I'm back


#1

Probably for the last time though.

I do like the new forum. It's been quite a while since I shared my thoughts on the Parkinson's forum, I've had too many things to deal with and I needed to put my own mind in order before getting some of my thoughts down. This isn't the complete story as many of you carers of Parkinson's sufferers will understand. It's just a concise account of many years.

 

Over 15 years ago my wife, Christine, was diagnosed with Parkinson's, although in hindsight it had been undiagnosed for several more years prior to that. At the time she refused to accept the diagnosis because of the lack of what she thought of as obvious Parkinson's symptoms, but, eventually the disease began to make its presence felt.

For me, the worst part was the personality change. we had been warned that there would be one but that was it, there was no other information about what the change might entail. The result was that I was totally unprepared for the problems that beset her and had no idea how to deal with them when they came.

My only knowledge of this illness came from my father who also had it, but hand tremors and a bit of weight loss were the only symptoms I saw, so that comprised my only knowledge of this devastating disease, and nobody advised us otherwise. We were offered no counselling at all.

She had been suffering from a stomach ailment that nobody could find the reason for. Ironically, it was during the investigation of this ailment that the doctor who was treating her suddenly realised that it could be Parkinson's and sent her to a specialist. The stomach problem was eventually diagnosed as being due to severe depression. Over the course of the illness the main symptoms of depression changed focus several times causing me great confusion.

First there was the awful staring. Her day would consist of lying on the settee all day staring at the wall.

Then a change occurred and she wouldn't let me bathe her ("I would if I felt well enough" was always her reason for not doing anything, but she never did feel well enough), and she went several weeks before I put my foot down over it. I was afraid of her catching an infection. All this was contrary to the Christine that I knew, she was always fastidiously clean.

Then came another change and I wasn't able to get her out of bed until around five in the evening. Not going out, not eating properly, no interest in anything were other symptoms and I had trouble dealing with all of them.

The insomnia and audio and visual hallucinations, caused by the medication, really disrupted us. They got so bad that she elected to sleep on the settee to let me get a few hours sleep before going to work. However, the hallucinations got so terrifying for her, I had to get what sleep I could in the chair next to her to reassure and comfort her.

The Parkinson's anxiety tore me in two. She would beg me not to go to work and leave her alone because she was frightened, but she could never say why and I was pulled between wanting to stay and comfort her, and earning enough to pay the rent.

Then came the strange leg behaviour. She was looking out of an upstairs window when she suddenly began running backwards across the room, she couldn't control her legs. Fortunately she hit the doorframe and that knocked her over. I say fortunately because if she hadn't collided with the frame, she would most likely have continued out onto the landing and fallen backwards down the stairs.

She spent the next years in and out of five different hospitals, because the anti depressant drugs never worked for her. Twice we nearly lost her due to life threatening weight loss as she wouldn't eat enough to maintain her body weight which dropped to six stones at her worst. It was at this point that I was convinced I was going to lose her.

The only thing that pulled her round a little bit was ECT and, for a brief period I would have the old Christine back and she would gain a little weight, but it was short lived before she began sinking back again. Eventually she was put on a maintenance treatment of ECT, twice a week and then once a week until that too began to lose its effectiveness and eventually stopped working altogether.

All this left me bewildered, feeling helpless, baffled and frustrated and I've never felt so alone and isolated in all my life.

It wasn't until the latter stages of her life that I found that there was a carer's group that I could have joined to try to get some answers and support but it was too late by then.

Up until then I had no support whatsoever. I got her dressed in the morning and put her to bed at night, washed her, bathed her, toileted her, clipped her nails, cut her hair, cooked and washed for her, shopped for clothes and took her to every hospital/doctors/consultant/clinic/health centre in our local area.

The funny thing about all this is that I got a strange satisfaction in doing all this for her, on some level it seemed to fulfil me but I was very glad when retirement came as I was getting exhausted.

I'm not seeking plaudits for this, I only did what anyone would do for someone they loved and cared for.

Then her legs gave out and she had a fall that resulted in hospitalisation and Social Services insisted that she go into care, and I was very relieved that the responsibility for that decision had been taken away from me.

I found a nursing home 5 minutes walk away from where we lived so I was able to sit with her two or three times a day, although the third party top up plus extra fees was a great drain on our finances.

