I became my mother's caregiver after my father passed away. I lived with her for about six weeks sleeping on her couch and going to work every day. My husband worked nights so he could stay with her during the day. My daughter slept with me at mom's apartment and my son stayed at home alone. I was not sleeping and couldn't function.
We moved to an accessible house and provided her with a first floor master suite. She was very ill when she moved in and I was caring for her daily needs and working full time in a demanding career. We thought she might live a few months to a year based on her health. My sister (out of state) insisted that my mother find a caregiver. She did although she was unhappy paying out of pocket for this. She had a caregiver 24 hours a day five days a week for about three months.
Fast forward five years and my mother still lives with me. She has broken bones and been in and out of the rehab center but never in an nursing home. She'll say she is very independent but she wins through intimidation. Did I mention my demanding job? If I haven't put a meal on the table by the time she wants it, she comes into the kitchen and says "I guess I should find myself something to eat...My mom indicated that I have a stressful life and I should try to make it better by lessening my stress although she told me she is not part of that stress.
I've gained about fifty pounds, lost interest in my life. I have few interests and my mother wants to follow me around everywhere I go. She has no friends but is happy to say inappropriate things to my friends and then deny them. She does not drive per medical orders but is mad at me about that. She wants me to transport her places but never asks me to take her. She tells me what I will do and when I'll do it. Did I mention that I am an adult?
Sometimes my mother sees herself as a member of the family and sometimes she is a renter (yes she does contribute to our monthly expenses). When I want to take a family vacation she insists on coming because at that time she is family. When she needs something done, I'm her paid servant. I have an entire year of vacation in my bank at work because I go nowhere. When I do take a day off, I act like I'm going to work or she'll hang on me. I go out for breakfast, go to Target, go to a movie and then come home around the normal time. I don't even tell her I have the day off.
I don't want to be with her. I don't want to talk with her. I want some privacy. If I wasn't married to a saint, I couldn't imagine a husband staying. My children do not want to be around her.
I have major guilt about all of this. I have one child in college and one leaving in a few months. She has thrown money at both of them. She'll tell me she is helping them with expenses I think because she feels guilty living with me. I tell her that if she wants to give or lend them money that is between them and i don't want to be a part of it.
Why don't you do yourself a big favor and say "today I start taking care of me". Ask your doctor to help you get on track. Maybe antidepressants? Counseling if you can afford it? Don't look at it as a failing but as feeling you are worth it because you are. Don't let your mom suck all the life out of you or steal your joy. Don't let her have that kind of control. Once you feel better, I think you'll see things in a whole new perspective. Your mom may not change, she may always try to control you, butt in when she shouldn't, be unlikeable. But you can find new ways to cope with her. You are a good person to take care of her. You are capable of working at a stressful job. You have a family. Mom just plays a part in this scenario. You have the lead part. I wish you the best. I care and want to know how things go for you.
My advice to both of you to seriously think about a home for your Mom. I know the guilt. I also know that in some way, my Dad going into the NH has lightened my load just a bit. Its' very sad. I love my Dad. But nowhere does it say we have to give up all hope of happiness, give up our own lives so that they can live and continue to ruin our lives. That is a choice that you've decided --you've decided to give up your own lives unless you change your thinking now.
My Dad's mom went into a home and he went over and fed her just like I'm doing for him. My Mom - her sister took care of both my grandparents for many, many years. My mother did not care for her parents and lead a rather social life. If my mother gets to a point where she cannot live alone, she will not come live with me. Not because I don't love her, I do. But I love me too and I love my husband and my kids. It would ruin my marriage and I've decided after four years of this to put myself first.
luv you both
-SS
And it never ceases to amaze me to read all these posts and realize there are so many people going through the same thing - a whole subculture of dementia caregiving.
Which does give a tiny bit of comfort for the few minutes a person in this position can find/spare to read any of them, particularly when you find others enduring worse scenarios than your own (and you usually can).
There is merit in being able to feel some amount of unity/community, and even some compassion - and ultimately, a whole bunch of folks to add to your prayer list. Then it's back to your own reality, where prayer is your primary survival tool.
Sending out mental hugs and prayers for all of you now!
Take care of your health. It will go down and if she has narcissistic disorder like my mom she won't care. Put your foot down about the way she treats your friends because even if they love you they will eventually distance themselves. If you have depression maybe meds will help. They didn't help me because the doctor said that when you are stuck in a situation that there is no hope for change the meds won't help. Take control now. Don't let her control anything in your life. Thank God for your husband. I have no one. My daughter helps me with things but works and has a family so I don't even tell her how bad things get.
