Ever since I found out my stepdad has been diagnosed with Parkinson’s, I’ve found myself struggling with a lot of anger and rage at the situation.
His decline has been very quick, he’s gone from fit and active to chair/bed bound and recently diagnosed with dementia. My mum is his primary carer and I’m doing as much as I can to support her (she’s a rock and is truly incredible…like all the carers out there).
Constantly on my mind is how unfair this terrible disease is, I feel hopeless and it adds to my anger. I’m considering going to see the doctor to get counselling, but I’m wondering if anyone has had similar experiences and advice.
Sometimes I think I’m stuck in a stage of grief knowing what the inevitable outcome is, sometimes it’s anger at myself for feelings of guilt. I don’t know, it’s all just horrible seeing someone you love decline so quickly and everything around that once felt normal just starts crumbling around you.
I don’t mean to come across as selfish, I’m not the one who is ill, but I need to be the best person I can be to support my mum and my stepdad.
Hi Pixelope, It is my husband who has PD. I’ve read your post and would just like to say that your feeling of anger is totally justified so please don’t feel guilty or selfish. I too feel very bitter and angry that Parkinson’s has come into our lives and taken away all our plans for an active retirement. I try to remember we certainly aren’t the only ones affected by this most cruel of diseases, but there are days when you just want to vent your frustrations. This forum is a good place to start. I wish I could offer you some advice. It’s great that you are supporting your mum as believe me she needs it. I hope others who read your post can offer more. I just wanted to reassure you that the emotions you are experiencing are totally understandable. It’s often far too easy for others to judge if they’ve never been in this situation. Just remember you’re not alone and please keep sharing your thoughts here. Best wishes, Jean
My wife was diagnosed several years ago I have felt over the years a growing anger in me, being her carer I am exhausted and some of the language I use believe me is not for this forum !
I used to feel that I was selfish and uncaring but over the years these feelings are no longer there, I now feel bitter that my life is ruined and straight away I feel guilty at writing this down.
Hi…I can totally understand how you feel…my husband is the one with PD…somedays I could scream with the anger and unfairness of it all… He retired 3 years ago as his job was very physical, and as yet has not got his OAP…he was going to get himself an easier part time job to see him through to his actual retirement age…but that has never happened…he has become very unsociable a lot of the time and probably lost a lot of confidence through not working. This was not the life we had “planned” for ourselves when our retirement came along. When we see our Grandchildren he falls asleep whilst they are with us,whatever time it is… he is losing his voice a lot of the time and people cannot hear him or understand him with the slurring of his voice…the list is endless…I look at him and he is not the same person…PD is robbing him of bits every day…I hate this disease with a vengance and could scream out loud all the time…but as a “carer” I have to surpress my emotions and feelings and put on a bright face all the time…I did try and say how I felt once at a parkinsons meeting but was told that I was wrong to feel like this everyone else did not see themselves as “a carer” and they married for better or worse…I never said I did not love my husband but said my role had changed and somedays I felt like I was my husband mother not his wife…as my husband was dependant on me now and I felt our lives were passing us by…So to feel anger in my opinion is totally acceptable and to actually admit how you feel is very brave of you…so scream away as I am sure people on this forum would reconise the feelings you have…and actually relate to it…
I get angry as well. Sonetimes it feels that life isn’t fair. I’m a parkinson patient. I try to keep sane by making fun of my disease but sonetimes i get a bit down and angry. I only function fairly normally on a pretty high dose of co-careldopa. Again I’m lucky, ny gp is very proactive and I’m able to vary my doses without constantly bothering her. On low or no co-careldopa I’m a shuffling ruin needing 2 sticks and am to alk intents housebound on high bose meds I’m able to travel alone using 1 or no sticks. using the higher dose means in the longer term the meds might stop working and i could endure a rapid downward spiral of parkinson’s, that is s risk I’m wilking to take, not only for me but also my wife. I want to keep as fit as possible for as long as possible, when the meds stop working I’ll re-asess at that juncture.
I find I also tend to get really annoyed for something that really didn’t bother me that much before.
I didn’t realize it, until my wife and others told me, I was totally over reacting to situations.
It’s almost like I feel anger welling inside me, and it has to be released, and when someone said to me to stop being so angry I turned my anger towards them.
I say " don’t tell me what to do or how to react."
I am trying to control it as best I can, but at time it spills out.
