Late stage Parkinson's


#1
I would like to start off by explaining, that I do not have PD. But the reason why I have decided to join the forum is for two reasons. My father-in-law does and I work as a Health Care Professional (HCP) and from time to time come across people with PD. I would like to find out more about PD. I certainly know of its effect on my f-in-l. He lived with us for a month last year and to cut a long story short he in now in a nursing home. Even though I have read up on PD and even though my job as a HCP has made me perhaps more aware of PD. I still don;t know what to expect from the end stages. If this is a subject that is too horrible or raw for people to think about then please kindly disregard this message, as I don't wish to cause any distress to anyone. However, my own family often ask me, what next? will he go down hill further? All I can answer them is 'well he is being well looked after 24/7 - thats the main thing'. Can anyone offer any advice.

#2
Hello Pudular,

As a HCP, you will be aware that pd is an incurable (at present) degenerative neurological condition. It is also highly individual. So I am afraid that I at least cannot offer a definitive answer to your Q "what next, what can we expect?" I think that your A to your families Q's re your FIL is most appropriate. He is being looked after , being kept safe and hopefully is appreciating your support.

It is indeed a difficult subject to put forward, but it is one that I know that it is one of which that I and my small family are constantly aware

#3
Hi

I think that what anneberdette has already said is probably about right,everyone is different, it also makes a difference if the person has other medical conditions. The most important thing is being looked after well and making sure that your father-in-law has his meds on time and drinks enough water as this is a major problem in nursing homes.
My husband has had pd for almost thirty years but he was only 38yrs when diagnosed and it is very different than someone diagnosed later in life.
Hospitals and nursing homes are still a long way from understanding pd well and anything you can take to the home would help, you can get a lot of information from national office and download some, they also have a pack for people to take into hospital or a nursing which may prove useful.
my best wishes
vivian

#4
Hi Pudular,

My first response to your post was a gasp. It reminded me of when i was first diagnosed and had such awful thoughts, Yet i have found out since as others have said that each individual is different and there are often many more years before things get to, basically a desperate state. But back to your question....a very brave one that i don't think anyone on here has yet been able to answer? possibly because those on here are pwp and haven't got to that point in their lives yet? so i guess your answers need to come from other carers/h.c.p.

This is of course a very difficult reality for pwp and some may be realists (like me) and others may just not want to know (very understandable) BUT is certainly a question that i think somewhere on this forum needs to be answered!

Maybe this needs to be moved to a new thread/topic where only people who want to contribute/read this information can be/feel confident /brave enough to do so??

Thank you for raising this delicate topic.....any help/advice/support moderators?? most welcome.

Diane

#5
hi pudular,welcome to puk forum,im ali i was dx 11 years ago,im 43 years old now.there is a lot of surport on puk forum,and good freinds to be made.about final stages though ,ive read up about it,and spoke to me neuro about things,the other best thing for me was speaking to puk helpline,they are very patient,and very good advice.it helps me,i worry about the futre along with many other pd suffers,but end of the day ,we are all different,i went to a puk get togeather at stratford upon avon ,young onsett,and to me there was not person there the same as another,different things ,some had tremor,some not,and so on.so i guess wot im tryin to say is,speak to his neuro,or pd nurse,or give puk line a ring,they all will be very easy to speak to,and fill in the answers you and your family require xgood luck x:smile:

#6
:stuck_out_tongue:

#7
Hi all,
Thanks for raising this, Pudular.

Drobb, you're right. It is a very sensitive topic and it may be the case that more people in the community would like to discuss it. If that is the case then starting a new thread is a good idea. If this is problematic for some, we can talk through that but I suspect that community members know their minds and will not follow the thread if they feel the issue is too much right now.

This is actually a priority area for us over the new few months. We have recently produced two publications which might be helpful to you.

Preparing for the end of life: a practical guide which you can find here: http://bit.ly/JyymTb

and

Preparing for the end of life: an emotional guide available here: http://bit.ly/JAiYUG

I hope you find these helpful.

Ezinda

#8
i am concerned that some (not all) newly diagnosed people may be upset by this subject. i know i wanted to find out but others are more delicate. my personal opinion is that the carers section should be more delineated, not separate, but better defined as an area that some may want to avoid. perhaps the menu hierarchy needs to be altered. i dont know whether this is covered in the new design.

#9
Hi turnip,
I see your point.

If you all wish, I can move these last few posts to a new thread in the carers' section? Do you think that might be better? I can inform all who have posted to avoid confusion.

But I'm afraid we're not far enough in the process as yet to know what the order of the forum will be.

Ezinda

#10
Hi all,
I've moved this from the Meet and greet section to the carer's section. I'll send you all an email just to make sure everyone is aware of the move.

