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I have an older sister in her mid fifites, dx'ed with Parkinson's 11 years ago. She still can drive (although I am beginning to question whether she should) but has not been able to work for some time. She has to go South in winter as the low sunlight and cold aggravate her pain so much. She has not worked for many years.
In the warmer months she lives with my mother in a beautiful home. My mother can be critical and impatient and my sister hates living there. She was very independent before her illness.
My mother hired someone a few hours a week to prepare all my sister's food- it must be blended and put though a sieve. She has medication, massages and acupuncture. She has a vehicle. My mother has set up a trust for my sister and what my sister's tiny disability check and medicare don't cover, my mother does. My sister is worsening and needs more care. She is very negative and complains constantly. She has good days where her old self- warm, loving, emotionally smart and generous, comes back for a few hours.
I an unemployed, have a special needs son and I am a single parent. My son had a very rough time, in and out of school. Sometimes he did well and I could work. More often he needed so much advocacy that it was a full time job. He is doing very well recently (except his girlfriend has very serious mental illness and we had to take her to the ER last week- I left the ER as my son and the girl's mother were there.) He is leaving for college in September which is a triumph. I dreamed of having a period when my son no longer needed me so much and my sister did not yet need me much. This is not to be.
A very long story: my mother fell, was in the hospital for four days and was released to rehab, where she has been for a week. I spent 25 of the first 32 hours she was in the hospital with her. I live a little over an hour away, and I visit her several times a week. I was spending some nights at my mom's until things became hard with my sister.
My Mom is doing great, and should be home in a week or two. There were some issues with the nursing home, but a close friend who used to work there told us how to handle it and things have been going well. My mom keeps telling me she's fine and to take care of myself and do less for her. My sister keeps pushing me to do more and more for my mother and for her, and when I set boundaries, tell her I have appointments or set limits, or go away for a day or two, she gets critical, confrontational, rigid, and even downright mean.
I have set up a beautiful care network. Friends and neighbors are visiting my mom often and her spirits are high. My cousin had helped a great deal. I hired someone new to help my sister ten more hours a week, in addition to the food prep, so I could focus on my Mom. On Sunday, my sister, after I met with the fellow I hired, (who is a dear family friend, calm, and used to be a nurse) flipped, screaming and yelling at me both about the past that I have not been there for her. (I have done some things for her, but many times could not help as I was taking care of my son and also had some bouts off serious health problems myself. I largely have had to deal with my health issues alone. At times when I have helped my sister with researching, say, where to get a medical test in her winter home, she canceled the appointments I made, after it took me a whole day to do the research. She has medical phobia sometimes- I even offered to fly down and take her to the appointment! I offer to take her to the doctor, and she says she can't go, she is too tired. She calls me two days before a medical appointment and asks me to take her. I usually am not free on such short notice.)
The ten days after my mom's fall I did 8 loads of my sister's laundry, most of her handwash, cooked her rice, wiped counters, washed dishes, twice when she called and said she was exhausted took over everything for my mom- well you get the picture...the list goes on. I neglected myself and my son over my mother and sister. Now that I have put my son and me back in the equation, my sister is furious.
She actually said "You help mom, but you don't help me!" My sister berated me, yelled, swore, and her dog bit me. It did not break the skin, but left two painful bruises.
Am I REALLY expected to help her if she acts this way? How can I do so and remain whole and sane? She no longer wants me to be her primary caregiver, and I feel I am her scapegoat and that she is emotionally abusive and that it would be unhealthy for both of us. But there really is not another person to do it after my mom is gone, unless my sister's boyfriend steps up. They have been together for 8 years and he sees her once or twice a week- I can't expect that to change. I told my sister not to yell at me, when she had calmed down, and she said I deserve it. She never apologizes for losing her temper, nor has she apologized for the dog biting me.
She says she is exhausted, and asks me to take over, but as soon as she has had a day or two of rest, accuses me of trying to take over and shut her out. I told her I try to include her in decisions but many times she is asleep or at a medical appointment. These are decisions like whether to buy a new hamper...not important stuff. I get her feelings of terror and loss of control. I have got lots of help for my mom and have told my sister time and time again just to visit mom, not do stuff for her, so she does not exhaust herself.