It sounds crazy but I have told my wife etc to say, when that happens, " remember what I said", and that makes the difference because I immediately remember what I told her about the PD and anger, so I realize it is not criticism, just the way PD works, and calm down immediately.
I feel very bitter, we used to do a great deal of touring motorcycling but no longer, We are becoming more introverted, where going out for a drink or meal was the norm, not now. I am no youngster at 72 but feel its all down hill from here. I would rather be myself and getting on with what time I have. There seems to be a great deal of “research” going on but after 40 odd years we are still with L-Dopa !!! As was mentioned in the the recent Paxman interview Parkinson Uk have spent £100 Million on research, a £100 million wow and where are we now ?
Anger is a normal part of grief Grief for the life you thought you would have had. Over the years I have had periods of anger - still do from time to time usually over lack of insight and ignorance. Accept your anger is a normal part of grief and do not try to push it away or feel guilty about it - especially carers. Trying to hold it back only intensifies this powerful emotion. In stead focus on your breathing going slowly and gently from your lower abdomen and see if you can feel kindness and compassion towards your self just as you would to a dear friend in your situation . Go well
I get angry sometimes And start shouting at myself to move It can work quite well Has anyone had any trouble with dogs Almost every dog seems to want to attack me Also has anybody taken out this staircase and put off a ladder instead because it is much easier to use a l Ladder I literally cannot get my foot off the ground but when I manage to get to the ladder I can walk up it and free my knees very easily why is this
I understand totally.
I used to do a lot of scuba diving, I am a dive master, around the world, perhaps over about 600 dives, and now obviously cannot anymore.
I feel I can, but then just know it would simply be too dangerous.
Of course sky diving now is out of the question.
At least I can still cycle and go to gym, which I find really helps.
Other than that I’m ok.
I don’t ask why it happened to me, who knows, but it’s there and must be dealt with as best I can.
Hi Nala and all
I have just been diagnosed with PD but think my wife has taken it worse than me, I have been reading a lot on here from careers and I am seeing more and more that you are going though as much as PD sufferers, but yes I have to say since I was diagnosed which is only a few months ago and the neurologist said I most likely had it for years I have lent on my wife a lot , she has fussed round me and I feel more dependent on her, since reading your topics I have tried and will keep trying to make life easier for both of us, I still work and I am 71 I will stay at work as long as I can as this give her time for herself I try and put on a smile when I come home and make sure we do as normal things as we have always done (sometimes it do get the better of me but I am more aware of it ) I can see she is angry a lot hope not at me but what has happened in our life, I would say that all PD sufferers should read how careers feel so I thank you for being honest and I will keep reading to remind myself its both of us. Take care there is always someone worse of Peter
I would urge people to ask where are the results of all the research going on ?
Forgive me being cynical but just think, if a cure was found think of the “ researchers “ that would no longer get their funding !!!
Hi Nala,
I know how bitter you feel about this, but really your comments about the researchers are not even beginning to be fair.
We have tens of people researching how to mitigate or cure PD as they try with dementia, MND, and other neurological diseases.
I do not believe for an instant that the MJFF, etc would give grants to anyone they thought did not deserve it, nor would I contribute.
And are they paid for their work, of course they are as anyone else with a job is paid for their work.
Hello Clive, thank you for your reply. I read my post again and my apologies if it came across as “bitter” this was not my intention. I was trying to find out why after many decades of researching all over the earth, was a fifty year old medication still the go to choice ? What I was trying to put forward was the fact that 100’s of Millions of pounds / dollars is being spent annually and what I see is a great deal of research, so here is a controversial point: While labs are receiving millions of pounds is there any incentive to find a cure ? I am sure I will condemned for this question but think about it.
Nala…I totally agree with your comments…where is all the money going? I have posted only yesterday on another thread with the same thoughts as you…
Today on the TV show…“This Morning” there was a talk about Parkinson’s and basically 1 of the presenters said “So there is no cure for Parkinson’s?” Why…why…why? What is the research money being spent on…surely there should be something on the horizon to at least minimise the symptoms if not actually cure parkinson’s? The GP on the programme admitted that they do not know what causes parkinson’s ? So if the researchers cannot find the base cause of it how can they expect to find a cure? I too wonder what percentage of the money is actually being spent on research, people are donating thinking they are donating towards a cure ? Sinemet was meant to be the gold star medication over 50yrs ago…and it is still being prescribed now but is obviously less effective as the parkinson’s progresses because all that happens is that consultants add lots more medication along with it sometimes with horrendous results,so why has no other single medication been found? Where is the next gold star medication after 50yrs of Sinemet? The money is there and the research is ongoing…No doubt I will get shot down for my comments too…
Hello All
I have rather belatedly caught up with this thread and for what it’s worth would like to throw my hat into the ring.
