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.
Thankfully, whenever we would butt heads, we both would apologize profusely and make up, and just try again. We got a LOT of do-overs.
I don't know that this is helpful, but you are certainly not alone. If you can lower your expectations for how she should behave, and look toward the future, especially given her Parkinson's, you may be able to turn your frustration into sympathy at times.
You are doing a wonderful thing caring for her.
I, my sister, and my brother have all experienced one or more of what you mentioned. I remember keeping and tossing all my trash in a public trash can because my Mom used to go through my trash to see what I was throwing out. Then she would have the audacity to question what I threw out. This was when my Mom still had a job!
I think I read a post that said your Mom lives in one half of a duplex. Is it possible for you and she to move to a smaller duplex where you live on one side and she on the other? Or maybe a house that has been converted into apartments where each floor has its own entryway? Or maybe two condos that are in the same building? I think you need to have your own living space as you are now an independent person and you need somewhere "safe" to decompress. However, you need to be close enough so that you can go back and forth easily.
Regarding the finances, I would suggest that you put all her bills on autopay. In addition, I would move her from credit cards to cash basis. This will prevent her from being able to order things over the telephone with just a credit card. I would also see if you can get electronic access to all her financial accounts, medical accounts, and social security. If things are under a trust, make sure she has a secondary trustee so that someone can have access to her finances, if she no longer can sign her name or walk into a financial institution. Electronic access is so that you can monitor and put a freeze on her account immediately if you suspect fraud.
Another thing that helped me out a lot, was to "be nice to myself." What does that mean? When I screwed up, I would say "oops and forgive myself" or "Oops" and think of something worse that could have happened. I can think of a lot of catastrophes that didn't happen. I'm quite creative that way.
I am a conflict adverse person. Hence, the only way I could provide help to my Mom on a continual basis was to 1) have my own "retreat" and 2) got caregivers to be with my Mom when I couldn't be there when she needed care 24 x 7. In my case, I also put my Mom into senior day care so that she would have some entertainment besides me.
Some days, it was all about survival....my survival.
I have been in your shoes 😔. So much so that I actually felt hatred toward my mom and felt so very awful feeling that way.
This is all new to you…the changing of the roles( parenting your parent), the new and odd behaviors she’s going through which even causes you to change your own behaviors etc…
In this forum there are plenty veterans who can give you information, tips and advice, so you’ll have plenty of reading ahead of you😊. A lot may be trial and error so choose what works best for you! Just know setting boundaries and finding time for yourself helps to free your mind and body a tad bit.
It’s a rough, bumpy journey. Your emotions become rattled, shaken and totally unnerved! You’ll have to set boundaries, change your thought patterns remind yourself that she is no longer the woman that was once the authoritarian figure who guided and nurtured you from infancy into adulthood. And mostly through all of that you have to just” endure” even as the tears flow… just “endure.”
Wishing you the best through this journey 💕
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.
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.
Google this, "Geriatric Psychiatrist in Alexandria VA."
How can the geriatric psychiatrist help the OP? All the medicating in the world isn't going to change the dynamic.
The mother has dementia from what the Op is saying and is also fussy and demanding.
The geriatric psychiatrist can't change that. All these people will gain from one is a huge bill that will have to be paid.
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.
I found myself in a situation a little similar to yours a few years ago when I got divorced. I was living in a different state. I came back and moved in with my mother. She needed some help and had made some bad money decisions. I was in a position to help her out and it went okay for a couple of months. Then it didn't.
I'm out now and homecare is in. I was a caregiver for 25 years. I can say that in most cases adult children and parents should not live together.
For now, you cannot allow her to be right next to you at all times. You DO NOT want a shadowing habit to form. Do not allow that. Tell her to go. If she's just sitting staring at you ( this sounds like shadowing which can be very unnerving) get up and go into another room. Don't allow that habit to form.You'll be sorry if you do.
Find a place of your own and there are care choices for your mother.
-Live-in help
-AL
-A senior community.
I totally agree that children and parents should not live together and CuriousVagabond needs to have her mother live in a facility of some kind. Otherwise she'll be in a state of anger all the time, and that can shorten one's life and cause other illnesses. (I read recently that a significant number of long-time caretakers commit suicide.)
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.
I finally got an aid one day a week to elevate my caregiving for 5 whole hours . God does that do wonders for me, I feel so liberated !. I am thinking of getting the aid to do a second day for me and see what I can have her do like maybe bring her to church would be nice .
My mom can be great for two days straight and then she turns into a nasty individual and difficult the other five days I just don’t know if it’s the old age or what because she is mobile and can do stairs as well with no issues . Maybe it’s the possible dementia thinking I really don’t know but a lot of people on this forum have agreed and spoke about the nice / nasty personalities that happen . Try an aid maybe one day a week , the expense isn’t that much ,and it can give you sanity and peace . Maybe that will help you to make clearer decisions going forward . Good luck !
