Awful


#1
Parkinson's is a God-awful disease isn't it? It impacts on so many areas of the sufferer's life that it's unbelievable.

I've watched it strip my wife's life away, inch by inch, for the last 10 years. She's gone from a happy, confident and beautiful woman to a bent, shuffling little old lady well before her time.

In all this time I've coped with her needs, even when I worked at the same time. Now I find that, on occasion I'm struggling. Neither of us have had the retirement that we'd hoped for as this ailment completely rules our lives.

She's now at a stage where she needs help with everything that she does and I'm battling (on bad days) to feed her and to get her to take her medication as she has trouble swallowing.

Until recently she's been on an experimental maintenance treatment of ECT to try and stave off the depression that's hospitalised her five times so far. When the depression strikes her weight drops (as far as 6 stone on occasion) to a life threatening level.
Unfortunately the medical team have had to stop this as she's taking too long to recover from the anaesthetic.

Now I fear that she's dropping back into depression. At 68 years old I find that I cannot cope with her at times. I have to dress her in the morning and help her to move around the flat because her legs freeze. It's got so bad that I've brought her wheelchair upstairs so that I can move her into the bathroom for the toilet.
I feed her and manage her medication, bathe and toilet her and prepare her for bed. Generally I'm OK with this and can manage but when she gets loose bowels and I have to physically manoeuvre her into the bathroom and onto the toilet I find I have a battle on my hands, plus the cleaning up afterwards.

Now I have to consider the unthinkable as I can see confusion setting in with her. Do I look at trying to get her into somewhere because I can no longer cater for her needs? Or do I struggle on trying to cope? I just don't want to make this decision.

I get backup from Social Services but help has to be booked and the nature of her illness is such that she's up and down and I can't predict when I need somebody here to help.

I have a visit from the psychiatrist that's treating her, this week. I dread the decision that I have to make.

#2
Jim , I am so sorry that you and your wife are going through such difficult times. . Maybe the decision is now out of your hands? Perhaps let others guide & advise? At the very least you can ask for & expect help with bathing & dressing for your wife
ECT for depression? I thought that went out with the ark

#3
I sincerely beg your pardon Jim. I checked with a psychiatrist friend who told me that maintenanance ECT is still widely used for severe depression.
You have done & continue to do all you can for the wife you love. I feel sure that whatever decision you come to, with imput from your wife & the psychiatrist will be the best one - for both your wife & yourself

#4
Hello Jim

I'm so sorry you have to suffer in this way. I can completely understand your pain.

OH too has changed so dramatically over the past two years, that I don't imagine it will be long before things get very tough indeed.
You have to feel on top of things to cope, to be caring and loving. When you feel you can no longer cope, It is time for you to think of yourself.

#5
Hello Jim

This is a most difficult time for you and your dear wife. But if the caring for your wife has become to much for you, as sad and as heartbreaking as it is, you must do what you think is best for you both.

PD is a cruel disease not just for the patient but for all the family and loved ones.
Regards PB

#6
Hi Jim,
I am sorry for the torment you are going through.I have watched and helped cope with both my Father in law and Mum,as my Mother in law and Father struggled to the point of exhaustion to care for them as long as they could.
I would guess that the social services have already advised that you must start thinking of yourself and what is now the best option of care for your Wife.It depends on the extent of confusion setting in on how you can form a proper decision.
Guilt is the driving factor in struggling on,how can i give up on my Wife who i pledged to stand by,as well as the love you still feel for the Wife that you new,is still,are desperately clinging onto.
There comes a time however,and by posting on here as you have,i feel is close.That you have to start thinking of yourself.This obviously means a care home environment if social service home care and respite has been exhausted.You will feel the same way as my Father and Mother in law.Guilty,selfish,sad/depressed,and once it dawns on you,lonely.
However,you will be able to sit back and rest,breathe in properly without that tight stressed out feeling,enjoy time to yourself,time you have earned and deserve.It is not your fault,your Wife will be cared for properly.You can visit as long as you like,overnight stays are usually allowed.I have helped my Dad and Mother in law through the same.
Finances are a matter you will have to look in to.All i can say is that both my Dad and Mother in law both say they did the right thing.Us,as their children encouraged and supported them,i hope you have the same as it will be important to know they are there,as you will find that you will need support during what is really one of the most difficult decisions anybody has to make.
I am surprised that E C T is still in use,i was a trainee psychiatric nurse back in the eighties and have witness its use.I personally did not agree with it and feel it can make matters worse rather than improve.I really did not realise it still exists.:disappointed:
You have my admiration,sympathy and best wishes,you will hopefully know when the time is right,but can still support your Wife by visits as often as you desire whilst protecting your own sanity and health in order to enjoy a life you also deserve.
My Dad is happy and rested,my Mum is content and cared for
All the best
Take care
Titan

#7
As Annebernadette mentioned Titan. ECT is still widely used for treatment of depression.
However, a maintenance dose of a monthly session is not. It was run as an experiment because the drugs were not holding the depression in check.

