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I think I need professional help. What type of professional do I look for that can help me deal with being the care taker of my parents with dementia? Today I go take care of my parents and the anxiety I feel each day is unbelievable. It happens every morning that I go help them and even when I don't have to go. I shake so uncontrollably..that it scares me driving the hour to reach them. I never know what I'm going to face when I get there. Either a great deal of poop of my moms to clean off her and everything she sat on, or my dad forgetting an important discussion or just forgetting simple but important things. They refuse to move to assisted living or memory care. I always had my dad help me with my mom and her dementia. Esp her refusal to take a shower or use the toilet. It's a battle to get her to do either of those things. I don't understand why the toilet is the enemy to her...other than it's the part of her brain that reasons wrong from right that is affected by her dementia. She would prefer to go in her depends.
My dad's memory has gotten progressively worse over the past 2 months and it's happening fast!! So now I have both of them to care for. I am losing myself and so filled with anxiety that other than taking care of them, I cannot function. They finally agreed to some home care and I thought things would be easier for me. It's not. I am coordinating home care, physical therapy for my mom before she becomes confined to a wheelchair or bed. Wound care for her foot. Got a paramedic group in their county to come out and give my mom her first covid shot. I have a repairman coming to fix their washer today. I am on the phone constantly when I'm not with them. I worry about them all the time!!! I can't stop!!! Now I'm having trouble convincing myself to shower and my home needs cleaning so bad. I feel like any minute something bad is going to happen to them. I feel as though my life will consist of taking care of them, then my step mom and finally then I will die. That's all that's left for me. I don't enjoy anything that I used to and don't want to even leave my house if I can avoid it. I myself am on disability because of half a dozen autoimmune diseases. I am not an only child. My sister lives 10 min from them but doesn't help at all. She set her boundaries early on and has stuck to them. My step brother lives in another state and even though he is 65, has the mind of a 16 year old. He wants to come home but no one but my sister ( his half sister) has room for him. She set her boundaries on him a very long time ago and wants nothing to do with him. I'm the only one that has helped him and kept in touch with him for over 40 years. I've had a sister die of suicide, a brother die of Hep C and liver failure. My biological dad passed immediately following heart surgery. My step mom is wonderful and wants me to visit but I don't have myself together enough to make the 4 hour drive. I'd be miserable company as well. I need help. I am on antidepressants and only buspar for anxiety. That doesn't touch it. My psychiatrist has been the same for the past 30 years and I feel like he doesn't hear me anymore. What type of therapist should I see that can dive deep into my situation right away and help me help my parents and myself??? I thank anyone in advance that can help me in this situation where there is no happiness to be seen anytime in the future.

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You can't continue doing this any longer.
I know that feeling of - this is all there is for the rest of my life and then I will die. If someone talked to me about the future, going on a trip etc... I was just confused, did they not know my life was over? .. and it hasn't been even remotely as bad as it is for me as it has been for you.

It is really hard to find your way out of this when you feel like you do but you must try. Find a professional to help you organise their care, Speak to their doctor and find help getting POA. They need to be in a care home, No therapist can make this somehow bearable to you when it is clearly not. Fix their living arrangement and then find a new therapist to focus on self-care for yourself.
I am so sorry you are going through this but please fight for your own life.
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CJLC1234 Aug 2021
Thank you so much for saying this. Yeah, my doc isn't helping at all!!! I appreciate your wise advice!!!
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Your sister was quite wise to set her boundaries and now you must do the same. You are not the problem. Setting up your parents so they are protected and cared for by someone or somewhere else (even imperfectly) is the goal. You must stop doing it yourself, as you see it is destroying you. Bless you for your valiant effort but now it's time to pass the torch. MANY on this forum have walked in your shoes so please listen to their wise guidance.

And now *how* to do it:

If you are your parent's PoA, you must read the document to see if your authority to make decisions on their behalf is springing (requiring medical diagnosis of incapacity) or durable (does not require medical diagnosis). If they it is springing you will need to do whatever it takes to get them in to see their doctor for the cognitive exam, even if you must tell the a "therapeutic fib", like Social Security now requires an annual exam to confirm your receive of monthly benefits. This is not immoral or unethical because it is for their benefit moving forward. Hopefully your sister will help get this done. If your PoA is durable you can begin to make decisions for them regardless if they "like it" or are cooperative. Again, you can create a therapeutic fib to get them out of the house ("There's a gas leak. There are termites and you have to move while the whole house is treated." whatever). Hire a downsizing service and pay for it with their money.

