PSP Association
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Did it really happen???

Hi All

It has been a while since I have posted, I have been trying to get on with life and come to the realization that my mother in law is not here. Her end was so unexpected and fast that it didn't give any of us any time to process.

The week of her passing flew by, visits from family and friends and getting all the arrangements done kept our minds off it.

We had booked a vacation a month before her passing, we still gave my husband and I the chance to catch our breath and talk. Most times we would listen to the song we chose which played during the viewing.

We are almost 2 months since her passing and I cannot describe what I am feeling, I am not sad, angry or mad....I am confused. Confused that I cannot visit her, confused at how she became so sick without warning, confused because the woman I visited for past few years was not the woman I once knew.

I am almost empty, I visit her grave (not too often as I do not believe she is there, I think she is around us) I look at her picture and don't remember most of what has transpired for the past 2 years. I don't remember most of the days leading up to the burial, it is a fog. Of course there was family drama, we are Italian, member of the family being upset that they were not in the receiving which I yelled "I would gladly trade places with you!" People offering help, to them I felt like yelling "where have you been for the past 2 years when Laura needed you!!!! I don't need your help now!!!

I am angry that SHE got sick, I am angry that CBD exists but most of all I am angry she is not here.

I also feel guilt, guilty because before she received her diagnosis, I though she was faking it to get attention, guilty because I didn't visit her the day she died when she asked me to....the reason I didn't go was not because of her or because I didn't want to, it was a family issue....and I let that get to me....I will live forever with that guilt.

Her condo is being rented, all her stuff has been donated or put into storage ant physical trace of her is gone, all I have are memories, heIr life before CBD is starting to come back, 27 years is a long time to know someone.

I pray for everyone here, I haven't been able to write because I wanted to remove myself from anything to do with CBD/PSP...I don't mean to sound harsh I truly appreciate the love I have received in the past 3 months since I met you all, but I needed space to process.

Thank You

9 Replies

Hey Paola, It's been a solid month more me.....I feel slowly like I am still being drained....There's a site here, "Bereavement Care and Share" haven't been there much; not sure I can console those who lost their cat in the way I can those who lost a human family member....not trying to make less their real feelings, just finding this site still good for me. Anyway I too am feeling what you are feeling...I find I have not really cried....not for more than a minute or two. I'ts wreaking havoc on my bp which has sky rocketed......I sit listening to music all day, frozen ....I went to Arizona to visit B's parents.....we hardly talked about Bruce . well his mom and I had one good talk no crying just a good conversation though I don't think neither one of us could tap into our feelings....her husband, (Bruces dad) has dementia and he is healthier than Bruce was a year ago! I am lost ....and broke and most likely won't get his insurance .....and worried about his parents and the pot smokin- semi schizophrenic brother who's taking care of them....and now me and my old lady is it so easy for me to lose my faith or just not rely on it when I see prayers answered daily know what I mean? faith replaced so easily by guilt and worry .

So ok, you and I did the best we could.....I was lying right next to my husband when he took his last breath and my proximity did not change his outcome.....nor did your proximity upon your mother in laws death.....I keep walking around saying "B had 2 more years...." he was diagnosed in '13 and should have had at least 6 years of Psp after diagnosis....but really would I have wanted him to suffer any longer ..... God forbid....It still comforts me though to know one truth and that is that my husband is with the Lord, heaven bound.....He wasn't a Bible banger ; but he knew it like the back of his hand, and had faith like I knew no other, he was quiet and strong friendly but not overly outgoing you asked him a question,,,,he'd probably knew the answer.....I so miss that ,,,,,even up to the two weeks prior to his death, I would still ask questions like what movie did that actor do,,,,what president was happening in this year; what's your social security number again......hahah even in his horribly slurred speech he knew the answer....God bless him....

I do hope you and I get through this grieving process alive ....we will... we've got to have faith and drop the's not going to change the outcome! Do well ( a phrase Bruce started using when saying goodbye to someone.....) my kids and I are thinking of tattooing "Do Well" on our wrists so that when we wave at someone or shake hands they will read that salutation...I hate tattoo's....hahah maybe I should get this verse tattooed on me since I so easily forget it....

