She is gone : My sister has passed away in... - PSP Association

PSP Association

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She is gone

PSPCarer profile image
85 Replies

My sister has passed away in her sleep this morning. She was diagnosed two years ago and was somewhere in the mid phase of the disease. She slept and never woke up. Today was her daughter’s birthday and she was super excited that they were going out for dinner. She died of a cardiac arrest.

At least she is no more suffering. Rest in peace, sister

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PSPCarer
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85 Replies

My heart goes out to your sister's daughter & you of course. Sending Gentle Hugs... Granni B

PSPCarer profile image
PSPCarer in reply to

Thank you very much. This forum is amazing. It connects us like one family going through same unfortunate circumstances

in reply to PSPCarer

Yes it does. It is a comfort to have so many kind, supportive, understanding friends. Take good care of yourself & Treasure the Good Memories of your sister. Sending hugs... Granni B

It is sad that she died. At least it was in her sleep.

PSPCarer profile image
PSPCarer in reply to

That’s comforting. Thank you so much. 🙏

bazooka111 profile image
bazooka111

Oh I am so very sorry! Prayers going up for your family 🙏🏻

PSPCarer profile image
PSPCarer in reply to bazooka111

Thanks a lot 🙏

PSPCarer profile image
PSPCarer in reply to bazooka111

Thanks a lot. It means a lot 🙏

Dadshelper profile image
Dadshelper

You and your family have my deepest condolences.

Ron

PSPCarer profile image
PSPCarer in reply to Dadshelper

Thank you very much. 🙏

PSPCarer profile image
PSPCarer in reply to Dadshelper

Thank you very much. 🙏

Marie_14 profile image
Marie_14

So very sad to read your news. It is heartbreaking that she died on her daughter's birthday. The only consolation is that she went quickly and had happy thoughts. God bless you all at this sad time.

Marie x

PSPCarer profile image
PSPCarer in reply to Marie_14

Thank you very much. Way too soon. We did not expect this within two years of diagnostic. She wasn’t that bad. She had a cardiac arrest as per the doctors. Hope she rests in eternal peace.

doglington profile image
doglington

My condolences.

So sorry for you but going in her sleep is a good way to go.

Love Jean xx

PSPCarer profile image
PSPCarer in reply to doglington

Thank you very much. It means a lot. She went peacefully is the only comfort I can draw from her passing. I dreaded the tube feeding stage.

bgentges profile image
bgentges

I'm so sorry for the loss of your sister and to you niece who did not get to spend her birthday with her mother. Thankful that she is no longer suffering and passed in her sleep with excited anticipation of dinner with her daughter.

PSPCarer profile image
PSPCarer in reply to bgentges

That’s relieving. She went happy and excited. She wanted to go shopping before the birthday dinner. She is no longer suffering. Thank you so much for your kind words. 🙏

Tippyleaf profile image
Tippyleaf

So sorry for your loss, but I hope you can take comfort that it was peaceful

Love Tippy xx

PSPCarer profile image
PSPCarer in reply to Tippyleaf

That is the only comfort and positivity. PSP is a horrible disease and I pray that nobody should ever see their loved ones suffer at the hands of this or any horrible disease. Thank you so much 🙏

SewBears profile image
SewBears

I’m so sorry to hear about your sister’s passing. I hope that you and her daughter will raise a glass and celebrate her mom’s (your sisters) life today during your nieces birthday.

You have my deepest sympathy.

Sending hugs from I SewBears

PSPCarer profile image
PSPCarer in reply to SewBears

Thank you so much. It’s heartbreaking that she passed on her daughter’s birthday. She is in peace at last. No more suffering and disability.

daddyt profile image
daddyt

So very sorry for your loss. Hugs and prayers.

Tim

PSPCarer profile image
PSPCarer in reply to daddyt

Thanks so much 🙏

Sarah1972 profile image
Sarah1972

Such a sad time for you all. May she rest in peace and you and her family find strength in all your happy memories that she has given to you, and you to her. Thinking of you all xx

PSPCarer profile image
PSPCarer in reply to Sarah1972

Thank you very much, Sarah. It’s devastating. She died peacefully and that is relieving. 🙏

raincitygirl profile image
raincitygirl

My sincere condolences to you in the loss of your sister. Your heart must be very heavy now though you are grateful that she is free at last. I know what the loss of my sister would mean to me. Blessings and peace to you. XXX

Anne G.

