Another newbie


#1
Hi there

I've just recently registered on the site and wanted to say hi (ha ha it feels like I'm on a dating website!)

My father was diagnosed with Parkinson's about 15 years ago and whether it was a case of pride or a lack of understanding as a family we only found out about it about 6 years ago. He's now end stage Parkinson's and I returned from my home in hong kong in October last year to be with him as the family figured he didn't have long to go.

Here we are in June eight months later and somehow despite numerous hospital admissions with UTI's he's held on. I'm tHe youngest of three siblings and there has been plenty of disagreement between us on what's best for him as I have seen no quality of life since I returned last year. The last few weeks has seen him at home being cared for by my mother and I (I quit my job in hong long and moved back to the uk). His condition has continued to deteriorate and as a family we decided we no longer wanted the trauma of repeated hospital admissions and want him to spend his remaining days in his home with his family around him.

Over the last few days he has become more and more withdrawn and he's currently suffering from a UTI but shows none of the agitation and aggression that we've seen in the past. His excellent palliative care specialist has increased his morphine dosage and it does seem like we are very near the end. Over the last 48 hours he has lost the ability to communicate so we don't know what's going through his mind or whether he's in great pain. I always wished he'd just pass away painlessly but he seems trapped and all we can do is wait. The entire family just feels helpless - what can we do to ease his suffering? Has anyone been in this position before?

Anything we can do to ensure he's as comfortable as possible any advice that readers of this forum could give would be greatly appreciated.

I do hope to hear from some of you soon

Thanks

#2
Well done writing on Forum, hope we can all help you. My only suggestion (from working as a carer) is to try and have someone with him most of the time so that he is not left alone. I think he would appreciate that.

#3
hi welcome to the forum,im very sorry to hear about ur dad,big hugs to you all x:smile:its brought alot of tears to me reading your post cus ive had pd for 11 half years ,and latley im suffering with breathing probs and eating probs,i no the score with pd,but it not help when i sit here thinking of the futre more.i feel for the familys,just like you and ur family,to sit there and watch someone you love change so much,and feel helpless,in a way im goin through same thing with my mom,just got bad health anyway ,but laso been dx with brain tumer ,and they can not operate on her,so im left feelin helpless as well.all i can say to you and your family is wot im doin ,is try be there as much as your able to,show them that your love is strong for them and you care deeply.and personally i think thats all i wont to no,to feel that love,which i do from my family,specially me daughter,i wish you all the luck,and aslo your dad,lots of love ,ali x:smile:

#4
Polly and Ali thank you soo much for writing your posts. Ali I only just realised after posting my initial message how insensitive my message may have been to those living with the condition and I meant in no way to cause any distress but you seem to have an inscribe spirit and strength so I'm kind of hoping you'll let my error slide on this occasion! :wink:

I know it sounds cliched but it's so hard to talk to anyone who doesn't understand the situation which is why I'm glad I've finally come onto this site.

I thank you both for your advice and I do hope to remain in contact.

#5
hi lavelle,noway have you caused me any distress at all,you have deffo come to the correct place to talk,my tears came cus i felt for you and your family,they came cus i will be honest with you i got scared agin of wots happin to me ,there is so many members on theis forum lavelle,that have a story to tell,some come so strong to your heart that you can not but shed a tear.like i said i wish you all the luck,and please keep posting to us all,we all here for one another ,hugs x:smile:

#6
Dear Lavelle,

I feel for you.I have been in this situation 3 times - my step-father, my mother and my son. ( none pd related I hasten to add). I agree entirely with the previous posters - be there for your father, not necessarily 24 hours a day. Talk to him about the good times - he will remember them, even if he does not respond. Encourage him to sip water though a straw

The morphine prescribed will help to control any pain. I do not think that "plumping up the pillows" is of much help, but facial wipes can be refreshing

Your post was in no way insensitive. It was caring.

Withmy best wishes
AB

#7
Hi Lavelle,

If you look at the Carers, families and friends you will see that similar topics as you raise in your post have quite recently been discussed. We did not know that my mother=in=law had parkinsons until quite near the end. I had a good idea but was quite young at the time and did not feel it my place to interfere. As suggested, its a good idea to keep talking to the patient as hearing is the last sense to go. To me it seems as if you are supporting your father and mother as best you can and that is all anyone can do.

Kind regards