A good thing was that I could take our lunatic of a dog in to see her occasionally, that always put a smile on her face.

Sadly, earlier this year Christine lost her fight for life. She had spent the last 18 months lying in the same prone position with a tube, inserted through her stomach wall to feed her through. Unfortunately she got into an overflow situation and some feed entered her lungs causing pneumonia.

At 03:30 on the morning of May 4th I got the phone call that I had been expecting and dreading for at least 2 years. When the nurses checked her during the night they saw that she was ill and called an ambulance to take her to hospital.

Together with her daughter and her son, I was with her all day and elected to stay the night with her. I almost didn't because it never penetrated my brain that she wouldn't come out of there alive.

At 2315 I was alerted by a change in her breathing. The horrible, bubbling rattle of her breaths quietened down and they became fewer and with longer gaps between them, until they stopped altogether.

That night two of us died. I lost the love of my life, the woman I loved and whose care became my entire reason for being for over 15 years. It's a much overused phrase but Christine was my soul mate and then, suddenly, she was gone and to this day the pain of that loss has not lessened. It's as if someone has sucked all the happiness out of my life. All the colour has gone and there are only shades of grey left to fill the massive hole where she used to be. For so long my entire reason for being was to care for her and that had been taken away.

The frightening thing is what her death did to my self image. I've worked at some of the most dangerous jobs, in the most horrific conditions on this earth and always considered myself to be mentally tough and in complete control of my emotions. Then, all of a sudden, I find that I'm not as tough as I thought I was and that my emotions were, in fact, controlling me.

All I can say is thank whatever God you may pray to that I have a total idiot of a Jack Russell terrier. He has kept me sane and on track. No matter how much I wanted to sit at home and feel miserable, he has to go out and that gets me out of the house and stops me moping, and his antics make me smile, as they did Christine.

For a couple of weeks after her death I was a complete emotional wreck. I couldn't even speak at the funeral, because I knew I'd break down and start crying again.

Oddly, the hardest thing to deal with from my point of view was the sympathy offered by others. A word, a touch and I'd start weeping again and I hate for people to see me vulnerable because I was raised in a time when you never showed your emotions, because it was seen as a weakness.

That, however is not the end of the story, two things happened. The first involved a cactus plant that always flowered at Christmas. We had this for several years and, while it was flowering, I kept it on the window ledge of Christine's room because she loved flowers. This Christmas it didn't flower so I brought it home. Two days after her death it began to put out its flowers and then, after several days, the plant died.

The second thing was that I used to take Christine in her wheelchair to a quiet, isolated part of a local park, where we would sit and listen to the birds singing, look at the wild flowers and watch the butterflies that she loved to see fluttering about.

After her death I scattered her ashes in that part of the park. There are probably a hundred laws against it but it keeps her close to me so I don't really care.

One day I was sat there and feeling rather sad and sorry for myself when, seemingly out of nowhere, a Small White butterfly appeared and fluttered over the area where the ashes were scattered. I watched it for a while until I felt a bit happier and then continued my walk. What I did notice was that wherever I went that day, there was a Small White  with me although there hadn't been any out up until that day. Two even entered my home and attached themselves to the ceiling of the box room, and they are still there today. In the years that I've lived there, that has never happened before. Now whenever I see one I think of Christine.

It is, of course, only too easy in my situation to look for meanings where none really exist but I find comfort in this.

I like to think, that on some level, Christine's spirit is watching over me and the long, stressful and emotional journey that we undertook together somehow forged a link between us that even death could not sever.

In all the indignities that Parkinson's inflicted on Christine over the years, the one thing that stands out was that she never once complained or asked “Why me?” and that, to me, speaks volumes about the woman.


#2

Jim,

Thank you for posting your story.

Elegant Fowl


#3

What a moving story. Thank you for sharing it, Jim.

