Becoming a carer


#21

Hi there,

Am glad to hear that is going so well. Good for you! Self help is definitely the order of the day - which is fine, when one has the time and energy. Getting up and out is proving quite a challenge these days - you don’t imagine all the hard work behind getting someone who has to use a wheelchair ready and presentable to the outside world, when you see them out and about - until you have to do it yourself - at least I didn’t.
There is a group local to me - but bingo and a raffle are what they do, plus day trips, with the occasional speaker - so a longer term member and I are looking to tactfully introduce some other activities, but don’t want to ruffle any feathers, esp of those who have put a lot of time and effort into organising what does happen.
best wishes,
Pippa


#22

Hi there,

Maybe it is just those who post on this forum, but I am fast getting the sense of an intelligent, articulate, very sensitive and caring bunch of people, who find themselves, through no fault of their own, in a completely rubbish situation - either dealing with PD themselves, or loving and helping (“caring for”) someone who has it.
Sympathy from others is wholly useless and in fact makes me want to scream - I don’t want people’s pity or throw away lines (“you need to look after yourself you know”) - plus the sense of relief that they are not in the same situation. I want them to help out with my ironing, cleaning, cooking, gardening - anything practical that will take some of the load off my shoulders - and without them needing or expecting something physical or emotional in return. I know that is a lot to ask - and it is difficult to ask because of not wanting to impose, to be indebted, needy or beholden (or is that just my warped psychology?) .
So what is the answer to all the feelings and struggle whilst we still have to get on with it all. Sounding off without fear of judgement or being judged would be nice - which is where people who have been there and got the t-shirt come into their own.

A counsellor recently talked to me about “acceptance” - I could have rammed his bloody acceptance down his throat - but I know he is right - along with all the spiritual masters (and mistresses)and philosophers (esp the Stoics) through the ages who talk about detachment and mindfulness - focusing on the here and now moment - not worrying about the past or future. Certainly for me, railing against my fate (and then feeling very guilty for being such a so called 1st world complainer whose problems pale into insignificance compared with much of the rest of the non Western world) simply takes up the precious resource of my energy - and leaves me no better off . I have to focus on what is in front of me and do that and not have such unreasonable expectations of myself and how I am feeling/behaving etc when things are not going so well. I cannot afford to compare my situation with others - either because they are better off or worse off - both leave me feeling rubbish.
And comparisons ARE odious…but my husband is a lot older than me - so there was always the very real likelihood that I would become his carer - whereas you had every reason to think that you would grow older together in some kind of unison, with a lot of healthy life ahead of you before the ravages of old age set in. You have every right to feel sorry for yourself - it is wholly natural and understandable, though probably doesn’t help you to feel better - I suspect that instead it will lead to you feeling guilty for feeling that way - which is not helpful either!
It is also very understandable and natural to be fearful of the future - how the PD will develop and how as carers we will cope - or not (and what unattractive sides to our characters we might discover in doing so) - what “it” will be like - the thought of being on our own etc etc. It would be unnatural not to be scared of it all and not to want to bury one 's head in sand, work, alcohol or whatever. So we do all those things - then come on the forum or read a book, see a child playing or watch Nina Conti and have a laugh, and feel a little refreshed and energised for going back into the fray.

It’s not fair!! - says the small child in me - who is instantly challenged by the adult me who knows that that “fairness” and " justice" is not the way the world works and never has been (those with a religious faith will argue otherwise - and I envy them too - having once been one of their number ).

It’s okay to say it is not okay and to want some space to just be yourself - not a wife, mother, daughter, employee, whatever. Just accepting that can help, even if it is not possible to get it. And who knows what lies around the corner - a new friend, a word, a picture, a look, a little something that makes us glad to be alive and to have feelings and a brain and the the capacity to love and be loved. Doesn’t help with the big stuff but can help get through the smaller stuff.

I had better stop and get on with some of that stuff!

You cut yourself some slack and keep posting!!
warm regards,
Pippa


#23

Hi DPalm,

Sorry to hear that you and your husband have had so much to deal with. Have you tried looking into peer support? You can find more information here: https://www.parkinsons.org.uk/information-and-support/peer-support-service

You can also call our Helpline on 0808 800 0303 from Monday-Friday 9am-7pm, and on Saturday from 10am-2pm if you would like to talk to someone.

Best wishes,
Edwina,
Moderation team.