She lives with you. Not the other way around. So no one has to tolerate "difficult" behavior in their house.
Don't let her lash out at you. No fights about how you do things in your house. It's your house, not hers. Remind her of this as much as needs be.
Make sure she also knows that the nursing home option is always on the table. It works wonders for "difficult" behaviors.
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.
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 wondered too if I made a mistake moving in. I am second guessing things. It seemed like such a good idea at the time for both of us. I can move out as I can live on my own, no problem. I lived on my own before this after all. It would just mean a much tighter budget for me with a child in college. But I don't think I would move out. It would leave my mom in a lurch since her end of things was that she was having a hard time paying bills and her money was so tight (it’s part of the reason she wanted me to move in). So who helps her pay for bills? My budget will be extra tight since I will have housing costs as well as college bills and my brother isn’t exactly rolling in money either (he has a baby that had some heath issues for a while and he's still paying off some big hospital bills). And if I move out, we are back to me and my brother not feeling comfortable with mom living on her own for those times she makes bad decisions.
The housing situation is complicated but basically she and my brother and sister-in-law own what is basically a duplex in trust. Mom can’t sell the house unless my brother and his wife sell theirs too. So she’s stuck there. But even if she did move, she will still have bills to pay. So does that really help her?
I have the POA and HCPOA. I am aware of her financial situation. She's basically out of savings (just has about $30K left) but still gets social security and a pension. She had over a million 30 years ago when my dad died (a combination of life insurance and my dad’s business partner buying her out). That money is gone. I think she had terrible financial advice (she hired a financial planner who wasn't a fiduciary). One good thing he sold her though was long term care insurance. But I don’t think it’s time to start using it. There is a limited amount of money she can use and if she gets to the point where she needs to go to a home, that's when she will need it.
Like I said, she’s still fairly independent and most days are good. She insists on all the cooking and she likes to do the grocery shopping. Her doctor even still thinks she’s fit to drive (just not at night). She’s involved with her church and does a lot of church stuff throughout the week. I also bring her to my gym since they have what they call Parkinson’s classes (they are exercise classes). She knows when I am working, she doesn’t forget that. It’s when I have my free time that she clings to me like a puppy dog. The reason I brought up working from home because I thought it was important to note that part of my stress is that I am in the house with her a lot. I never get away. I never get alone time.
As for dementia, I listed that because I suspect she’s in the early stages of it based on what I saw with my grandmother and how my mom is acting now. Mom sees a neurologist and her cognitive function is always good when she goes there. She passes all his tests. But she goes there during the daytime, when she’s at her best. Her episodes of being really confused are infrequent and usually happens only in the evening.
Anyway, thank you again.
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.
Um. Let's put it like this. You have made one right decision, only it may be that you want to be thinking about the *next* right decision, namely to spot the red flags that are beginning to pop up and consult your mother and your brother about her longer term needs.
The inability to weigh up everyday information [trustworthy, not trustworthy], the inability to make a choice or plan an action, the loss of her sense of proportion... in a person with both diabetes and heart disease, these point to steps down in brain function. Frustrating for you, oh yes I bet they are and I feel for you, but for her they're bewildering at best.
You do already include Alzheimer's Disease/dementia among her conditions. Has her mental capacity been assessed recently?
You are living in your mom's house.
She still feels as this is her domain.
I am sure she is frustrated that she needs help.
No one wants to feel like they are "getting older, needs help, frail, ill" and any of the other feelings that go with having to rely on someone to help you do things that you have done most of your life.
You need to change your expectations as to what mom can do.
Mom, with dementia also can not at times rely on her brain to give correct answers, carry on a conversation, decide what she wants, wants to do and sometimes how to do something.
Give her time to formulate answers, ask questions, make decisions,.
I read once that it can take someone with dementia 45 seconds to process a question and formulate a response. If you are like me in 45 seconds you have moved on to another subject or just figured mom did not know what to do so you go ahead and do what needed to be done. Or assumed she had no response to your comment or question. PATIENCE!
Is there an Adult Day Care in your area? If so get mom involved if you can. It gives her something to do and gets her out and stimulated and it gives you a break.
Mom should pay for caregivers is Day Care is not an option. It is possible that at this time she would need what is called a "companion" rather than a "caregiver". Someone a few days a week for a few hours will do both of you good.
Can you write a schedule on a whiteboard so she knows when you are working, when you can be disturbed. (schedule a bit of "me time" if this works)
I can tell you that caring for someone with dementia, with Parkinson's is not easy, it will get more difficult.
Do you have POA? for health and finances?
It might be time to see an Elder Care Attorney to make sure that you can make decisions for her when the time comes.,
AND make plans for the time when you may have to place her in Memory Care of Skilled Nursing. Does she have the funds for this?? Will she have to apply for Medicaid?
Are you getting paid as her caregiver. Getting this done also "spends down" her assets as her funds are being used for her care. This should all be discussed with the Elder Care Attorney.
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?