With all best wishes

Samdog

 

 


#4

Jim -

Thank you for your moving tale. i was going to write that you were lucky to have had each other - but I don't think it was luck. Then, that "you deserved each other" - but that's usually used derogatorily. Perhaps all I can say is, you were both lucky to have had a lunatic Jack Russell to make you smile.

best wishes

Semele

 


#5

Thank you, Jim, for sharing your story.  I cannot even count the points at which I thought, "Yes, that was my experience, too!"  My husband and I had over 40 years together in a marriage of such happy compatibility that most people seem not to believe me if I speak of it.  But you would understand.  The major difference, however, is that I am the one with PD; he died of cancer last year.  Like you, I see communication or symbolism where there may be none.  But these remarkable events foster a comforting belief in the eternal quality of love.  After a year, grief is still sharp; I trust it will soften more with time.  I wish you well.  Many of us on this forum are sure to remember you.


#6

Jim you made me feel so sad for you when I read your post. I too am a carer so understand like everyone else on here what you have been through. Please don't leave the forum we need people like you to explain to new and old what you have learned over the years.  You have so much knowledge and insight into Parkinsons you are a valuable member of this forum

 

Sue


#7

This is such a cruel disease, stealing your wife from you even whilst she was alive!!

 When i was a child my grandmother used to draw violets. After she died a violet grew in my garden!!! i like to think she was there with me . x


#8

If I was to give advice to anyone, it would be to the consultants and doctors. When you diagnose or treat someone for the first time, GET THEM COUNCILLING. So many times I was left bemused and uncertain by the various attempts that overtook us that I found it almost impossible to cope. To sit down and talk to someone would have made it so much easier to make sense of things.


#9

Hi, Jim!  I'm glad to see you're still on the forum.  Yes, the value of talking to someone really knowledgeable about PD can hardly be overstated.  And the disease takes so many different forms that it may take more than one counselor to get the advice or information you need.  Doctors or nurses who have seen hundreds of cases may still encounter something new in PD.

Best wishes for peace and contentment.


#10

I was going to stop visiting this forum but Sue's comment (and others) made me realise that would be rather selfish of me when there's always the chance that I could help somebody else. Christine would do anything for anybody so what better way to honour her memory than to try to help somebody else.

So, I'm not a councillor but, I will help if I can.

 

Incidentally, I don't send Christmas cards anymore. What I do is make a list of all the people that I would normally send to and work out the cost plus postage and then donate that to the Parkinsons society.


#11

Hi Jim,

           I haven't been on here long, but in the short length of time I have, the most important thing I have gained is knowledge of my condition. I try to make light of it, but deep down I know what's coming. The members of this forum support, amuse and educate, as well as distract me. Distraction is important......you can't cry while your laughing.

I go out with my wife when I can. If she is not around I tend to stay in because I have had several bad attacks of the shakes. It knocks the confidence sideways.

Like your wife I was afflicted long before proper diagnosis. I don't blame the medical profession for this, because I had other problems.

The last ten years of my working life were spent helping others during which time I learned a lot about myself as well as others. Prior to that it was man jobs.

I am so pleased you highlight the need for counselling by professionals. My GP is brilliant and did this for me. My Parkinson's nurse is a diamond.

I never believed it could be so valuable. Those last ten years of work, plus my GP and nurse have stood me in good stead.

Your initial post is quite scary. It is a valuable insight though. Thanks for baring your soul so honestly.

Like you I was a big strong man who feared nothing. I struggle to believe how hard I worked now.

I refuse to give in.

Again like you I married a wonderful woman who means everything to me and always has. She says I took care of her for many years when I was fit and able and doesn't flinch at what the future holds. She works with clients who have Parkinson's.

You say you don't want any medals for what you did......well I say bu**er that. Credit where credit is due. My wife has seen so many men run off and leave because they couldn't cope.

Thanks for this post Jim.

Orpheus.

 


#12

Marriage is pushed to limits you simply were not aware of.

Jim, your post is as honest as it gets.

 I thank my nature that I am generally a positive individual.

The real strength for me comes from people, always has, always will.

I am honoured to know of you.


#13

Hello Orpheus

 

Thanks for your comments. I'm glad that you have a good Parkison's nurse, I was never able to get in contact with them as their number always went to voicemail and no one ever called back. The problem is that there is no real test for Parkinson's and it can often be mis-diagnosed.

Facing this illness can be quite scary as it can impact on all aspects of your life and your body. Most people seem to think that it's just a little shaking of the hands and that's it but it can be so much more than that.

