It's taken me a long time to come to writing this post. I'm still not sure how to feel and it changes from day to day, moment to moment. My mother is dying from PSP and I feel helpless.
She is on the other side of the country in a nursing home and I am just settling into being a mother of two (four months post partum). I have lived away from my mother for the last 10 years.
Our past relationship was not an easy one. She was diagnosed right before my first daughter was born two years ago. We've been to visit as many times as financially possible. She has now met both my daughter's and I'm glad.
I can't communicate with her any longer as she can't speak well at all, her vision is nearly gone, and she won't answer her phone. I occasionally get to Skype with her when someone visits her in hospice.
I feel so much guilt for being so far away and only being able to be with her when money allows. I'm an only child. My family lives within a drive of my mother yet they won't visit. She was a smart, charming and friendly woman but she was also toxic and damaged all of her relationships, family and otherwise.
I don't really know what I'm searching for on this group. Perhaps advice from someone who has had to see a loved one slowly pass away from afar. Or maybe comfort, letting me know I'm doing all I can. Even honesty, telling me I should be doing more.
It's very difficult to drop years of hurt and anger for someone who didn't treat your relationship well. I have, yet now that I'm a mother, and have things to say, ask, and share with her, she's too sick to communicate with effectively.
I have a feeling I may carry some of this guilt for long after she's gone.
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Callunas
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Considering the distance between the two of you, in my opinion you're doing what you can. You've travelled to be with her, she's gotten to see her granddaughters and you try to communicate via Skype when possible.
She's in hospice so hopefully she is getting decent care. Even if you were there you couldn't slow the progression down. Try not to beat yourself up over the situation, just take it day by day.
Ron
You came to the right place to start to talk about this. It’s a difficult situation. There may be no resolution immediately. It sounds like you have made the effort to do what you could with what time and money you had. Your mother created the relationships she has. Families are always strange from my own experience and other people’s descriptions I’ve heard of theirs. I think you have done the best with what you had to work with. Try not to beat yourself up over it.
Hi, life is never easy regardless what it throws at you. Life with PSP is almost impossible. The only advice I can give is, there is only one person you have to live with, that is the one in the mirror every morning. Only she can tell you what is right or wrong for you. Listen to her!!!
I am so sorry for your situation. Although not the same problems my Mum had a form of dementia don't know what and she ended up going to live with my sister in Australia. She left hating me though I used to be her favorite. She accused us of stealing from her abusing her etc. We didn't have a very loving relationship growing up and we got on much better after I got married (that's when I was the favorite). However she still harbored these feelings later. I knew it wasn't her fault but it still hurt. When I said goodbye to her at the airport she just looked away. I never saw her again. She died 2 years later in a Nursing Home in Australia and I always felt I didnt get closure. Next time you go to see her maybe for the last time, talk to her. She can hear you. If you feel comfortable with it tell her you love her regardless of all the problems you had. She may be able to communicate a little. Don't beat yourself up about it. You have your life, you are doing what you can. I still now and then wish I had the opportunity one last time to talk to her and tell her how I felt before she died but I didn't. Maybe you can feel you get closure. xxxx
Hi, I also feel guilty that I can't be there all the time and I am lucky enough to live close to my Mum which means that I can see her often. However she is also dying of PSP and there is still very little I can do. My Dad is her primary carer and because he is in a wheelchair she has carers in several times during the day. I can see her and take her to hospital appointments, but when I was younger I did what, they as parents, wanted me to; left home and got my own life. So even though I am geographically near them I have a husband, children, dogs, house to run, other commitments and we run a business. Having had children, I don't want them to grow up so I have carers on hand for when I get old, I want them to do their own thing, so you essentially are doing what you should be doing!
As your mum can hear, but can't or won't answer the phone, maybe you could phone the nursing home and ask for their assistance with the phone calls, maybe they could help in someway?
Enjoy your time with your babies, it only seems the other day I had babies and now the eldest is almost 18 and the youngest, 15, later in the year. They still need me and yours need you, that is your most important role at the moment and don't feel guilty about something you can't change. Julie
Just adding a few thoughts to the excellent replies you have had.
These are only ideas for you to consider some will fit others not.
There are two things at play here. Your mother passing in peace and you surviving without overwhelming guilt and remorse.
You love your Mum. Love is something we don't have much choice about once it is established. However she seems to have caused you great pain and possibly even anger. You are in a real double bind. I would suggest that in simple old fashioned parlance you might simply need to find a space in yourself where you accept her for who she is and find forgiveness for her. It took me ten years to find that for my 'hateful' grandmother. The only way to get to this point that I know of is to find some understanding of why she was like she was.
Here are some ideas which might explain why your mother is like she is... Just ideas. As you read them you might get a strong reaction. I'm not asking you to find sympathy for her just a few ideas to consider in time.
People are not naturally horrible, so often its the pain within them which can at times (or often) come bursting through with flare ups of anger often closely followed by tears. There can also be a destructiveness to relationships caused by a deep sense of not being worthwhile. On top of that sometimes there can be a lot of fear from feeling very exposed in relationships and from formative years of hurt and pain. Folk like this carry what some folk call an excessive 'pain body'. A mass of pain inside which can comes bursting through because it becomes overwhelming, uncontainable. People who are like this often feel huge amounts of guilt and remorse and the only way they can cope is to push others away. For them loneliness and feelings of remorse are better than another episode followed by more pain and more remorse.
So where does that leave you both now?
Perhaps for now you need to lower the bar for yourself. Non of us can ever be the ideal son or daughter and parents have their warts as well. We can get to many 'I should do this, a good daughter would." The 'must' and 'should' words can cloud our vision if what really is and that might be that things are not repairable at this time.
Your Mum possibly only needs to hear that you love her and that she is forgiven. Hearing that might lead her to be horrible, because it might be quite frightening because it may be the thing she has needed to hear all of her life. But those simple words may well be a bright beacon for her for the rest of her days. You will not be able to undo the deep hurts she carries. However reaching out with some healing words for her might be a singular thing which will in turn give you self forgiveness in time. Remorse and guilt can only exist when there is a lack of self forgiveness.
It's unlikely you will spend the rest of your days filled with guilt. One day you will find that you will understand it all and then you will be able to let it go as something which just was. Something which was the result of many circumstances.
Kevin, those words truly moved me, right from the heart and so much truth, thank you. xxx ps I have had an easy ride family wise, not the conflict that some families suffer but I still feel their pain. Don't know why I feel so moved by this but Ben had quite a difficult childhood so guess it was trying to understand him that made me appreciate other folk with difficult pasts.
What can I say, such a sad tale of family conflict that needs to be 'put to bed' no matter how hard it seems. Much better to make your peace with each other than carry toxic thoughts that get you nowhere. I come from a family the exact opposite, where conflict is never an option and sometimes think that there are times when pure honesty should rule but that is never the case, don't truly know which is best! I hope that you can resolve issues and get on with what is really important.
Forgiveness brings peace. Dwell on today, what your mother needs from you now. All of us will depart this life one day. Think about how you would want your own family to behave towards you in your final years, months, days and hours. She is your mother, a creature of the almighty. Give her succor, and your time, the most precious of things in this world. Best wishes.
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I'm so angry at PSP.
Fed up and guilty 
Frustration at no communication
PSP and sweating
PSP Caregiver
