of her own. I never know what she really wants as she just goes along with what I want. Lately, she's also been making up things she "thinks" I want and acting on them too. Just minor things, but it’s weird. The latest is she's got the idea in her head that I want all the lights off all the time and she will sit in the dark thinking it somehow makes me happy. That actually annoys me because I don’t want her to get up and trip over anything.
The other is she constantly asks me questions and I feel like I am being interrogated all the time. She told me she feels like she's "making conversation" but there is no conversation. It’s literally one question after the other like a police interview. I try making actual conversation where we might go back and forth talking, but it goes no where. She just wants me to tell her things, not talk about anything on her mind. She does the same with anyone else too, so it's not just me.
I also feel like I get no space. If I go in a room to sit and read she comes and sits next to me. If I go in another room to do something on my computer, she hovers around me. The only time I get space is leaving the house or going to my bedroom and shutting the door. What makes it worse is she’s always drinking or eating too (and one of her assumptions she made up is that I like a deathly quiet house). So she comes and sits next to me and loudly chews and gulps and burps which drives me nuts. Sometimes she sits near me and just stares at me in a silent room or she sits and just watches me as I am doing something (like I am entertainment). It's unnerving.
I just feel so agitated all the time. I also work from home, so that doesn't help. I plan for breaks and they help (spend a night out of town in a hotel). But that gets expensive. I am not going to change what my mom does and even if I tried, I would probably feel guilty about it. So the only solution is for me to somehow learn to cope with things. But how? What can I do?
For what it's worth, we used to fight for a while until I figured out the reason was me doing anything in the kitchen (cooking, doing dishes, cleaning, emptying the kitchen trash, etc). She would hover around me and get upset with me for not doing things the way she would (I joked to my brother once that I felt like the cliche husband who tries but couldn't do anything right... except I am a daughter). Now I just avoid the kitchen and don't do any kitchen chores or cooking and the fighting stopped. It took me a while to figure that out though. So I know problems can be solved by me changing what I do.
Any suggestions? I don't like feeling agitated all the time and I don't want to keep getting angry with my mom.
Burned out? Absolutely. Angry? YOU GD RIGHT I AM!!! Curse God's name everyday. (whoever HE is.) My body is broken.. back, knees, certainly mental health.
l've heard... "you know, 60% of caregivers die before the recipient". (and that was from a Support Group SOCIAL WORKER!!!)
"IT'S SUCH A BLESSING (Don't feel blessed when i lift her 25 times a day and from people who never lifted a finger for their mother!!).
And "you are so lucky you CAN do this for her".
"Cheer Up". (WTH??).
Scolded with "IT'S GOD'S WILL!!! (Gotta forgive the "Self-Righteous-didnt-do-it-for-their-mothers" friends who can always tell you how to do it. Funny, I thought "honor your father and mother" applied to ALL of us)
"I couldn't do what you do". Sure you could, it's not about COULD. IT'S ABOUT WOULD.
And those that try to compare their journey of "taking care of mom" in the nursing home. IT"S NOT THE SAME AS TAKING THEM INTO YOUR HOME".
"I'll pray for you (fine, waste your own time). And it's so condescending... like i'm pathetic. I am certain all of my friend think i'm a pathetic GD fool.
I've been told "you chose this".
And my mother didn't deserve this. she lived on a farm, started working in high school to save to go to nursing school. She had 12 children thinking that was HER ticket into so-called "heaven". 20 years of DEMENTIA. TRUST ME.... get out NOW before your life is ruined. I've wasted an entire DECADE of mine.
DO NOT feel guilty for being frustrated, angry, bored, lonely, brain dead, the only one who stepped up. IT'S all normal. Just hope that you caregivee doesn't live long and do not feel guilty about it. I don;t pray. Nothing ever changes. As my mother would way... "it just goes on and on and on".....
Pissed as hell.
Why did you let the caregiving situation go on for as long as you did?
That's on you not your mother. You don't have live like you do.
You deserve a better life than the one you have now and can have it.
Put your mother into managed care.
You're telling the OP to not feel guilty. How about if you take your own advice?
Forgive yourself and don't impose guilt on yourself.
Put her in a facility and get back to your own life.
There are good days and bad days intermingled too, which makes you wonder if YOU are losing your mind? It's the nature of dementia which is not a linear thing. One day she's ok and the next day God knows what thought she's fixated on. This type of fixated thinking is impossible to "fix" too.....not as though you can convince her you don't want to live in the dark or whatever. In her mind, she's right so that's that. Logic leaves the scene and is replaced by sheer chaos oftentimes. It's ugly I know.
Get mom to the doc for a full physical exam and cognition test to see where she scores in that area. It'll be a good baseline to know what's coming up. Living together may work financially but that's only one tiny piece of a much larger equation. How you cope is by hiring help on mom's dime to allow you to get away from all this. Having free time for YOURSELF is crucial to your survival. No joke. You can't and shouldn't subject yourself to being a house bound caregiver 24/7.
I suggest you read this 33 page booklet which has the best information ever about managing dementia and what to expect with an elder who's been diagnosed with it.
Understanding the Dementia Experience, by Jennifer Ghent-Fuller
https://www.smashwords.com/books/view/210580
Jennifer is a nurse who worked for many years as an educator and counsellor for people with dementia and their families, as well as others in caring roles. She addresses the emotional and grief issues in the contexts in which they arise for families living with dementia. The reviews for her books are phenomenal b/c they are written in plain English & very easy to read/understand. Her writings have been VERY helpful for me.
