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Hi, my father is 57 with a spinal cord injury. He lives outside of town in a rental. He has one morning aide. My youngest brother (23) and i have tried for the last several years to help. I work during the day and go out to my dads at night to cook dinner and help him to bed. i did this for 3 years and wore out. Nothing is good enough. There are tons of house things to do and he needs exercise but i'm too tired to do it. I also write the checks for him and his mom for the last 3 years. I stopped going out last year. Gave him notice and went back to school at night. I suggested for 3 years of hiring somebody. He gets state funds for home health aides, has one for the morning but then uses the $ for other things instead of hiring a night person. He tells me he doesn't have the energy to interview or write an ad. I told him i'd help, but still no. His van is falling apart that has the lift in it, but he wants to buy a motor home instead. He thinks i'm selfish for having a life. I go out about once a week for a visit and to help do a few small things. His mom - my gma - up until 2 months ago - he was helping so i was helping too fill out all her medicare paperwork and pay bills. She passed and now he wants to sue the doctors. So he puts himself to bed at night and doesn't complain but i can see its taking its toll. He can make all his own decision so i feel frustrated that i can't do anything to change things b/c he's able minded. I'm been in therapy for a year now. I'm getting better boundries, but it hurts when i know he's suffering. I make suggestions - but overall he doesn't want to change - just wants my brother and i to do what he wants.

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I am really sorry, tough situation...I have a mom with Cancer, in a nursing home, temporarily in her mind, and still wants me there all hours my kids are in school. Gets on me because SHE thinks my kids should be completely self sufficient and keeps reminding me of all she "did for me". I had to set boundaries reminding her that SHE choose to have me. I do the best I can.
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Sorry to hear your situation; I hope your therapy is helping. Not much you can do since he is of sound mind and chooses to make "bad decisions" regarding use of his aid funds. You should continue to suggest he hire more in home help as well as some outside help. For example; you and your brother may go as as a united front and meet with him and say "here are the things we see you need help with at the house/car"..."Dad, how about we pick 2-3 things on this list and I'll make arrangements to get them done; you pay". Then give it a little time (couple weeks) and approach him about home care and getting a companian care. Ask if he'll agree to have someone come in 2 afternoons a week for 30 days and then you'll re-evaluate. You should jointly decide what this person will do -- cook meals (including maybe preparing enough for 2-3 extra meals so you don't have to worry about coming over) -- something he can reheat in microwave or on the stove. Have her take him out on errands during the time she is there; maybe do laundry or some light housekeeping during her time. If it were me; I'd tell him my job or other is going to keep me very busy over the next 2 months and you need him to get some help in during that time. Set boundaries and agree to what days/evenings you will visit and stick with it. Maybe only one evening per week and 4 hours on a Sat or Sunday and thats it. Hope this helps. I think when parents get ill; they get insecure and only want us because they are most familiar with us and really don't want to "work at" getting used to someone else or depending on someone else. My experience is that they are better behaved and more cooperative with someone else. Getting outside help would help you and he have more quality time together to do fun things vs. just toiling to meet his needs. It will be better for both of you mentally and I hope he can see your side.
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"it hurts when I know he's suffering" is the phrase you wrote that you need to talk about with your therapist. Being empathic is a good thing; being enmeshed is not; we all need to figure out the difference. Loving your dad is a good thing; being manipulated by him is not. Being in a loving relationship between a father and an adult child is a good thing... but is his behavior loving towards you? You need to know that there are grownups with severe disabilities or illnesses who do not act this way: they do everything in their power to take care of themselves, they are supportive and excited to see their children do well in independent lives. That makes it a joy for their children to help them, and they are grateful and positive about the help they get. This exists. It has not been your experience, and the other people who write in on this forum write in because they're struggling with a difficult situation so it doesn't get described here very often. So you have very good reason to fall into the trap of thinking that this is just the way it is with an injured parent and it's your job to deal with it. No, it is your JOB to grow into a healthier perspective on relationships. For one thing it is actually no great favor to your dad to support those of his behaviors that are immature in him. And the world needs you to be one more healthy whole person, who is giving and thoughtful and empathic and also strong and clear and not-enmeshed in an unhealthy dynamic. Figure this stuff out now, and everything you do going forward in your life, including all your relationships, will be healthier and happier, affecting everyone you encounter for the rest of your life. THAT's what the world needs from you.
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Not sure if this will help you, but everyone, including my mother reminds me to "put the oxygen mask on myself first" before helping others. You know they tell you to do that when you are on an airplane, because you can't help anyone if you become sick too. Also, lists are my savior. Making lists, particularly at night before going to bed helps me to know what needs to get done and keeps me on track. The list helps me to keep the conversation with my mom on track, it helps me to remind her of the things she agreed to do. She wanted to get cable tv set up in her room. I ordered the box and we set up the cable, but she needs to call the company to get it turned on. It was on my list so I called her this morning and her reaction was to say, you're right I need to make that call.... Yaaa! My mom is not eating, she is cranky sometimes and I just want to be a good daughter, but I'm struggling with the same things you are and I find that as time slips by, my lists keep me on track to move forward productively for myself and for my mom.

