I feel selfish but I want my life back.

Started by

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!


That's the hardest part. There is never any good answers when there is no meeting of the minds. You can find the best place that even a queen would love, but they want to stay home. Then you either be a bad guy and say they have to go to the facility or figure out how they can stay home. There has to be a better way. I think everyone understands what you wrote. We don't want anything bad for the person we care for. We just want the freedom to enjoy our own lives again. I have a hard time grasping that the elder's comfort becomes more important than their child's life. There needs to be a compromise that both people can live with.
I can relate, our stories have many similarities. I too moved home to help mom, planning to look for part time work as her health improved. She had a sudden decline, needs 24/7 care and supervision, and although no one actually said she was months away from death it was certainly implied by several. And here we are, I don't even know how many years on, I've lost track. It's like, you come out of love or duty or whatever with an expectation of helping out for a little while (like you did with you dad) and they have reneged on their side of the agreement by living forever. Sounds heartless, doesn't it.
Although I didn't sacrifice my job or my family, I feel cheated by the change in circumstances. When we first discussed having Mom live with us, she needed some assistance but could handle most of her daily routine by herself, albeit with gentle reminders to take her medications and such. She would need to be driven to and from doctors and have her groceries purchased fro her but she was able to get around by herself.

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 !
I really love my parents, but, I'm afraid that I can't relate to sacrificing so much of my time that I can't have friends, do my hobbies and have my enjoyment in life on a long term basis.

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.  
This morning is a good example of how things go. My brother is visiting from out of town. We tried to keep it simple, but Mom wanted to get my two brothers together. So we arranged lunch for today. Simple enough, except that she can't get in their vehicles, so I'm the chauffeur for us all. As I was getting ready, she came to me with her empty lancet box, asking if I had more of them. Now why would I have more? And why did she wait until a holiday two hours before company was to arrive to show me an empty box? Well, of course, she has dementia. So I run to Walgreen to buy her some more.

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.
JessieBelle, it does sound frustrating, but, it may be that she's not aware of how things are going on in her mind. What if you tell her the schedule, times, days, lunches, so you can plan them in advance and explain that's the best way to do it. If she's relying on you, then it should be on your schedule, unless, it's an emergency, like the lancets. I'd just stock up on them and keep them in a secret spot.
It sounds good, Sunny, but it doesn't work like that with later stages of dementia. There may be good intent to work and plan, but reasoning is gone. My mother doesn't notice something is getting low until it is gone. I have to keep up with things, but I'm not perfect at watching all of her needs. I realize this and work with it the best I can.
I feel your pain. I understand it is a process for the caregiver & the elderly parent. For me it started after the death of my Dad 16 years ago. Mom has always been very dependent & a complainer. Shortly after his death, she stopped driving. So every week, I would make the 4 hour round trip trek to visit & we would run errands/Dr's appt's, ect, with her. It was manageable for a while. Then 6 years ago, the decline set in. I started staying @ Mom's frequently after each hospitalization. Naturally, after each hospitalization, it took more out of her until this last surgery in August 2016, she was left bedridden & 24/7 care. For 2 years, I would set up in-home assistance( of course she protested),but the frequent hospitalizations/ surgeries would reel me back in. I was spent by then, but did set up full time caregivers. This November, my "do-nothing, know everything" brother& SIL continued to cause trouble(& my mother holds a big part in this family dynamic also. She is not innocent like she has others believe),so I opted out of her care. I will never stop caring for my Mom, but now it is in a different capacity. It pains me to think of the way medicine/life saving procedures are eroding our loved ones dignity & leaving families fractured.
JessieBelle, I can relate! My mother never tells me until after things run out. I constantly have to check to make sure things are in stock and try to keep ahead of it, but no one is perfect. I work full time and take care of her in my home. It's just impossible to stay on top of ever single thing.

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...
You are not selfish at all. I understand how you are feeling though. I feel the same way at times. If your mother has the financial means, then she should move to assisted living. Why in the world would she want you to be miserable and tired and have no life? I don't want that for my children. I have already told them, (while I am in my sane mind) that if I decline past the point of taking care of myself, their responsibility is to make sure I am well cared for and visit me once a week. That is all. I have planned ahead as much as I can. Trust me, I know. I am going through a similar situation with my mother. I can only say that I will be relieved when it is all over. I will miss my mom when that time comes but I am more than done with all of this. I don't want my children to ever feel this way about me. Start looking into assisted living. Start living your own life.

Keep the conversation going (or start a new one)

Please enter your Comment

Ask a Question

Reach thousands of elder care experts and family caregivers
Get answers in 10 minutes or less
Receive personalized caregiving advice and support