I miss caring for my dad: Hi I found this... - PSP Association

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I miss caring for my dad

Arow85 profile image
18 Replies

Hi

I found this site literally a few hours before my dad passed away. I was desperate for answers about how my dad would pass and how bad things would get! I think I knew he was at the end of cbd. I was his carer for almost 2 years along with my fiancé! Although it was hard to watch him deteriorate, I absolutely loved spending quality time with him! I really miss caring for him, sometimes I felt out of my depth being his youngest daughter, having to wash him, spoon feed him change his pads! But now I am so thankful I got to do that for him and I knew he really appreciated it! I just want to say, I read your posts everyday, and you are all doing such a great thing wanting the best and caring so much for your loved ones! I wish I had the chance, just one more day to be able to take him out in his wheelchair and cook his dinner! But also I hate that disease for the way it made my funny clever dad into a shadow of himself, and I wouldn't want him back one more day to suffer! I miss him so much, it's been 4 weeks! But I will cherish every memory x

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Arow85 profile image
Arow85
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18 Replies
easterncedar profile image
easterncedar

What a beautiful post, Arow85. Thank you for sharing. I just had a friend say to me that she thought my guy's daughters would have a hard time with the intimate care. It's really good to hear from a daughter first hand. Your father did a wonderful job, clearly, to raise such a loving child. Really, you have brightened my day. Love to you, Easterncedar

in reply to easterncedar

My daughter, who considered Chris her stepdad, cared for him on her own when I was away on my six-day respite last January. The washing and changing was the aspect I thought she'd find hard but she did it. And I was too exhausted to argue at that point. When I got back we shared the care from then on for the shrt time C had left. Get those daughters involved, say I.

am2015 profile image
am2015

I completely agree with everything Easterncedar has said. I am so sorry for your loss. Losing a parent to PSP is simply awful. You have shown remarkable resilience, love and compassion in your post. I hope that with time you'll be able to remember the good times with your father and that PSP becomes a distant memory. Take care of yourself. xx

sammy90210 profile image
sammy90210

wow - that's amazing - i took care of my dad too, the last 8 months or so of his life - i am a guy and it was tremendously hard for me, i forgot the physical exhaustion, the emotional stress was pretty bad - he really was a lucky man to have a daughter like him (and a son-in-law-to-be who stuck around... i used to like a girl too but she didn't want to continue when i had to leave my country of work to come home and take care of my dad)

cherish his good memories and be happy you can sleep in peace every day, knowing you did your best

easterncedar profile image
easterncedar in reply to sammy90210

Hi, Sammy. Always glad to see something from you. I hope you and your family are well. Love and peace, Easterncedar

sammy90210 profile image
sammy90210 in reply to easterncedar

thanks very much EasterCedar - my mom is doing well and I have just started to miss my dad, though still ever so slowly... the memories of his distress are more fresh in my mind, though I do remember that in the last few months he never really indicated pain, like grimacing his brows or something else, at least I hope so..

I hope you are managing well too - best wishes for you and your hubby and family :)

Rologirl79 profile image
Rologirl79

😢😢😢😢 you and Paul gave our dad independence right till the end being there every day. He was happy Adele and he passed away happy knowing he was loved by all of us and the grandkids who he adored.

This condition is awful and like you I always read the posts even now dads not here.

Everyone on here are amazing and your all doing a fantastic job 💕💕💕💕

rwctea profile image
rwctea

Thank you for sharing this...💜

Lucy602 profile image
Lucy602

I'm sorry for your loss. Very well said. It is a horrible disease and we can only be grateful for the time we do have with our loved ones. I don't like seeing my dad go through this at all but I don't like the thought of his passing eventually. No idea how long he will go on at 80 years old with a bad heart. He's not ever been a real active person but now he can't get around so he just sleeps all day. He's in a care home and has no interest in attending the activities they offer throughout the day. God bless you for taking care if your dad and especially for your fiance who helped you. He's a keeper. Not many people are willing to help out when the situation gets that tough.

pzagy profile image
pzagy

There is nothing that can prepare you for the loss of a parent whether they are sick or not. You did a fantastic job taking care of him and letting him know you loved him and to have your fiance stay by your side has probably made your love for him ever stronger.

Hugs and strength to you and your family

daddyt profile image
daddyt

Beautiful. Any father would be proud to have a daughter like you.

Arow85 profile image
Arow85

Thank you so much for your kind words! When me and my fiancé took on dads caring, we both had part time work and college and it worked out well! He absolutely hated the idea of a care home or strangers caring for him. Dad was independent when we started, just a few falls and difficulty getting his right leg to walk! I certainly wasn't prepared for what was to come! As he deteriorated, we just learnt to deal with it! We always made sure we took him out and I always tried to make him laugh and I was always positive towards his illness, I tried to sugarcoat what was happening. Dad went to a care home 11 weeks before he passed away, he was just about to have a feeding tube fitted and I think he was determined not to have it as he loved his food! he passed peacefully in his sleep, nobody was "prepared " for how fast it happened! I had hoped he would make my wedding next September but thinking about how bad he was, how could he looking back?! It wasn't just me though, my 6 other siblings and my disabled mum also did their best and he knew he was loved x

Noella21 profile image
Noella21

I am so inspired by your heartfelt post. I will always try to remember that no matter how tired and frustrated I get at times that I will miss having my loved one to do those very things for. Those of you who have lost loved ones must flinch when we complain. But I know you understand how we are wedged between exhaustion and fear of loosing them. Condolences and cudos for a job well done.

doglington profile image
doglington

I am tearful reading your post. Its like a light has gone on.

I have tried to protect my grown-up children from the personal care aspect. Yet they have all experience with their babies. I know Chris would be fine with it. I am re-thinking it now as a positive thing they can do with their father and to help me.

We all struggle with wanting to hang on to our loved one but having to face the vast changes in their life and how much they have lost.

Thank you for posting. Your father would have been so proud of you.

Lots of love, Jean x

Arow85 profile image
Arow85

Thank you! I am so glad I did it for him! As it has made me aware of how people suffer, how we can take things for granted, how selfish we can sometimes be! I understand the exhaustion you all feel looking after them, worrying about them and then rushing to hospital in ambulances every time they fall or become poorly! I feel stronger for it and I think if anything it has made me a better person. A lot of family were concerned for me, they thought I'd collapse under the pressure being the youngest and I'm proud to say I coped and dad got his wish, to live independently in his own flat until near the very end! I just miss him so much I have a constant ache inside! X

jillannf6 profile image
jillannf6

I agree with what has been said

pSP PEROSN IN UK

LOL JILL

CXXXXX

abirke profile image
abirke

Arow85, so sorry for your loss. But like you celebrated his presence, celebrate his memory. I Know it is not easy for a child to see their parent leave them No words can express that loss. I do hope you recover quickly so that you can continue on with your life like I am sure your daddy wanted you to....God Bless You

AVB

Arow85 profile image
Arow85 in reply to abirke

Thanks x

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