When can I possibly live properly? When I'm 50?

Oh honey I am so sorry for you. Can the VA help you get a break, or help you get him into housing that is not NH, but maybe VA assisted living or such? If you did pass, someone else would HAVE to step in and get him some help,, so please consider those options first! You certainly have your hand full,, time to ask the VA or aging services in your area for help. Let them know in no uncertain terms that you have CP and can not continue on this way

Hi hlp3916, 

Caregiving is a long, difficult road, and we're happy you have found the support of others here on this site. However, there are limits to what untrained members of the forum can provide for you. 

If you are experiencing thoughts of suicide, please reach out to experts for additional support by calling the 24/7 National Suicide Prevention Lifeline at 1-800-273-8255.

Additionally, you mentioned that your dad is a veteran. I agree with pamzimmrrt and suggest you look into other VA benefits and programs that can help reduce your caregiver burden. The Program of Comprehensive Assistance for Family Caregivers (PCAFC) is a newer VA program that might be an option.

You can read more about it here: https://www.agingcare.com/articles/va-expands-program-of-comprehensive-assistance-for-family-caregivers-461974.htm

I'm sure other caregivers will be along shortly to provide more words of encouragement and advice. Hang in there and please take care of yourself!

-AgingCareCM

With your own illness I honestly cannot imagine that you can go on this way. I think you are going to have to consider LTC for Dad. If you have a caseworker for your own health, please ask to be connected with some Social Services here. If not you may need to open APS case, letting them know you cannot continue to care for Dad at this time. He may need court appointed fiduciary as a guardian, at least temporarily.
You say that placement isn't an option.
Can you tell me why? Is it that you are living with him and cannot afford to have his home sold out from under you? Or is he living with you?
I honestly think you are going to have the courts, social workers, the VA or SOMEONE to take over care of Dad.
I am so sorry you are going through all this. I honestly cannot imagine. I wish you luck. Make use of any and all resources you can find. Contact your local agency/council of care in your area.

Op, I thank God that you have realized the peril of your situation.

Dementia or preferential/extreme senior brat behavior comes with not just psychological challenges, but physical ones. You are right to be ready.

With him a combat vet, he is entitled to aide care and homes. If his behavior spirals and the falls and double incontinence start, it may be coming time to put him in one.

Please don't despair.
You are reaching out & seeking help. Great!

You are researching the options. You may feel stuck. No option looks good yet. Stuck is ok for a while. It has a purpose. (Stuck is much better than falling in a deep hole!)

I have hope that, with support, the next pathway will become clear to you. Then you will have a plan. Once you are on that new path - you will become unstuck. A path that includes own life goals 😊

Energy conservation strategies will be critical to you. Pace yourself thoughout the day. Take regular rests, physical & mental. Sit down with a cuppa. Listen to music. Power nap.

If your sister or other relatives cannot 'save you' from this situation (& that's OK) turn to look for non-family people who CAN. Calling Lifeline or having a long sit down chat to your Doctor can start getting support for YOU. Because YOU matter 🤗

Care Plans needs to be evaluated to keep up with care needs regularily.

I think Dad needs a new plan. I suspect you do too.

Sending you positive thought of strength.

I am sorry for what you are going through. It’s not fair that you have to deal with this on yr own. I have a similar situation, my father was always a difficult person to deal with. When the signs of dementia started showing my mother and my sisters left. They didn’t believe me when I tried to explain that he had dementia. I have been taking care of him for 4 years. I have fibromyalgia and severe migraines and a family and family problems of my own. I don’t understand why it’s other members of the family don’t make an effort to help. Alzheimers society and friends have been my support system. I hope you can find people that you can speak to in yr community. Hugs

Better question is what quality of life are you expecting to have? If I were you I would dump my dad at the ER and just leave. You will have no future if you keep on this path, no point trying to salvage it now if you are unwilling to place your father cause he will get worse. That may be true, but so will your situation. The world does not care if you make yourself out to be the martyr, cause that is what you are doing you are essentially killing yourself for the belief that your father should remain home.

This will only get worse if you are scrapping by now, look at this way it is only downhill from here to the end. So you have a choice get off the ride now or watch the train wreck. Do what your sister did and dust your hands, vet, father, person idc is not worth giving up your own life over end of story.

Not sure how the VA works when it comes to placing someone in one if their homes. If Medicaid is applied for.

