Hi, Three years ago my father fell ill and 'intuition' told me I needed to come home. Intuitions was right...he passed away in an overall undignified, horrific way two months later. It was my introduction to caregiving....C-diff, letting Dad die at home, watching him have a major seizure, quit eating...just all the things many of you already know. I promised my Dad on his death bed, quite literally, that I would make sure Mom got to die at home, too. I lived states away, but told him I would leave and come home. And I was happy to do it. So I did. Left my job of 21 years, my home, divorced, and came home to take care of Mom. When I made these decisions, Mom was mobile and relatively well- had Parkinson's, but not a devastating case of it- and just needed someone to live with her to be there at night, help with daily chores...I thought I would be leaving home to come here, get a job, help with Mom but start a new life... Within six weeks of Dad's death, Mom was in ICU...my plans of a graceful exit in my life to starting a new one came to an abrupt end, and I put what I could in my car and came here. Mom has needed 24/7 care ever since. I lived with her for the first 18 months....got about 8 hours of true 'assistance' a week...other than every three or four weeks going to a friend's for the weekend. I was a career woman. I had no idea what I was getting into...it wasn't the plan. After 18 months, my brother decided he was moving in too. I love my family, but there is no way I could live with my brother...and I told my Mom that before he moved in. My mother is a difficult person. High degree of anxiety...can't stand to be alone for two seconds in a day...no matter how much you do, it's not enough. Life improved when Roger moved in because within a few months I got a job and moved out... BUT...every other night, I go to Mom's and sit with her from the time I get off work until about 8:30 or 9...the doctors felt she wouldn't live more than 3 months to two years when I came here, and their bet was on three months....it's been three years, and Mom is still with us. I feel guilty at this point. For three years now, I haven't been able to make a decision or do a thing with my own life without thinking about Mom. Mom and I didn't have a great relationship when I was young...my brother even told me once that he was amazed that I was the one who came back to take care of her. I feel guilty because I want this to be over with- I am 60 years old. Compared to many stories on here, I don't even feel like I should complain. But I want to be able to take a yoga class...or say "yes!" when someone unexpectedly asks me to do something...or choose where I want to live because I want to....or just have the time to do 'normal' things that others do. I'm lonely. I can't make friends...there are many who have tried to be friend with me, but the restrictions on my life impede most of those relationships and they eventually stop...I'm an extrovert, a social person, and I need a network I can't develop. I just want to have some real control over my life. I don't want to feel this resentment...I don't want to look at Mom's eventual death as a relief...but I want this to be over with. Although financially able, she refuses to get any outside help. Her medical benefits are excellent...there is not a reason for things to be so hard, never has been...other than an insistence this is the way thing will be. Okay, I've vented...but there's not a good answer!!! Thanks for listening!
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Also, I get the part when she said she didn't understand why you were tired. My mother's response was "what do you do for me, make me breakfast and do my laundry". Umm...TRY I DO EVERYTHING. Shopping, cleaning up after her. Bringing her up and downstairs (chair lift of course) on, and on and on. And she sees it as nothing.
And BJB, you have the right to vent! You shouldn't feel guilty either! You need a life and time for yourself. You have a right to. Is respite care a possibility to give you a break. How about someone coming in and helping a few times a week? You gave up a lot...being able to have time for yourself is not a luxury it's necessary. Or you won't be able to keep up taking care of her...
When I get home she tells me she doesn't know if she can do lunch because of the tooth she broke last Friday. I have to find her a dentist and take her this week. But I need to pick up her room tomorrow so the carpet cleaners can clean on Wednesday.
I got grouchy today and told her I needed a vacation. She told me I could go at any time and she would be fine alone. Yeah, right. The woman wouldn't even be okay one day alone. I tell her that no she can't and I'm tired. She asked me what I'm tired about because I don't do anything. This little vignette is a good illustration of why it is so hard. A caregiver can only decide to stay or go, because all empathy has been lost.
Of course, now I'm going to read, "Why don't you just leave?" This is the easiest question to ask and it makes sense. But 24-7 caregivers for stubborn elders know it isn't that easy.
Is your mom able to understand how you feel about this? If she were thinking clearly, I can't imagine that it would be okay with her. If I were in her spot, I'd want my adult children to be happy and enjoying their lives as much as possible. Often when the parent becomes a senior, we adult children have to take the role of the more mature and reasonable thinking adult and use our best judgment. If what they expect is not good for me, then, I have to use my own judgment and make the right decisions. I don't consider this being selfish.
I had this vision of her spending most of her day tooling around her attached apartment by herself with occasional visits throughout the day from myself and my kids. I pictured family dinner together every night with enjoyable conversation. Call me crazy, but I even thought she would be able to travel with us (we used to run off somewhere on weekends about twice a month).
Her decline was swift and unexpected (not the decline but the speed of decline was unexpected). She can't do anything for herself. She needs to be fed, toileted, and needs to be supervised when walking. Her personality is so unpleasant that the kids do not even pop in to say Hi to her anymore. Dinner is a three hour ordeal with me begging her to eat and then badgering her to take her pills.
My kids, now 12 & 14 have sacrificed so much having her here. My husband is angry and resents the impact she has had on our lives and he is most upset that she doesn't appreciate the help that she is getting.
I was cheated out of the easy time (giving more companionship than care) and went straight into the hard times. I would be OK with this if I knew that I had X amount of time of this but who knows how long we are going to be in this limbo.
There may be a tear or two when she finally makes that walk towards the light but there will be much more relief than grief. I WANT MY LIFE BACK !