My daughter has issues that get very bad at night mostly but sometimes during the day. Im turning 65 and had almost full time hours taking care of her and then her insurance slashed my hours. She has pulled any type of ability to tell them what’s going on with her. She doesn’t know how sick she is and is very delusional at times. Taking care of her has severely hurt me physically and emotionally . I’ve developed health problems because of the extreme stress of it. And PTSD. Because She suddenly screams or yells without warning. I jump and now if I listen or watch anything that has background noise of kids yelling or similar noises I suddenly feel alarmed and have strong emotional anxiety and alarm thinking it’s her. I get startled by her - for example the other night she was screaming and got out of bed - I was in another room. But when I went to see what the matter is- she turns on me becomes emotionally abusive. So I walk away put on noise canceling headphones. So I guess she was knocking and when I did not answer because I did not hear her so she slams the door with her hand and I JUMP. It’s alarming. This happens a lot where she yells or makes noise suddenly and I jump. It’s so miserable. So now that they cut my hours I have to find work outside the home and my fatigue makes me feel like I can’t get through the day without taking at least a 30 minute nap 2x a day and she will not take her meds correctly so I'm bracing for abuse of them and her demanding more.
SO I have to work and also be woken up at 12:30, 2 or 3 or 4 am by her yelling -screaming or talking loudly or knocking on my door. How am I going to survive this? She won’t let me talk to her dr who knows nothing or her caseworker I have no more say I’ve called 911 at times who don't end up taking her to the hospital. They won’t take her unless she’s in the act of doing something like killing herself. I stopped calling them. Although I've had them here at least a hundred times already over the years. I’ve talked to many people in government who do nothing about this dilemma I’m in. Nothing. I’ve asked for laws to change and to pass laws to help parents like me. Allowing for caregiver parents of kids who are on disability to automatically become that person’s guardian. That would save added stress and reduce a financial strain of a single parent. They expect you to shell out thousands of dollars to become her guardian. I am single now 3/4 unemployed. Im facing retirement too and do not have much at all saved for that. This all started 4 years ago when I knew I couldn’t leave her and go work outside the house. Yet her illness started soon out of high school and just got worse. They gave me enough hours to be here as her caregiver but then slashed them. If they understood how much money I’ve saved the state for keeping her here - they would thank me. But they don’t think like that. Now I’m worried about being gone too much. When I’m not around she gets sicker she starts hearing voices worse and they help very very little for mentally disabled people it’s all PHYSICAL disability . The program says to allow for needing to not be alone or medication dispensing. But then it’s turned over to the Insurance Company who does not agree to pay for my time for that. I know she’s going to abuse the meds now which will become a huge problem! Oh and yes she was at a group home for a while and it was so horrible! They tried to force a shot to prevent pregnancy because they let the guys and girls in one another’s rooms and smoked throughout the place . She said her bed was in terrible shape and they didn’t let me into the place at all to see it..
Given what you are describing getting an outside job sounds like a good thing. I think you will be safer and in a healthier environment. You will also accrue more social security hours while you are working longer in the work place.
I live in Florida and there are a lot of folks in their 60's, 70's and 80's working. My boyfriend is pushing 70 and still working fulltime.
I'd embrace an outside job and don't look back. Consider it as something you are doing for you.
Why would you even want to spend thousands of dollars to be her guardian?
I question why you would want to be her guardian and still be subjected to abuse? She will not allow you to talk to her doctor or case worker. Why would you want to be her guardian?
We were approached by a county hospital social worker in Colorado to have a family member become my brother's (age 50) guardian. He had bipolar and alcoholism. All of the family members who were asked declined to take on the roll. We knew it would simply subject us to extreme abuse.
It is okay not to be the guardian of a family member and many times it will simply perpetuate abuse.
We have untreated bipolar and schizophenia in our famly and I know it is very rough on the other family members. Both my mother and myself have been threatened by family members with untreated mental illness.
Check out some NAMI meetings, on line or in person. (I've never done this.)
Buy ear plugs and use them every night. You might also buy a white noise machine for your bedroom and use it every night. (I've never used them.)
Create some pockets of peace in your life. Check out some House of Worship services. Take some walks in the sunshine. Check out your local senior center for activities for you for when you are not working. My local senior center has crochet groups, knitting, cards etc. Even if you just sit with others it will give you a mental break. When you are not working I'd try to get away from the situation and get some peace and laughter in your life. Build a life away from caregiving your daughter so that you get some temporary respite.
Call 911 again if you are threatened. Tell the emergency crew you are afraid you will be killed and that she cannot return to your house.
Read up on the Rob Reiner case. Rob had unlimited money but even with that he struggled with care for his mentally ill son. The son ended up murdering Rob and his wife in bed. Longterm I'd reconsider alternative housing for your daughter if it is ever again an option.
It is legal in the US to have untreated mental health. Since she won't let you talk to her doctor nor will she let you talk to her caseworker big picture I'd
make a long term plan in your mind to have her move out. It is not sustainable for your health. In my experience in the US families of those with
mental illness get very little supports. Legal protection goes to those with the mental illness.
Walking on eggshells every day in your home is not healthy for you. The PTSD takes a huge toll on your health.
Work on small changes in your life to give you some peace.
Eat healthy. Eat plenty of protein, veggies and fruit. Try to avoid eating things in packages with ingredient lists. Stay hydrated. Drink plenty of water.
Big picture you need to take care of yourself first in order to provide oversite on her care if you even choose to do so.
Take small baby step changes on things in your life to make your life better.
You have value and your life has value.
Blessings and support.
Perhaps you need to adjust the way you describe what you do for her to get the insurance company to pay you again. But even with money, this will only get worse as you get older. I think you should explore other options, like another group home. They can't all be the same, and what are your plans for her when you are gone? She will need a way to live without you in the future. It sounds like you are burned out and are risking your own health and safety due to her problems. If the stress kills you (40% or so of the people who caregive predecease their charges) she will still need to live somehow.
It sounds like a lot is going on here with her, and your sleep is being interrupted at a level that is dangerous to your health. Sadly there isn't much you can do when it involves adults who are mentally ill. You might need to call 911 the next time you feel threatened. I'm sorry this is happening.