Thanks a lot Reah, I wouldn’t have seen the post otherwise
Thanks a lot Reah, I wouldn’t have seen the post otherwise
Thank you Pippa. I’ve received your PM and I’ll continue this conversation privately, but I just wanted to say publicly, in case it helps others in a similar situation, how amazing it was to receive your reply on here yesterday. It felt like a block of ice inside me melting. It was extraordinary, and unexpected. The mere fact of making contact with someone else who empirically understands - I never imagined it could be so powerful. So to anyone else feeling alone and wondering whether to reach out, I’d say “please, for your own sake, do it”.
It’s good to read this thread. I feel dreadfully alone much of the time. My husband has had PD diagnosed for 11 years, he’s 74, ten years older than me. He’s still mobile but I see PD creeping and stealing a little more of him every day. We live in a rather isolated situation and although I still get out and about, I feel increasing anxiety about him falling and just lately he’s been getting confused more. He’s been to the local memory clinic and they diagnosed 'some cognitive impairment '. He doesn’t want to go to a PD support group, because he doesn’t want to see how bad he will become. He is becoming more and more isolated and as his needs occupy me more, I fear that I too will be even more alone.
I guess someone will read this, and so many of you are so much worse off than I am, I feel kind of selfish. Thanks for being out there.
So sorry you feel so alone, Giffy1. I hope reaching out here and forming some sort of connection with those of us in a similar boat will lessen your sense of aloneness. It helps me, but if I’m honest knowing there are so many of us struggling with this challenge and feeling so isolated also makes me angry because we are doing such a hard job and there is so little understanding (I think) in society of what that’s like and what it means. I guess many people would say that looking after each other as we become infirm and as we age is what comes with a long-term relationship, with marriage. But that’s too glib a response. The situation you and I and other carers find ourselves in is very specific to our time and culture. Not only are people living longer, but the dispersed nature of modern families means that when one partner develops a long-term condition, the other partner cares for them alone, whereas in earlier times and in other cultures much of the day to day burden would be shared within the family and even the wider community. On the plus side, I find that my husband‘s condition, and the particular situation we’re in at the moment where he’s suffered a bit of a crisis and isn’t at home for the time being, has brought out extraordinary kindness in people, some of whom I didn’t know very well beforehand.
I found this on a website recently:
“One woman stated that after caring for her husband for 20 years, she stopped calling it Parkinson’s and started calling it “Infinite Disease”, because there is no end to the number of ways it can break your heart. When you are caring for someone with Parkinson’s, Alzheimer’s or any other long-term disease, it’s not at all unusual for friends and family members to inquire about the condition of your loved one and never even think to ask about what’s happening in your mind, heart or body. As a caregiver, you have to learn that you cannot count on anyone who hasn’t done what you’re doing to recognize or understand how incredibly difficult this journey can be.”
I guess that’s why we’re all here in this forum.
Good of you to bare your soul and put it out there…it’a bit like fishing ( not that I go fishing)…casting the line and hoping, trusting, that something will happen. Takes courage and vulnerability.
Such a huge adjustment to expectations and hopes as to what life was going to be like , and so many dimensions to the experience of caring for a partner, some of which I find very difficult to put into words.
For what it is worth, I think that comparisons are odious…some people seem to have it “worse”, others “better”. But who is to say ( not that it matters)… ? So many variables ( physical condition, emotional and psychological resilience, past experience , belief system, support system, financial resources etc etc ) that it makes it impossible to quantify in any but a very superficial sense. We each have enough on our plates without adding further guilt for feeling bad and looking over our shoulders at what others are doing, or what we think they are thinking, though I do that a lot and it doesn’t help, and I am often wrong.
A lot of the time I don’t even want to have to explain or describe how my OH is, or how I am…can it not be taken as read that it is hard and that a spontaneous and unconditional act of kindness, without being asked for, is what is needed? I guess that some, many , people fear getting it wrong ( and that is easy to do too), or interfering or whatever…it’s not an exact science. This might sound awful, but having to add “be grateful “ to my list of things to be done is sometimes a step too far .