#24

Hi Pippa

I am sorry I couldn’t help you, but I am a sufferer and not a carer, so I am on the other side of the fence, maybe you should talk to other Carers who is going through what you are going through your experience.
That is why I decided to open these Parkinson’s Cafe’s so Carers can talk to other Carers and Sufferer can maybe correspond with other Sufferers and have a couple of hours were you can have a cuppa and relax with friends you have just met.
My wife goes through the same thing as you have gone through helping me with my socks with some of my clothes, for the past 4 weeks I have lost partial use of my legs and feet I now shuffle and I am quite slow that puts more pressure on my Wife (Christina) we have be married for nearly 47 years , she also does washing cleaning the house and do the shopping my bus as I do not drive any more, ok my neighbours do help sometimes but when we opened our Cafe we found that other people was going through what we were.
Self pity is ok but you have to make sure your Husband is ok and there are people out there that can help you Parkinson’s.org.uk can help you social services can help uou too.
I am sorry if this does not help,but I have a god that does.
Best wishes

Colinr


#25

Hi Colin,
I didn’t mean to imply that you weren’t being helpful…that was not my intention.at all, or thought. I guess that since the written word cannot convey tone , which then risks the intended meaning being misinterpreted. My apologies.
My husband’s mental and physical health has taken a nose dive following recent falls, and which we are both struggling to cope with. Hard as I find it at the moment, it is a million times worse for him. .
Regards, Pippa


#26

Hi Pippa

What i was trying to say and I am sorry if I seemed to come over to strongly was that the best people to help you though this bad period you have been going through is them that have gone through it themselves they can comfort you and help you as I am a sufferer I can’t understand what uou are going through but I do know what your Husband is and I can tell you it worries the hell out of me what i could become and what my Darling wife will have put up with.
I wish we could meet as I hate talking to someone with pain in her heart going through the sort of thing you are going through
Maybe sometimes friend’s are all you need.
My respect to you.
Best Regards.
Colinr


#27

Hello all,
I’m new to this site. I was so humbled by the conversations about PD either as sufferers or carers.
My situation is, that I’m married to a lovely man who was diagnosed last year. We married in March this year after knowing each other for only three years in total. I totally sympathise with the frank and honest carers views on caring with someone with pd, unfortunately I think Neil has had the disease for longer than originally diagnosed as he seems to be going down hill and had a few falls. His mood is very low and his doctors are changing his anti depressants so, hopefully that will help. Without sounding selfish I’m struggling I’m really worried about the future and while I’m trying to stay positive and constantly say that this disease is not going to ruin our lives or even monopolise it, I’m starting to think that I’m losing that battle. I think I may be burying my head a little as I don’t want to admit that things are going to change, I haven’t had the luxury of knowing my husband before this cruel disease and feeling anxious about the future. Neil fell again today and it’s really starting to scare me. Sorry to off load but I would really welcome some feedback.
Bev xx


#28

I sympathise with everything that you are going through - mentally and physically. I also need to communicate/sound off/discuss calmly/talk intelligently with like minded people occasionally (and not over tea and biscuits either) because what we do is a very challenging role indeed. I’ve come to realise this slowly, almost at the cost of my own health, and sadly at the cost of the knowledge that previously caring members of the family are not who they think they are. However, onward … Mum has had PD since she was 63 (now 90). Dad was her sole carer until 2017 when he passed away. I’ve helped them both for 5 years since my husband died in 2012. After Dad died I took on my role with Mum 24/7. While she has not deteriorated (she’s already at Stage 3 apparently) she does now have dementia and other side effects of the Parkinson’s. Whatever their age Parkinson’s affects everyone differently simply because of each person’s different personality. My patience has been tested to its limits many a time but I have to say that I turned to religion and for me that worked. Without God I would not still be here, coping, living in with Mum 24/7, caring for every aspect of her life and making sure that she misses nothing, lacks nothing, needs nothing, wants nothing and lives as she might have done given the lack of mobility. I take her out as often as I can. Spend every moment she is ‘‘awake’’ with her. Discuss things with her despite the fact that she is slow on the uptake and sometimes tests my patients … even now … to the limit. We are all precious, loved so very much, and time on earth with each other is short. I do hope Pippa that you will find the strength to cope with your situation with your husband. Inside, he is as confused and insecure as you and knows only too well how much pressure this is adding to your life. Much love to you both.


