Marialake Asked April 2014
What is the one thing that bothers you the most about caregiving?
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I read your post with tears rolling down my face. This is my situation as well.. A year ago, I spent thousands to move my 84 yr old mother and myself to a nice, more spacious place all by myself. I haven't had 24 hours to myself in almost a year. I am behind on my doctor's appointments and my health is being compromised. My family is selfish, insensitive and dismissive of her condition and of ALL I go through to care for her. I have 2 siblings who do NOTHING and 1 (who can barely take care of herself) wanted to be her PAID home healthcare aid.. She is mad because I take care of her for FREE 24/7 (she doesn't qualify for medicaid) and moved her in with me. I also work full time from home. My work is being affected.
I am isolated, abandoned, often lied on, disrespected. I feel like a machine, can't enjoy a movie with mom or have an intelligent conversation with her. My family never considered how all of the harrassment and added stress they put on me almost broke me, broke my spirit and could have affected mom in 2022. God gave me strength to get thru. I am praying for all of us. I have cut off the toxic, hateful, insensitive family members. I will not survive another year like 2022. I also don't know how much longer I can do this. My lease is up on 13 months.. not sure I can last that long.
I am naturally a very optimistic, resilient person. However, this dementia has brought out the worse in my mother and she depresses me almost daily. It has also exposed how selfish, phony, jealous and hateful family can be. I am broke and exhausted.. feel like a prisoner within my own home, my own life. My home is just an Assisted Living Work Space.
So we shall fire her! I say to my mom, grandly, through gritted teeth.
Stifle the rage.
though I need to now give her a break on at least one thing. shed been saying for months she didnt have my number. which is redicuous, its in her phone, I call her all the time.
then i looked through her contacts list...... and didnt see my name. It made no sense to me.
Hubby had to fix it. Apparently for some reason I was a "gmail contact card" in her iphone cellphone. It was set to only show iphone contacts. he had to look it up on google to even figure out wth was going on and had to just delete my old contact info an create a new card so I show up in the list. "Well mom at least in this case you can assure yourself you weren't actually losing your mind" lol
They both lost the ability to have any compassion for me. I do EVERYTHING for them! And I have never felt so unloved and cared for in my entire life.
Would I do anything different? Not really.
But I have started setting boundaries.
Like saying no untill I finish MY dinner. Or not doing what they want me to do while I'm trying to take care of myself.
Its hard! The hardest thing I've ever done. But I must put myself first! Wether they know it or not. It's when I'm doing something for myself they need me. But not anymore! I've started eating before then and changed the schedule around to accommodate me. And they don't like it. But they'll get used to it.
Im single and it's lonely. I must love and care for myself!
You know, you're right. There's no good way to do it and you never get used to it.
I cleaned it for 25 years and it still grosses me out.
I'm totally with you. It's terrible how so many healthcare "professionals" will rip a family caregiver a new one when they have ABSOLUTELY NO CLUE what their story and situation is.
I brought my mother to a doctor a few years back who was covering for her regular primary. She was in her element because he didn't know her. This meant that she could villify me with her slanderous "storytelling" to this guy. I was in the waiting room and he called me in and gave me the whole song and dance routine about compassion and caring for an elderly person.
I explained to him that I'm the only one of her kids who will help her in the slightest and that if I seem indifferent to her it's because I am. I had a lifetime of her abuse, resentment, gaslighting, and abusive neediness. She is lucky that I even speak to her let alone actually help her out.
He thought about that for a second and realized that maybe he had an old trouble-maker on his hands who enjoys villifying someone to get attention. He ended up telling my mother that she should treat me with some respect since I'm the one helping her. She did not like that one bit.
I was so relieved when my mother went to an ‘end of life’ hospice facility. I think you should place your mom. It will relieve the anxiety that you are experiencing.
To answer your question, “What kind of life is this?” It’s not a very good life. You’re right, it’s physically and emotionally draining. The only thing that is left is exhaustion.
I feel your pain. The falls are awful. Trips to the ER are so stressful.
Do what is best for you and your mom. Find a good memory care and return to being her daughter instead of her caregiver.
Many many folks will tell you "Oh I'll know when it's time to downsize". I wonder what percentage get that close to accurate? How many miss the window, wait too long, lose insight instead & dig their heels in.
A friend's parents downsized early & are really enjoying their retirement community. Fit enough to join in with bus trips & all the activities. They gave up the house - but gained a great new social life. Gave up their own garden - but gained lovely grounds.
DH's LO was a more solitory type & happy with his own company. Decided at 91 it may be time to downsize.. died that month (moved to the great beyond instead).
My LO HAD decided to downsize but then suffered a health crises, lost judgment & insight & now dug firmly in. Like a concrete post.
hug!!
hug!!
let someone else do the worrying for now. take a total break.
I'm seeing a lovely future where you & your DH take a few cruises. Just the two of you 😁
You might like this line too;
"Your lack of planning is not my emergency". To tell to everybody in your family & extended family.
You don't have to be the caregiver to any of them. Slavery was abolished a long time ago. You're an adult and can put your four remaining elders in a care facility and walk away.