I am sure we all ( in this boat) fear or dread what is to come…in my better moments I force myself not to think about it, or not beyond the next month or so, or tell myself that I really don’t know ( having married his lordship 27 years ago, much against the views of my parents who predicted problems if we lasted over 20 years due to the age difference…on the grounds, apart from love, that he or I or both of us could get run over by a bus the following day…) Sufficient unto the day, and all that (…is the evil thereof).
I hope you are able to let some of this glorious sun seep into your skin and bones and be warmed by it,
Best wishes, Pippa
Can your current “crisis” ( for which read, a break for you) allow you to have a massage or some such…anything to allow others to care for you for a change? . Perhaps not easy to do, but you could always imagine your best friend getting it for you as a treat.
If recent events mean you are going to and from some medical establishment , then I hope you are able to let others do what is needs to be done whilst you take care of yourself and get in touch, albeit briefly maybe , with you as you, just in case you had forgotten who that is!.
Wondering whether you got my messages…not that a reply is needed,…
Warm regards, ,
I’ve sent three email replies … one on 17th, two on 21st. I wonder what’s happening to them! I just hit ‘reply’ at the bottom of each of your emails - maybe that wasn’t the right way to do it, or maybe they’re sitting in some private space in your forum account? Can you tell me what you did to PM me and then I can do the same to send messages to you, which I would very much like to do.
Hello Pippa, believe it or not a couple of years ago a few of us on the forum who suffered with parkinsons and got on really well, decided to have ‘meet up’, I arranged it to meet up in a hotel in York, where we really enjoyed ourselves. So it is possible for a few of you carers to meet up if you have someone willing to take on the responsibly to arrange something, it will do you all good to meet with someone in the same situation as yourself. Hope this can be possible for you too.
I’m also a carer and your posts have made me quite emotional, because like you. I’ve had people enquiring after both my husband and my father and just expecting me to ‘get on with it’. The constant falls (my father) and the change in personality (my husband). I’m dealing with both children living at home still (GCSEs last year), depression and social anxiety from the stress and I’m losing my hearing. I wish we all had different lives.
My father has had Parkinson’s for 20 years and my husband was diagnosed 7 years ago. I’m 49. When my mother died 8 years ago we never realised how much she was dealing with and I feel a lot of guilt over the fact that we didn’t take her seriously when she complained about my father, because now I know what she was having to deal with.
My father is now in assisted living after a roller coaster of 5 years of trying to prove his independence and the home is struggling to cope and want him to go into nursing care. He has lost all his friends because of his stubbornness and refusal to accept his condition.
I too have wondered about a place where carers can come together and talk about this and I’ve created a facebook group. I don’t know if the mods know of any other forums for carers?
Thank you for being brave enough to put it out there.
I stumbled across this thread and I am so glad I have. What you have been sharing resonates with me too. My partner was diagnosed with Parkinson’s in 2014, although the symptoms were there well before. He is 14 years older than me, I have just turned 53. Our 19 year old son lives at home. The stress this illness is placing us all under is awful. It isn’t living, it’s existing. I no longer see the person I once fell in love with and I don’t know how to cope. He has just come out of hospital following an infection. The delusions were awful. He was classed as a level 4 risk with a hospital security office assigned to him. He is home now but is now doubly incontient and does little to help himself. Refuses outside help and is waiting for an appointment at the memory clinic, as short term recall is getting much worse. It has helped to read that others understand on here.
A warm welcome to this thread …the more the merrier , in a gallows humour kind of way! . It is a very leaky boat that we find ourselves in but there is strange kind of comfort to be had in knowing that other people are dealing with the same kind of stuff.
It is indeed a shitty business in more ways than one and a million miles away from what any of us would ever have chosen. I quite like the analogy of thinking that you are going on holiday to , say Mauritius, and ending up in Alaska instead. Different yes, but not impossible to survive in.
