I’m at my wits end...funny I thought I was there 8 months ago.
Dad in AL 15 months and on hospice for past 8 months. He’s 96 and has CHF and CKD. I took care of dad 11 years prior to AL, just because I cared. Now I’m sick and tired, literally not figuratively. I’ve resorted to silencing dad’s calls knowing if there’s an emergency the AL will call. Example: 8:30 pm dad calls, bring something for my lips now! (I had been there earlier). I said no. He said then find a pharmacy that delivers. I said lip balm? ...and no! He gets very sick then better, very sick then better... over and over. I’m the only child taking care of him and not looking for the discussion on siblings, they suck. Dad purposely pitted my son against me by saying he could have $50k when all of his money is in an irrevocable trust. Of course I’m the trustee. I told my son that money is for dad’s living expenses and care. Not to mention executing his will. So now now my son and family are not speaking to me. No Happy Birthday. No Happy Mother’s Day. Very sad. Everyone questions the things I do, all in dad’s best interest and by the letter of the law. As trustee, I can be criminally prosecuted for mismanaging his money. Get tons of unwanted advise. My friends have disappeared... and the life I knew along with it. My husband tolerates me. I cry a lot reminiscing about my old life. My doctor says I don’t handle stress well. Actually, I’d like to see any of my family or friends do what I do... does anyone else ever wonder what keeps their parent here. Why do they fight death? He’s supposedly a Christian. What’s he afraid of? He asks am I dying? Don’t let me die. WTH??? I’m having a hard time looking at him. (Lot of guilt with those thoughts) Did I mention I miss my friends and my life? Somehow God sees to it that I keep on going. I think, once dad’s passed I’m probably going to get some horrible disease and I will have never had a life since my kids moved out. I want to have a life. I want to see my grandkids. I want to travel. How did everything get so F’d up just by taking care of dad?
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I admire your ability to stick to your guns and do the right thing for your dad. Your dad sounds like a very spoiled brat. My dad was like that, my mom waited on him hand and foot. He went first, which was a blessing to me, as he'd been just like your dad - expecting me to provide him with whatever he wanted whenever he wanted it.
I'm sorry your son is so blinded by money and doesn't understand the requirements of the law. Hang in there, you're doing the right thing. Continue to maintain strong boundaries with dad - he won't like it, but tough. My dad could get my mom to do anything, but he knew he couldn't mess with me. He'd been a Master Sergeant and was used to having people jump when he said jump. I'd tell him "no" and he'd get a little smile on his face because he knew he couldn't play me. I was just as strong-willed as he was. So hang in there! {{{Hugs}}}
People who are not directly involved in the care always seem to have an unsolicited opinion...instead of having a helping hand...so just ignore them...you don't need them in your life. It's hard, but we need to come to terms with that. You are doing the best you can by yourself!
My mother is 65, has a degenerative condition that has significantly progressed in the last 10 years to the point of only being able to transfer from wheelchair to recliner or bed. I understand your feelings of frustration of "where did my life go?", I have the feelings of "what's my life going to be like?". I have 5 yr old and I don't want to miss out on travels or school events because of caregiving. I want him to have a happy life filled with good childhood memories. Unfortunately I don't know the prognosis of her disease...but I know about the help that is provided. I had a bit of anxiety attacks not long ago because I didn't know how to "live life" in this new role...but I see light at the end of the tunnel...there are options.
You mention your dad is Christian, has a priest gone to talk to him, maybe one that could visit him at least once a week or so?
You can still travel, you are not done yet, you still have a life...stay healthy, take care of yourself and go live life!
I know that if he were in a NH he could press his call button, ask for lip balm, and they'd get something for his lips. That is probably not a usual service in an AL, but you might suggest that he try that approach when he needs something when you are not there.
You will get to have a life. Start practicing for it right now. Let the AL and Hospice take full responsibility for your Dad and take a few days off. (They are only to call you if he seems to be actively dying.) Tell him you are going to be gone for a few days and won't be taking phone calls. Perhaps have a little get-away with your "tolerant" husband. Call a friend who seems to have disappeared and set up a time to meet for coffee or lunch or whatever you used to do with them. Think of what your life used to be like and pick out something you can begin doing on a small scale until you can reclaim your life more completely.