If no one is their PoA, then you can pursue guardianship through the courts (but this is very expensive even to gain it for 1 person, no less 2). Therefore your only other realistic option is to call APS and report them as vulnerable adults. They will do a wellness check and will move to gain guardianship and will take over their care and protection. They will move them to a facility (and nowadays newer facilities are quite nice and well managed).

In the meantime, if one of them requires a call to 911 or trip to the hospital, make sure the staff understands in no uncertain terms that they are an "unsafe discharge" and there's no one to care for them in the home. The hospital often gets very persistent and aggressive in hounding family members to retrieve patients. In my personal case the Sheriff dropped off my step FIL at his house at night and threatened me because I wouldn't go get him. Ignore all threats and make sure all other family members know to NOT go get them. You can talk to a hospital social worker to begin the process and get them to be discharged directly into a facility.

For the time being you can call social services to discuss getting an in-home needs assessment to see if they qualify for county-funded services to help with the care burden. If they need Medicaid to go into a facility, you and your sister can fill out the app for each of them, it's not that complicated but you will need access to financial information like banking and investment statements, their ss numbers, etc.

I know it feels so overwhelming but just try to eat the elephant one bite at a time, even if you just make tiny progress each day. Eventually they will be resettled and you'll have your life and peace back. Wishing you speedy and full success in moving forward!
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CJLC1234,

Oh my gosh, I read this and I am reminded of the mayhem that I had in my life. Your situation is tough. I am not diminishing your pain whatsoever, but let me say that I took it to a new level and I admit that as good as my intentions were, I didn’t make the best decisions.

I did the same as you, back and forth to my parents home. I was the primary caregiver for them. Daddy died. I then continued going back to care for mom. Then Katrina hit. Mom lost her home and moved in with me. I wish I had realized how much that it would impact my life having my mom live in our home. It was fine in the beginning, but as a parent’s needs change, the demands grow. It’s hard, and is indeed very depressing!

I also cared for my brother who had hepC. I had to stop caring for him because I was stretching myself too thinly already with caring for my mom, and being a wife and mother. He died in a hospice house.

I have more than one suicide in my family. My niece, nephew and three cousins have committed suicide. I feel your pain, it is devastating! I am so sorry for your loss of your dad and brother.

I came to this forum because a social worker suggested it for me. It has been a great comfort for me. I also did therapy and an in person support group. All were helpful. It’s work. It’s about developing a healthy attitude and desiring positive changes in our life. It’s about truly looking at our behavior. It’s about listening to others viewpoints.

Life can be more than just surviving. It took me a long time to figure that out. My energy was completely depleted. My stress level became so bad that my blood pressure rose so high that my doctor sent me for heart tests. I can’t tell you how many times my doctor was upset with me for not eating. I physically couldn’t eat. I had no appetite! Some people eat more when stressed. Others like me, cannot eat if they stressed out. I hated when people asked me if I was sick because I am so thin. If I forced myself to eat, I would throw up, so what was the point of eating?

I had mom for 15 years. My brother and sister in law took her in for about a year and a half. Mom spent the last month of her life in a hospice house where she died peacefully. She died in April at age 95. She was sorry that it was a hardship for us.

I loved her dearly but sometimes facility care is best all around. I wish that I hadn’t felt that I would have been ‘less than’ by allowing others to do the ‘hands on’ care. I can see now how I actually set my mom up for her dependence upon me. Hindsight is 20/20! Please learn from others who made awful mistakes and wish that we hadn’t.

