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SimplySimple Asked March 2018

Is caregiving forever?!

I have been the sole caregiver for my mom for the past 10 years, since I was 28. I have a brother who doesn’t help at all. When I ask him for help, he either doesn’t show or says no flat out! It’s been ten years so I know I can’t ask him for help! I’m grateful that my mom can walk, take showers alone, and doesn’t give me much trouble. However, I have lost most of my friends and relationships because I always have to think of her first and no one is understanding. Even family members don’t help. It is March 2018 and we’ve already been to 8 doctors appointments! Who can take off work that much?! We live in Georgia, and all of the help that’s out here I have to pay out of pocket for. I’m going broke trying to help myself! I’m so sad and lonely that I’m telling the internet my feelings!!! Do I put her in a home? Even hiring help is more work for me! I feel lost!

Treeartist Mar 2018
Simply Simple, your statement “I’m so sad and lonely that I’m telling the internet my feelings!!!”. I’m glad you have done so! I, and the other people on here are the internet, the people listening to your feelings. We were all drawn here in desperation, looking for answers and feeling very alone. You are smart to get help here.
I cannot imagine what that was like to start caregiving at such an early age without all the life experiences most of us have when we started (the majority in middle-age). And you are still so young. Please give us more information on your situation. How old is your mother? What are her disabilities, etc? My first thought is that you started so young and have settled into caregiving and now your mother is needing more care, and you are so used to doing everything yourself that you are not aware of services that are out there.
Have you called the Area Council on Aging? Also, we used Home Instead, a professional caregivers company for around 16 years. Yes, we had some issues, but on the whole, they were wonderful. We also got about 8 hours a week respite free through the state. Hopefully, there will be others who can give you more advice.

SimplySimple Mar 2018
Thank you all for your responses. I truly appreciate it! My mom started having TIA'S at 50, which led to vascular dementia. I found out that she was in a shelter, because her best friend that she was living with put her there after my mom started "changing". I love my mom, and I'm glad that I'm able to help her, but I always thought that there would be more resources. I met with someone from the Alzheimer's Association last year, and the only thing they could offer me besides what I've been doing is a Medic Alert bracelet! I pay for someone to keep her when I travel, or just when I want time to myself. The places that we use for respite would actually be a good place for her to be full-time, but it's a bit hard to relinquish medical and financial control of my mom's life to someone not as invested as I am. I know that God is protecting and keeping us. While this has been a bit overwhelming, we have both flourished over the last 10 years. I will continue to pray and search for leads that will assist us! God bless us all!

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SnoopyLove Mar 2018
SimplySimple, I am sorry you are in this overwhelming situation. How old is your mom and what are her health issues? You certainly deserve to have your own life. Caregiving shouldn't have to be "forever", like a life sentence in prison! If that is what it's become to you, I definitely think you need to look into other arrangements. Sounds like your mother may be relatively young -- you could have decades of this ahead of you unless you make some changes.

Grammyteacher Mar 2018
I have been caring for my mom ( in increasing amounts) since 2009 ...diagnosis. She is now Stage 7d Alzheimer's.

I have found that caregivers (including me) need to work hard to keep relationships intact. If not we become isolated and lonely. It takes effort to load my mom up and take her to family events (like my grandson's baptism a few months ago)...let me tell you that I understand. But I can't expect them to change everything, I need to do my part and I need to stay connected. We have dinner at our house, at least once a week, for friends and family.

I set up fun things for the grandkids to come and do at our house. We all dye eggs on Good Friday...We do science activities....we paint rocks ...Amazon is my best friend for supplies...Pinterest has lots of ideas.

I also know that it is difficult to ask or accept help. I feel bad or I feel like they can't do as good a job or mom will be uncomfortable ... Lots of reasons, but we just have to allow others to do things. They can bring a meal, sit with LO while we take a short walk or go to the store or take a nice hot bath.

These are the ways I take care of myself while providing 24/7 care for my mom.

Eyerishlass Mar 2018
Ten years of non-stop care giving can cause a lot of damage to the care giver--you. I had similar issues when I cared for my dad in my home. My social life dried up and when I would be invited somewhere the invitation always included my dad, which was thoughtful on the person inviting me but I would have liked to have gone out without my dad! As it was, I'd take him with me and I was always "working". Where is the bathroom? Are there steps? What is the parking like? Are there pets or small children that can tripped over? I finally stopped going out altogether.

Have you considered an assisted living for your mom?

cwillie Mar 2018
I'm bumping this up so more people can see it.
I do have a question though... what is your mother's disability? - there may be support groups specific to that which would be more helpful to you - and why are you having to pay all her expenses?

smeshque Mar 2018
Simply Simple, I am sorry for your situation, I will pray for you and I hope you also have that avenue as well. i would like to direct you to the "Believing caregivers, how do I reconcile that scripture says to put others before me whereas the secular world says put me first?" and go to page 13 and read the post from Rosses003, she did a beautiful job of summing it up.
Best wishes.

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