Yesterday we talked on the phone and she was still annoyed and critical. I have a medical appointment today and I am going to traffic court with my son tomorrow and I said my cell phone would be off at those two places and she kept insisting I leave it on and acting like I had refused to help at all when I was just trying to discuss what days I should come down. She told me the schedule- come this day, come this day, we don't need you that day- and was angry that I hoped to hear each others' schedule and put the schedule in place together.
To add to this, my sister said if I ever put her in a place like the rehab my mom is in she wants to go to Oregon and do assisted suicide. (The rehab is clean, pretty, and the staff are really pleasant, the PT and OT are excellent- it is just the food is mediocre and they can't get special diets right and they are understaffed and you sometimes have to wait for a commode or medicine an hour unless the elder calls the family and the family calls the nurses station. Also there are elders there who do not have visitors and are desperately needy, and that is hard to see. It is not perfect-but it is not horrible, either.
I have had severe illnesses of long duration and I NEVER acted like this, but then, I had adequate dopamine. I try to remind myself that is the root of all this.
I am pretty much planning to be there for my sister and mom as much as they need while continuing to pull back enough to take care of myself, my home (which is a hot mess) and my son, take night classes in the fall to upgrade my job skills, and (God willing) go back to work FT around Christmas time. My mom has had to support me because of my son's issues and my health, which has improved enough that I feel I can work.
Since my family is so unhealthy right now, I'll "spin" this. Not that I should have to justify it to them! Since the economy tanked my mom has gone from moderate wealth to middle of the middle class. her taxes have skyrocketed, and she cannot possibly support both herself, my sister and me and we are using up her resources at an alarming pace and need to preserve them so we can take care of my mother and sister. (I have a brother, who also lives there, but he works and commutes 80 hours a week. He does pay bills and do paperwork when my mom is sick. He does not help my sister at all.) But of course, working would also restore my dignity, free up capital for my sister's care, and preserve my sanity.
My mom is in denial- says my sister always was picky, always worried, always had a bad temper- all true, but things are way, way worse emotioanlly. I feel I should talk to my sister's neurologist but that will only deepen my sister's distrust of me and increase her anger towards me.
I am trying to find the time to go to al-anon (my family act like dry alcoholics during crises) and get back into therapy.
Thanks for reading this. My heart just aches. I want to do right by my sister, but the nature of the disease make it very, very hard.
You are wise to recognize co-dependent behavior. You don't have to be from a family who has drinking problems to have co-dependency issues.|
My dad tended to be "difficult". This got worse with the PD. He cussed out a cousin of mine who tried to help him. He would go off on me as well. Because I had dealt with my mom's controlling issues and dad before, I had learned some tools that helped me.
First, when dad went off on me, I would calmly say "I guess you aren't in a good mood today so I'll leave and visit you later. I would calmly walk out the door. Usually by the next day he had gotten over his "fit" or he realized that throwing a "fit" wasn't going to result in anything but my leaving so the fits didn't happen very often because he never got a payout from throwing one.
If your sister makes statements like "I'll just go to Oregon"...don't react. Stay calm and say "you'll have to do what you think best" and change subjects. Don't let her push your buttons. Don't give her the payoff.
If she yells about what all she wants you to do, stay calm and firm and say "this is what I can do--would you like for me to do it--or leave?" If she keeps it up, tell her you will see her tomorrow.
You can't be controlled unless you give her that control.
Do what you think is right and spend your time accordingly. Ignore guilt trips and verbal coercion. Remember your mother, your sister and your son are responsible for themselves. The only person you are responsible for is you.
Good luck and hang in there.
I just want to second every word WitsEnd just said. I totally agree.|
You draw the line and make it stay there. And don't feel guilty. As soon as they, and you, realize the power you have, they will stop taking you for granted.
|Ditto! It is called tough love. As a patient, I usually need a healthy dose from my caretaker at least weekly. it's all part of the program. I never was a cranky old codger until PD, but that is no longer the case. Do your best in attempting to cope!BoB C|
|Ditto, witsend and everyone, very true and great advice... I have one question, though, how can you really practice tough love when your loved one has dementia (we're not there yet, just thinking of some of us)? Does it still work?|
Once dementia sets in its a different ballgame. Often times it is best to go with the flow. For instance, dad thought he had some pills in his hands. He kept swatting at the dog to keep away (actually he was rather mean about it and it was a dog he loved dearly). I tried to convince him he didn't have any pills. Didn't work. Somebody else walked up and said, give me the pills honey. He poured what was in his hand (nothing) into her hand and was satisfied. (The dog went home with me after that because I was afraid he would hurt her.) He still kept swatting and yelling at her after she wasn't there.|
The care home where dad was at had mailboxes, door knockers, etc. on the side of the wall in the hallway so residents who became fixated could go check their mail, knock on the door, etc. Playing into the hallucination is helpful.