I am a little confused, you are living in Dads house caring for him? If so, as his disabled child you should be able to remain in the home if Dad goes on Medicaid for LTC. You cannot physically care for Dad. Eventually he will need more care than u can give him if not already.

Does he qualify for an aide through the VA? If not why? This SW should be helping you to find ways to give you a break. Medicaid does have "in home care". Did Dad serve during Wartime? If so he maybe able to get Aid and Attendance. Would give u more money to hire an aide.

If he is getting $6000. a month from the VA and the house is paid for, once the necessities like power, food, phone, "cable " are paid for, he should have a decent discretionary income. Use it to pay for care. You may not get all the hours you want, but it certainly will free you up from much care. I would estimate that most services charge between $25 to $30 per hour. Calculate how much you're able to spend and hire from there. That first year of heavy duty caregiving and getting service in place is a monster. You will get it solved.

Omg you have been incredibly unselfish all your life and what an amazing young woman you are! check out www.aginglifecare.org for an accredited care manager in your area. they are life changing! good luck and God bless!!

Please please please remove suicide from your table of options. It is hard to see clearly when you are drowning. Things will look differently once you make the right connections and get some help with things. Another poster suggested meeting with a social worker at the VA. I think that is an excellent place to start. You said the VA is helping with "medical stuff", but you need help with logistics and planning and possibly placement of him. I have seen varying disabilities of people with CP. Can you work or are you taking care of dad 24/7? Have you been diagnosed as "disabled" by a physician? If so, I believe you are entitled to social security as a disabled child of your parents. Check into that if you haven't already. You are entitled to have a life and to have hope and to make plans. I think a social worker and some therapy would help you immensely. It is not going to be easy because there will be some tough decisions to be made that dad is probably not going to be happy about. We have all been there....just most of us weren't having to do it at the age of 28. Stay strong and keep asking the VA for help until you get the right person. Ask for a social worker.

Take advantage of all free services, including aide in-home care. The VA does help with that if he is eligible. If not, use the extra income to hire local care even if it's for a couple of hours a day, a weekend, or a day or two during the week. Use that time to renew and refresh, you'd be surprised how just a few hours of respite can help! Ask around local senior centers and nearby churches for home care referrals.
Apply for food debit card benefits through SNAP, and for Meals on Wheels, which will help free up more money for his care. A senior center usually has staff that can lead you in the right direction for added services, reach out - they are there to help! Encourage any friends your Dad has to visit. It sounds like your Dad is also fighting feelings of hopelessness and loss of independence. This is a rough time for both of you.
You are tired and feeling unappreciated and hopeless, but you are truly heroic and a wonderful daughter. Cleaning out the home and brightening it up is a good start to change the energy, so is playing music you both like. Keep going. Please don't give up, this too will pass. And we are here for you to vent and get advice every step of the way. God bless you.

Sign him up for Medicaid to get in-home care until you have him placed in a facility. With dementia, the anger and the combativeness can last for a couple of years. Even though you don't want to place him in a home, you may have to do this eventually to save your own sanity.

From the tone of your question, it sounds like you are ready for this step now with getting a home health aide. Don't get discouraged if you go through a couple of them in the beginning. This happens. Tell the agency that you will need a male caregiver who can handle someone with combativeness and strength.

From what you've mentioned about your family, I wouldn't depend on them. They will always bail when they are most needed and have more excuses than someone going to jail (a little humor injected here).

I had a female client who was in this stage of her illness. She would sundown in the afternoon around 4:30 pm. Her friend would notice this and leave me with this behavior to deal with. She had well-meaning friends in and out of her house all week preventing her from having the proper care. After they left, she would be mean and disoriented for the rest of the day. This included having accidents on herself with yelling, criticizing and complaining about me to her friends. One time this woman blocked me on the step preventing me from moving. Another time she yelled in my face about a trash bag. I was constantly being accused of stealing. Who in the heck wants Depends briefs and canned milk?

What is so difficult about taking out the trash? It is in the bag, and you put it in the can. However, this woman wanted me to take a large black trash bag that you use for leaves to put three little bags of trash.

Learning how not to take this behavior personally is a start, but sometimes you need a break from the constant discontentment and arguing. Getting some space and putting things into perspective will better prepare you for the challenges ahead.

Also, The Alzheimer's Association has a twenty-four-hour hotline that you can call at any time when you are hitting these rough spots in your day.

