One Year today: It was one year today that... - PSP Association

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One Year today

Beads0122 profile image
27 Replies

It was one year today that my beloved passed away from the cruel disease of CBD at the young age of 59. This week has been a most difficult one for me. Painful memories of that last week of her life that I had pushed out of my mind have came flooding back.

I had planned to just be alone this day, but being fathers day(US), my sons and their families are with me. I know they are hurting as well. I’m sure this is best.

Thank you for your friendship here in this forum. Your support and kindness helped me through the caring for my wife and comforted me after her passing. You fully understand the physical, emotional, and mental stresses of caring for and watching your loved one succumb to this terrible disease. I do find it hard to read posts however, as new members are added daily. I can see myself through this posts as I was first coming to grips with this disease.

Photo is of my wife and daughter 10 years before her passing. A happy time I love to remember, when only the slightest symptoms were noticed but we dismissed.

Blessings,

Bobby

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Beads0122 profile image
Beads0122
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27 Replies
enjoysalud profile image
enjoysalud

Thank you for the photo and for your post! Your wife IS beautiful. How fortunate that you had her for the years you had her, and that SHE was YOUR wife.

I lost my son to PSP, May 4, 2017, he was barely 55 years old............so I relate. I spend one day, at least, each week going through photos. I have lots but not enough.

For Mother's Day, I was alone, but NOT really. I found old letters from my son written his first year or two at university.

I don't expect to ever lose the loss of my son, but I do find, starting this third year, better health, greater joy, and focusing more on the joys of his presence when he was here then on my loss. MORE, "He would love this" and less "How unfair/sad that he is not here".

HAPPY FATHER'S DAY!

Los Angeles, CA, USA

Beads0122 profile image
Beads0122 in reply to enjoysalud

Thank you. I hope I never have to experience the loss of any of my children or grandchildren. Your son was way too young.

Yes, I was fortunate to have the joy of experiencing life with my wife for almost 36 years. I did marry UP.

Bobby

Hiking13 profile image
Hiking13

What a beautiful photo and beautiful memory. It’s so hard this grief thing isn’t it, my husband passed away from PSP on 26th Dec 2018, he was 58 and I am finding it harder and harder as time goes by I miss him so much but I think we just have to treasure the happy memories. Thinking of you Sarahx

enjoysalud profile image
enjoysalud in reply to Hiking13

Hi Sarah, for me the 2nd year was much more difficult and challenging than the first year. I know we all experience the loss differently, but sometimes it's helpful to hear other people's experiences. I wish for you that in your near future a gentle grieving arrives. That 2nd year for me was DIFFICULT/BRUTAL. I'm glad it is behind me.

55, 58, and 59. I often wonder why or what causes some to be HIT early by the symptoms compared to others..... it not arriving until their late 60s and mid to late 70s. I don't expect answers or theories, but some day I hope science will be able to tell me.....and that science will know before I too die.

Closing down my computer and crashing with the TV.

Los Angeles, CA, USA

Beads0122 profile image
Beads0122 in reply to enjoysalud

EnjoySalud,

I was hoping that it got better with time, but I am sure there will be those little reminders that seem to pop up each day of the loss that we have experienced.

I hope that science finds a cure no matter the age.

Closing down my computer too, the dogs are begging for a walk.

Blessings,

Bobby

raincitygirl profile image
raincitygirl

She was a beauty! Hang in there, Bobby. I'm struggling through the first year too. Sometimes it's hard to believe it will ever get better - but I pin my faith on what others in this forum have told us: at some point the pain and despair eases, becomes more gentle with more balance and perspective. (perhaps not quite as early as the 2nd year, according to some!!..)

Hugs for strength XX

Anne G.

Tippyleaf profile image
Tippyleaf

Dear Bobby

What a beautiful photo.

This forum is so helpful -sharing our challenges gives us all a greater understanding and realistic expectations. 7 weeks since the loss of my husband and it still seems surreal as though I will wake and it will all have been just a bad dream.

I hope there will be more moments of happier remembrance in the future.

