I know caregiver fatigue is normal, but what about when you feel trapped?

There is no family helping me. My only sibling passed away 3 years ago and my two young adult children are living their own lives with my blessing.

Beatty's description is perfect. As we live alongside our elderly parent, we have to adjust our lives downward in order to make it through. It can be super depressing and yes, there is some resentment at times because I'm hog-tied and can't leave my home unless I have a sitter in here with my mom.

I haven't been on a vacation since 2012. I've been caring for her for 16 years in some form or fashion. I've put aside many experiences, enjoyments and opportunities to care for her, which over the years, can add up to some nagging resentment.

On that note, I do use her monthly SS and small pension to pay for 20 hours each week of sitters. That's about all that is affordable but it gives me 4 days out of the house to run errands and catch my breath and just enjoy some little bit of freedom. It's worth the money.

My mother also has a bed alarm and a baby monitor that lets me at least go outside on my porch or in the yard without worrying about her getting up and falling.

However, when she is up and sitting in her chair in the kitchen, I have to stay inside nearby so I can serve her every need. Sigh....

She has lived to the ripe old age of 95 and is still doing quite well because she gets the best care that I can provide for her.

Am I ready to get on with reconstructing my life when the time comes? Yes.
Do I daydream about being able to have freedom of movement again? Yes.

But then there's that two-edged sword. When those days come, my mother will no longer be here. It's a sorrow that I can't have both freedom and my mother at the same time.

Drowningcat, you're not alone if that helps any.

From your profile:

About Me
I am the only daughter and get little to no help from my siblings barring the occasional 'drop by' or occasional 'I'll bring a pizza over'. Thank goodness for one sister in law that helps me bathe my mom and provides hot lunches x 3 days per week for me to work. I moved in temporarily but ended up staying due to mama's declining health. I lived a few miles away and was killing myself anyway trying to run 2 households, so just made sense. I took care of everything pretty much since daddy died x 5 years ago and I am feeling the impact on my emotional and physical wellbeing. My mama will be 94 in a few weeks and is a wonderful mama. She is just very negative - always has been. I literally feel like a drowning cat. I have recently had a breakdown and my brothers agree to cover me and my husband to get out of town at least x 1 weekend per month. My mama can no longer cook for herself (for the past year or more), can not bathe alone, can not get out of the house alone or drive. I am her person now. She freaks out when I do try to get a break and even has hallucinations. They stop when I get back. The longest I leave on the rare occasion is literally about 48 hours down to our beach place. I am desparate and do not know how much more I can do all of this and then I feel terrible for these feelings because I love my mama so much. I feel resentful for getting so little help. The rest of the family just go about their lives.

Have you looked into getting your mama placed in a long term care residence with Medicaid, if she has no funds, or selling her home if she has one, to finance her long term care, thereby letting you off the hook?

There are many ways to care for a parent and many ways to show your love. Leaving your blood on the floor is not the 'only' way of doing so. Having a breakdown and coming back to provide hands on care is not doing you any good. Having all this resentment eating away at you like this is not healthy.

If you place your mama, you can go see her every day and revert back to the daughter role once again, get rid of the resentment, and ensure she's cared for 24/7 w/o leaving YOUR blood on the floor in the process.

You have no reason to 'feel terrible' for having feelings that you want to escape this nightmare you're living in. Your mother having 'hallucinations' only when you're gone is very revealing. You deserve a life too as her life is not the only one that matters. Your life with your husband matters too. Remember that. Negative behaviors take a toll on us daughters after a while and are best managed by a staff of caregivers who aren't emotionally involved.

Please consider doing what's best for all concerned here, and placing mom now. My mother lived in Memory Care Assisted Living and was beautifully cared for by a team of loving caregivers for nearly 3 years. She had way too many issues and negative behaviors for me to deal with at home; she'd have killed ME in the process of trying to care for her, so what would have been the purpose of trying? And yes, I loved her. Again, there are many ways to love a parent and still have them cared for NOT by us.

Wishing you the best of luck

Feeling “trapped” is almost a guarantee of winding up with physical and/or emotional symptoms of your own, so it really is time to assess where you are in terms of the responsibilities you are carrying.

Is there LAW that you yourself are obliged to do hands on care?

Can you take the time while “watching” her to research what financial resources are available to get you more help?

If she DOES own her home, will the sale provide enough funding for residential care?

It is WONDERFUL to feel loving concern for people who are unable to care for themselves, but you have responsible for yourself as well.

Unless there is a LEGAL obligation, NO ONE, not your siblings OR her grandchildren OR YOU, should be saddled with care, especially if reluctant to do it.

I TRIED to care for my mother, whom I dearly loved, failed miserably, gained 60 pounds, and finally placed her in a beautiful residential setting, where she lived over 5 happy years, dying at 95.

Get to work on finding out what is REALLY AVAILABLE for your mother. You may be surprised to find that you can figure out alternatives that can meet her needs BETTER than you can, and free you to resume a safer healthier life for yourself. YOU DESERVE NOTHING LESS.

I can't say that you can ever get accustomed to feeling trapped. I too feel like a trapped animal. When this episode in my life is over I want nothing more than to sell and give away everyting I own, (in order to not feel tethered by even a tissue box. I'm exaggerating a tiny bit), to run free to travel, to dance foreign dances, to taste foreign foods, to breath the air that swept off of the Matterhorn.
But I found ways that have been helpful when I feel the pressure.

