My mother was in a car accident in the 1970’s which paralyzed her and put her in a wheelchair for the rest of her life. My step brother was 13, I was 9 and my sister was 3. For the next two years it was a continuous cycle of hospitals, doctors and rehabilitation centers. Mom is an incredible woman who made this work by shear will. She is truly an incredibly strong woman.
When she came home from rehabilitation the last time, we had two wonderful women come in to help in the house. The third care giver was me. During that time, my mothers and my relationship was that of caregiver and patient. It was not a good situation.
My father was working the farm as well as a job off the farm, and was killing himself trying to make enough money to pay hospital bills and support his family and remodeling the house to make it safe and comfortable for his wife.
She learned a new trade started a business in the home. She is amazing.
Our relationship never healed from our caregiving/patient time.
I left the home when I was 17, and made a series of really bad life decisions, but pulled it together in my late 20’s and early 30’s for my two wonderful children.
My dad was very supportive and tried to bring his family back together. He will always be my hero.
Dad died suddenly about 20 years ago. I agreed to move back to the farm with my son to help mom get ready to sell the farm equipment and property and have been here since that time.
I thought that helping at this time would heal my relationship with my mom.
My income has declined over the years. I have pointed out on many jobs because of medical emergencies and doctor appointments. I now work a part time job.
I never see my children because I cannot seem to get away from the farm because of financial restrictions or work restrictions. When I do it is wonderful. Every time I plan a trip some emergency happens with mom and I have to postpone the trip, and when I take her with me, I spend more time seeing to her comfort and needs than spending time with my children and grandbabies.
My nephew has taken over managing the farm, and he is wonderful, but they cannot seem to see how much care it takes to make mom independent.
The community here cannot get past the bad decisions I made in my youth, and admire my mom for her strength and courage.
Over the years I have made plans to move away, but something always happens. Mom had an accident and broke her legs. Continual infections that need extra care, an infection of her foot that was very serious….
Now I have missed the birth of a grandchild, a fifth birthday party of another, a new home purchase and moving party for another child. These are events I really wanted to attend, had planned for, but was unable to attend because of medical needs and event for my mom.
Now we are going the chemo treatments. She does not want to bother my sister, because she has so many more important things going on in her life, and wants her to be here for her surgery that will take place after the chemo.
She will not hire a care giver because she does not want the community to know of her special needs. My nephew is working so hard with his life and family and I just do not want him to have to help her with some of her needs.
When will this ever end? What can I do?

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Thank you all for your caring and considerate attention. I had a really low point today and had to vent. There have been several times over the years when I was starting to set some boundaries then an emergency happens and now we have the cancer and chemo issue. I thank you for your kind responses and suggestions.

My sister lives eight hours away, calls mom every day, and is POA. My children live 6 hours away. They do visit but accommodating the extra people in the house leaves little privacy for anyone. My sister is planning leave for the surgery that will follow the four chemo treatments.

When I try to share my feelings with mom it always gets turned around and ugly, and as I have been told now is not the time to make changes. Fighting the cancer is now a priority for us all.
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Is it possible to discuss your needs and concerns with your mother herself?
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Your mother is a wonderful, strong person. She deserves respect and honor.

You are a wise, compassionate person, strong with experience. You deserve respect and dignity. And time with the other part of your family!

There are no bad guys here. Just some really bad luck that you all have done well to survive.

Your mom is important. You are important. Your children and their children are important. It is time to re-order some priorities, so you don't deposit all of your attention on one relationship when there are several that are equally important.
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"but they cannot seem to see how much care it takes to make mom independent"

This is the sentence that jumped out at me as I skimmed your post. I question how independent anyone really is who needs someone else to prop up their way of life. You have made your mother the number one priority of your life for far too long, it seems to me you need to accept that the only way to change things is to change your priorities and act accordingly. You are not indispensable it just feels that way, there are others who can fill the gap if you step back, either family or paid caregivers.
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It's really never healthy for us to give up entirely on our own lives for someone else's life. But you have figured that out.

Do you still feel like you are "atoning" for your wild years? My hubby had about 10 of those, and he still feels as guilty about it as he did when he was a "wild child". Breaks my heart. I don't know if his mother brings it up to him, but she certainly never forgave him.

Is it possible for you to move out and facilitate 24/7 care for mom? You sound so sad. 20 years is a LONG time to make amends, and a LONG time to care for someone.

Your SISTER is too busy? Wow, that resonates with me. My sisters are busy, so am I, but b/c they beg off any "mom help" b/c of work and family, she thinks they are too importantly busy to help her. I, on the other hand, am not currently working and probably won't be again---yet running a household, caring for grandkids, and having some health problems myself--I find that attitude of "your sisters are SO BUSY" just grating. I MAKE the time for mother, they don't.

Is moving her to a NH of ALF a possibility? She has proven to be pretty independent and in spite of some serious challenges, has risen to the occasion.

Can you be straightforward with her? Can you tell her you are missing your own life, for her, without causing anger?

You are not alone. This dynamic is old as the hills. And yes, it will end when she dies, Or you do. I just barely heard of a couple where the wife had devoted her last breath to caring for her hubby. She died of, well, stress. Everyone thought she'd live forever. She just simply wore out. Hubby followed her 3 months later.

Caregiving is incredibly, incredibly stressful.

I wish you luck. Do come back, others will have better answers than mine. I can walk away from mother as she doesn't live here. You can't----the stress and sacrifice is daily for you.

Be gentle with yourself. Perhaps some counseling to help with the "guilt" and possibly moving on.
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Rural communities can be rough....I call my parent's church "Our lady of condescension" because they are always in a turmoil of judging or faulting others. I can count the young adults on one hand.

Do you have med and financial POA? If not, get it now. Sounds like pride is getting in the way of common sense.

And trust me....those folks that hold the past against you.....they have a whole closet of skeletons to hide as well.

You mentioned how much work it takes to make Mom "independent". If you cannot get away for a job or to see your way no how is she "independent". You need to find a way for your family and Mom to stop being in denial and "get it". Rural folks who are the worst about "what will people say?"

Life's too short. I share a whole load of regrets from duty on the farm and neglected my own kids upbringing in order to be the servant daughter. Call a home health care agency today and start with one day a week... Good luck to you.
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At this time I only have comments on one aspect, and that's your adult children and the grandchildren. Is there some reason they can't come to visit you? With all you have going in your life there's no reason why you should have to go see them.

And there's always Skyping.
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You shouldn't have to completely sacrifice your life for your Mom's.. yours is just as important! The years can add up on you .. 15 years is too long to give up your life for your Mom.

Why is it so important to her that the community doesn't know she has special needs? Sounds like she DOES have special needs. I would draw some boundaries and insist that she hire a caregiver or move to an assisted living type environment where she can get some help from others as well.

I know this is advice is much easier said then done. I just devoted the last 5 years of my life to my parents. They are in a facility now.. but I am still tied to them and responsible for them. After 5 years I don't even know who I am anymore and am learning how to focus on myself.

Take care.. you can still be there for your Mom without completely giving up all of your own life and happiness.. you will never get these times back.
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