I've been taking care of my dad since I was 12. He's a quadriplegic and I am now 30. He has six kids including me. He is way too much to take care of for most people because his level of care is so high. He has ran the other kids to the point of exhaustion and they started neglecting him and taking his money. That's why I have him by myself now. Going on 4 years with this new arrangement. He never told his kids thank you. He never told us we were doing a good job or even encouraged us to have our own lives. Our teenage years were robbed from us. Young adulthood also taken. He raised us to be his personal slaves. He never says thank you. Why?
I've met paralyzed folks who are grateful to be alive and who go out to work every day.
Does your dad have cognitive impairments in additional to his quadraplegia?
"When we need care, we have to trust that the other is willing to act in our behalf—yet it is always possible that they will not. If I can escape acknowledging the legitimacy of the other’s needs because I take my own as more pressing, I can avoid recognizing the caregiver as a subject with a will independent of mine, a will I must depend upon. The caregiver’s agency is no more than an agency in the service of my will. Thus I can deceive myself into believing that I am not the dependent; instead the other is, since my will controls her actions: without my will she can’t act. "
It's a matter of pride, and a matter of control. If he can convince himself and you that you have no choice, then he stays in control, and doesn't have to feel the weakness of someone who is dependent on another for help, or the fear that maybe that person might stop helping, or stop helping as much as he wants. The author of the article views this as a moral failure, rather than a personality trait. I think parents fall prey to it more than most people because they're accustomed to being in control of us, as we started out completely dependent on them. It's easy for them to continue or resume this control later in life when we're adults and they need help.
Your father needs care. He has treated all his caregivers rather badly and burned all of you out. At this point, he really shouldn't be receiving family care.
Your father definitely needs a caseworker / care coordinator. This is usually either an advanced practitioner nurse or a social worker. You can hire one privately, but they are expensive. You are in a difficult situation and change needs to happen NOW. Most elder care coordinators provide consultation services--that is, for a fee, you can meet with one for 90 minutes and review your father's situation with that person. You can then pick the brains of the elder care coordinator, such as, where can you turn for help and how to get him Medicaid.
Have you talked to his primary care physician about this? He needs care and, because of bad behavior and mistreating relatives, he has burned out his family caregivers. Unless he has signed a release, it's limited as to what information your father's PCP can give you. However, this person needs to know what is going on. Your father's PCP might be able to put you in touch with a caseworker and begin the process of getting him non-family care from a home health care agency.
If he is old enough to be considered a senior citizen (in my state that's 55), I would contact your Council for the Aging or nearby Senior Center. Council for the Agings or Senior Centers generally do have at least one social worker on staff. These are generally traditional social workers (and not psychotherapists), whose job is to help elders and their families connect with service providers within the community, so that the elder can remain at home. If your father lives in a rural / semi-rural area, it might be difficult to find out who does this. I would try calling your state's Elder Affairs office and have them put you in touch with the local organization that handles this sort of problem. If you are a member, or a regular member of a faith community, I would ask someone in leadership. Most good religious leaders are quite knowledgable when it comes to where to turn when someone in your family needs more care than you can provide. Also, if you really don't know where to turn for information and help, consider calling your elected officials, especially your state senator or representative and talk to their constituent services representative. Many times, they know where to turn and know how to cut through the bureaucracy.
You really should read the book _Stop Walking on Eggshells: Taking Your LIfe Back When Someone You Care About Has Borderline Personality Disorder_, by Paul S Mason, MS and Randi Kreger. Many, many people who are have relatives who are personality disordered, who are abusive and who have burned out caregivers find this book very useful. This book talks a lot about setting reasonable limits and caring for yourself.
Since this has been going on since you were 12, I would *strongly* recommend that you receive high quality mental health services. A lot is changing in mental health, because it's becoming more informed by the work done by cognitive neuroscientists. At this time, you would want someone who is trained to work with people with mental health problems that arise from caring for a relative with a personality disorder who has abused family. You want someone who has specific training geared to working with child abuse survivors. Also, make it clear that you want the focus of your work together to deal with problems in the here and now, and not from the past (you don't want insight oriented therapy or long-term therapy right now...) I would favor someone who takes more of a cognitive-behavioral approach, who will help you while you and your father are going through major transitions. It's likely you're going to be doing a lot of work learning about boundaries and limit setting.
Your father is probably going to need some big doses of tough love. He's not going to like it that he's no longer going to get family caregiving and that it's going to cost money. Depending on how nasty / bad behaved he is, he might have to go into some sort of care facility. He won't like the idea of seeing a psychiatrist or getting behavioral medicine--and that's tough. You might have to call Adult Protective Services on his behalf especially if he's abusive to his home health aides / workers--and he's not going to like this at all.