It worked though.

#8
Hi Jim,
Sorry about mentioning it again after Annebernadette.Was just reconfirming something i found important and moving from my past,which i thought relevant.Back in 1984,nurses had a choice in whether or not to be part of the procedure.Many wouldent,it was controversial.Being an area i have not seen mentioned on this forum before it thus stood out and thought it worthy of mention.Word had it back then that it would be abolished because its long term merits were questionable.However,i am pleased it has proved beneficial to your Wife.Apologies if my view on the process upset you in any way.
I fully understand what you are going through,i thought that having been through the same process.It may have in some small way of helped,knowing that there are others that sympathise and have gone through the same agonising decision you face.In fact my Father will be here soon before visiting my Mum in the care home.Unfortunately this is an area of parkinsons many forum members feel uncomfortable with.Replies are usually limited,as many of us with pd find it very hard to think or contemplate the awful decision and future as you are relating.
Hope everything works out for you,
All the best
Titan

#9
The situation has now been taken out of my hands. On Friday she had urgent need of the toilet. I was out with the dog and when I got back she was sat on the end of the bed crying.
Although she'd managed to get out of bed she was unable to walk to the bathroom and it was too late.

Luckily she had a pad on but she was very upset. I rang NHS Direct to see if they could get a paramedic round to help me get her into the bathroom but they could only advise me to call the doctor. This would have meant her sitting there for several hours.

In desperation I lifted/dragged/carried her into the bathroom for the cleanup and placed her in front of the toilet. I turned away for a second to get a disposal bag for her pad and her legs gave out and she crashed to the floor.

I dialled 999 and the ambulance came pretty smartish and it took the crew of two plus myself to get her up and cleaned.
They then took her to hospital for an x-ray which revealed a broken femur. They are operating today but it's going to be a long job.

#10
So sorry to hear your news Jim, I do hope your wife pulls through it all ok.
Best wishes to you both and chin up !!

Glenchass

#11
I do hope your wife gets better soon Jim. Your dedication and selfless support for your wife is beyond compare. My very best wishes

#12
I am sorry Jim. Just one thing - if you are feeling a measure of relief amidst the pain, please do not feel guilty. I say this because after 5+ years of caring for my (non-pd) mother, she went walk about in the middle of the night. This was the catalyst for her receiving the care she needed but which I could not provide. I felt guilty, sad, but also relieved & guilty about feeling so.
I know that your situation is quite different & if I am ascribing feelings to you which you do not have, please ignore me
My best wishes to you & your wife

#13
Jim. So frightening, harrowing and exhausting. Now the waiting. My thoughts are with you. Take care

#14
I hope the operation was successful that your wife is at present pain free and you are getting some rest.
Perhaps you will now get, re the welfare care in situ, the help and guidance you need to make decisions for the future.

#15
Jim,

your wife is a very lucky lady: she has you.
You now have enforced respite care: look after yourself. Easily said.

Thinking of you.

mrs.t.

#16
Hi Jim,
This is fate calling Jim.Intervening,allowing you space,discussions with health professionals about the future.The same situation happened with both our parents.Feel for you.I hope everything works out for you in the best possible way for both you and your Wife.
Take care
Titan

#17
Jim, I think Titan is right...you need to take care of yourself now. Your wife is blessed to have you in her life, but you can only do so much. My daughter has told me that she has told her children that they are not to put her in a home when she is old, but I told her that with my probable dx of PD, I won't hold her to that on my part. I know that someday I may need a home, also. I give her & her brothers permission to do so when the time comes. I just hope to be blessed with a good home...that they really do their research first. The possibility of this is scary for me, but my daughter has a heart condition, and her husband, tho in good health, is my age.....so I know it will be for the best.

I'll light one of my candles for you and your wife tonite....hope her operation was a success....try to get some rest now.....

#18
My best wishes to.

Much the same happened to my dad, he had a fall, more minor than your wife's and ended up in hospital. He then went to a nursing home where he had excellent care.

#19
Dear Jim

I had already posted my "why me" self indulgent piece because I am at my wit's end. Then I read what you do....I think now is the time for your wife to go into a care home, you are entitled to your life as well. Putting her into a care home, if you can find a good one, wouldn't be a cop out. I hope you are brave enough to do it. You have looked after her so well but now is the time. I just wish that I was as brave as you.

#20
Good luck, Jim.