Love and hugs Tippy

Beads0122 profile image
Beads0122 in reply to Tippyleaf

Tippy,

Thank you. I know at 7 weeks, I struggled to get on this forum. It was too painful, but I keep coming back because of the care, concern, and support from people like you.

I hope strength and comfort for you as well,

Bobby

Marilyn_cbd12 profile image
Marilyn_cbd12

Bobby, what a wonderful photograph to have as a remembrance! I am daily thankful for the gift of memory and as time goes by and my husband deteriorates it has become so important to me to indulge those memories of happier times, especially, for some reason, memories of us dancing together. It sounds as though you have a very loving family and your wife ‘s spirit is strong still in each heart.

Marilyn

Spiralsparkle profile image
Spiralsparkle

Beautiful photo. Sending you massive hugs.

Special dates can be very painful. How you are feeling is a normal response to grief.

Xx

Kevin_1 profile image
Kevin_1

Hello Bobby

Such a lovely photo.

I do hope the day went OK for you.

And, that your wounds continue to heat.

It must be hard.

Warmly

Kevin

Beads0122 profile image
Beads0122 in reply to Kevin_1

Kevin,

Thank you. I think of you and your wife often. You are one of the pillars of this community and I know are in a very difficult time caring for your wife with this disease.

Hoping for you to have strength, wisdom, and comfort,

Bobby

Baileyboo profile image
Baileyboo

Dear Bobby

What a beautiful lady your wife is/was.

I am so sorry you are going through this and understand your pain. I lost my amazing husband in November 2017 and although I am in the second year of loss, my husband was 62, I am still struggling. Les and I were married for 41.1/2 years. That half is important, there will never be the answer we are looking for as it isn't here yet. Les had PSP and I struggle with the pain of remembering him when he was well.

I thought perhaps it would ease. Just last week I saw a photograph of the Greek Islands and the tightness in my chest was almost unbearable as I remembered him laughing when we were on holiday.

I hope you will feel, as days, weeks, months go on at least a little more able to cope.

I know without the help and support of this forum I would never get through this and knowing you also get support is lovely. Everyone in here knows how all of us are feeling and I am so thankful that you also value the friendship and care.

You beautiful wife would hate to see you sad and I always feel my husband is only a whisper away.

Take care of yourself during this time.

Sending love and hugs to you

Pat xx

Beads0122 profile image
Beads0122 in reply to Baileyboo

Pat,

I have to admit I am jealous of you when I see 41 1/2 years or when I have friends celebrating 50 year anniversaries. It is not just a number. It is an amazing collection of memories. Ours were not always without conflict, but all the memories were part of a story. A story that I was blessed to be a part of, even though I would have liked a longer story.

Blessings,

Bobby

Baileyboo profile image
Baileyboo in reply to Beads0122

Bobby

Of course you would have loved so much longer. These diseases are relentless with our loved ones.

Les and I had stormy times too but if only I could have him back pre PSP I would weather any storm with him at my side. I feel so lost now not having him to just sit with.

We have to do our best to cope and try to remember good times (I am a fine one to talk) without tears. Life can be incredibly cruel and we are so lucky to have the friends we have in this forum. I have some horrid days but there is always a word of comfort sent when I write on here.

I am sending love and virtual hugs to you.

Love

Pat x

DenB profile image
DenB in reply to Baileyboo

Dear Pat,

My dear husband has only been gone for 6 1/2 weeks, ( the half is important!). He was also 62, as your dear husband was, would have been 63 in October, when he passed and as yourselves,we would have been married for nearly 42 years,(in October).

My heart really does ache.......

Take care

D X

Baileyboo profile image
Baileyboo in reply to DenB

Dear D

Thank you for replying.

You are so right in that the 1/2 really matters. Losing Les is by far the worst pain I have ever felt. That pain will, in time, ease. So I have been told. I am still waiting for the ease which I am sure will come at some point.

It will be 2 years since my husband, Les, left me at the end of November.

I am so sorry to hear of your loss. I haven't the words to help you but I feel your pain. Your story is so similar to my life with Les.

You must look after yourself now and find the strength to go forward. That's rich coming from me. I am still struggling to cope.

My thoughts are with you.

