New carer here-should I reduce my working hours


#1

Hi everyone

My wife was diagnosed with PD last Wednesday. Happy New Year to us!

This came as a shock to us as she was only going to get some tests so that our GP could rule PD out.

My wife is 54 and I am 55. We have two boys aged 21 and 14; we haven’t told them yet.

My wife’s symptoms are I think relatively mild at this stage. Some hand tremors and some anxiety/OCD. It was the OCD which she originally went to the GP for. She walks a little slowly and since the diagnosis we have realised that her handwriting has deteriorated over the last couple of years. she now has medication (levodopa) which she started on Friday.

Meantime I have been doing a crash course in PD and it seems that its an entirely unpredictable condition and we have no idea of how and how quickly my wife’s condition might deteriorate. that makes me wonder about the length of time that we might have together whilst the quality of her and our lives are not so bad. Fortunately, I have been in a well paid job for a few years and we have some savings and pension. I wasn’t planning to retire for another five years or so but who knows what our lives will be like then. I largely enjoy what I do at work but I’m seriously thinking about reducing my hours and salary of course so that I can make sure my wife is looked after and we make the most of our time together whether that is 5 years or 25 years whilst the PD takes its course.

I’m conscious thought that this might be a bit of an overreaction given the shock we have suffered this week.

My brain is spinning with all this and I feel that I need to make a decision on this so that at least I have done something positive!

any thoughts, positive or negative, would be really welcome.


#2

Learning as much as you can about PD is a must. Better the devil you know…

The first think I learnt when diagnosed 6 months ago was - everyone is different.
Progression is usually slow there should be plenty of time to adapt to the changes.
Medication can take a few weeks to kick in so you have to be patient while waiting to see how effective it is.

Medication hasn’t stopped the tremor but has improved walking.

My first decision after diagnosis was to book another Baltic cruise. Coming from Australia, that’s a big effort. We decided to get the big travels out of the way while I still can.
If the PD progresses slowly, we can always ‘do it again’ later.

I am at a similar stage to your wife and I am planning for a few more ‘normal’ years before I have to make major changes to the day to day living.

All the best,
Jim


#3

Hi Seansdad,
A tough call, and a tough way to start the new year. Everyone is different (ever heard that before?!), as are their circumstances. I would be inclined to let the dust settle and not make any major decision in the heat of the moment, and see where things are at in a couple of months and how you are both feeling about the situation.
Working life has its pros and cons…it is a matter of weighing these up and prioritising what works best for you as a family. Obviously a certain amount of income is needed, but how much , is complete personal …Lionel Shriver’s book, “ So much for that” is an excellent vehicle to discuss these kind of issues…set in America and one couple’s struggle with the health insurance world and trying to do what is “ right”despite everything. Certainly made me stop and think about what really matters and in whose interests we live out our lives,
My work environment had become v stressful so the decision to reduce my hours was not v difficult to make, and certainly eases the pressure …My husband is further down the line than your wife ( though it is not a single or straight line I hasten to add), but if your work is a source of satisfaction , stimulation , distraction, company and well being etc etc then that could help you to cope with whatever shape PD takes in your lives.
It is a many layered thing…apart from what you would want to do, or think you should, there is what your wife wants, and how she feels or would feel about any decision that you take. It can become a bit of a minefield, hence all the more reason to take time to think things through calmly and rationally, with or without the help of someone outside it all who can be a neutral voice of reason and sense.
Best wishes, Pippa


#4

Hi Seansdad

Another one here who thinks you should take your time and not make any major decisions yet, let the dust settle and see how things are, how you and your wife feel in 6 months or so. Unless you are very different from the rest of us, this will make you both reappraise your lives, look again at what’s important to you as a family and a couple - not necessarily a bad thing. Chances are Levodopa will work well for your wife and you may have a number of years yet before PD has any big impact day to day.

Best wishes to you both from another spouse/carer.


#5

I wholeheartedly agree with the general view of not making any big decisions now, it may not feel like. it with the shock of the diagnosis but you do have time to take it steady and get used to the idea. It is a life changing condition and not what anyone would choose and affects everyone, not only the person with PD, but neither is it all bad. It is common to feel that you (ie, you, your wife, family etc) have no control over what happens now and as to the future…who knows. Well it is possible, to take back some control and I firmly believe that to do that you need information, information is power. The skill or art if you like is timing. To delve headlong into all available information is tempting but is likely to be totally overwhelming and by default counterproductive. So take some time now before making any decisions to think about what you want to know now and find out about that - the Parkinson’s UK website is an excellent place to start, there’s loads of info and a helpline. I would also say do your best to keep the lines of communication open. This should help you both to clarify your thinking. You will find a way to live with this, we all do, in our own way and in our own time and it may not be the life you and your wife were planning, but it can still be a life worth living…Wishing you well for these early days, just take them one step at a time, that will do for now.