For instance it affected the sebacious glands on Christine's head so her hair was always greasy. It suppressed the blink reflex so her eyes were dry and sore. Her legs were badly affected as was her bladder and bowel and her ability to swallow food. When she eventually had a peg inserted through he abdomen to feed her through I would take different flavours of liquidised treats to swab her mouth out with so she could at least get a taste of food. Towards the end her ability to speak was lost.

The point I'm clumsily trying to make here is that the disease is individual. From what I can see it differs for each sufferer. Christine seems to have been an extreme case as I have a friend who has it and it scarcely affects him.

Don't despair, think positive, take one day at a time and get whatever enjoyment that you can out of life. You are fortunate to have your wife by your side, never be afraid to lean on her.

Good luck to you.


#14

Jim, you have no idea how much your initial message meant to me. I was like you when you describe your work and psychological strength. I was an engineer who ended up as a fitter welder in a quarry among other mucky jobs.

I looked like a tramp, my jeans were patched and the patches were patched. I nearly went through the primary crusher when I slipped helping the operator unblock it. I laughed it off. We had a misfire while blasting, which sent rocks flying in all directions (the blaster hit a clay back). The cat driver nearly went over the edge with a bucket full of gelignite and dets and me in the cab. Snow was the problem. We joked we'd have been in heaven in double quick time. I drove across a stretch of snow to a pump only to find a flood had frozen and allowed snow to make it look like the road, I got half way and sank. I worked all night many a time and did a 7 day week. Did I care.....not a jot. My life should have ended several times and all we ever did was make jokes about it. There were only two of us for the whole quarry.

The other lad took a liking to electrocution. He did this several times and as he picked himself up off the floor he used to say .....quick take us home to our lass while I'm fully charged. Fortunately quarries are 110volts not 240. Physically we both ended up wrecked. This is what masked my Parkinson's for so long.

Listening to you describe the pain and suffering and how it affected you made me realise my world is also changing dramatically. Meds are robbing me. I felt like a wimp. I am now getting help and this site is very much part of that. Hearing it from a similar source is poignant.

I have had some training in psychology, it did not prepare me for this. I am now starting to realise courage comes in many different ways. Your story is a very good example of that. Men don't show emotion like women and that's sometimes a bad thing. In my rough work days the phrase f*** off solved so many issues. Now it's a whole different ball game.

Thanks for helping me get some perspective. I have also received help from J of Grey and BA.

By the way I spent 10 years on my own between divorce and re-marriage. I empathise with loneliness. Finding the right partner is like plucking a golf ball out of a swimming pool full of them, all exactly the same, apart form one having a diamond in the middle. Sounds like you got a Diamond, so did I.

Tomorrow I go for the results of a prostrate biopsy. I got that diagnosis one day after the Parkinson's. I think the hospital was doing buy one get one free that week. J of grey gave me some much needed respite while waiting. She had valuable information.

My wife is amazing. She lost both her sons in a 3 year period a few years after we married. One had a brain tumour removed and it came back 2 years later. I was amazed how brave he was, he did not complain, instead he passed his driving test, got a car and a job he really liked. Her other son had an unexpected epileptic fit and choked.

Obviously she was gutted, but she held it together when others would have folded. She is not phased by my problem. She just dug in and came up with solutions. The key word is compromise.

Orpheus

 

 

 

 

 

 


#15

A beautiful and articulate account. Thank you for posting. 

I don't recall either my GP , Specialist nurse or Neurologist. Warning us about personality changes. We were left to discover all this the hard way. Maybe my ex would still be my wife if they had have. Health care professionals please take note!! 


#16

Just popped in to say Hi Jim. I should have been out this afternoon but my wife is stuck at hospital with one of her clients.

This is worth a mention Jim.....

I went with my wife to Asda last night. I felt really tired before getting there.

We went round and had started un packing / packing at the till.

I had my first public episode of freezing up. I felt completely stupid. I apologised to the assistant on the till and she waited till my wife had unloaded on to the conveyor and come round to pack. It wasn't a total freeze, just the inability to put things in a bag......how annoying is that?! I had managed four tins and felt like I was in a slow motion replay. Weirdest feeling I have had so far.

