With a heavy heart, I wish to report the sad demise of my beloved wife in the early hours of 10th Oct. Just for the information of all, she was diagnosed with PSP in 2014 and was slowly her condition was deteriorating. As briefly reported, a few months back she developed swallowing difficulties and was being fed through a PEG tube directly to the stomach, Even though her memory and cognitive skills were intact, she was unable to express herself . It was a very painful situation for me watching her unable to tell us her difficulties. The home nurse attending to her was extremely good and was to communicate with her through symbolic language. She was managing some how.
Everyday by 8 PM she used to start sleeping after the last feed, and I used to sit with her for a few minutes. On 9th also I was sitting near her holding her hand at 8 PM. At around 330 am on 10th Oct, the home nurse called me , telling there was something wrong. I found her body cold at places and hardly she was breathing. Her body was warm and I started pumping her chest trying to give CPR in my crude way. But there was no response. We took her to the nearest hospital and she was declared dead on arrival. Our children came from USA and UK and all the last rites were concluded on 22nd Oct and children have gone back. I am now alone in our Senior Resident Villa counting my days to be with her in the near future.
I am thankful to Almighty who has allowed me to help her to the maximum extent possible during the 8 years she survived after diagnosis. She was meticulously brought up both our children who are very good professionals, daughter engineer and son doctor. The first grand son who was with us till 3 1/2 years old is now doing his BA Economics in Cambridge University. WE have three more lovely grand children with just one girl for the daughter. Just for remembering her, I am attaching a photo of hers in her healthy years.
It is God's will , we accept it. I am waiting for my turn. Pray for the departed soul.
Written by
kpmdas
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I am so sorry to hear your sad news and to hear that you are now on your own but what I lovely tribute to her and your family you have given. She must have been so glad to have had your care and support to the end. My love and prayers are with you. AliBee x
Thank you for sharing your journey. My husband had PSP and died 5 years ago. It is hard being alone after a long marriage. It will comfort you to remember how you were able to care for her. You have plenty of memories to sustain you.
Thinking of you and your family at this sad time. It is a horrible disease which people struggle to understand but it sounds like your wife was cared for in the best possible way and knew she was loved. I hope in time you will find comfort in this.
It is very sad to read your post letting us know of your wife's demise. Thank you also for including a photo of your wife and expressing the great regard you have for her. I appreciate you taking the time to outline what your wife , you , and your family experienced during the years of providing care for your wife . I know how wearing and stressful it is to witness and deal with the progression of PSP as our loved ones deal with it firsthand. Just as you express gratitude for being able to provide your wife with good care throughout the course of her illness , I am also very grateful that I have been able to provide for my sister who began having symptoms of PSP in 2011. Though there is very little available to change the course of PSP, hopefully someday the prognosis will be much better. But if we can manage to make a positive difference day after day as we care for them and about them , that's a huge accomplishment .
Though grief weighs heavily on your heart now , I hope that you will reclaim the ability to find happiness in living and amongst your wonderful family . Lucky indeed are children and grandchildren who have their father/mother and grandfather/grandmother in their lives for as long as possible !
Sending you caring thoughts and support and heartfelt condolences.
I am very sorry to hear you lost your lovely wife. My husband had PSP and died six months ago at the age of 68. He also had a PEG tube for the last year of his life. Take care of yourself. Grieving takes time.
I'm very sorry for your loss and the hard battle you fought with your beautiful wife. I pray and wish for you to eventually find joy again, as your dear wife would want for you. Please try to be extra kind and gentle with yourself.
I am so sorry for your loss. I am dealing with the PSP story. My husband who is 76, is in year 6 of symptoms, and year 3 since diagnosis. He is having trouble swallowing, but so far has refused the PEG. Many God Bless you.
I found PEG tube quite useful to sustain their life. Even though she pulled out her first tube, later tolerated well. We used to give her something through mouth but she used to cough and so could give very little orally. It was better than starving her till end.
so sorry for your loss🙏🏻 rest easy knowing you cared for her during her battle with this awful disease.
I am currently watching my mum who is 73 go down the same path - fully cognitively aware but has almost lost her speech and gets frustrated at not being able to make people understand. She is still managing to eat and at present that is the only enjoyment she has, she is fully immobile and has made her wishes know that she does not want a PEG tube fitted when she can no longer eat
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Hello my name is Ken Kurose. I am 39 years old taking care of my dad with psp 74 years old. 
My husband Tony sadly died on Friday after suffering for many years from PSP. 
My wife and carer is slipping into a depresion
Thank goodness you are all here!
My olde hobby horse!!!