Do Well


Do Not Worry

25 “Therefore I tell you, do not worry about your life, what you will eat or what you will drink,[a] or about your body, what you will wear. Is not life more than food, and the body more than clothing? 26 Look at the birds of the air; they neither sow nor reap nor gather into barns, and yet your heavenly Father feeds them. Are you not of more value than they? 27 And can any of you by worrying add a single hour to your span of life? 28 And why do you worry about clothing? Consider the lilies of the field, how they grow; they neither toil nor spin, 29 yet I tell you, even Solomon in all his glory was not clothed like one of these. 30 But if God so clothes the grass of the field, which is alive today and tomorrow is thrown into the oven, will he not much more clothe you—you of little faith? 31 Therefore do not worry, saying, ‘What will we eat?’ or ‘What will we drink?’ or ‘What will we wear?’ 32 For it is the Gentiles who strive for all these things; and indeed your heavenly Father knows that you need all these things. 33 But strive first for the kingdom of God[c] and his[d] righteousness, and all these things will be given to you as well.

34 “So do not worry about tomorrow, for tomorrow will bring worries of its own. Today’s trouble is enough for today. Matthew 5:25-34


You put my life and feelings into words, it's not like I haven't greived I did that for a year since CBD took everything from her. I don't know what I am feelling, last night her nephews wife had a baby and about an hour after my phone rang, I actually thought it was her calling to tell me. That happens a lot to me since she passed.

The tattoo sounds like a brilliant idea, I have a few and love every one of them. We have the strip from the hospital of her last heart beats, my daughter want to tattoo it on her wrist too, great minds think alike I am all for it.

Go on, move on, and never forget the past like the passage your wrote says "so do not worry about tomorrow, for tomorrow willb ring worries of its own, Todays trouble is enough for today",

I alos believe that when one passes, we have to let them go and realize they are with our savior. I believe their soul is not at rest until we do so. Bruce had a strong faith so he is at peace now and it you owe it t yourself and Bruce to be at peace as well



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Hi to both of you ladies. I feel similar things and though councilling helps by letting me talk it does not fill the hole left.

My wife died in January. I am still angry, confused and lonely. My life drifts on I am good at putting on a good show so most of my family and friends think I am moving on. My son who I think is having similar issues to me took me for a week in the Canary Islands last week we both relaxed and enjoyed the sun, but could not get round to discussing how we felt about our loss (typical men, probably). I have resisted happy pills my Dr wants to prescribe as I think I need to live through the grief without drugs.

My 98 yr old mother-in-law has told me the feeling is natural and will pass but she still has bad days nearly 50 yr after losing her husband. Losing her eldest daughter has hit her hard but she says she has compartmented her grief so she can continue to function, I think it may be she has lost so many friends recently that she had to learn to live on. I only hope her stoicism is correct and my grief will mellow in the medium term.

Best wishes to both of you and all who have lost soul mates or family members to PSP or CBD. Tim


Hi, Tim,

How I dislike the concept of " moving on ". People mean well but it all makes it seem a set process.

It is like PSP. There is no pattern. Like walking on the fells. We conquer one hill and find a whole range ahead. The first year brings a series of "first times " to be managed.

I know for me I already feel I have grieved so many losses of my love but Chris is still here. I know that won't mean I'm half way along the path. I dread the emptiness that awaits.

I hope you continue with the counselling. They can't give you any answers but means they are there to share your journey and hold your hand.

I'm sure you are doing all you can.

Love from Jean xx


Hi Tim

Try journaling, write all your feeling on paper, pour out your heart and feelings. Much like we do here but more personal, more emotional. Write to your son, you may not give him the letter but you released what is bottled up inside.

I was taught that my a dear friend years ago, she was 'special' and had many gifts she helped me through a very difficult time in my life. It worked but it took me a while to pour everything out but once the tap is open you will be amazed at how relieved you will be


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Nice to hear from you again Paola. I think everyone goes through those emotions... has similar thoughts. Don't beat yourself up, it was a difficult battle for all of you... your mother-in-law has earned her wings.xx


Hi daddyt

The emotions are there, and I am surprised that I cnnot process them fully. I amthe type of person that has to understand what is going on and how to fix it.

My mother in law picked a verse to be written on her tombstone, loosely translated it says "do not cry for me as I am blessed with God" I am taking her advice.

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Blessings and hugs xx


Bless you we are all thinking of you I'm sure. Sending you big hugs 🤗

Tillyhugs xxx

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