SInce I dream of traveling, I have moments of escape in my prison by preparing for that time. You can have hope instilling oasis' too by doing things in preparation for when you are no longer trapped.  

For me, it's working toward becoming a minimalist, and although not related, I like working in the kitchen trying new almost easy recipes. 

For you, it maybe collecting vacation brochures, (okay I'm stuck on traveling) and watching very clever suitcase packing hacks. Maybe you could sew dolls, or stuffed Teddy Bears for children in hospitals. I did that using old jeans.

For 15 years on occasion I would introduce my husband and myself in this manner - "…glad to me you. I'm Michele and this is my goiter". This life is killing me but it is my duty and I paid big time for permission to make jokes, which brings me to your statement in your Profile.

"She is just very negative - always has been". You have a huge right to be negative, compounded by years of exposure to this kind of grooming, but it will take a toll on you. 

I know caregiving is difficult, it's pure sh*t, (don't get me started on that subject), and h*ll and up there with cruel and unusual punishment. To make matters worse, being raised by such a negative lady as your mom, you are now in sufficating proximity to her mental and spirit squashing ways. The mental and physical exhaustion of caring for this human joy sinker, who did not in fact promote life in your life, is mind screwing and heartbreaking.

I can't imagine how I could deal with my Debbie Downer husband if I hadn't been raised by a father who use to joke a lot.

It is your job to work on not being your mom. Practice focusing on the fortunate and brightside. Not many people can say like you do "Thank goodness for one sister-in-law that helps me bathe my mom and provides hot lunches x 3 days per week for me to work" and a supportive husband that takes you “out of town at least x 1 weekend per month”. 

I'd do backflips in my underwear in Macy's window if I had that kind of help.

Before you actually drown, get help.

No one person can do 247. If they won’t help or if help is beyond or beneath them, then mom gets aides that do for her part time and if she can’t afford, house is sold.

It's no-one's fault.. but the dependant person (high care needs due to being frail/elderly, mental health issues or other special needs) just kind of takes over.

The Caregiver finds they are no longer living their own life.. they are living the dependant person's life alongside them.

Drowning is a good way to describe it. Your boat is sinking under the weight of pulling your Mother's boat along too.

A long time ago.. I had a goal to FLOAT.

This required many more helpers to row. First I needed to see this, accept it, research & implement the changes.

For you, this will also take seeing the situation with fresh eyes & setting some new goals.
Scrap any promise of 'staying in her home forever' if there was one. Go for something more realistic like 'age in place within reason'. Call it Plan A.

Then work towards getting more helpers. If no family raise a hand, then look for NON-family eg home care services like house-cleaning & deliveries to make life easier for you + paid aides for personal care 2 x week & maybe adult day care for company for Mom. Finding out what is available in your area is a good start.

Keep assessing your plan. For some, home care is just not possible. The needs too high, no local services or their own health or life needs. Running a NH for one is certainly not for everybody!
Then you move to plan B.

After floating, hopefully you can even start to swim again!

Use mom's assets to pay for caregiver to help you out. And if mom dies not need actual care, just companionship that can be less expensive and sometimes easier to find.
Look for Adult Day Care programs in your area. Getting mom involved in one will help you as well as her. Typically they will pick up in a van or small bus. Provide a Lunch and Snack and return them home in the later afternoon.
check with your local Area Agency on Aging. Find out if she would qualify for any services.
Check with your local Senior Center they can be a wealth of information about programs that might help.
If mom is a Veteran or dad was she may qualify for help from the VA. contact the Veterans Assistance Commission in your area.

I’m going through a similar experience. When I complained to a friend, I was told it’s my choice. So, I don’t complain anymore to my friend, I live my choice. But that is not to say I don’t resent or get angry. I keep it to myself. This experience is revealing. I’ve got a few siblings, one is oblivious to helping, another completely useless, and yet another focused on herself, so to speak. I’m not dealing with reasonable people. You can’t picture things changing, but change will come, it always does. So, for right now, keep providing dignified quality care to mom who needs and deserves it. And, take care of yourself. Love isn’t just a word, it’s what you do, it’s a verb.

If Mom is considered low income then she may qualify for Medicaid in home. Or Medicaid for Long term care. Call your Office of aging to see if there are any resources you can get.

I am with many others who have suggested that you get an aid to come in 3 to 4 times a week. I’m living with my parents to help care for my mother and when the aid comes we leave! We do whatever we want. It’s my favorite time of the week aside from going to bed. Call an elder services agency. It’s expensive but it’s worth every penny!

Also - I think it’s time to consult with an elder/estate attorney. They can share with you whether she might be eligible for Medicaid. If so, I would explore AL or SNF.

I get you. My brother visits and calls and then goes back to his life. I’m single with no kids so I was ripe for the picking, while he is married with a child at home. I would appreciate if he ever said ‘thanks for everything you’re doing’ but he hasn’t thanked me once and joked that I’m ‘doing God’s work.’ It’s not funny when you’ve given up your life.

We have applied for SNF ourselves. There are long waiting lists. My father is waiting for an event like a fall that will make the decision for him. In the meantime, we’re running a nursing home over here.

Sending love and support.