One other thought I had... which my mom brought up... while she was a good mom to me, she was not a good daughter to her parents. As a matter of fact, neither she nor my dad did anything to help their parents. Three of their parents lived into their late 90's! Yet neither my mom nor my dad ever went out of their way to visit them more often than on major holidays and not all holidays. They went on with their lives and made sure we were OK. So, my question to you... do you have your own family and your brother? Are you getting out there to find a good life's partner to build a loving and long term family situation for yourself? As the AlwaysLearning said... take care of yourself for your long life going forward. My heart goes out to you. I know it's hard and hope we all, in this situation can always make small strides in the right direction every day. At the end of time we will have a huge pile of small good things all stacked up surrounding us with goodness! Have a wonderful day!!
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I've made lists. I found meals on wheels. I've looked up organizations. Said i'd pay for things. But no he doesn't want that. meals on wheels he says doesn't have good food. I have said ok you tell me what the ad needs to say and i'll help you list it and interview. Nope he doesn't have the energy. But he does have the energy to try and bring a lawsuit against the doctors he feels let his mom down who died. I've bought things for his office to try and get things organized. He doesn't like them. I tell him i will organize it and clean it - he doesn't want to get rid of things. wants to go thru each pile one slip of paper of a time. He has files over 20 years. I've bought exercise things to put on the doors. He says he appriciates my thoughts but only really wants to do it his way. I've learned i can care about him but not be sucked down with him. I have a healthy relationship with my fiance and he's been so helpful. I want to have a life. I helped my mom raise my youngest brother. $ and time. i dont' regrett it. But i've got her now going through the empty nest and making very little $ she wants me all the time. I'm 34 and have never married or had children of my own. I plan on getting married now to a wonderful man and i think that is how normal people move forward to have a life. Yes help others but not cripple thier love ones. thanks!
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Just want to add, from all you've shared you are such a good person. You are smart and sweet and caring. I can not imagine how frustrating it must be to be in your situation and when I feel like throwing my hands up in the air and screaming, knowing your journey is so similar to mine in many ways helps, and I'm inspired to try to be nicer myself by all the things you've tried!
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You have tried to help your father as best you can. If he is stubborn you need to continue to do what you can and what he will allow you to do. If he wants things differently --so do you --tell him you wish he was a healthy 57 but neither of you can change what is---is. He may have his shortcomings but he did something right to have a daughter as caring as you are. Many many fathers would love to have a concerned daughter in their lives, he needs to reflect on the blessing he does have which is you.
Good luck, I will pray that your father gets the gift of a bit of insight.

Elizabeth
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thank you thank you. It feels like a hug coming here! Thanks for taking the time to write your thoughts and support. I try to see i'm a good daughter. My dad does thank me for things and i know he appriciates what i do - its just that its never enough and no matter what plan i come up with i'm hit with he just doesn't want to do that. I respect its his life and choices. I don't think my ideas are the only way - but it helps when someone meets you half way.
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and i helped for the last 3 years till my grandma (his mom) passed. I paid her bills and filled out her medicare and assistance paperwork. I talked with her medicaid case worker and even got her low energy assistance. she was greatful and i'm glad i was able to help. i try to juggle but i'm only one person.
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Smilebeth, You really are amazing. You have helped your family so much! I just had another completely disruptive day with my mom and even though I cancelled time with my son, he's young and she won't be here much longer... and I guess that's just the way it goes. I know the decisions we are making to help the helpless are the right decisions and hearing about all you are doing give me more strength to continue helping ... You are amazing!!
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Smilebeth: I agree with Sooozi , you are amazing as a caregiver. Try to find some time for yourself, get enough sleep and eat well. Remember if you get sick your father will be up a tree as you are providing him such special and loving care. In a nice way, remind him that if you go down, he does too. He already knows that down deep. My father used to tell me to get some sleep and then clamp during the night to wake me up to help him. Again he needed the help but he wanted me to get a full night's sleep--his heart was in the right place--but he was in his 90's and just needed help. Can't say I found a great balance but I napped when he napped even though there were lots of things on my caregiver "to do list".

Taking care of yourself is taking care of your dad. Don't feel guilty you're doing a good job. I will keep you in my prayers.

Elizabeth
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I dont' see myself as amazing but thank you!! I have always thought that family is what makes the world a better place to be in. The other part i have to learn is boundries b/c your wants matter too. I'm sorry you had another disruptive day with your mom. I'm sorry for your hurt and frustration. Sending a HUG! I have so much more respect and understand what caregiving means. Take care of you too! Hope you get lots of good time with your son too!
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