The full copy of her book is available here:
https://www.amazon.com/Thoughtful-Dementia-Care-Understanding-Experience/dp/B09WN439CC/ref=sr_1_2?crid=2E7WWE9X5UFXR&keywords=jennifer+ghent+fuller+books&qid=1657468364&sprefix=jennifer+ghent%2Caps%2C631&sr=8-2
Have some plans set up for in home care and/or managed care for mom if the time comes where you can't handle the stress anymore. There's no "failure" in admitting our own limitations w regard to caregiving. I was adamant on never doing hands on care for either of my parents who lived in IL, then AL, then memory care for mom who lived to 95. They were well cared for and thrived in managed care AND I got to live my own life and preserve our relationships as much as possible.
Best of luck
HOWEVER........................
There are larger questions afoot here. You have moved in with a mother who is clearly beginning to fail. While you may once have thought "this works for both of us" the fact is that whether it is already happening or not, it WILL happen in future that the BAD side of this mutual decision/bargain will be all yours percentage- wise.
You are now responsible more for some few things, but you are also seeing what is coming. And it IS coming. And you will be sunk well within it, feeling helpless and hopeless before you know it.
We were the other day speaking of addiction, alcohol specifically, and we mentioned how you are one day just kind of self -medicating to feel better, and the next day the fine line is tripped over, and you are stuck in alcoholism and addiction. It is kind of the same in moving in to provide "a little support".
I think your anxiety comes of seeing all of this, of a future before your eyes that you cannot avoid.
I would not stay in this situation. I would move out and get my own living circumstances and allow my Mom to have hers. I would assist her to the best of my ability with some things, perhaps even with bill paying once a month. But when the time came I would honestly discuss with her her plans for her own care and safety. And that wouldn't be dependent on me.
This isn't working for you, and I think your anxiety is telling you to recognize that. I wish you luck whatever your choices.
How can someone not become frustrated when they are a full time caregiver? It’s impossible to not be frustrated.
Other people, even if they are well meaning can annoy caregivers greatly by saying that the caregiver is “blessed” to be able to do so.
When this dumb remark was said to me, I wanted to say, ‘I will gladly swap with you and you can be blessed doing the caregiving!’ Sometimes, I would say exactly that.
That usually shuts them up. Sometimes, it would aggravate them and they would respond with telling me that I shouldn’t feel the way I did. Grrrrrr!
No one knows exactly what you are going through. Most caregivers themselves have no clue as to what they are really entering into by agreeing to be a caregiver.
It’s pointless to ask someone why they are a caregiver. It’s rubbing a person’s nose in their mistakes. It only makes them feel worse. It’s kicking them while they are down.
The only truly helpful advice is to tell them to find a way out as soon as possible. Nothing is simple. Preparation for alternative plans usually takes time.
Caregiving even in the best of circumstances is stressful and very difficult.
Wishing you peace as you sort through your grief.
What is the plan for when she needs more help? Are you going to provide more help, will caregivers come in, or will your mother go to a facility?
What is your mother's financial situation?
Who is her POA? HCPOA?
What does your brother think of your difficulties? Who gets the house when your mother dies?
My mom lived in our home and it was challenging. My mother also had Parkinson’s disease.
As you know, there is no cure for Parkinson’s disease and it is a progressive disease that requires continued attention.
Not all Parkinson’s patients have dementia but some people who have Parkinson’s disease will develop dementia. So be aware of this. My mom developed dementia with her Parkinson’s disease.
Your mom does need help. I would ask myself if ‘you’ are the person that should be the one to be her caregiver.
Some people feel like family members are the ones who will provide the best possible care. This isn’t true in all cases.
Every situation is unique and many people will receive far better care in a facility for a variety of reasons.
I’m not saying that you aren’t capable of being her caregiver. I am saying that if you aren’t satisfied with your life as it is, then you should leave and allow someone else to take over her care.
Then you go back to being her daughter and take on the role of being her advocate.
Best wishes to you and your mother.
By the way, my mom lived to be 95 years old with Parkinson’s disease so you could be in this position for many years to come. She will require around the clock care as she ages. Are you up for that? It’s very hard. I did it for 14 years in my home and it nearly killed me.
I was relieved when my mom was placed in an ‘end of life’ hospice care home where she received excellent care from her nurses and aides.
I would rule this in or out and if it is sundowning, her neurologist can prescribe something that helps calm her. You can read about all the things that have worked for others, just search the term here and be ready to read lots.
It sounds like you can make this work. You are just learning what is really going on with her, I found that to be a really trying time with my dad. I didn't know anything about dementia or anything that entails, so I was frustrated by him a lot. Once I learned that he couldn't help himself, his brain was broken, it was easier to cope with. You will find that too.
I would plan your time so that you get out and get space every single day. Whatever that looks like for you, whether it's coffee at 6am at your favorite cafe or walks at noon or whatever makes you feel less oppressed by the situation, just do it. Tell her you'll be back and go.
You found a good place to learn and get supported. This could be a long road, so pace yourself and remember that it is okay to make different arrangements if this doesn't work out. You matter too!
May The Lord give you strength, wisdom and guidance for this new season in your lives.
Best wishes to you...I SO understand what you described. It is so hard to cope. But you REALLY need some space on a regular basis.
With exception of your mom wanting you to please you all the time (my mom wants ME to please HER) same situation with unending questions, etc.
I realize I dont understand the financial issues, but I think would be much better if you were not under same roof.
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