Ezinda

#11
I know its my own fault for reading this thread but i feel quite down! I wish i had never read it! Im usually a positive person, of course i worry how my pd will progress in the future but no one really knows.
Maybe you could use a symbol in front of touchy subjects?
Please forgive me for moaning im not having a good day, my head feels spaced out, arms are useless and sciatiica pain is terrible! To top it all pc is knackered and im trying to use a tablet (not easy) which bright spark invented touch sceen? Not a pwp!! Oh well got a visit to see my consultant in an hour, that will be fun.
big c
Ps i know there was a clue in the title but im inquisitive! :flushed: :disappointed:

#12
Hello Pudular,

Raising this subject is very important for both pwp and relatives. This might seem insensitive but is very necessary these days, people need to think before they get to this stage what they want to happen: for example do they wish to be resuscitated or not? as if they haven't a signed written form and the ambulance is called they [u]have[/u] to resuscite, you would think this would only apply to people at home but it can also apply in nursing homes if the person on duty calls an ambulance and not the local doctor who certifies death. This has happened where my friend works as a senoir care assistant and she found it so destressing she was off work for the rest of the week, this should not be happening in my view. My husbands dentist has just told me that if someone chokes as he did last week they are told they have to leave the patient until really blue and then us CPR. this may shock some of you but this is what is happening [u]now[/u]
In my husbands case the nurses in the home eventually managed to loosen the peice of meat that was blocking my husbands airways but it was a near thing.
A Few years ago we both agreed that we did not wish to be resuscitated and have forms to that affect and we also do not wish to be peg fed or tube fed only kept comfortable with a tube for the medication . my husband has also donated his brain to research at the tissue bank, they do need both pwp brains and non pwp ones to advance the research for the future.
For all concerned it is also important to discuss financial details ei:we set up enduring power of attorney for both of us and our son is also on the form too, in the telegraph at the weekend there was a letter where a wife was suprised that most financial things including the house were in her husbands name only, this really is bad as if he needs care it will all get taken to pay for this and the wife will be left nothing, they cannot make her move out of the home but it will have to be paidback at a later date.
I am truly sorry if this upsets people but they are things best sorted out earlier as it will help and coping with these later stages are hard enough without these complications.
So Sorry it is so long.
my very best wishes
vivian

#13
Sorry Big C,
I have just added to your feelings of gloom, but these are important issues and once put in order you can forget about them. Some people feel a sense of relief that they have everything in order and none of us know when our time will come. I hope you had a good visit with your consultant and feel better tomorrow.
best wishes
vivian

#14
Thanks Vivian i do understand what u are saying and sadly have read how you have cared for your husband for over thirty years. You more than most know how pd affects our future.

I had a good meeting with my consultant, he is really pleased with my progress (i was dx 3 years in Aug) and am stable. Im feeling much better after seeing him.

Of course my husband and i have talked and made plans for the future but i hope thats a long way off!

C

#15
Dear Big C

I am like you don't want to know the outcome but very curious also. I have read books and done some research. Only wishing I had not and realising I should of listened to what others said, not too!!!
Anyway to late done! We are all different as to how we cope with this cruel disease. I have to be hohnest and say that PD has ruined my life and my plans I so hoped to have.( As it has others.) But I will deal with it. So don't look to far forward .

love from PB x Good luck (think we live close by Big C)

#16
Thanks Posh Bird im pleased im not on my own! Bl....y pd ruins plans if you let it!

Do u live near Beverley? I remember you saying in the past u live near by.

Lv big c

#17
I may be being unduly optimistic (not something I am often accused off) but it is not necessarily true that people starting out on this long road will end up in the same place as people who started 20 years ago. If you compare what is now known with what was known then enormous strides have been made. Twenty years ago the best surgical technique was a relatively crude cut made to some tissue, now electrodes can be inserted without damaging any tissue, the very nature of cells have been changed by altering their internal constituents with modified viruses. It is good to be prepared for the worst but i have hope, reasonable hope I believe, that for at least some of us, a different destination is in store if progress continues at the same rate.

#18
Hi turnip
What you have said is very true. Medication has improved over the years.
(for some at least)
I was feeling a little down myself yesterday. Had to wait ages in the waiting room to see my Consultant got agitated and sat there can be so depressing. These dear people in there also just waiting, made my heart sink!!! Really felt I should not be there. Got called in by the nurse, then broke down in tears...whatever is going on with me.

(Sorry not a nice quality self pity) I give everyone on the forum my deepest respect and the way you all cope so brilliantly. You are just amazing. Keep going!!!!!!!!!!!

love PB x

#19
we all feel sorry for ourselves sometime and quite rightly! and this is the place to express it.

#20
Thank you x:smile: