This is my first post to the group so if anyone is reading this, thank you.
I needed to find someplace to vent. I usually do so with my friends but I don't want to risk burning them out so I searched for support groups and found my way here.
A little about myself. I'm in my mid-50's, my wife of 10 years passed away suddenly almost 3 years ago. At that time, my mom was already in the early stages of dementia but it wasn't too bad. After my wife died, mom was still doing okay. She lives alone but I was over a few days a week to take her shopping, out to eat, etc.
Last November, she fell and hit her head. She didn't require stitches or staples and nothing was broken. All her tests came back negative for stroke, etc. She seemed okay initially but a few days later, it was as though a "switch" was turned on and the dementia really kicked in.
My mom has always been "bitchy" but now she's worse than usual. Her gait and ambulation got worse. Mood swings are constant. I was lucky enough to find someone who mom knew, and liked, to help me watch her for a few hours a week. The caregiver watches mom 4 days a week for about 5-6 hours a day. On the other days, I am with mom. I go home and take a break for about 5 hours, then go back every night to make her dinner and make sure she gets in bed. I have a full-time job but thank God, I am able to work from home 3 days a week so those are the days I work from mom's house.
Basically, I work 40+ hours a week (I'm on call 24/7 with work) and take care of my mom every day. The two days I go in to the office are usually an escape of sorts but recent events at work are making for unpleasant days.
I go home to my dirty house, sit and just vegetate for a few hours because I can't bring myself to do much more than that. I'm mentally and physically exhausted. I don't like my mom (we were never close growing up and I moved out when I was 17) but I do love her and I don't want her life to be bad but I find myself in a horrible mood with her all the time.
I know I'm blaming her for all these negative changes in my life but I also know it's not her fault. My brother lives in Dallas, about 5 hours away, and he tries to come down once a month to give me a break but when he's here, he calls constantly with questions and to b*tch about how mom is driving HIM up the wall. I can't get away from it.
I'm not even done mourning the loss of my wife and the recent loss of my pets. Work sucks. Life sucks. I could b*tch more but I'll stop for now. I just needed someplace to release it all.
So sorry you are having such a difficult time dealing with your grief and with your mother's care. I too worked a full time job while helping my parents remain in their home (Dad had vascular dementia, Mom was stressed out caring for Dad and developed MCI). Just the exhaustion and stress can make almost any problem seem unusually difficult and generate that "sucks" feeling, even things we can generally handle very well.
It's not Mom's fault, but its also OK to acknowledge the strain meeting Mom's care needs is causing you too - at least among other care givers. That doesn't mean you don't love her, just that you are one person with limited time and energy (physical and emotional). We all need somewhere to vent over things even when we wouldn't consider changing them.
Have you contacted your Area Agency on Aging and asked what services are available in your area? Adult day care might supplement the in home care hours to allow you working days where you don't need to also keep an eye on your mother. Removing those competing responsibilities would most likely reduce your stress levels greatly. While you're working full time, I would also encourage you to try to set up a care schedule that allows you a weekend morning where you are off care giving duty for at least half a day. Maybe your brother could help out paying for some of the in home care?
You know your brother has no clue that calling you talking about Mom doesn't really make a very good respite experience for you. Maybe if next time you told him you were going home to catch up on some sleep or to a movie he would get the idea to not call. Or maybe you could just tell him you really need "no contact" if possible when he provides respite - don't hesitate to call me if you need to know something about how to care for Mom but otherwise please try to give me a few hours where I don't have to think about her care.
If resources allow, I suggest you look into AL or MC for your mother. Dementia just gets worse and at some point you will not be able to leave her alone at any time (sounds like you might be close to that now). Placing her into MC where you can go back to visiting a few days a week to take her shopping or out to eat would probably be good for both of you. She may do better with a more structured environment and more social contact too. Even if you're not ready to consider placement, you should be looking around to identify your options and planning how to finance the care Mom will eventually need. Often MC's offer respite placement for a few days to a week depending on room availability. My mother lives with me and I have gotten her accepted for respite care at a local MC just in case we might need it. At some point I'm going to need some surgery and may need to place Mom in respite care for a couple of weeks while I recover.
Read what TN wrote. Call the Area Agency on Aging in the morning.
Have you had a visit with your primary care physician lately? I would recommend a check in with her/him; discuss the posibility that you might be depressed. Please take care of yourself!
I think I was approaching some burnout, the resentment was rising & the negative thoughts were circling... I sought out a free counselling service & had a few sessions. Not for everyone, I know, but worked for me. 1st week had 'homework' to write it all down - all the #@$× out if my head onto paper. Felt a BIG relief! Next came setting new boundaries for myself & lastly making plans for my own future. Not dumping my relative or shirking family duty but changing how I would help.
I decided the day to day caring (showering, driving etc) was not for me. So I 'promoted' myself to secretarial level & just do clerical now. So instead of driving my relative to the masses of appointments, lifting heavy legs in & out, cleaning my carseat after another accident, assisting to shower, dress etc etc I now book a support worker to drive & accompany instead. All personal care is now done by support workers too.
Where I live I am blessed to qualify for Govt help for this. I mean, what if I couldn't do it? Lived overseas, was in jail? There is no law that I must provide the day to day help - although there is stigma, cultural expectations & dare I say it? I'm a daughter! (I know plenty of men in this situation too).
I hope you find your own way too.
I think I was approaching some burnout, the resentment was rising & the negative thoughts were circling... I sought out a free counselling service & had a few sessions. Not for everyone, I know, but worked for me. 1st week had 'homework' to write it all down - all the #@$× out if my head onto paper. Felt a BIG relief! Next came setting new boundaries for myself & lastly making plans for my own future. Not dumping my relative or shirking family duty but changing how I would help.