I have no idea how long it takes to adjust, to “ accept” one’s changed circumstances…maybe it is a daily process, or even hourly, rather than a wholesale acceptance, or is it more like a very gradual having to let go ( or something being pulled from your grasp) of former hopes and plans .
You are coping in one way or another…probably not as you might have imagined you would but then that was before you had to and now this is reality… very different. I am frequently dismayed at my failure to live up to my own standards but I do know I am doing the best I can and I guess you are too.
On a practical note, has your husband been referred to incontinence clinic. In case not, they provide all sorts which can make life a little easier ( e.g. external catheter for night and/or day use…a godsend if ever there was one) . We have a Community Neuro rehab team in this area…worth finding out if you do too. Not sure why my husband wasn’t referred to them immediately but better late than never. A multi disciplinary team …OTs, physios, psychologist ( for me too) medics etc.
Delirium is the pits…horrible, horrible horrible and can drag on for a while. It is so very real for the person in the throes of it, even when they later realise it was not.
And yes, this wretched PD is transforming of our loved ones ( and ourselves) . My BP ( before Parkinson’s) husband is slowly but surely being erased and replaced by someone else altogether. His occasional awareness of that himself is the cause of great distress and grief for him .
How to mourn the loss of a person when they are still here, and as often causing distress and conflict as anything else? .
I wonder how your son is coping, and what support is put there for him ( other than you of course.) So hard for any child to experience the frailty and vulnerability of a parent, esp when they are just beginning to try to find their own way in the world.
Do keep in touch, if only to have a wail. Although you may feel very alone and lonely at times, there are people out here in the ether of the forum who can help ease things a little just by sharing the experience.
Warm regards, Pippa
I’m so happy to see that you’ve found this thread and it has helped you. To answer your question about support for carers, in addition to the forum, there are services available to help such as local local carers’ groups and counselling. We have more information on this on our website including a search tool to look up your local support group which you can find here - https://www.parkinsons.org.uk/information-and-support/caring-someone-parkinsons.
You may also find our comprehensive carers’ guide helpful. It offers practical help and advice, whether you provide care and support for someone who has recently been diagnosed, or someone who has been living with Parkinson’s for a while. You can download this here - https://www.parkinsons.org.uk/sites/default/files/2018-09/B071%20The%20carer’s%20guide%20WEB.pdf.
Lastly, you can always give our helpline a call for more information and support on 0808 800 0303 or email us [email protected].
A very leaky boat and somebody appears to have pinched the oars and jammed the rudder!! Your analogy made me smile, so thank you
I’m not sure we ever accept fully. I am at the stage of making it through to the end of each day and finding something, however small, to be grateful for. You are right, we are coping, but it really doesn’t feel like it at times. Those times it feels like your best will never be good enough. On to the next day…
Yes, he has been referred to urology. Had test and op plus tablets. Better but a long way off. Neurology nurse has said she was altering meds and referring him to clinics but nothing. Chased up on last appointment to no avail.
My son isn’t coping. He has severe psoriasis and the stress is not helping his condition. It just seems wrong that we are the ones on antidepressants to cope with someone else’s illness.
Our minds can be our worst enemies…our best has to be good enough, we cannot do anymore, …maybe the word “good” needs a bit of tweaking to include, in this context , feeling and getting frustrated and being short tempered and having bad days . Just being there and sticking with it is and not doing harm , has to “good enough” under these circumstances. Let us set the bar a little lower and then feel good for being able to jump higher from time to time. It is hard enough without beating ourselves up too, but so much easier said than done.
Would your son be able to and allow himself to stay the occasional night with local friends…he as much as you needs some “ normality” in his life and a chance to put aside, albeit briefly, all that is going on at home without feeling guilty about needing and wanting that.
Am away right now so limited access to internet but will drop by the forum when I can.
Warm wishes, Pippa