Lots of tears, frustration, grief--yet thanks

[Pagesofwords]

Just wanted to say how exhausted I feel from all the mental and emotional energy I've had at times practically drained out of me the past four months since my sister was diagnosed with PSP. I can't believe how many tears there are to cry. She loves her children with all of her heart but does not seem able to reach out or connect. They avoid her and tell me she doesn't want to talk to them. I try to explain how it's the disease and I beg them to reach out to her. I find gentle ways to tell her to try to hug them. She falls more now. Every crash crushes me because 50 years ago I helped her learn to walk. She's my baby sister. I'm the big sister. I'm supposed to protect her. It is hard to know what to do at times, but I do know that I want to say thank you to all of you in this group. PSP is too hard to go alone. I thank God, my husband, my supportive friends, my church family, my therapist, and caregiver support group for being here with me--for caring, listening, and understanding. I wish a blessed Christmas to everyone. I pray for a miracle. And also for love, strength, patience, joy, peace, and ultimately healing.

[Kevin_1]

Hi Pagesofwords

I have just read post to my Liz who has PSP. Our hearts go out to you.

May I risk a little possibly unwanted 'not advice'.

It sounds like you have a lot of understanding about what is going on for you all. As you alluded, PSP flattens a persons personality and they stop initiating hugs and contact. However I wonder if her sons are, to a slight degree, are avoiding her in order to avoid the pain of loss they must be experiencing? All you can do is encourage them as you are doing.

Also as many on this site will tell you: Look after yourself. There can be no care if you are exhausted. Time off if you can. As much sleep as you can manage and anything else which makes you feel better in yourself.

PSP knocks hell out of carers on every front.

Waiving warmly to you and your sister

Kevin and Liz

[Pagesofwords in reply to Kevin_1]

Thank you, Kevin and Liz. I am carrying on. So is the family. A few more hugs are happening!

[am2015]

I know exactly how you feel, PSP slowly takes the very person that we love and cherish. My mother is in mid to late stage now, I cry everyday numerous times, you're right the tears don't stop. Everyone deals with terminal illness in a different way. Some of my siblings are detached because they cannot bear to watch our mother deteriorate. Grandchildren find it particularly hard, because they do not see the happy, loving grandmother that they adored. We all deal with terminal illness in our own way.

If there is a silver lining then it is that my mother no longer has the cognitive ability to understand what is happening to her. For the carers and loved ones that are there it is gut wrenching to say the least. It has destroyed me to the core, I sleep and then am ready to live the nightmare again. Look after yourself and make sure that there is someone you can talk to about your feelings, for me it's my husband and the reading the words of support from the wonderful people on this forum, it is cathartic. Take care. Xx

[Pagesofwords in reply to am2015]

Thank you, am2015. My silver lining is that we all were together yesterday and today and for the rest of the week. My sister turned 51 today and we had a lovely meal, cake, and a belated Christmas. And my niece hugged her mom!

[pzagy]

It seems that you are spearheading this alone, and I know the feeling of being the only one that accepts what is to come.

Your sisters children are still very young to understand and accept what is going on, one day their mom is fine and the next all hell breaks loose. My brother in law still thinks that my mother in law brought this disease on with her anxiety, not knowing anxiety is one of the symptoms.

The kids need their auntie to walk them through, they will get it, it will just take time. I could only imagine thier frustration and anger with PSP.

Sending you much love, patience and courage for this holiday season

[Pagesofwords in reply to pzagy]

Thank you pzagy. I walk and walk with those kids. I think they are understanding more, especially the 20-year-old. Without belief and trust in God's heaven through Christ Jesus, what would we have? My mother is 88, and I am so sad at how this hurts her. She is healthy and fit. My sister turned 51 today. We had a lovely time of it, a house full, my sister mostly resting all day and we made the noise and fun, the memories and the Scrabble board go: 17 people. Thank you for your love, patience, and courage.

[pzagy in reply to Pagesofwords]

Remember being young, or when our kids were little? How many times did we have to say things until they got it? How many falls happened until they got the hang of riding a bike? How many times do we tell them to tidy their room? How many times????????

I feel for your mom, WOW 88 andstill going strong. God bless her

Parties for whatever reason are always great, enjoy the good times treasure them always

[abirke]

Your words pow, are beautiful. I am sorry your nieces and nephews don't understand their mama's conditions. it's hard not to take it personal. Get them to CurePSP.org.....If nothing else get them to this site and let them talk to us....we have been in their shoes...."how dare my mom, husband; sister; brother; act that way toward me......" It may also be their excuse to be in denial of her situation or their responsibility.....at any rate you might want to let it go once you have given them enough information.....It sounds harsh and I'm not sure I mean it. But I know you have got to take care of yourself emotionally and spending all you've got on her kids refusal can be devastating....

Take care of yourself . You love your sister. focus on that and what you can do for her with what you have/ I'm so tired I am sleep typing / So please forgive typos and words I may not mean tomorrow. I do have a daughter who is weary of PSP and cannot /does not do much for her daddy. She loves him but is afraid of his demise. He has a temp of 101.5 Hes never been sick......except when he needed his appendix out... 27 years ago....I m not sure how to handle this....goodnight thank you for your beautiful words

AVB

[Pagesofwords in reply to abirke]

Thank you, abirke. How old is your daughter? My 20-year-old nephew has come closer to what this disease means for his mom and family. The 17-year-old is struggling and afraid to know. I was so happy to see her hug her mom tonight. It's her mother's birthday. She turned 51. God bless you and your family. Thank you for thinking of me.