I hope everyone is as well as they can be. I thought I’d come and send my prayers and thoughts with you all.
So it’s 7AM in the morning and I’ve been crying since 6AM, thinking about my dad, how much I’d love to hug him, and have a Guinness with him ..it’s two years in November and it has not gotten any easier.. but I am so happy he is not suffering and I know he is with me, I really do….what hurts me the most is how he suffered with that awful disease. I hate CBD. I loathe it. However I do remind myself that we did everything we could.
What I wanted to say is, for anyone going through this now, if you’re watching someone you love battle with CBD or PSP, YOU’RE AMAZING , and you’re not on your own, I know it can be so challenging; Their change in personality, understanding their speech, the mood changes, it’s heartbreaking to watch and sometimes you feel so helpless, what I can say though is life will never be the same but it will be ok ❤️
Hold on tight, hug them everyday and remember to take care of yourself.
I still think of you all and say my prayers
Godbless
Reet xxxxxxxx
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daddysgirl1916
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Sending big hugs to you, I lost my dad 2 years in October and now got Mum living with us battling this PSP monster so I know how you feel. It's hard xx
Thank you, likewise. This forum really is a huge support where others would not and do not understand. I have learnt so much on here, and mainly that we are not alone x
It really is a fantastic community, it helped me so much when my dad was going through it, I didn’t know where to turn and I’d never heard of CBD, so the advice and comfort was a blessing. Xx
Take care of yourself too Reet. Remember, there's no timeline on grief and, however painful, those memories of Guinness drinking with your dad are good ones of happier times. Hugs.
I am good, I take each day as it comes and I think of everyone I’ve ever spoke to all the time. Such a wonderful community, dare I say the best ❤️Sending my love xxx
Hi Reet, I can in a way understand your sense of loss. It will be 2yrs this Dec since my husband passed away and I still have tears. I was lucky to have a few sessions of counselling, and was told that the 2nd year is the hardest and I’ve found that to be very true in my case as I felt numb at the start and then realisation kicks in.
Thank you for your encouraging post to those who are presently going through the terrible journey and for still being here for them.
Keep remembering those happy times with your dad and raise your glass of Guinness to him. He was a wise man introducing you to the ‘black stuff’
I remember him everyday, some days I smile, others I’m in writhing pain. But I know he is with me, I feel him, I feel his warmth, I find myself doing things he did and I am SO SO proud of the man he was. I agree with the 2nd year being the hardest.. we will continue their memory.
Good morning, Daddy’s Girl!I know your pain as I am going through watching it with my husband. I pray for the a good Lord to release him from this awful, insidious disease. I pray for him to be able to touch the face of Jesus and dance with the angels. I know the best is yet to come. I say these words to hopefully give you peace in the knowledge your beloved father is in a better place with his earthly afflictions gone. My husband is in a home temporarily recovering from a severe UTI and a fall. He will go into hospice when he returns home. Watching him go through this disease is the hardest thing I could ever imagine and even as I ask “why?”, I know there must be a reason and something good will come of it. I cannot imagine what, but all things work to the glory of our Lord. I hope these words give you some comfort in your grief. May God be with you and your family.
The price of love is grief, it’s unfair but I do thank god that people stricken with this awful disease have the most amazing people with them, my love to you and your husband. I’m sure the angels are awaiting to provide the golden relief 👼
Like others, “I hear you and can relate to everything you wrote”. God Bless the fact that you have no regrets, take that feeling and hugs it tight. You take all the time you need to process what you experienced, both good and horrible, with your dad.
Personally, I went to my ex’s grave yesterday and just cried my eyes out (he passed in August).
The heartbreak of sadness is so powerful.
Later, I had a text exchange with “the sister” - let’s just say she is consistent with her negative view of me.