Seek medical help for yourself especially for the depression.

hlp3916- there are two people you have to take care of. You choose to put all your energy into taking care of one person's every need, while totally ignoring the needs of the other person, and worse yet, abusing and treating her as though she was a slave, undeserving of any love or life. No wonder she wants to kill herself.

I highly recommend you write down, in two columns, the primary needs of the old sick guy in one column, and the primary needs of the lovely young woman in the other column.

Next step is to come up with a plan to meet those needs of both of them without sacrificing one for the other. If sacrifices have to be made, both have to share that.

Next, research all available resources in order to carry out your plan. Start with the resources that other posters have suggested.

There is hope. There's a light at the end of the tunnel and it's not a train.

Stay in touch and let us know how you are doing. We care.

First I wouldn’t let my daughter be my indentured servant, paid or unpaid. Some parents have kids purely as caregivers when their old.

My quadriplegic sister was born when I was 10 and lives with my mother who’s 80 with Parkinson’s. Their disabilities are the least of their problems. They believe everyone should forego their life and only see to their needs.
I’m 57 now and it has destroyed my health and they do not care the sacrifices I made. In fact they are grooming my daughter and others in the family for when I give out. They’ll change me out like a tire.
If you don’t create boundaries and a life for yourself you’ll never have one.

You have so much on your plate. I agree with AgingCareCM, please contact Crises Services in your area (Pennsylvania??) or the National Suicide Prevention Lifeline at 1-800-273-8255. I have been at my lowest and mentally hurting years ago at age 33 and thankfully realized suicide was not the answer. It is a permanent solution to a temporary problem. Talk to YOUR doctor, too. They can help.

I'm not sure why others are suggesting Medicaid as your father's monthly income would not qualify him. You mentioned your father has dementia. Has he been actually diagnosed with it at the VA? Is he paying his own bills or are you "helping" him by writing out checks and/or paying bills online for him? If he needs that kind of assistance, I would make an appt with an excellent elder law attorney and get a POA and other documentation in place before his dementia gets any worse. There are different levels of competence when signing legal forms (an elder law atty can tell you this). My Mom had slight dementia but understood exactly what she was signing. PLUS, a consultation with a qualified elder law attorney will explain YOUR options as a disabled caregiver. The $$ spent is worth it. At this point, your sister sounds like she is washing her hands of the situation and is not going to argue with you about your father's care. Honestly, if your father is argumentative and combative, I would make the initial consultation appt with an elder law attorney with YOU ALONE.

You need to take care of YOU, too. At this point, your father is getting health care from the VA, which is a good thing. I assume you live in your father's home (which you mentioned is paid off -- another good thing). The next time you go to the VA for an appt., when your father is in the exam room waiting, excuse yourself and seek out the nurse or doctor and discuss your father's demeanor towards you and others. Sorry to say, but he needs some medication to calm him down. Dementia will only make this behavior worse. Dementia patients are very good at "showtiming" (acting "normal" when talking to doctors) so it looks like everything is great. In the meantime, you're looking like the lunatic and melting down from caregiving. Doctors and nurses need to know exactly what is going on "behind the scenes" so to speak so they can help their patients and caregivers. Don't sugarcoat it.

Contact the resources that others have suggested. They are all good ones. Also (no one mentioned), if your father needs to go to the VA Emergency Room for ANY reason, that is your opportunity to let the ER staff know (without a doubt) that he is NOT safe at home and you can no longer meet his caregiving needs. Ask right then and there to speak to a social worker (SW). The ER can NOT discharge a patient to an unsafe environment period. Now they may TRY to convince you to take him home but you must stay strong and resist. The SW's job is to find placement for your Dad in a VA facility. All this is mentally HARD for a caregiver under normal conditions but even more difficult when the caregiver has her OWN health conditions.

Stay strong and please come back and let us know how you're doing. We all care.

Stubbornness can cost you, your health and your sanity.

If you had a weary friend who told you, "He's angry, narcissistic, unreasonable, paranoid, picky, and no one understands that he's *always* been like this, but the dementia is not helping" what would you recommend for her to recapture the life that she was cheated out of? How long would you suggest she put off her happiness?

Please go visit some memory care places that accept VA and or Medicaid so that you can be your Dad's visitor and NOT his caretaker..............don't waste another precious day of your life.

As the share below here states (by help2day) take him to VA emergency and let them handle a placement for a vet who has no place to go. Take yourself OUT of the equation and set yourself free!