If you have kids they will be very happy to know that you're preparing for your old age and don't expect them to ruin their lives taking on the burden of elder care.
backstory? why not.
me and my sister were adopted by our grandparents when we were 6 & 11 years old. our grandfather was abusive in every way you can think of… ways i can’t mention. we used to ask our grandmother to help and she would reply that there was simply nothing she could do. she just told us we better not tell anyone cause she had an image to maintain at church and within the family and community. of course there was tons of resentment. when our grandfather passed away, i was 17 years old. i graduated high school and finally started to embrace being young. i partied and kind of lost myself a little bit. i finally started to learn who i was around 24 and BOOM, my grandmother has several strokes and is diagnosed with dementia. i am thrown into a caregiver position by her son (in his 50s at the time and very financially stable) because he said me and my grandmother would both benefit from living together. me financially and her with care. fast forward to age 28, i’m doing very well at my job. lots of opportunities coming about and i met the love of my life. by 29, i’m no longer able to work. i’m not able to spend time with my friends or boyfriend. i can’t leave the house alone to shop, go to the doctor, get a haircut, workout, take a deep breath. my grandmother is extremely combative, aggressive, uses foul language, and is the most hateful and unhappy person i’ve ever been around. she has to have help with absolutely everything, including bathing and using the bathroom. i’ve asked her son for help NUMEROUS times and he just tells me he’s too busy. he says i’ve had the pleasure of staying in this house even though i’ve told him it’s falling apart and we’re not financially able to realistically support 2 adults, one without income. he never visits, hardly ever calls. i’ve handled everything by myself for 6 years. now i’m 30 and i’ve matured more than ever. i have jobs offered to me that are exactly what i need for my career to take off, but i have to decline. i can’t even spend time with my boyfriend unless my grandmother is right there with us, cussing us out and throwing things at us. it’s ruining my life. i hate the situation i’m in. everything about it brings me pain and suffering. i wake up in the morning and wish i could go back to sleep. i have no control over my life and i no longer feel like myself. i don’t think this is what 30 should feel like.
SO SORRY for the long winded bs. i’m just struggling right now with severe anxiety and depression… although i have people to talk to, no one understands because no one has been through this. if you read this, thank you.
You can do it!
Of course, you are depressed and have anxiety. You are young and life is passing you by or should I say that you are allowing life to pass you by.
You deserve better and you know it. You have suffered enough, paid dues that weren’t even owed.
Give notice that you will be leaving and live the life that you deserve! No one is stopping you from doing this except for yourself.
Be brave and let go. This is not a time to hold on. What are you gaining from this relationship? Not judging you at all. I was a caregiver myself for my mom. I’m curious as to what is keeping you with your grandmother who didn’t help you as a child.
Best wishes to you.
Tell him you are leaving March 1.
Call the last friend you talked to and ask if you can sleep on her/his couch for 3 nights. Or find a low cost motel.
Slavery was outlawed a LONG time ago.
Don't do anything for an ingrate. You're an adult. You don't have to engage in fighting because the elder is instigating some trouble. Tell her to shut the hell up and walk away.
You can prevent her sabotaging things also by not letting her know your business. Don't keep her in the loop on anything she can possibly sabotage. If you are planning something, you don't let her know until you are practically out the door.
She accepts the choices you give her, or she's on her own.
Never tolerate a senior brat.
When FIL barks orders and wants everything done his way on his time schedule because he doesn’t want his “independence taken away “.
When he says he doesn’t need help . Meanwhile needing everything done for him but refusing showers and assistance with toileting schedule, and expects us to put up with the stink.
When he wants to be taken out for meals, entertainment, take him away on a cruise , take him to see friends 4 hours away , all the while stinking in an old diaper . ( We don’t take him out anymore).
When we offer to bring him lunch because we finally made our own dinner plans with friends but he wants us to bring dinner instead .
When they are spoiled and can’t accept that their age is catching up with them and blame you for the changes .
He wants us to maintain his routine and “ independent lifestyle” but fails to see that our lives are turned upside down .
After a long day at work call up when we are sleeping.
Last night he called because I wrote down haircut on his calendar for Friday next week but I didn’t write the time down . I don’t know what time it is. He’s having it done at the facility every six weeks . This is what I get for putting my foot down and telling the man that we are not taking him out for haircuts anymore when he can get it done at the facility .
No one has to tolerate any of what you're saying. I did elder care for 25 years. I never tolerated anything near the behavior you describe from your FIL. He's in AL not living with you. He complains too much or gets too demanding on a phone call.
Hang up.
He stinks too bad in a soiled pull-up and because he refuses to let an aide help him wash properly.
You don't take him anywhere. You stop visiting or limit the visits.
The more families and caregivers cater to fussy, ornery, stubborn seniors the worse they get. It's the same as with spoiled, brat kids. If their behavior is dementia related, then they should be cared for by professionals.
Good for you finding ways to make money from home. People do stuff a lot freakier then foot pics and selling their old drawers and tights to make money. I give you credit for being a unpaid family caregiver (we all know how miserable that usually is). You also have proper pride and self-respect because you refuse to live as freeloader who expects the government to support them. Respect.
I hope you make money and set up that nest egg to get yourself out. Good luck and God bless. ~BC