The check out lady far from being annoyed asked me what my medication was. I told her and she said,'my Mum is on the same' and chatted to me. The relief was incredible. People like that lady help restore confidence.

We go to Asda regularly. It is always friendly.

I recently read a report on here from a lady who received help from her train company. Maybe the world is becoming more accepting of conditions. I certainly hope so because I know I will only get worse, not better, unless a minor miracle occurs.

Orphy.


#17

Christine used to be bad with her freezes. I had to stand in front and hold her hands while she tried to walk Orpheus, you could see her legs trying to fire but not quite making it. The backpedalling episode was the most frightening. She just went running backwards across the room and hit the door jamb and went down. A few inches to the side and she would have gone backwards down the stairs.

I have had the prostate biopsy, embarrassing but nothing to bother about except that they found I had a prostate the size of one of Jupiter's moons. Eventually it locked up my waterworks and I spent 9 months with a catheter inserted until Christine's son could get off work long enough to travel from London to look after her while I was in hospital.

 

I see parallels between us, I have worked with things that go bang as a miner at Mt. Whaleback in Western Australia. Oddly enough, our powder monkey had Parkinson's and his hands used to shake quite badly unless he was preparing a blast.

Also, I've had to pull someone out of a gyratory primary crusher and it's not an experience I would like to repeat.

 

Never let other people make you embarrassed about your condition Orpheus, if they have problems with how you are then that's their problem.

 

Jim


#18

I know where you're coming from with this Chippins, the changes are sometimes the hardest to deal with. It changed Christine from a beautiful, happy, passionate outgoing woman who enjoyed life to the full, to a stooped, empty shell and it was heartbreaking to see it.


#19

Hi Jim,

            I know the condition is serious, but you made me laugh. A powder monkey with PD is so funny for the imagination.

Ours had a glass eye. He blew himself up accidently when he drilled into a 'pop' (boulder too big for crusher) he had already charged.

I had to take him to hospital one day when he got some grit in his good eye.

They fished it out and put a patch over his eye, then told me to make sure he kept it on. There are several times in my life I have required tenna ladies and that was one. Poor man stood there completely blank looking.

I know my days are numbered, but while I still can, I'm going to laugh......without being disrespectful I hope.

On another occasion the guy from the number 4 Mansfield crusher came into the garage while the chap form British engines was checking over our cats and ropes etc,

This guy was huge and had an uncanny resemblance to our Neanderthal relatives. His clothes were worse than mine.....topped off by a PVC jacket that was almost in shreds. The chap from British engines looked startled and asked......who the hells that? I replied.....the blaster. He just looked like he'd been blown up.

Unfortunately when the chap looked back at me quizzically I cracked up laughing.

On Friday I go out for a meal with good friends. When you say others have the problem, in this instance you would be right on the money. My mates wife is about 5ft nowt. Very pretty and usually very peaceful.....unless someone makes a rude comment. Then it's time to stand back and pray for the perpetrator. So I worry not. My wife takes a little longer to wind up.....but she is not far behind.

Thanks for making me laugh Jim, it's doing me more good than the Madopar. I still have the highest regard for you and what you did for your wife. I just hope she is looking down and laughing with us.

Orpheus.

 

 

 

 


#20

Every day I go round to the area where I spread Christine's ashes just to say good morning to her and to see if the daffs that I planted are sprouting and they are. Once the weather returns to normal and I can stop wearing water wings to go out I'll broadcast wild flower seeds over the grass.

Probably I'll do it just after rain so I can walk the seeds in. I don't want the birds to eat it all.

 

I haven't been on here for a while as I have had a busy period with my websites and I have a need to keep myself occupied because, almost 12 months on since her death I haven't even started to get over the event. I always say that no matter how far away you see death approaching from, it's still a terrible shock when he arrives. The depth of my emotional response to her death caught me by surprise and frightened me.

So, I maintain my websites, moderate a couple of forums, load ammunition and go shooting with my youngest daughter, take my Royal Enfield out for a run, play my guitars (very badly) and my dog takes me out for very long walks and that usually fills my day. Around 3pm I tend to run out of steam and settle down with a cuppa before getting changed out of my muddy dog walking gear. My excuse is my age (71 now).

 

Orpheus, hope you are doing OK.