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.
You have no reason to feel guilty. I'd suggest that you try to find a way out of this situation. You are fortunate that your husband is a "saint," but your whole family has been affected by this for years. You have a right to some privacy again.
Please look into assisted living or a nursing home for your mother. You'll pay a price going through the process but you'll see light at the end of the tunnel.
It's very true that you will still be a caregiver, even with your mother in senior care. But you will have some opportunity for some life of your own.
Take care of yourself before your own health is shot.
Carol
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
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.
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!
Then a set of circumstances and health crises landed him in a NH and the social worker approached me about having him stay there and not just for therapy. My family supported that decision so that I could have my life back and my dad begrudgingly agreed. The guilt tore me up. I still wake up in the middle of the night thinking I hear him calling for me. And him not living with me was not the clean break I expected. There was a lot of transition, a lot of upheaval. It was very stressful and where you gained 50 lbs I lost 20 lbs because my stomach twists into knots when I'm stressed. And the caregiving hasn't stopped. My dad wants a lot. He wants more visits. He wants me to quit my job so I can spend everyday with him (he has dementia now). He calls me and tells me that the other residents are being abused (I know they're not). He calls me at 11pm to tell me he saw one of the other residents with an Uzi. He's not afraid. I asked him if he was. He's not, he feels like he has a lot of power because he's aware of all of these shenanigans going on. He hallucinates. I could go on.....
My life definately became better once my dad went into the NH and before my dad began going downhill he was fairly happy and had made friends and participated in activities. I'm not happy that my dad is in a NH but I am grateful that he's being taken care of by professionals now. I wonder if his descent into dementia would have occured had I kept him at home. I can't shake the guilt but I try to rationalize it and I can live with it. I'm productive again. Working in a job I enjoy. I'm proud of the life I've created after caring for my dad. I still have responsibilites to him. He still sees me as his caregiver and is only truly happy when I'm with him. Advocating for him is a lot of work but this I can split with my brother and we both do our share. I didn't automatically become HAPPY once I was on my own again. I had to work for it and that wasn't something I anticipated. I still get sad...depressed....when it comes to my dad and I think about him all day, everyday. He's the first thing I think of when I wake up and the last thing I think of before I go to sleep.
So my life after being a hands-on, everyday caregiver is not always rosy. Being a caregiver had a profound effect on my life that I imagine will stay with me. And while my dad is still with us I still feel that obligation everyday, I still feel responsible for him, and I still feel like a caregiver. Because I am. When I visit my dad I have 100 different little fires to put out while I'm there. My brother is able to talk to my dad about movies and tv shows, pleasant conversations. I get the crying, the depression, the hallucinations and the overall misery that my dad won't discuss with my brother. I talked to the social worker about it one time, about why my brother and I have totally different kinds of visits with our dad and she said it was because I'm the caregiver. I cared for him for 5 years and I'm still caring for him and always will until the day he dies.
See All Answers