What you need is a elder attorney as soon as Possible they help with protecting disabled children and can Look into the deed of the house and if all the taxes have been paid . Thats what you really need they are Listed on this forum in your state . Go to social services and see if you can get a elder attorney or a low income attorney for persons with a disability . I Hope you are getting disability and Medicare ? This is very important for you to survive . Next I would find a social worker or Therapist to help you with your feelings . After that have the social worker help you with a support group - I was in a support group called The Savvy caregiver - it is a 6 week course and you go thru a hand book . You meet Once a week over Zoom and talk for a couple hours . Get some social workers in your corner . Try and take care of you first . Make sure you have food stamps and Medicaid . You are disabled . there are on line courses for care takers and end of Life concerns - Joan Halifax has free online courses at the Upaya center - it is a Buddhist center . Her friend another teacher Frank ostrowski has classes On caretaking , end of life at the Garrison Institute - these are free. You can call The Alzheimers association and at least talk to someone or join the Savvy caregiver group there they will send you the work book . Make one day for yourself - go for a walk on the beach or out to eat . Get yourself taken care of first . See if there are any holistic groups or meditation Places or go online and do meditation . Your In the right Place . Next after you get yourself sorted out and understand your housing situation - let him get that hernia operation and Look into VA Nursing Homes . the best ones are in San Diego . I think it will be time for Placement soon as your really Burnt out between your Mother and your Dad and No Family . Sometimes it takes time to get Placement so the sooner you will begin they will probably put you on a waitlist till a bed opens up. if he starts falling I have a feeling you won't be able to Pick him up . the next time he goes into the hospital speak with case management and a social worker and Have him
Placed in rehab . From there he can go into a VA Nursing home and you can get on with your life until hospice is needed . There are Millions of us going thru what you are . Alone , confused and doing Our best . Just be Logical - get the elder attorney , POA and health care proxy which can be done at a bank and the forms taken off the internet and Notarized in front of witnesses and him . Just say " Dad I Have to make sure the taxes and repairs are done on the house . " Then find a support group some where where people can be there for you . I wish you Luck Just be Logical and make yourself # 1 . Make sure in His will you get the house and not any of your relatives the elder attorney can help with that . Always protect yourself first - your life is important too .

hlp3916: It is imperative that you take care of your own health. Your father will have to opt for facility living. Please do not end your life by your own hand. Immediately reach out to 9-1-1 or a suicide hot line.

You are experiencing extreme burn out. You are caring for somebody who needs more than you can possibly give - alone. I can recommend 2 options:


Option 1 - Get more people involved in caring for your dad. You need "time off" from caring for him so you can take care of yourself... and to also have a life. Ask family, friends, members of your faith community, and hired help (use those VA benefits) to get help daily and for some weekends.

Option 2 - Allow the VA to place your father in a long term care residence. Dementia usually progresses and gets worse as the years roll on. If you are struggling now - and you are - it will become only worse to manage. Get him the professional help he needs so you can also take care of yourself.

Update: The deep clean is happening this Thursday or Friday. Once that's out of my mind & done with, I'm calling his/my social worker at the VA to discuss the VA nurse visits.

I did some research regarding nursing care/the house & me, and it turns out in NJ, they can't claim the house (if I choose to/need to place him outside the VA) if:

"if your daughter took care of you before you entered a residential home & has no other permanent residence, she may be able to avoid claim on the home after you die"
and "you may freely transfer your home without incurring a transfer penalty if:

- a child who is under the age of 21 or who is blind or disabled
- into the trust of a disabled individual under the age of 65
- a caretaker child who is defined as an applicant who lived in the house for two years prior to the applicants institutionalization and who during that period provided care that allowed the applicant to avoid a nursing home stay"

I again looked into adult daycares, but he makes too much money from his pension to be illegible. I'm looking into hiring hourly help from professionals. Right now, we've hired our cleaning lady whom we sold the car to to act as chaffeur to his appointments, and once things slow down, mine too.

Once my fathers prostate biopsy is done next month, I'm going to start making appointments for my own needs, and getting into contact with SSD to see if I'm illegible for more money/other benefits. I'm not entirely sure if my fathers pension will be taken into account for my income? Does anyone know anything about that? I don't work and his pension is through the VA so I'm unsure what they count as income as the SS office.

I need some advice/numbers of different people I can/should call.