While this whole situation has me more stressed than I ever imagined, my friendships have me baffled. When things got really bad with dad 8 months ago, I made a point to not dominate conversations with my problems. They would ask and I’d tell them what’s going on and we’d move on to other topics. But the calls and texts have stopped. I tried for a while to keep up but got so overwhelmed that I didn’t even know how to start a conversation. Months go by. I’ve always been there for them. I don’t get it. Friendships from the 80’s. I really miss them and have told them. It’s like I have nowhere and no one to run to for an escape. Like I’m an island... alone. Really at the end of my rope.
It is a difficult life, but not permanent. I will keep you in my prayers and hang in there.
It was a relief when my dad passed, only because of what alzhiemers had done to him. But then his death created a list of things still to be done. Decisions to make. Phone calls. Driving here and there. Changing all bank account to my moms ss#.
My mother still living but in same boat as dad (Alz) And now eventually will see mom go thru same slow demise. Once she passes,(And it's already seems like this long journey) My responsibilities going to probably stretch for another year. Closing estate. Cleaning out AL room. Doing taxes. Planning funeral Paying last bills I'm sure there's more I can't even think. Even writing her obit and taking it down to newspaper people. I feel bad talking about it. Like I'm complainting. But I have to be prepared. Idk it just seems literally a TON of stuff to do when you are in charge of someone else's life.
This completely sucks but *it* *will* *end*.
Oh! - How I love that "you don't handle stress well" comment. Bit like saying to someone who's washed up ship-wrecked on the beach after a hurricane "hmm, not much of a swimmer, are you..?"
So apparently I’m suppose to do everything. I’m there 3-4 times a week. Dad still calls me to say he’s lonely. I’ve told his friends and our family to call and go visit because I cannot do it all. Their help last for a day or two then they get to get on with their lives. So I tell dad to get out if his room. Go to some activities. But I guess if he did that he’d have nothing to bitch about. So I don’t take his calls and he freaks out and calls every few minutes, over and over. Then he’ll start calling my husband when he can’t reach me. I tell him to ask my sister or his friends to bring him things... like lip balm, but he won’t bother them. So I get furious with his friends and my family and find myself jealous of their free time. Apparently the only down time I get is when I puking my guts out... which is getting more frequent. I’m mad at dad for the way he treats me and the way he talks to me. My sister visits and he’s all sickeningly sweet. My brother only calls (out of state) and dad forgives his inattentiveness. I am so sick of it all. So I take a few days off and it’s to catch up on my affairs, cleaning, laundry, bills. So it’s just a few days of not seeing him. It’s not recuperative. Even the few times I can get to the beach or the river, as soon as I’m back so is the stress level. Or the best part of getting away is dad doing everything in his power to prevent me from leaving. Or he calls with problems while I’m gone. He doesn’t call my sister or his friends. He wants to make sure I know that he’s miserable and I shouldn’t get a break. So getting away is like it never even happened. I hate the feelings I have towards him because I know he will not live forever but probably just long enough to kill me first. If there was someone else in my life that treated me like this, I’d be gone. I’d be so done with it all. And that’s exactly what I fantasize about... walking away. Here comes the guilt again because I know the only way I get to walk away is when he passes. It all sucks so freaking bad and I’m mad all the time. All the time!
Feeling mad all the time can be part of clinical depression. A counselor can help determine if that is the case and come up with a treatment plan.
Your life is worthwhile. It is every bit as worthwhile as your father's. Every bit!! You are valuable. You matter. Don't lose site of that while you are trying to take responsibility for your father's happiness. Work on your happiness! Get some professional help with that if needed.
I’m in the same boat, taking care of my loved one. Feels like my life has disappeared at times. But remeber, this too shall pass.
Take a walk, get a massage, do something for yourself! You’re mental and physical health is #1