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.
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!
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.
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.
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.
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.
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.
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.
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 you choose to continue caring for him at home, insist that your sister contribute toward his care as well. She'll balk, of course, but I'd give her only two options: either contribute financially or you'll send him back for her to take care of him. And stand your ground!!!!!
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.
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.
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.
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.
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.
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!
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 .
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.
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.