I decided the day to day caring (showering, driving etc) was not for me. So I 'promoted' myself to secretarial level & just do clerical now. So instead of driving my relative to the masses of appointments, lifting heavy legs in & out, cleaning my carseat after another accident, assisting to shower, dress etc etc I now book a support worker to drive & accompany instead. All personal care is now done by support workers too.
Where I live I am blessed to qualify for Govt help for this. I mean, what if I couldn't do it? Lived overseas, was in jail? There is no law that I must provide the day to day help - although there is stigma, cultural expectations & dare I say it? I'm a daughter! (I know plenty of men in this situation too).
I hope you find your own way too.
Speak to Mum's doctor maybe for advice?
Now, as to your mom... my beloved FIL also sustained a head injury, but it took months for him to start showing any symptoms, and they were pretty much the same as your mom's - progressive dementia, gait and ambulation problems, even sudden incontinence. It turned out that he had a subdural hematoma that was very slowly leaking blood into the brain, which in turn caused the subtle progression of symptoms. He had surgery and regained most of his faculties, but the damage was done, and it wasn't long before he started having problems again.
You might want to take Mom back to the doctor for some more imaging. If nothing shows up, proceed from there with possible placement in a memory care facility. You have many losses from which you need to recover, and you need to be able to concentrate on your work as well. There's simply too much going on for you to be able to take care of your mom, your career, and most importantly, yourself. Sooner or later, something suffers. It sounds like you're at that point now.
Best wishes...
My mom had the same physician (and saw his father before him!) for well over 30 years. I recently attempted to contact him to try and get an appointment for mom only to find out his office closed permanently due to his own health issues. I'm starting over with a new physician.
I'm also trying to get my mom VA benefits so I'm in the process of collecting receipts and medical information to use in the application process.
Beatty, I would love to be able to remove myself a bit from the overall caregiving but there's just not enough money to make this happen right now. My mom's income is limited to her retirement as a federal employee. She gets no SS as she didn't earn enough quarters. Thank God she does receive medical insurance so there's that.
Paying the person who is currently helping me with the caregiving and paying her monthly bills leaves very little for incidentals. I am paying out of pocket for extra expenses like her property taxes and house insurance. I am also paying for incidentals like physician house calls and anything that Medicare won't cover. My extra money has been tapped out.
I would love to put mom in a day program somewhere for a few hours a day but she refuses to leave the house. I'm lucky she allows Esther (the caregiver) to come over but that is just about the extent of it. In her previous life, my mother was not a social butterfly in any way, shape, or form. She was not overly friendly and did not socialize with others very often, with a few exceptions. She didn't, and still doesn't, like family to come over and visit, which makes it extra difficult for me to find someone to relieve me now and then.
TNtechie, thanks for the advice with brother. The last time he came to visit, he still called but kept it to a minimum. He will be here next week and I'm taking 3 days to find a cabin by a river where I can sit and do nothing while he stays with mom. My brother is not in a financial position to help out with any costs. He does try to give me some money when he can but it's not enough to really make much of a difference so getting him to pay someone for respite is probably out of the question.
I'm assuming MC is for "memory care" and AL is for "alzheimer's"? I'm hoping that if mom qualifies for the VA money, it will be enough to be able to put her in a private care home when the time comes that she can no longer be in her own home. If she doesn't qualify, then I'll have to figure out something else.
I love the idea of pre-qualifying her for respite. I hadn't thought of that but will do some research to see if I can find something here in my area. TNtechie, I hope your surgery goes well.
Thank you all again for your support and your well thought out answers. You've all given me a lot to think about and some things to look for that I had not considered.
My mother wasn't the social butterfly either and would often prefer to avoid adult day care. I tell Mom I need her to go to adult day care so I can get things done (like my doctor appointments) while I know she is somewhere safe and not alone in our home. I tell her it's good for her to socialize with all the other people at day care since she doesn't attend church circles anymore. I ask her what in particular she doesn't like about day care because she always seems to be having fun when I drop in. She tells me the lady trying to teach sewing doesn't know anything but she does like talking to people there. Consider pushing your mother to attend a few hours at least 1-2 days a week. If she only knows home care, she will have a harder time moving to long term care if it's needed later.
As far as your mother saying she doesn’t want this or that, or doesn’t like socializing, it’s no longer her choice. Find some ways to do what is best for you despite her unreasonable demands.
I had to tell my husband today (he was pouting) after I came in from an outing with girlfriends that I have only enough energy to hold my job, and care for my mental and physical health and I will do what I need to and when I need to. He only cares what he wants; I also told him I’m not responsible for entertaining him or for his hurt feelings. He’s always had time for friends; I never have; it’s my turn now.
I understand how hard, moved out young myself.
My husband has a rare brain cancer and cognitive impairment keeps increasing, she does crazy things and I "steal her joy"
She tracked down a man hadn't seen in 50 years and told my little girls were getting married.
She's not doing well but put about $40k into dental implants before the one two hour meeting with him.
Had she done a decade ago to chew would not mind but why now?
She decided driving again, bought car, did drive to my home with help, is freaking out bc recalls that I don't have time to bring to dealer
Everyone hears about her nasty uncaring daughter who refuses to help her.
If you read about me, I can't do anymore. My surgery only has 80% success rate, with two little girls and a husband not numbers I like.
I explain weekly, in writing that my husband doesn't have the cognitive ability to help her. I can't be in cars preop unless absolutely necessary bc a fender bender would leave me a quadriplegic.
I wish I could say will get better.
Well, my mom can't throw chairs at me anymore, whoo hoo.
It gets worse as they lose control. More times than I can count she pushed me to do what I can't at home due to pain.
I finally just stopped bc right now is a critical time for me, won't heal eating frozen pizza.
I wish you the best, I take xanax after seeing her.
God bless
Kim