Attempting to find free or low-income respite care has been unsuccessful. Even medicaid, I was told, requires the person to pay something like $1600 out of pocket for at-home care before it kicks in by the state. (This adviser was a caseworker for a senior agency who had her financial information.)
I wish "caregiver stress" was my only life problem because by itself it wouldn't be so severe at this point. It's one of several stressors converging on me. If I want respite, I think I'm going to need to check into a mental institution...except they aren't free!
BTW, it's totally ironic that the spell checker with the web server's software doesn't recognize "stressors" or "stressor" as words!!!!
My mom has a broken leg that will not heal so she isn't going to walk, but she was diagnosis with Alzheimer's. My sisters thought I was nuts in thinking mom even had dementia, but the more I read about Alzheimer's the more I see the symptoms. And believe it or not that kind of demanding behavior can be a symptom of Alzheimer's so first get her checked out.
Second, I have the same situation in that my mom tells me what to do. If I wasn't caring for my mom she would be in a nursing home, but she tells me what to do. We got a baby monitor to assist us in here care, which can be good but it can also be bad. Mom will yell orders through the baby monitor.
Mom tells me how to cook, clean and everything else under the sun. This past week, mom made it a point to tell the doctor's nurse that she didn't have Alzheimer's and that I needed to do what she told me to do. After that I have sat down with my mom and told her straight up, that she was to be a good girl and that I was the boss. I am not sure how this is going to work, but you may need to take the direct approach.
Sometimes, being truthful and straight forward is better than trying to solve it in another manner. Make sure you first though find out if there is a medical condition and then talk with her. Tell your mom that if she wasn't with you she would be in a nursing home. Tell your mom the truth.
I totally relate. I have not been at this anywhere near as long as you but the emotions you express are exactly those I feel. I have to sneak around like a teenager to go anywhere without taking her with me. My husband is also a saint, or I could not do this. I feel so guilty for feeling this way, and so depressed that I might get old and act this way. I have told my children over and over to do whatever they have to do, a sorry nursing home, group home or whatever, but under no circumstance do they move me into their house and disrupt their life. Even if I get to the point I think they want me there, and invite myself. I would rather endure almost anything than to put my children in the situation we are in presently. We do get frequent breathers as Mom can still be left alone. But within a few hours of returning home things are so stressful that I am right back in the same state as when I left.
My oldest sister lives in town and it just about kills her to sit with her own mom for 2 hours if I need to run and errand with my husband. She wants me to take mom to certain events or meet her out to eat, but she doesn't like to come to mom's home and sit with her. The only thing my older sister will do is give me some money to get mom a perm or help with her medicines. Otherwise she just tells everyone she can't help because she hurt arm and blah blah blah blah.
My next older sister, well she is there I guess. She lives 8 hours away, she calls her mom every 4 to 6 weeks if we get lucky. Otherwise she doesn't say or do anything. In fact, when she comes to visit and we cook I pay for the entire meal. She doesn't contribute or even help cook the food, she just sits on her butt. I mean she does nothing. She doesn't even talk to me about mom and what her doctor's say. So she is just there.
My youngest sister, gets what is going on. She will call mom every couple of weeks or if mom has a bad day, she will find time in her day to call mom. She will listen to me and ask me how mom is doing. She will bring some items in terms of underwear for mom. So she will do a few things.
Otherwise, my mom has some siblings that tell everyone I should put her in a nursing home. So not only do I get to deal with siblings of my own, but I get to deal with my mom's siblings as well.
One day at a time is all we got and that is how we take it. I just try to make sure that mom is cared for and enjoys her final days no matter how many of them there are left.
Yes, dementia does take away most times the personalities we have grown to love in our parents. In my case I see my once caring, selfless and independent Mom become very needy, self-centered, and manipulative during the course of her disease. The important fact we all need to remember (and it is soooo difficult) - they are not aware of this change in them and do not mean to do what they do or intentionally try to hurt/mess with us.
What gets me through a day is laughter. Do your best to find the humor in a situation versus the reality of it. Laughter is truly the best medicine in this instance. I find great solace in partaking in activities that are light-hearted in nature and provide me with some form of laughter. Great for the soul.
Also, know in your heart of hearts that you are doing a great thing in your life. Caring for your parents or a loved one is not for the faint-hearted, for sure. We are not given that which we are unable to handle. I firmly believe that. It just means a little more fortitude, a little more patience, and a lot more love. Some of the difficult stuff we deal with on a daily basis is certainly in our control to change for the better. Other stuff is not - it just is what it is. Bottomline, be sure to take time out of your day for a "you" activity, remind yourself you awesome for doing what you do, and everything will be ok someday. Have faith. It will. God Bless all you wonderful people. Your "people" are blessed to have you in their lives. :)))