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I'm a 28-year-old woman with cerebral palsy, caring for my 76-year-old father with prostate cancer, PTSD, & dementia. I'm from New Jersey. I'm getting help from the VA (he's a Vietnam Vet) for medical stuff, but I'm in tears every day & I have no other family. (The family I do have is estranged/drug addicts.)


I have a cleaning service that's come to clean out the house (dad's a hoarder) so that feels like a step in the right direction, but everything feels so stagnant & hopeless & I have my own things... I've been selectively mute my whole life and this past year I've done more talking than I've ever done before. I'm exhausted. I just want to be left alone for a while. This feels incredibly unfair, as I spent my childhood looking after my mother, and now my father. When can I possibly live properly? When I'm 50? When my CP & arthritis is too bad for me to do the things I could be doing now?


All of my own wants & needs are on a backburner that is the size of dozens of football fields. I don't trust him alone. Nursing home is not an option right now.


Most of my older family members have lived to 112 and they were smokers besides so I don't have a whole lot of hope.


My father went to visit my sister in Colorado last year & he came back to me worse than ever. I've been his CG ever since. He's angry, narcissistic, unreasonable, paranoid, picky, and no one understands that he's *always* been like this, but the dementia is not helping. My sister has washed her hands of our situation claiming "there's nothing I can do from here."


I just need to talk to people who understand. I'm running around like a crazy person, trying to balance everything & find a way to grab at pieces of happiness, but I've thought of suicide this year so many times.

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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
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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.
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Tynagh Mar 22, 2022
Wow. Hope you never need help or if you do, someone dumps you.
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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.
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hlp3916 Mar 20, 2022
I was told if he went into the care of the VA, I wouldn't lose my house. I am very afraid to lose my house if I go outside the VA. He gets 6K VA pension a month, the mortgage was paid off years ago, and right now bc of his 100% through the VA, I think that's the reason he has property tax freeze. Not sure as all that happened when I was teen & my mother was alive then. I don't know where I'd go if my house was sold. I'd be devastated. and we've just invested all this time cleaning & organzing it, and I'm looking into stair lifts for me.

He is living with me, yes, and his dog, which keeps him somewhat sane. they're both elderly, so it makes me get very overwhelmed on top of everything else.

He's very angry & defensive & combatitive during neurological exams, and has outright refused any pyschological help or sleep studies.

I replied above to someone else about some services I've found through the VA. Based on research I don't think he's elligible for a senior daycare (teh limit in NJ & PA for income is 4K, he makes 6K) and there's no room here for a live in CG. I just need some kind of 9-5 day care right now or something.
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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.
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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.
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hlp3916 Mar 20, 2022
what's Lifeline?
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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.
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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
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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.
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hlp3916 Mar 20, 2022
I talked to a social worker at the VA, and we both agreed that taking him from the home (he's been here 30+ years) away from his dog & his family home would make him worse, and as he's 100% service connected, mostly everything is free, and as soon as the big cleaning service is done this month, I'm elligible for nurse visits, but that's only a few hours. I was given notes on services for essientially elder babysitters, but some of these places are $25/hour, and even with my fathers VA pension, I have to wonder if that's affordable.

We have a bunch of appointments coming up, and as I sold my fathers car to the cleaning lady (she's been very kind, gave me a good rate for this incredibly large project, and her car was totaled plus shes giving us rides now) that's another good step, I suppose.

But the issue sometimes is is that my father gets incredibly entitled (thinks they should just "give" him his hernia surgery without examination, since "i'm 100%"), impatient (nothing gets done soon enough for him) & angry (threatened to leave me at the VA, claiming we were there for "hours" (it was 2) and we were waiting for transport chair to get to the entrance from another floor since he walks incredibly slow) or fussy (didn't want to do sleep clinic for his sleep issues bc last time he wanted to lay down he "hated their pillows") they won't give him sleep meds bc of his dementia, but he's so, so restless! He gets so angry with me that these things are a process.

I don't know if the VA has aides, they should. They have few hour nurses, and hospice care in Philly, but that's end of life.
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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.
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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.
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