I was in a nasty situation. My doctor had me get a consultation from a elder care coordinator, who is an advanced practitioner nurse who oversaw an geriatric psychiatry unit in a brand-name mental hospital. I picked her brains for 90 minutes. It was not cheap, but she helped me develop a game plan. She gave me an overview of what to expect--and recommended that I not provide any sort of hands-on care to my severely personality disordered parents. She told me how to create an elder care resources binder and to keep it updated, so I knew who to call when I got 'the call'. She recommended that we set-up a family meeting to discuss elder care, but my parents and brother always found convenient excuses to escape / cancel it. This was telling. With my permission, she gave her assessment of my elder care situation to my doctor--which was helpful. I am no contact with my functioning sociopath brother and very low contact with my severely personality disordered mother--and it's for the best.
How do I know these things? Been there, done that. I can assure you that things will get better for you... they did for me.
DoN
You posted some other questions on here--ones that many of us have taken time to address.
You have a small family, and a super demanding father whom you allow to run roughshod over you---I don't know why. (Why he does is, why you take it) Human interractions never cease to amaze me.
You have done FAR MORE than any child should have to do for a parent--yet you continue to take care of this mean, unappreciative man. Detach? He needs to leave. I know how cruel that sounds, but sometimes, actually, often times, that is the answer.
Have you looked into placing dad in a NH where all his needs can be met? It sounds like his personality disorder is pretty squarely laid on you. Your kids will see it and may likely mimic him. You want that negativity coming from both generations?
I KNOW people say "Oh, but your parents cared for you for XX many years, you OWE them." I personally believe you owe them respect and love and a safe clean place to live, but you do NOT need to live your life for them.
Your posts break my heart. Perhaps, it's as if you finally are "Seeing" your father as the person he is. Talk therapy may be helpful in guiding YOU to a sense of calm, it won't change him one bit.
I'm sure you have been an excellent caregiver---and dad doesn't care. Only now that my mother is sliding into dementia does she say thank you with any real meaning. It is what it is. Your dad will use you use, wear out and complain all the way to the NH what a lousy daughter you are/were. I hope you aren't hanging on to keeping him home so you can finally have some "justice", or "closure". We do not always get that.
Good luck.
w/mult.sclerosis in 1987. Our son was 3, dau 6 mos.
We've been married 38 yrs. The times he's said
thanks, please or sorry I could count on one hand
and have three fingers left over. Many times I
considered leaving but it's too late now. He would
expect the kids to dance to his tune 24/7. My kids
missed out on a lot as kids and deserve to make
their adult lives less stressful. Nothing is ever
done right, micromanages everything. We have an
aide who comes three hrs three am a week. Bit
of time to get groceries and errands done. Fortunatelyy
finances are good....he's just frugal (cheap, lol)
It is difficult for both of us. I have my own health
issues and just cannot deliver the quality of care
required.
Some small verbal recognition would be so greatly
appreciated. Some people just are not able to
say thanks, sorry or please. I'm glad I've raised my
Children to be different.
Expect nothing and you won't be disappointed. Sigh!
caregiving for a very long time. Get on with your life
and treat yourself with kindness and respect!!
Seek counseling for self esteem and seek family counseling with your husband and children who undoubtedly are traumatized by what they have seen and heard between you and your father.
Your father is a toxic parent. Period. Your problem is not that he is an ungrateful SOB but rather that you lack self esteem. And I recall you writing that you and your husband want more children.
remidied get some therapy for yourself. You seem
to be "the responsible one, the caregiver and fixer".
If you are not married you need to be able to avoid
choosing a partner who needs you to fix and care
for them all the time. If you are married I hope
you get the support and simple kindness you do
deserve. We all do, but don't a lot of the time.v
Hopping down from my soap box. Good Luck!!
You have a such a good heart. I know you are doing all you can for your dad. I'm so sorry he hasn't shown you any acknowledgement for your efforts to care for him. I hear you.
My dad passed away almost 11 months ago. And since my dad passed I asked myself the same question, why didn't my dad ever say a simple thank you, or I know you are doing your best for me. Without that simple acknowledgement it does lead to a lot of anger and resentment.
You are young woman. I feel like its not fair for you to carry all the responsibility. Given your dad's level of care, I wonder if you will consider assisted living or nursing home. Maybe consider talking to social worker and see what resources are available in the community.
I never knew if it was just the way my dad grew up. Or a failure on my part to not be more honest with my dad. I wished now I had said to my dad "am I not good enough?" or "it would really help me, if you said please and thank you." Maybe it would have sounded silly, but in hindsight I wish I learned how to communicate better with him.