PSP Association
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My beautiful momma is gone

Just gonn let everyone know that this wicked disease has won again!! It took the most precious, loving ,caring, beautiful, gift from me Sunday sep 16. This horrid disease cheated my mom out of her life!! You can probably tell I am not dealing with this very well.. I am extremely angry!! I did not want my poor sweet momma to suffer, but she suffered for 4 yrs because of psp ,that is 4 years too many!! She was the matriarch of our whole family since my dad passed in 2009. And we all needed her!! Why? Why? She did not deserve this!! I'm sorry I know this is a support group, but I'm telling it like it is!!! I've never felt so helpless in my life!! I've never witnessed anything so terrible!! Why? My mom weighed 68 lb when she passed !! Is this even humane? I am done with this psp bs.. I hope I never here of it again!! Good luck to you all., your gonna need it!!

Alli

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Dear Alli

I’m so very sorry to hear about your dear Mom. What your feeling is absolutely normal and to be angry too is completely normal.

I agree with you that Psp is the most wicked illness and we all hate it with a vengeance!

Nothing I can say will make you feel any better, but just know we are all here for you.

Sending you much love and strength for the future.

X

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I totally agree wth you. PSP claimed a wonderful man, husband, father, grandfather, stepfather and stepgrandfather, nearly 20 months, 20 days and a few hours ago, but who's counting. I undestand your anger, mine has faded a bit towards PSP, but still extremely bitter against the medical profession that let him down so, so badly. They never gave him any care, not even the basics, like manage his bowels. Our loved ones were already fighting the most evil illness known to man, yet the ones who had it in their power, to at least make him comfortable, refused!

For yourself, May i suggest a trip to a counsellor. I saw one for months during Steve's journey. It certainly helped get rid of a lot of my anger. I know anger is part and parcel of the grief process, but please don't let it eat you up. Your Mum will want you to remember her before PSP took over. That's going to be hard, but with help you will get there.

Sending big hug and much love

Lots of love

Anne

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Your advice is spot on Heady! I love how you continue to be here for everyone! Do remember we are ALL still here for you darling x

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Thank you Amanda, I do know that, which is why I am still here. We all need each, no matter what part of the journey we are on.

Lots of love

Anne

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Still with you Heady. Each day is a struggle and no one understands but we PSP widows

Cuttercat

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Lots of love and hugs Alli. It is very normal to feel angry and it is so good to express it rather than bottle it up. It is all so unfair. Just try and hang on to the fact that she is no longer suffering and that her body is now at peace. I know that eventually your memories will not be of the last 4 years but will go back to happy days and times. Love AliBee xx

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You have my condolences. The loss of a loved one is a terrible thing. I hope with time you'll remember the good moments you two had and not what the disease caused you to go through.

Ron

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How very sad. I completely understand your anger and frustration. It just isn't fair but no one said life is fair. My husband didn't get to live out our plans and dreams, and it has shattered me.

What is helpful to me is this site, counselling, bereavement group and I have appt this morning with my minister. I'm grabbing on to anything I can to get through this.

Don't let this disease beat you also. We are here for you whenever you want.

Hugs and understanding,

Liz. 💔

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So sorry for your loss xxx

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I am so sorry! Don't know what to say. We are not so far in 3-4 years but I see the gradual decline and sometimes wish he would be taken way overnight just because I know what is coming in our future. Feel so bad feeling like this, but it is the truth. I love him but don't want to see him the way he is going to be!!!! xxxxx

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A perfectly understandable and common feeling amongst all of us caregivers, daffodil: if we dont have, and can not have any hope for a cure, of course we want our loved ones to be spared as soon as possible - all the while desperately wanting to keep them in our lives!

The contradiction is so exhausting for us...

XXX. Anne G.

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Daffodil we are 4 years in but I think W had it for about 18 months before diagnosis. Like you I feel the same sometimes and guilty for doing so. But W was so fit and active and loved life until PSP came and put an end to that. I dread what lies ahead for him, and selfishly for me too.

Sending you love and best wishes Nanny857xx

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I am so sorry, Alli. It's horrible. Today is my two-month anniversary of losing my lovely little sister to PSP at the age of 52. It's really hard to go through the death after all the suffering that preceded it. It's a new kind of grief that you feel. Hold close to your family. I am trying to find a grief support group. My grief after two months is focused on past traumatic episodes of my sister's suffering. Evidently I didn't feel enough pain and anger then, it's like I have to relive it. I will pray for you, Alli. Try to remember happy moments and let yourself cry as you need to. Your mom will always love you.

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So sorry for your loss

Love Tippy

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Sorry for your loss....we are currently at the latter stages with my Dad and I know what you are going through is coming our way very soon..... I watch this site and its a very supportive network so vent away there will always be someone here to listen....love to you and your family ❤️ Xx

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You be angry. Let it all out no doubt you have had to be strong for so long. I am at the begining of our journey with my FIL I have no clue how things will play out but I know none of it will be fun. So you have every right to be angry and hurt. Let it out get it out exhaust it. Then take time for you. Rebuild your reserves and fill your heart back up with love. So sorry for your loss. Xxxx

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Really sorry for your loss. Yes this disease is the pits and it is soul destroying watching a close relative suffer and nothing you can do. I was told yesterday we can only gave three pads a day supplied by the NHS so yet mire funds to find. Hope you can in time remember all the good times Pauline x

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I totally understand. We said you wouldn't put an animal through it. So very very sad. My heart goes out to you. I miss my twin sister everyday x

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So sorry for your loss Alli.

I understand your anger. I feel it when I see the destruction psp causes, not only to the patient but all those around too.

Rest assured your mum is pain free now and is all around you. She wouldn't want you to be sad.

Take care and be good to yourself.

It's your time now.

Big hugs

Sue x

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Psp certainly is up there with the real baddies, seeing someone have to endure all that it throws at them is almost too much to bear for the people who have to stand and watch helplessly. I am still reliving all of the horrors of psp, it is 4months now since Ben lost the fight and I'm struggling to find much joy in life despite my outward appearance. I would like him to be here with me but not the PSp, I would wish that on nobody. I know he welcomed death to release him from its grip, I hope your mum felt the same.

Sending lots of warm love

Kate xxx

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Alli,

My heart goes out to you and your family. Nothing we can say will explain or repair the damage caused by this awful disease, but know that you are not alone and as shown by the previous responses, you are cared for. We are bound together by a common chord of despise for this disease, and have been blessed by the words of encouragement from the wonderful people here. I hope you are as well.

Prayers of peace and comfort,

Bobby

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Hi Alli. Know exactly where you are. PSP took my darling Valerie in March and since then , although I have tried to be positive, I have been angry, sad , lonely , hopeless , - even suicidal at first. I found it impossible to remember her in any way other than the last 6 years of suffering.

But this week it has all changed. I found an old videotape from 20 years ago when we had a wonderful holiday in New England and at the back was footage of our Ruby Wedding Anniversary party. I've had it converted to dvd and playing it is like having her back with me again. Her smiles , her laughter , her voice is wonderful to see and hear and I can now remember her as I need to. It seems to have lifted a load from my shoulders.

It will be difficult Alli for the first few weeks and months but I hope like me you can get to the stage where you can remember the good times more than the bad.

Sending all my love hope. Bryan

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Dear Alli, I too, understand how you feel. I was one of my Dad's fulltime caretakers for 2 years before he passed last year. I know what you mean about the horrible, sad memories. The PSP was SO SO bad. I don't think I realized at the time the affect it was having on me because I had to be strong, for Daddy. Once he was gone I didn't have to keep up the façade. I miss him so much. He was strong, of great character

and just a remarkable man for his entire life. Try to be strong Alli, do it FOR your precious Mom because it's what she'd want for you and she'd want it in the WORST kind of way. I know this because your deep love for her speaks volumes. You'll be in my prayers, ~Sheila

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I am so sorry for your loss. PSP is such a vile disease.

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So sorry for your loss Alli.

Love and light,

M

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So sorry for your loss yes it is the most wicked and cruealist disease I have ever seen trey and remember the better times that you had together

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Dear Alli, I am very sorry for your loss.

Your mom did not deserve this fate. There is not answer to "why" yet: but she had something very special to help her get through, and that is You.

You have every right to be angry. I agree with Heady that counselling is useful so that the anger doesn't take up more space in your life than necessary.

Hugs to you for this sorrowful time.

XXX. Anne G.

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Dear Alli sorry for your loss. I can understand your anger, PSP is so cruel and it's so hard watching our loved ones being taken away from us bit by bit. I hope someday in the not too distant future that the good memories of your mum prior to PSP come back to you. Sending you love Nanny857xx

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Thank you all for your support and advice and kind words! We had a lovely service for my momma on Friday, we were successful in fulfilling her request , from a beautiful pink dress, and the flowers she loved , lots of friends and family!! I think she would be pleased!! Now... we just try to pick up the pieces from this horrific disaster and go on with life without her!! It will never be the same! Please continue to keep me and my family in your thoughts and prayers!! I apologize for my words of anger, but I am grateful that I had you all to release on. And to not be judged , and to be understood was exactly what I needed! I will be ok... I do know that deep down.. because I am my momma's daughter!

Thank you for everything!

Love, Alli

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