#6

I’m so sorry, Seansdad, to hear this news about your wife.
I agree with everyone’s comments … take time, take it slow, especially since you enjoy your work. This stimulation from your work will help greatly in the early days.
The shock will wear off. You’ll know when to tell the children, together. Your wife still wants to be a part of your decision making, your life.
Breathe, be together, take the time … as it all unfolds you’ll know what to do …
I’m carer to my mother who has suffered PD for over 30 years…though I’ve only been here with her 24/7 for 6 years. PD is a roller-coaster ride for both the patient and the carer. It is scary. It is quite disgusting and relentless. It is changeable. But we’re helping a loved-one so we continue.
xx


#7

Thanks everyone for your replies which have been really helpful. Ten days in, things have changed, for the better I think.

I’ve realised that in amongst all of the feelings and worries that my wife has, the last thing she would want is for me to change what I do resulting in her worrying about me and about how we could afford retirement and other things. Practically speaking she is OK and it would be quite hard for someone who doesnt know to say that she has PD. As a result it would be quite easy for me to simply carry on with work and family life as normal and ignore the diagnosis. that won’t happen of course - at the moment I feel like I should do something even if I don’t know what that is.

I guess that carrying on as normal whilst gently reminding my wife that I am thinking of her and am keen to help is probably the best course of action whilst we try to get used to this change in our future.

Thanks for all of the wise advice - you don’t know how much you have helped!


#8

I am sure I speak for all when I say you are welcome.

If. I might add in here and I stress this is only me speaking so you must do what’s right for you but in being keen to help don’t translate this. into taking over, it is not easy to watch someone you care about struggle or appèar to do.
Second I decided once I had my diagnosis to tell folk sooner rather than. later, that way nobody was guessing and by the time it became obvious it was old news. Knowing people wouldn’t know what to say or how to respond I used that and basically said I havè something to tell you, you don’t have to say anything now but as you are ready …or words to that effect. For long distance friends I wrote along similar lines so they weren’t put on the spot in a phone call. From the beginning I have. said. you can ask what you like, if it’s too close to home I will say so. It wasn’t easy to keep repeating but once the news was out it was one less thing to think about and importantly it came from me, It was and is the right way for me, it may not suit your wife but it is perhaps food for thought…


#9

Hello seansdad,you might be studying about PD but does it cover the hatefully thing you might say to your wife on her travels through her journey of PD,I 've heard all of the people who care for PD sufferers that they all seem to have this hatefully streak come over them,my wife really hates my guts now,I’ve only been diagnosed for a year and we were once very loving towards each other,now as 've said changed about 3 months ago,I’m 63 my wife’s 68 nearly,and calls me from a pig to a dog,(she loves animals at that)and says she can’t wait to leave me,which in turn is making me very suspicious of her and setting little trap’s on our gate and door that’s locked when I take my dog out in the morning,sometimes the trap’s have been let of,and she says she hadn’t,t been through the door,sonwho’s coming innit I’ve asked he and she’s denying it,these type of thing come along on the PD journey so be aware when they start happening between the pair of you,bye.


#10

Hi @Wag,

First of all, I’m so sorry to hear that you’re going through this with your wife. As you know, Parkinson’s affects everyone differently and for many people with the condition, the side effects of the medication can change a persons behaviour.

This can be very heartbreaking for people on the receiving end of this which is why we have different types of support to help you, such as our local groups, meetings can be informal - a chance to talk and discuss worries and experiences. You can find more information on this here - https://www.parkinsons.org.uk/information-and-support/local-groups

We also have a team on advisers via our confidential helpline that would be more than happy to offer you
more support on this. Please do give us a call on 0808 800 0303.

Do take care,
Reah


#11

Wag, I’m sad to hear this about you and your wife. The amount of pressure on someone’s attitude towards something as life changing as PD definitely will effect their behaviour towards the person with the PD.
However, please remember that it has always taken the two of you to live your marriage. Now you must continue to talk things over together. Keeping it all bottled up inside is worse than the angry and hurt outburts.
I’ve been with my mother 24/7 for 6 years now. I’ve got to know her pretty well in this time. She’s had PD for over 30 years and she can’t help the way that she thinks, does things, dribbles or anything else.
I’ve had to learn to change my attitude again and again, as her needs have changed and the PD has increased a level. But it sure has been a struggle at times.
Your wife must be going through similiar feelings of negativity. Does she want to have your lives changed by this? Does she feel she can stay and care for you? Does she want to be really nasty by pushing you away like this with words that hurt?
Well, after all is said and done I have to tell you that love does conquer all in the end. And that end is very close indeed. I reached out and found God and can’t remember the times I cried asking, begging really, for His help.
As a widow, with no one to ‘‘talk to’’ anymore, it’s been so hard. And I can say is that without my faith that God does help, and is there, and does give me the strength to cope every single day, I would not be able to be here. I do hope that you will both be able to sort things out, be together and united, as you face whatever comes ahead.
Reah is right. Do give the support line a call too. I did and they help so much.
Take care and love to you both XX


#12

Hello thank you for your reply,my wife’s,s still here with me,and now she says she,‘s sorry for the hurtfully things she,’,s said to me in the past couple of weeks,but still she has a go at me for just standing there stating at things,I know I stop and stare at things,but I still do things around the house,over the lest fortnight fitted flotex in my bathroom and toilet and also I,'ve degrouted all of the tiles in he bathroom and re grouted them all in again,I’m trying not to let this stupid Parkinson’s thing rule me,but every time I get going get forward someone or something knocks me back two steps,things are really starting to get to me,bye.