First thing to say is that what everyone has written is right and it reflects the wide ranging impact Parkinson’s can have when it comes knocking on your door. Although it is getting more coverage in the media with so many famous faces being diagnosed with this condition, it remains much of a mystery to many who are touched by it whether they be the one with the diagnosis or know someone either directly or indirectly with it.
I can understand the frustration at the lack of apparent progress with all the research that is going on, it does feel at times that we keep hearing about new things that have been found that may help to improve treatments or increase understanding but then you hear nothing. I sometimes think however that we perhaps expect too much of medical science these days. Our understanding and management of so many conditions has become so advanced, that we are in danger of assuming there is always an answer. To my mind medical science has made enormous strides and will continue to do so, but there is still a lot that is not known about how the body reacts, how conditions develop, what causes some to develop all sorts of things and others don’t. There are lots of conditions that are still searching for the cure or better treatment and Parkinson’s is one of them, and proving to be a difficult nut to crack. That is not an easy thing to live with and accept whether you have Parkinson’s or not. There is nothing wrong with asking questions of the research, it should be open and transparent especially when so much of it depends on the generosity of donations by members of the public but each of us must decide how we view it and how it affects or ability to live with this knowledge For me personally, I don’t expect a massive breakthrough in my lifetime, if there is chances are I will be too far along the Parkinson’s road to benefit so I live the best life I can with what’s available to me now and don’t otherwise think about it overmuch. Should that not be the case and a miraculous cure or vastly improved treatment is found well that will just be the most wonderful bonus. I am not asking anyone to agree with this, merely saying it’s what I think
The other aspect of this thread that comes over so strongly in this thread albeit in several guises is the feelings of being cheated, not having the opportunities to enjoy your long awaited and planned for retirement for example, the way a long standing and good relationship can change out of all recognition and in some cases so fast you can end up totally shocked, angry and bitter, being trapped in a nightmare that could last years and so on. Whatever anyone feels is legitimate, the anger, bitterness, guilt, the sheer unfairness of it all, the hurt you are unintentionally causing, and so on can affect us all whether the person with Parkinsons, or someone with a direct or indirect connection with Parkinson’s. There is no one answer to this aspect of Parkinson’s whichever side you come from again you must decide how you view ir and how you manage it. I think there are things you can do. It is healthy to acknowledge what you think and feel as honestly as you can. This does not mean you have to say it out loud unless you want to but you might instead choose to write it down as this can in itself make you feel a bit lighter, indeed many writing on the forum find this to be a form of release that helps them to cope. Or use one of the many agencies who can provide a listening ear, not least the Parkinson’s UK helpline. All you can do at the end of the day is be kind to yourself, try not to beat yourself up by feelings of guilt etc and take what actions you can to help you manage the circumstances in which you find yourself through no fault of your own. Sometimes such honesty can be hard and difficult, not all relationships survive, not all coping strategies work all the time, if you are the one with Parkinson’s you don’t always have a way of stopp[ing some things however much you may wish it. We can only all do the best we can by ourselves and by each other and if that sometimes means making hard choices we need to have the courage to do that. Parkinson’s is complex and difficult but we all only have this one life, right here, right now and we all deserve to make that the best it can be whatever road that takes you on.
I wish us all the strength and courage to live with the decisions Parkinson’s demands of us to have a life worth living. Because if you don’t believe life is worth living what else is there?
Tot
I asked the BBC This Morning to comment on the latest research on this. They picked it up and mentioned ‘stem cell research’ the next morning - let’s hope and pray stem cell treatment is coming soon.
I feel exactly the same. Be angry at the Parkinsons, not the person. What I find difficult as my husband’s sole carer is that he gets very angry at me for showing a hint of impatience or frustration when he asks me explain something again that I’ve just finished explaining twice, even if I don’t say anything. He also won’t find his own reading glasses or use the TV remote when I’m there, even though they’re in front of him. He gets viciously angry and upset at me but I mustn’t get angry as it is the Parkinsons . He hasn’t reconciled himself to his Caring is literally thankless
