I woke up this morning with a sense of new knowledge that I need to accept the people in my family the way they are in regard to my sister with PSP. I want her husband and children to act differently toward her. I want them to clearly be angry at PSP and not at her for having it. But, do I really "know best" what they really feel or believe or how they should act? Maybe my response to my sister's PSP is to put demands on others that they change and be more like me--grieving openly and trying to fix things. My new sense is that I need to be more patient and accept that the place where the family is right now is where they are and it's OK. They are in a sort of emotional safety zone--I am not in that zone. Seeming indifference is a protection from pain. The 16-year-old asks me why I cry so much--she does not see her mom's condition as a big deal or understand why it should affect my life. I think she says this to protect herself from reality. I was in a similar emotional safety zone early on in my sister's illness, three years ago when no one knew what was wrong. I was angry and feeling impatient that she was not well and I was judging that it was her own fault. I also felt she was shutting me out and giving up on life. In the past year I moved into the compassion zone and since May of this year I moved into the fighting zone, actively trying to get answers from her MDs for her illness. Since her PSP diagnosis in August, I am in the raw pain zone and wanting to fix things zone. I cry every day. I want counseling in their home for the family. I have to let go of my prescriptions for their life though. This is the new realization I woke up with today. When it is time for them to act differently, then they will.
Need to accept others as they are - PSP Association
That is brilliant, pages. Just right, I think. Good for you.
I have always been in fighting mode, but S' children, especially one, have been in the denial and give up phase, wanting to put him in a wheelchair, a good year BEFORE diagnosis.
What is actually going on in their heads? I don't know, anymore than you do, with your family. None of us know what happens behind closed doors.
So yes, you are right, they have to cope with your sister, in the only way they can, that's their way. Whether it's right or wrong, in your eyes, or mine with S's family, it's the way it is. If you ever discover how to live with that, let me know, I am just as angry with mine, as you are!!!
Lots of love
Everyone, deals with things in life differently and your sister's family are dealing with her illness as they should....in their own way.
They may be trying to make the best of the life that they have with your sister and to some people that is to not dwell on the illness and to take every day as it comes.
I have found that is the best way for me to cope with caring for my husband.
I don't get angry because that just pulls me down to a place that I do not want to be.
Maybe you should take a little step back and carry on with your life but be there for support.
Thank you, DenB, for writing to me and for your insights. My husband and my pastor both have advised me, as you have, to take a step back and carry on with my life and be there for support. I've been trying to do this, but it seems I don't have anything without my sister being healthy and without her family being how they used to be. I can't seem to take care of myself and my home. My husband does the cooking and a lot of laundry as well as work full-time. I do sort of "come to life" on Tuesdays because I'm taking a class that day and have to be prepared and get my homework done. I work from home so it's mainly me and the dog and cats. I need to exercise but I can't seem to push myself. I feel that I am a dull person because I have PSP on my mind so much of the time. Thanks for listening to me.
Wow...that was a beautiful read.....I so agree that maybe where people are is where they need to be. I certainly know I cannot fix people. I also recommend that you get counselling, not only for yourself but for your nieces (and nephews?) Not that you can fix them but you can be there for them in a way that would be successful, healing, life affirming. A 16 year old already dismisses mom as "whatever". few children can immerse themselves in their parents emotional and or physical needs. But it will hit them and when it does , you will be there in a supportive loving non critical manner. You have a long tow ahead not dragging judgement along with you will be alot easier on you, your sister and her family. God bless you. Infact remember God as you sort this stuff out and how to help . His guidance can comfort you when you reach out.....
Thank you, abirke. I have started individual counseling and have encouraged my niece and nephew several times to do so. My sister told me the 16-year-old now has a therapist (but I am to pretend I don't know this because the 16-year-old hasn't told me). My sister has been seeing a therapist herself for many years. I have to somehow stop coming across as judgmental or critical toward my family. I need to be accepting of where they all are. That's my challenge. I do believe in God and ask for help. God gives me tears and shoulders to lean on. I would rather have my sister well. I am going to a caregiver support group this afternoon and think I will ask about how to be more accepting of others where they are.
Amen sister. I wonder if you could provide 16 year old therapist with info about PSP or that mom is in a progressive state...daughter might not fully understand what mom has to be able to relate that to dr. But again the less you tread maybe, the better.....Good luck to you . Your family is so lucky to have you . How is the husband , does he have a therapist.....not only does he have issues but he has issues none of you all have, if you know what I mean....IThe husband needs a support group just for male caregivers...again where to stop treading and let things be....though giving him some info as to where to go can't be all that bad.....where I am , I have not found any support groups for caregivers though you guys really are as far as I have looked....I think there is one for Parkinsons...I think for me I just get pissed off and more sorry for myself to see these fine people dealing with the mildness of Parkinsons as opposed to it's nasty evil cousin PSP!!!! Keep doing what you are doing and God Speed
I think my approach is going to be letting the family have some breathing space for now. I have spent a lot of time suggesting things and trying to help. I need to back off. At my caregiver support group this afternoon I listened to some people who are husband caregivers. It gave me more respect and empathy for my brother-in-law.
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