Wishing you peace as you navigate your way through this difficult time in your life. Take care.
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CJLC1234 Aug 2021
Oh gosh, I am learning and your 1000% right! We have some unfortunate similarities. You have really hit home with your response. I too believe that I, by trying to be there for them, made it easy for them to depend on me and call me for every issue they have! I have some very tough but necessary decisions ahead of me. Thank you for telling me about your experience.
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Your parents need to be placed in the appropriate facility, where they will receive the 24/7 care they need, and so you can get a much needed break from their care. Their care is killing you. And I think you know that, that's why you're reaching out. Please it's not worth it, when there are logical solutions available to you and your parents.
Your parents care has gotten way beyond what any child could endure without the help of professionals in a care setting, and you know that, so I hope and pray that you'll take the necessary steps to get them placed ASAP.
You do not want to be in that statistics where the caregiver dies before the ones being cared for do you?
And if you've been seeing the same therapist for the last 30 years, and they still haven't helped you, then it's way past time to cut your losses, and move on to someone different. It would be helpful too, if you could get plugged in to a local caregiver support group. Try Googling to see if there is one in your area. My support group saved my life when I was at my wits end while caring for my husband.
We all have our breaking points, and it sounds like you have passed yours. Please take care of yourself. You probably need to put on a different antidepressant as well, as the one you're on obviously isn't working anymore.
You deserve to find happiness and joy again in your life, and my prayer is that with God's help you will.
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Grandma1954 Jul 2021
wise suggestion about the Support Group, Wish I could give you more than 1 helpful answer 😊
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Until you come to the conclusion that you can't save everyone, there isn't a drug, a therapist or a song to sing that will save you.  My words are from experience.  At some point you have to say no.  At some point you have to say I can't do this.  At some point you have to say let me get you to someone who can help you.  That is the strongest most helpful thing you can do for your parents and half brother.  Help your parents sell the house and move into a LTC facility.  They can no longer manage their lives and neither can you.  The half brother may need to go to a group home if he truly has the mentality of a child.  You are only one person.  Make suggestions and take a step back.

My stress was cut in half once I placed mom.  Still plenty to do and vex about, but not near as much.
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lealonnie1 Aug 2021
Perfectly stated.
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If you won't make the necessary changes for your own sake, will you do it for your Dad?

He's been a good soldier on the staying in place campaign. Now he's breaking down and the strain is going to kill him. So scrub Plan A, forget it, and visualise a Plan B where they are together in the right choice of facility, with no burdens to bear and no responsibilities and no more fighting to stay put. Just the right level of support for their needs and each other's company, and a child who isn't approaching a state of trauma when s/he (?) comes to visit them regularly.

Forget happiness, forget waiting for everyone to die and paradise in the next life - there are people who can help you make something better happen soon, step by step. Interested? You can do therapy later.
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I do not think you need another therapist. You need to get your parents in a NH ASAP. I hope you have POA on both of your parents. If you do not get it now before they are deemed incapacitated. If do have it then meet with a lawyer about moving your parents in a NH now. The sooner you do it you can start to get your life back.
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CJLC1234 Aug 2021
You are right! I don't have POA but am working on it now!!! Thank you!!
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OK, everyone here is giving you all the things you need to do to help your situation but what they are not understanding that you are in no condition to do all the things. I get that because I'm in the same place. I know what I should be doing, I just can't always get the energy - mental or physical - to get them done, which then makes the spiral just go on and on because it has no forseeable end. It's called depression and takes many forms. You say your psychiatrist of 30 years isn't hearing you any more so tell him/her that and ask if there is a psychologist that can provide you some additional therapy. Ofter the psychologist will help with more concrete, behavioral steps to help you make plans, get things, done and see where you are catastrophizing things unnecessarily. Psychiatrists often look for medical solutions and more understanding of "why". They fulfill different roles and I think you need both right now. Dealing with aging parents is a tough task no matter what but dealing with it through your depression and anxiety is impossible. You have lots of good suggestions here for what you need to do. Now go find a compatible psychologist or social worker to help you get yourself in a position to get these things done.
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A therapist is not what will help you unless they're willing to move into your parent's house and take care of them 24/7. An hour away is too far to go every single day to take care of them, but not so far that if they had 24-hour care you couldn't check on them regularly.
You have two options here. Either find a nursing home for them to be placed in or move in 24-hour live-in caregivers.
Then take a ride over to your sister's house who's five minutes away and tell her she can take her boundaries and stick them where the sun doesn't shine. Say the same to your brother too.
Let them both know that since they do absolutely nothing and won't act on mom and dad's behalf that you will have to. This means they're going to a nursing home. If brother and sister are worried about possible inheritance, well they can take over mom and dad's care themselves.
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I understand what you are going through. You cannot keep this up. Your mind and body are telling you to stop. Eventually, your mind and body will essentially “collapse.” I ended up in the ER. Counseling and therapy will help, but it also requires mental energy and physical energy to get there. You need a break from all of the caregiving and time to make a new plan of care for your parent. Trust me, you have to take care of your own mind and body.
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