Love and hugs

Pat xx

Northstar1 profile image
Northstar1

Dear Bobby

What a lovely photo. My husband is 56 dx at 55 symptoms for 2/3 years. I ask myself why these diseases hit at such a young age. There seems to be limited knowledge at the moment sadly for us.

Kevin in a recent post said 'it's doable' dealing with this disease and all that is to face us. Strangely his words lifted my spirits made me feel stronger love and hugs to you xx

HilsandR profile image
HilsandR

Hi Bobby

Reading your post my heart went out to you and I have to agree that dipping in to this site can be painful and can easily take us back instead of forwards, hence I often take a break from it. However, that said, I also believe that if my words can help one other person, even in a small way, then maybe that will help me along my journey as well.

I have no words that will make you feel better, no words can make me feel better 8 months after losing the love of my life. What I would say though, and it does work for me, don't isolate yourself, families should be together on these milestone occasions and indeed throughout this journey. Try to remember the times of joy in your life shared with your lovely wife rather than the distress of the final weeks. Think about the times with her that will make you smile and surround yourself with happy photos like the one you have shared and be around cheerful people. We are the lucky ones to have such wonderful memories, many people just don't get that lucky. I have the most delightful 2 year old granddaughter who brings me so much joy and for that, I am so thankful; she is my reason to keeping heading towards the light at the end of what some days is a very dark tunnel.

Grief is the most painful thing we will ever encounter; the road is a long one but we will all find that light and the end of it, we are programmed to survive, but we have to keep pushing forwards and remember to smile along the way and look for the joy, even in the little things.

Keep going Bobby.

Best wishes, Hils.

Sent from my iPad

Beads0122 profile image
Beads0122 in reply to HilsandR

Hils,

You are correct about this forum. Although our bond is a cruel disease, it is amazing how the outpouring of love and kindness from others who know what this is like can comfort in ways no one else can.

I feel convicted when I see others like you who are dealing with grief as well, but I post while I’m having a pity party. I know I’m not the only one grieving here.

I too have a granddaughter who lives nearby. She is 3 now. We have one day a week to go on an outing and share lunch. It is therapeutic and brings me joy.

Best wishes as well,

Bobby

Kaka1234 profile image
Kaka1234

So sad for you Bobby, she looks a lovely beautiful lady.

I'm caring for my husband with CBD, he's only 58 I'm 48.

Everyday bring a new challenge for us but I love him with all my heart.

Thinking of you xx

Beads0122 profile image
Beads0122 in reply to Kaka1234

Cherish each moment despite the hardship of being a caregiver.

Blessings,

Bobby

daddyt profile image
daddyt

Blessings Bobby. Cherish those wonderful memories you made over the years.

Tim x

Pavaga profile image
Pavaga

Bobby, My heart is with you. What a beautiful picture. Think of all the wonderful years together and we all are with you with similar feelings. A hug, Patty

Katiebow profile image
Katiebow

Your wife and daughter are both very striking Bobby, I too lost Ben just over a year ago but remain active on this forum as it somehow helps to offer advice or share emotions. It's weird as his death seems so near but so far away and i still feel that I am struggling in some ways and you sound the same. Going solo after so long is difficult but you have to put one foot in front of the other and get on with your new life. I'm sure people think that I'm doing fine from outward appearances but it's on the inside that the pain of loss is felt and it's not easy is it!

Sending love

Kate xxx

Beads0122 profile image
Beads0122

Kate,

You are so correct. My outward appearances dont reflect the mess I am inside. It makes me more sensitive to people I come in contact with everyday. I realize that I dont really know what their story is, their concerns, their losses, or their struggles. It doesnt take any effort from me to show just a little kindness, but may make a huge difference to that individual.

Thank you,

Bobby

DenB profile image
DenB

Dear Bobby,

The photograph is beautiful, thank you for posting it.

My husband passed only 6 and 1/2 weeks ago of CBD and yet here I am back on this site, reading posts and imagining other people's lives with an even deeper understanding.

My heart aches more deeply than I ever believed it could at times but I also have my grandchildren to give me distraction from my grief so that I can smile again!

Love to you and your family

Take care, Bobby

Denise X

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