Dad moved things, threw the tv on the floor, etc. If you asked him what he was doing he was "taking inventory" (he hated doing that when he was working); preparing for the flood (there was something about rain on tv that week); moving to a new apartment (reliving an old life). Generally it was best to let him do whatever provided he was confined to one room and didn't hurt himself when he got this way. When he came back around you could straighten things back up. Frustrating, but if the meds don't work, not much you can do except tie him down.
Confining to one room consisted of a half door with the bottom door having a bolt on it. You could still see in--and him out--but when he was in one of his states he couldn't figure out how to throw the bolt on the bottom half of the door to leave.
His behavior actually got calmer as the disease progressed....but that was because he had a hard time talking and being mobile a lot of the time.
Keep the faith though. Some patients don't get dementia. Maybe yours will be one of the lucky ones.
Thanks for the support. Thanks, witsend, for the practical solutions to try. I worry (and turn the channel in my head to flowers, kittens and chocolate) that this is the beginning of dementia. She is paranoid. Time will tell- no need to get ahead of where things are.
Love the facility with mailboxes and doorbells! That's actually sweet and pretty funny. Must be noisy, though.
Well, my son is visiting his GF, and the house is blissfully quiet..birds singing outside...I am going to go enjoy it.
As previously stated, you're living in the midst of some major co-dependency. I recognize it because I live in a very similar world. It's more than a daily struggle to stand my ground and not get drawn into the drama of my mom, sister and brother. I admit I don't always succeed because I'm so stressed and worn down most of the time. Standing your ground feels more stressful than giving in. When I decided I'd had enough I sought counseling. My counselor warned me that change wouldn't happen overnight and that my family would try to buck, manipulate, threaten and do whatever to push my buttons. Boy, was she right! I haven't reached the point where I'm able to always respond calmly so I often have to simply remove myself from the situation. My sister preaches that we have to work together but refuses to plan ahead. She raves that we have to communicate but her definition of communication is for her to talk while the other person listens. She wants to control everything and make unilateral decisions without telling anyone else then turns around and complains that she has to do everything. She and my mom use me as a threat against one another. Most days are pretty much living hell.
I have reached the point where I recognize I can't control anyone except myself and I don't have to explain myself to anyone. I'm no more responsible for my mom's care than the next person in spite of the fact that the rest of the family takes the attitude that I'll have to do it all if they don't help.
I also am the single mother of a son. I've been pushing him extremely hard recently to grow up and stand on his own two feet. I'm not responsible for him either. He still has a ways to go with the growing up but is dependable and helpful most of the time.
In my opinion, you need to address your own issues (as it sounds like you're planning to do) so you don't have to depend on your mom for financial support. You can't be responsible for your sister or her actions. I agree that you can offer your help but if that isn't agreeable with your sister let her figure things out.
I hope I don't sound too harsh. I certainly don't mean to. Your situation pushes lots of my buttons because it sounds so familiar. I offer my advice with the best of intentions.
Hope you enjoyed your quiet time and things will level off for you very soon.
I'm sorry you situation is so dire and I am glad you are taking care of yourself. My sister is right that I "took over" but first, she asked me to, and second, I was trying to be as efficient as possible with limited energy*, and third, I was projecting. |
I asked my son's GF's Mom, L, how she would feel if someone hired a person to help them ten hours a week (my sister has been saying she needs more help for months- this was not imposed on her) and set up a system for their laundry and offered to buy a special hamper for hand wash and delicates. L said she would kiss their feet!!! I would not even keep wearing delicates if I was dependent on other people- and I am a junior fashoinista- but that is another story.
Basically my mom feels so badly for my sister she spends absurd amounts of money preserving my sister's freedom as long as possible- it has been clear for a long, long time that I would someday be the bad guy, telling my sister to stop doing things because she will go through her trust too quickly. I am realizing I don't have to take on this role- we can get the head of the trust to do this. I do want to check that there is someone very financially savvy on the trust. I think the trustee is a close friend of my sister's (one of her few friends left) who may not have financial acumen and may baby my sister.