PSPCarer profile image
PSPCarer in reply to raincitygirl

Thank you very much. The only consolation is her peaceful departure. She was only two years into PSP.

seawink profile image
seawink

My prayers go to you & your family.

PSPCarer profile image
PSPCarer in reply to seawink

🙏 thanks a lot

Inparadise profile image
Inparadise

My deepest and sincere condolences to you and your family. May your sister Rest In Peace.

Kerry

PSPCarer profile image
PSPCarer in reply to Inparadise

Amen. Means a lot. Thank you very much 🙏

JCRy profile image
JCRy

What a shock for you all. I am so sorry for your loss, but has already been said, she went to sleep with hope in her heart and may that be a comfort to you all, especially her daughter.

Praying for peace and comfort to fill your hearts and minds at this time.

Juliet

PSPCarer profile image
PSPCarer in reply to JCRy

Thanks, Juliet. She had planned a busy day yesterday. She wanted to go shopping before birthday dinner. She passed peacefully. Thank you very much for your kind words 🙏

Denisejoy1 profile image
Denisejoy1

Sending you my love, this is such a traumatic disease. I hope the heaviness of your heart will lift and you will always have the memories of happier times with your sister 💖

PSPCarer profile image
PSPCarer in reply to Denisejoy1

Thank you so much. It’s traumatic and ugly. Looking at the patient makes you feel sad and extremely helpless. God bless everyone who is suffering.

Spiralsparkle profile image
Spiralsparkle

That sounds quite a shock to you all & unexpected.

Sending massive hugs x

Dickenson2 profile image
Dickenson2

So very sorry for your loss but glad it was peaceful and quick. At least you have not got to watch this terrible disease gradually take everything from her x

Tunupup profile image
Tunupup

Sending you all my love. My sister also died in her sleep. I miss her every day. It's a dreadful illness xx

Kevin_1 profile image
Kevin_1

I'm so sorry you are facing this loss.

At least she is no longer in torment.

Wishing you well in this time.

Warmly

Kevin

PSPCarer profile image
PSPCarer in reply to Kevin_1

Thanks a lot, Kevin. We were still exploring this horrible disease. Everyday was a new day for us. We tried to make her as comfortable as we could. She went quite early after her diagnosis but it was probably better for her to go before suffering the last stages of the disease. 🙏

Zibo profile image
Zibo

Dear one, I am so sorry about your loss, and so unexpected.

With my mother deep into the illness, it makes me think that at least she and everyone around her do not have to witness the degenerative phase of this unforgiving illness.

Take gentle care. Holding you and your family in my prayers and thoughts.

Antonella

PSPCarer profile image
PSPCarer in reply to Zibo

Thank you very much. I hope God makes it easy for your mother and your family. It’s a cruel disease. XX

HilsandR profile image
HilsandR

Heartbreaking for you all and especially on her daughter's birthday. There are no words that I can offer to make you feel better right now but one thing I am sure of, that cardiac arrest stopped in its tracks the worst to come, and there are blessings in that your sister and family did not have to face the heartbreak and hopelessness that the disease bestows upon the sufferer and carer alike.

Look after each other; grief is a long hard journey but you'll find your way through it step by step.

With love to you and your family,

Hils

X

PSPCarer profile image
PSPCarer in reply to HilsandR

It is heartbreaking. She is no longer suffering and that’s relieving. Thank God she didn’t come to the choking stage. She was still eating well and enjoyed her food.

I will always have regrets that we couldn’t do anything.

Thank you again 🙏

So sorry for your loss but at least it was peaceful for her.

I feel sure she is walking by your side.

Big hugs

Sue x

PSPCarer profile image
PSPCarer in reply to

Thank you so much, Sue.

She departed peacefully on our mother’s bed where she was most comfortable. Our mother passed 8 years ago.

I don’t know whether to feel sad or relieved on her departure. She isn’t suffering anymore and that surely is a consolation.

Adamxd profile image
Adamxd

RIP, she didnt go through the horrible stages of this disease, she was freed on a good timing, my condolences , RIP

PSPCarer profile image
PSPCarer in reply to Adamxd

Thank you so much. That’s what is giving us comfort. Wish she or anyone never have to suffer from this horrible disease.