Just reading your post, crying my eyes out, my dad was put in to a home last week due to his falling and not being safe anymore at home, he suffers from PSP, he's eyesight is getting worse, he's eyes are sore and it's getting harder and harder to hear the little he says now, I'm really struggling with him being there. Thanks for your post, this is the first time I have visited the site, should have done this a long time ago. I feel so lost, sad, angry and confused about what I can do for him to ease his transition, he's so young compared to others in the home, as kid I always remember him saying he hated them and never wanted to go in one, it breaks my heart every time I leave him there . 😢
First of all, cry as much as you need to, let yourself feel every emotion. You’re entitled to. I understand your anguish, your dad is safe, take solace in this my darling.. it’s very difficult I know. You can visit dad and still be his daughter instead of just his carer, a lot of us lost our role as daughter, wife, brother sister as our entire focus was being a caregiver. Go and see your dad, hug, kiss and just let him know you are there. One of the most frustrating things for me was seeing him lose facial expression, and not understating what he needed or wanted. We used board with the words YES, NO, PAIN, HUNGRY and THIRSTY ON. When I pointed to these he would nod his head.
For the sore eyes I used to bathe my dads with boiled water left to cool in the fridge and gently wipe with cotton wool or I would use frozen cucumber…
You’re amazing and don’t forget it, keep on loving and treasure every moment you can, although sometimes I know these could be hard with the personality changes.
I am sending you loads of love, light and strength. If you ever need to talk I am always here.
Thank you for taking the time to reply, it's really nice to know I have somewhere to come now and knowing we are not alone helps, for everything I have been through and dealt with in life nothing could compare or prepare me for the wave of emotion that has taken over my body and soul this last week, I think while he was at home I was in denial that his wife was dealing with things and happy in the knowledge he was in his own home and we weren't at this stage yet, it all happened so fast all I can think/worry about is how he is dealing with it and the one of the many cruelties of this disease is that he can't even tell us. Thank you again from one daddysgirl to another xx
I’ve just come across your post and am in an almost identical situation with my mum having PSP and moving into a nursing home last June due to falls. Sine then her speech has got a lot worse so quiet and hard to understand( I’ve just finished a FaceTime call but spent the time just watching her as she was laid in bed with her eyes closed yet had FaceTimed me ) She FaceTimes me numerous times during the day/night ( 40 last week in one day) making me feel so guilty about her being in the nursing home telling me she hates it. I never thought my mum would end up in a nursing home but there was no other option we had exhausted them all
Seeing you love and prayers. My mum was diagnosed with PSP a year after I lost my dad after melonama was misdiagnosed- it’s been an awful few years after my dad died mum then started falling more and was diagnosed last year whilst in hospital after a fall left her on the bedroom floor for 10 hours ( out of reach of the phone and the lifeline🙈) She was given the diagnosis and no follow up by anyone except an occasional visit from speech therapy. Her GP is useless hasn’t seen her since before dad passed and she’s now in a nursing home as despite a full care package we were unable to cope with all the call-outs and falls in her flat. I was getting upwards of 40 phone calls a day she was reluctant to let the carers help her but the minute they left she would ring me. It was getting out of hand and starting to affect me mentally as well as affecting my family relationship. I looked at lots of care homes and we opted for a small one with only 35 residents. She settled but will constantly tells me she hates it and when can she come out - I feel guilty I never thought I would see my mum in a nursing home but she’s now totally immobile, her speech is declining and I’m finding FaceTime calls difficult to understand.
The home had an outbreak of covid so went back into lockdown which was hard but now allows an essential caregiver to visit for the mental health of the residents.
As mum has had no follow up I’m not sure how to raise awareness of the progression of the disease and her wishes. We finally after a fight have the movement disorder nurse coming to see us on Monday I just feel so alone. I fought every inch of the way for my dad and now am back in the position but this time for mum
Hello, I hope you’re doing as well as can be..How is your mum getting on? How are you? I remember my dads speech slowly become more incoherent as each day passed. We got to the point of using yes and no cards for simple things like “do you want a cup of tea?” Or “do you need to go to the toilet” Please don’t feel any guilt, at least you can concentrate on being a daughter and not just a carer. It’s extremely hard, I was able to because I don’t have children but I still struggled and my mum was fantastic with my dad but we were all exhausted. Mentally and physically.
I pray with every fibre of my being they find a cure for these evil diseases, one day. Sending you lots of love xx
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