You know, maybe once a year my sister says "we are really lucky we have Mom. We are really lucky we have the money for x." She rarely looks at what she has and what can still do. Last summer she was in a deep state of acceptance and grace- she could have been on Oprah! That was an easier time.
I beg to differ a bit, though. My son has three special needs diagnoses. I brought him in to the world. I feel when his issues become too severe it is my obligation to step in. I don't feel this is co-dependence, but compassion. It was and is also my job to teach him to be independent- and my ex and I gently pushed him to learn to navigate the subway, drive, handle money (my son is brilliant and very competent, but on a bad day cognitively or emotionally he can barely tie his shoes) and he is far more together and accomplished than many special needs folks his age. Most people cannot tell he has special needs.
My son told me that if not for me, he would have dropped out, and that if he had dropped out, he would probably left home (at 16) and might be on the street or dead. Now he might have gotten an entry level job at a car repair place and gotten a room and his GED and been fine too. But that is not the most likely outcome. I would rather be tired and accused of sometimes being codependent than have a dead son.
He got in all 4 of the colleges he applied to. He needed a ton of help with those applications, but the art, grades, SAT scores and essays that got him in were all his own.
Ironically, he is in love with a lovely girl with serious mental illness and he is starting to caretake for her some and he is struggling with whether he wants to be in a relationship that involves caretaking! Talk about karma!
With a child with special needs, it is a balancing act of shoring them up, helping them access services, and withdrawing and letting them make their own mistakes and successes so they learn. You do less and less as they grow up, and set more and more boundaries, but may need to step in if they blow apart. Except in the areas of house work and cooking (I taught him to cook and all he does right now is frozen stuff and boiled eggs) he is doing well. There are times he leans on me, times I am there for him to lean on, and other times I say- I have to sleep, or do this, or that. He might accept this or get mad, whatever, I have to take care of myself.
If someone wants to call this codependent, sobeit. Parenting a special needs child is very complex and I think we have a pretty healthy relationship. To me, my moral obligation to my sister is different because I did not bring her into the world. In a way she did my a favor by blowing up and debasing me Sunday when I had been so good to her the week before.
Something snapped inside me- a tie to her- and I knew, I have to take care of myself. It is not my job, and never has been, to take care of my sister. I can choose to help her, but it needs to be a choice, not something imposed on me or that I am emotionally blackmailed into doing.
Paranoia is a part of PD but not necessarily hallucinations or full blown dementia. Some older people without PD become more fearful and paranoid. My mom heard about older people falling and breaking their hips and she was afraid of falls. My dad had a bad experience with one of the PD drugs. After that, he refused to take any PD meds and was suspicious anytime a new looking pill came his way. (BTW when I took over he got the PD meds--but just wasn't told what they were. ) When dad went into full blown dementia he refused to take any pills at times and that's when the applesauce came in. He would hide them, throw them and cuss out the person who handed them to him.
Anyway, down the PD road there's lots of bumps. Don't borrow tomorrow's troubles. You have enough to deal with today. It doesn't sound like she has any significant degree of dementia right now so take each day as it comes.
Ironically the AA serenity prayer often was a help....
Lord help me change the things I can,
Accept the things I can't,
And the give me the wisdom to know the difference.
When things got really bad, I prayed that a lot.
Your sister's behavior is a part of the disease that you can't change. Accept it and manage it....but don't internalize it. It's hard not to....but when dad was really bad I thought of him as another person and not my dad. I pretended I was a nurse or teacher handling someone's basic needs. I did my best to "turn off" that part of me that wanted to break down and cry. I saved those moments for myself as much as I could and then I always asked myself if I had done something wrong--and if I hadn't I let it go.
Another thing I would think is what did Dad do? I did a thousand times more for my dad than he ever did for his parents. Maybe he could have done more--but he worked full time. Guess what? So did I. Wow, I managed to work fulltime and still go to the store, buy things for him, talk to the doctors, spend time with him, take his dog to the vet, solve his financial problems,--etc., etc., I added up all the positive things I had done out of love and kindness and I realized no matter how bad I felt about what I heard or what I didn't get done....I wasn't really such a bad person after all. I beat myself up and felt guilty for the things I didn't do or couldn't do....but I really did my best and tried to be a good daughter. I had to just keep reminding myself of that whenever things got tough. Your best is all you can do.
Hang in there and enjoy your quiet time.