Sleep problems in final stages


#1
Hi
My dad has had PD for the past 10 years and we are sadly into the final stages. He is now bed ridden and confused and hallucinating most of the time. He sometimes just doesnt sleep for 48hrs or so, its like he cannot switch off his mind. The GP prescribed Zopiclone but his consultant didn't really want us to use them and gave Clonazepam, but this doesn't seem to help him sleep.
Would be great to hear from anyone who has any experiences, I would love to find something to help Dad, its so hard to watch him not sleeping and his mind ticking away constantly.
thanks

#2
Hi,
I am so sorry to read about your dad,

I have no experience if this so i cant help however i know what I would do in you position,and that would be to make sure that my dad was getting some comfort. So I would give him what ever made him get some sleep.


[u]This is just my opinion of course[/u]
kind regards

jaylew

#3
Hi

Yes I shall probably do that, its hard thou when you get conflicting advice from the professionals and then you also read the side affects of the drugs and I can just tie myself in knots!

But yes its just best that he can sleep so will probably give them a go.

#4
good luck



jaylew

#5
Marjo,
It always makes me have a cold shiver when I read posts about final stages,it must be a hard time for your whole family.seeing someone you love and feeling so helpless.You posting on here wanting information,peoples experiances just shows how much you care.I wish I could give some advice but afraid a part from maybe giving the helpline a call thats it.
Thinking of you,Take Care Dot xx

#6
I feel the same dotty.

What might be the final stage for some individuals, after 10 years, is not the final stage for many others, even after 20 years, and more. I don't think the forum emphasises this enough.Some posts may really frighten newcomers to the site.Possibly, if we knew more of the age of the sufferer and any other underlying medical conditions, which might have contributed to the present situation, we may be less worried for those who are at the 10 year mark. I put ourselves in this category.

Posts like this upset me, no offence intended at all Marjo, but perhaps leaving out the 10 year marker, because every individual person with PD goes along the road at a different pace,might have been a consideration towards others.

Sorry to hear of your circumstances Marjo, and hope that you find something to help your Dad, very soon.You are obviously very caring and concerned at his situation.

#7
Hi

Sorry i have been insensitive and didn't mean to be. Not been on a forum before and because im just so focussed on my dad and on our problems wasn't thinking about others, Im so sorry.

If it helps to have further info, my Dad was diagnosed at 66 yrs and he has had a history of depression all his life, we are all individuals and this disease affects everyone differently, so who knows for him 10 yrs of this disease was enough to have this affect on him to this extent. I can only speak as someone who is watching someone they love very much have to go through these struggles, so my thoughts and feelings and experiences are so different to someone who has this illness.

Apologies for any insensitivities.

kind regards and my thoughts to all those struggling with this disease.

#8
Hi Marjo,
no advice except to say if, god forbid, i ever get to your father's stage i would want all the palliative help I could get, regardless of anything else.
one trouble with this forum is that it mixes people like yourself, who are caring for extremely ill relatives with people like myself, who one day, might be in that situation. Naturally, we dont like to think about that possibility and it can be upsetting.
obviously, its not your fault in any way - you have nowhere else to go.
what i think we really need are separate forums for carers of people in late stage and for everyone else. the problems and solutions and outlooks are all too different.

best wishes.

ps apologies to anyone i have upset recently on any other thread.

#9
hi marjo
posts that pass in the night!
you have not been insensitive. it is the nature of the forum that mixes carers and sufferers together that is the problem.

#10
Thank you, and yes I can see it would be best to separate the two.

All the best

#11
Thank you for responding Marjo and expanding on the facts. I really sympathise with your present situation. I too get sleepless nights and have done for a long time.The fact that your dad is in his 70's?and has other medical problems gives some hope that it will not be the same for those diagnosed in their 40's.

Thank you for being so honest and I really do hope you find a solution to your problem.

#12
Hi Marjo, I was sorry to read your post about your Dad not sleeping, it must be very distressing for you, and turning to the forum for help and advice finding little comfort

The truth is we all have pd and trouble sleeping, I have a problem relaxing on the go, I suspect that's your Dads cause for not resting due to mind not switching off. Every now and again the sleep deprevation catches up with me and I get rest, but with your dad's mind on the go so to speak is not easy.

I find things that make me laugh(I do have a strange sense of humour) helps me relax I am not sure what you dad's humour is like, also relaxing music, and a relaxing cd or tape where your mind is occupied as you listen to the cd, where you are guided into thinkin about peaceful place's
I wish you and your family peace and comfort
Kind Regards
Gill10

#13
Marjo, here comes a silly joke,

How do you make a mince puff?
Chase it round the garden!

Always makes me laugh... I think I do have a strange sense of humour! Sad isn't it
Gill 10

#14
Hi Marjo,

Gill10 has some great ideas about the music, cd or tape. I can empathise with you as I found myself in the exact same position not too long ago. What we did for my husband (even though his eyesight wasn't that good) was to put a TV in his room, he was always one to fall asleep in front of it so we gave it a try and though not 100% results, the sound from the TV made him less lonely and most nights he did eventually fall asleep. Can I ask if your partner is napping doing the day? Perhaps this is interfering with his night sleep.

On the other point about a different forum for carers, perhaps we carers should try to post these type of issues in the carers friends and family thread to avoid upsetting the people we so deeply care about. Thinking of you in this very very emotionally draining stage.

Maulihua