Marilyn_cbd12 profile image
Marilyn_cbd12

My deep sympathy to you. These losses seem more poignant when we reflect on the long-suffering and courageous victims of PSP, CBD and MSA.

My own sisters are dear to me, and it must be hard for you now. Hugs...and good memories, in time.

Marilyn

PSPCarer profile image
PSPCarer in reply to Marilyn_cbd12

She was suffering. She is no longer helpless. She is free. Thank you very much for your kind words. 🙏

Nat08 profile image
Nat08

So sorry for your loss..she is in a better place not lost in this cruel disease. Was she bedbound and how old was she. I wish the angels would give my dad his wings this disease is so cruel x

PSPCarer profile image
PSPCarer in reply to Nat08

Thank you so much. She was 57. She was bed bound for at least a year. Couldn’t walk on her own. She could sit up with struggle. She could slowly eat on her own but was mostly fed by someone. Her speech was hard to understand. Her neck was very stiff and she was scared to move it. She thought moving would break it.

Dickwin profile image
Dickwin

I am so sorry for your loss. My wife is 2 years from diagnosis and mid stage and I would be beside myself if she were to pass so suddenly. We all know we are working on an abbreviated schedule here but can we ever be truly ready for this? As others have noted, she went peacefully in her sleep and was spared the last 2 to 5 years of this hellish disease. Silver linings. You and your family will be in my prayers.

PSPCarer profile image
PSPCarer in reply to Dickwin

Thank you so much. She was buried today. We are devastated.

allison1966 profile image
allison1966

xxxxxxx

PSPCarer profile image
PSPCarer in reply to allison1966

🙏

Nanny857 profile image
Nanny857

My condolences to you and your niece on the loss of a sister and mother. As others have said she passed away with happy thoughts, looking forward to her daughter's birthday, shopping and dinner. Thankfully PSP didn't get a chance to ravage her body completely and she passed away peacefully. Sending love, Nanny857xx

PSPCarer profile image
PSPCarer in reply to Nanny857

Thanks a lot. It’s hitting me harder after the burial. I am feeling sad that we helplessly watched her involuntary surrender to this disease.

Katiebow profile image
Katiebow

Sorry to hear that you lost your dear Mum, at least she was spared the huge torment of the disease as it progresses.

Sending love

Kate xx

PSPCarer profile image
PSPCarer in reply to Katiebow

Thank you very much. She was my sister. It’s heartbreaking. We didn’t expect her to go so soon but she went peacefully and that’s the only comfort we have at the moment to feel better.

PSPCarer profile image
PSPCarer

Thank you so much. We are relieved that she didn’t see the most horrible stages of the disease. She is definitely in a better place. RIP.

salem16 profile image
salem16

Sorry for your loss and her daughter losing her mom. Always difficult. I lost adrien after 3 yrs pneumonia in lungs.

PSPCarer profile image
PSPCarer in reply to salem16

Thank you so much 🙏

All of us went through or going through this ordeal. May God all those who are still suffering.

NHGrace profile image
NHGrace

That’s how my mom went last fall as well. It was a shock that seemed too sudden, but at least she didn’t struggle and was able to eat and engage until the end. May the memories of your sister see you all through this loss. Big hugs

PSPCarer profile image
PSPCarer in reply to NHGrace

Thank you so much. I feel helpless when I think of the unforgiving disease but feel relieved that she is free. Her disability was painful to watch. I haven’t slept properly since her passing. It was an absolute nightmare. I wish all the patients well and peaceful end to this cruel disease. Hugs to you, too. XX

NHGrace profile image
NHGrace in reply to PSPCarer

Helpless and relieved were the feelings I had as well. It took me many months to sleep well, but now my memories of her are all “as she was” - not about PSP. She was lucky to have you and her daughter in her life. Be kind to yourself.

Ovation1 profile image
Ovation1

Your sister will no longer suffer rip.x

PSPCarer profile image
PSPCarer in reply to Ovation1

Isn’t this the most incredible feeling? Thank you so much. 🙏

Baileyboo profile image
Baileyboo

Hi, I have just read your post. Please accept my sincere condolences. PSP is such a vile disease.

Your sister died without too much suffering and that is a good thing.

You now need to take care of yourself and your niece.

Love and hugs

Pat xx

PSPCarer profile image
PSPCarer in reply to Baileyboo

Thank you very much, Pat. When I mention the disease to people they think it’s some sort of psychological disease. It started with a severe depression. It was February 2017 when she started to show signs of depression and “lost” appearance. She would cry at the smallest things and we thought she was overreacting. She’d hit her car twice while driving so we took the car from her. She deteriorated by the day after that. Last one year was a rapid decline. She couldn’t do anything on her own. Her ordeal is over and that is the only comforting thought. Thank you again 🙏

Baileyboo profile image
Baileyboo in reply to PSPCarer

Good morning. I don't think many people understand PSP. Trying to explain it takes too long.

My husband was so frustrated when he couldn't express what he wanted. Frequently it left both of us exasperated. He knew everything that was going on around him but most people, including his mother, were convinced that he didn't understand.

There is no quick way of explaining this vile disease and people lose interest when you try.

I miss my husband so much it hurts. He is in a much better place now. The only good thing about that is that he is no longer suffering.

Take care of yourself and your family during this sad time.

Love and hugs

Pat xx

PSPCarer profile image
PSPCarer in reply to Baileyboo

Thank you, Pat. It indeed is impossible to explain the disease. I definitely noticed that she was alert like any other normal person and knew what was going on around her. She’d open her mouth as soon as I lifted the spoon to feed her. It seemed she couldn’t see or couldn’t see properly because of the angle of her eyes but she could see everything around her. I still can’t believe we experienced this horrible disease. It seems like a nightmare. Hugs back XX

Baileyboo profile image
Baileyboo in reply to PSPCarer

We have experienced the most vile disease. I watched it take Les over 3 years (we were married 42 years). It is so horrendous to see and we all do our best to deal with it while our hearts are breaking. I, along with so many others in this form, feel robbed. There is absolutely nothing we can do but care. It takes its toll.

Les would become so angry and frustrated which was totally opposite the man I loved.

Life goes on and at some point we will manage our grief. I just haven't found that yet.

You have to look after yourself and family as the fallout of losing someone you love to this disease can affect your health. I know from experience.

I wish you all the love to deal with this.

Hugs

Pat xx

PSPCarer profile image
PSPCarer in reply to Baileyboo

Lack of sleep is already taking its toll on me. I am trying to move on but I will take a very long time before I get used to it. Thank you for your support. xx

salem16 profile image
salem16 in reply to Baileyboo

Adrien my hubby birthday tomorrow going to be hard my daughter and I going grave. He died July 15/19. When they finally used feeding tube bottom not close what a grave discovery. He literally starved before pneumonia took 8 days no food, water it was awful. My daughters seem over it but not I. I cry constantly. I have health issues not helping me. Why can’t I find peace. I have hard time coping every day life. I know he in better place. He only 65.

Kathrin87 profile image
Kathrin87

sad to hear 😞 god bless your sister

PSPCarer profile image
PSPCarer in reply to Kathrin87

Thanks a lot. Her misery is over. 🙏

jabberwocky45 profile image
jabberwocky45

thoughts and hugs for you all x

PSPCarer profile image
PSPCarer in reply to jabberwocky45

Thank you so much 🙏

dollydott profile image
dollydott

I am so very sorry for your sisters daughter and you dear lady .

Your sister was so young

I am thinking of you

Love Lynda 💜

PSPCarer profile image
PSPCarer in reply to dollydott

Thank you so much, Lynda. It is very unfortunate. She was so lively so full of life. It broke my heart to see her bedridden. Last two years were a nightmare. This disease is unforgiving. Hope she is in a better place. xx

Inarticulate profile image
Inarticulate

I’m so sorry for your loss. Sending love your way x

PSPCarer profile image
PSPCarer in reply to Inarticulate

Thanks a lot 🙏

Her suffering has ended and that is the most positive thing about her passing.

kandk profile image
kandk

Just seeing your post, wishing you and your family peace as you now move into the next stage of care giving - caring for yourselves. Acknowledging the sadness, feeling the relief that she no longer suffers and does not have to further experience the ravages of this disease. Love and hugs to you. Kathy

PSPCarer profile image
PSPCarer in reply to kandk

Thank you very much, Kathy.

It all seems like a nightmare. I can’t believe she has gone. I can’t believe she suffered that disease. She was larger than life. I want to shut down the part of my brain that holds the painful memories of the past two years. I wish I could.

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