#13

Hi there Wag, and lovely to hear from you.
So sorry about all that is happening to you right now but please believe me when I say that these things will pass.
Your wife, poor thing, has been shocked and overwhelmed. Her reaction was to hit out at the person closest to her - you. She is ashamed and sorry - of course she is - but there is nothing she can do when her words fly out because unfortunately she cannot suck them back in, can she? She must be all mixed up and frustrated … just as you are …
As for the fact that you go staring … I’m sorry to say that I’ve found this to be classic in my mother’s case. Not only does she stare off into the distance, but she does this when I talk to her, and I’m guilty of flying off too. This hurts her, I know, because she is not so quick to respond back like she might have done without the PD, and so if I don’t apologise straight away as I’ve said something to hurt her then we could end up having a very bad relationship indeed. Once PD has been diagnosed ‘stress’ is an absolute hell for you.
My mother’s PD has lasted for over 30 years in total. Now I’m her sole carer after my Dad died in 2017. During these 18 months she has deteriorated a great deal, gone slower, shuts and opens her eyes for no reason, hallucinations at night, unable to sleep at night, nightmares that seem so real that she wakes me up just to tell me that she can hear people talking about the Bank of England running out of money! I sit with her until her agonies lessen. I let her talk herself out of it.
It’s never easy … for you the sufferer who is still inside there somewhere but can’t quite make things happen quickly, suddenly or sometimes not at all … and for the carer and loved one who misses the old ‘you’ …
Human behaviour is very peculiar. The one thing that we all agree on, if we are half decent, is that we love, show patience, and a great deal of care when we do things properly, but we can also deeply hurt and yes, even become angered, when PD or some other disease hurts and hits our lives. We are also creatures of habit to some extent … change does not always suit … but change is necessary and with it comes awakening - in you with PD and your wife too as she grows in her own life’s experiences.
Also, I can honestly say that having lost my late husband very suddenly and coming back to live with my parents and care for them in their own home was not a happy choice for me. I knew the difficulties of caring for older relatives … but I got stuck in and did my best. And I found God. Without God I don’t think that I could have coped or had the right attitude to continue to be with my mother whose changing PD has been a roller-coaster of a ride. I feel that I have grown spiritually so much that I now hardly know myself … because I care for my mother, and because the relationship that we share is built on firm ground, because I will be very sorry to see her go ‘home’ one day and will miss her terribly, but also I will have got to know her like I might never have done had we not had this experience together.
Please be patient with your wife. Please talk to each other. Communication will be your everything in the end as I’ve found out with my family. I like to watch/learn from the videos and educate myself about PD because it can be a shocking experience, and I try to keep my family educated too because it helps them to talk and communicate with my mother more easily. But people only do what they want to do and if they don’t have to, or they don’t want to, then that’s another thing altogether.
I’m thinking of you both. I’m praying for you too. This is not easy, believe me, but it will pass and get easier for you both. Love, the right attitude, communication … all very important … but so also is respect.
Love to you both.
xxxx


#14

Hello,we seem to be OK for the time,but she still has a short fuse now and again,we have talked it over,must have had some impact on her,as she says she still loves me,but there it stops,no love making or kissing,but she’s disabled and 67 years old and I’m 63,I suppose we’ve gone by they stage now,bye.


#15

At every major junction in our lives we change. Sometimes we embrace those changes. Other times they overwhelm us because we cannot go with what’s in front.
As a believer, I find that God has a plan for each one of us. He waits patiently and calls to us quietly. I chose not to ignore those calls and have never once regretted that decision because the joy and freedom I feel in my soul is amazing.
Men and women, these days, like to think that they are equal. In some ways of course we are. But emotionally…well, men have different needs I suppose. When your PD was diagnosed and the symptoms became apparent within your body you must have fought, flailed against the sheer miseries of it all. Why did your life have to change anyway? Who can I blame?
My own understanding has been that where there is ‘love’ then everything else will follow on. The fact that your wife cares for you, says she loves you, means a great deal. You’ve both been through a great deal and it takes a while for it all to sink in. Amid all of what life is throwing you daily comes the chores that need to be done. For a wife/carer this means extra duties … by the end of the day perhaps she is too tired to think further than sleep … lovemaking the farthest thing from her mind … and perhaps if you instigated the kissing, albeit at a tender ‘‘kiss goodnight on the forehead’’ or ‘‘kiss on the cheek’’ kind of thing then she’ll come around to another way of thinking of those loving moments you both shared once…
Hope always because if only your knew it, you are loved so very much by God, and if you asked Him to help (no matter what help as none is too large or too small if it’s your help you need help with) He will help you.
I know. I’ve been there. He helped me. And He helps me every single day.
My prayers continue for you both.