#29

Thanks Dee, I need to hear and take on board such words when tiredness, frustration and sadness /anger about the whole situation threaten to take over .It often feels like my husband and I are stumbling blindly through a dark wood, finding an occasional clearing, bumping into the occasional kind stranger but for the most part clinging to each other and huddling together against the elements but also taking out our frustrations on each other rather than at PD which is the cause of it all.
Kind regards, Pippa


#30

Yes, PD is a very nasty and challenging disease, for them and for the carer. Also, if the person you are caring for is family then the emotional strain is tremendous. It is the sign of the times that without Parkinson’s Disease UK none of us would have any backup … yet there are strides being made too because PD Specialist nurses are being hired all over the UK and it is becoming more widely known out there too. Previously, after Mum was diagnosed, eating out or anything public forced her to become very angry because the public knew little of her condition (the shaking, dribbling, etc) and she’d face ridicule. We are a firm, forceful and loving family and we rallied to her aid and helped. She is facing her disease with courage and as each stage means a step up in her care she adapts and complies quietly. I ask God all the time about this … and without God I know that I could not have been here this long because everything your loved one is becomes you … and that is very difficult because of the stuff you mention: tiredness, frustration, sadness, anger and in my case I’ve had to learn a lot about patience too.


#31

How are you doing Pippa? Sorry it’s taken me a few days to get back to you, hope son #2 got back off to uni okay. Beginning of term has wiped me out completely, so much for wellbeing eh! How on earth do people with demanding full time jobs cope with this? I’m beginning to feel I need a group that specifically supports people in this situation!

Is David’s balance and control a significant problem? Has that developed over time or come on quickly? That must worry you.

The sense of loss… That’s a good way to describe it. I feel cheated and if I am perfectly honest resentful right now. Les gives nothing back any more, he’s locked in his own world and I don’t know how to break in. He often disappears for a few days. In that I know where he is, it’s better than it was - previously he just disappeared - but it bothers me terribly that he has to remove himself to find peace. I bloody hate this disease!

This forum is great, but I forget to check it regularly. Wondering if more direct contact might help?

Caron x


#32

Bev, I’m in similar situation. My partner was diagnosed before I met him. Initially he seemed to be coping really well and he’s still physically quite fit, just slow and freezes occasionally. It’s the impact on the person he was that I’m finding difficult. I’m worried he’s gone forever. What support do you have?
Caron


#33

Hi @clb18,

Lovely to see you on the forum again!

Caring for someone with Parkinson’s can be quite challenging, however, we have over 300 Parkinson’s UK local groups run by volunteers throughout the UK that’s available to all people affected by Parkinson’s including carers. Meetings can be informal, a chance to talk and discuss worries and experiences - or may include a presentation by an invited speaker. If you’re interested you can find your local group here - https://www.parkinsons.org.uk/information-and-support/local-groups

Hope this helps! :slightly_smiling_face:

Best wishes,
Resh


#34

Not good to be quite honest and time slips away and I feel I have achieved little except keep head above water, in between going under. Feel bad for complaining when so many have a much worse deal in life but reality is that I am finding it v hard . In technical speak , I strongly suspect that my attachment style (“avoidant” ) has a lot to do with it, throughout my life and now when really put to the test. Being an introvert ( see “introvert Doodles” by marzi , online cartoons) doesn’t help in that respect ,
If you are a paid carer , your expectations of the one being cared for are v different from if you are their partner. I’m not sure , because I haven’t really analysed it, whether I feel resentment, anger, intense frustration…probably all those and more, with a large dollop of guilt for feeling such things when David cannot help being the way he is and it is so very much worse for him at all levels. He would happily die given the chance on occasions, and, don’t get me wrong…I’m not about to do anything, but I do find myself wondering what exactly is the point of going on like this when life is just about staying alive. I appreciate how negative that is and that being positive is the answer, but this beast is a many faceted thing which is why it affects everyone in such different ways.
Poor sleep and stressful work don’t make for having the emotional resources to function well let alone cope . I am no doubt my own worst enemy…so the solution is simple! Be someone else…
It is a strangely lonely journey despite so many others being on the same road. No one can walk in your shoes, and the person who was closest to doing so is not around any more, or hardly. If I could get over all that I would no doubt feel and cope a lot better. Perhaps that is life in a nutshell and we all have to find one way or another to get by.
It does help to splurge on here and feel less alone with it all than I have done in the past ,
Thanks for being there
Pippa


#35

Hello pippa, reading your post makes me realise how things really are on the ‘other side’ as you might say, I am the one with the dreaded parky. I am not too bad at the moment, but as the parky gets worse I will revert to going back to being a child - helpless to a degree - and hating every minute, not for just me but also my husband. The side of being a carer is personal, tiresome, never ending, unsociable, the list goes on - but don’t feel bad about letting off steam you need to - I hope you have respite sometimes by getting out with friends and I mean good friends that give you support and make you feel happy enough to ‘let your hair down’ as they. My hubby loves his fishing and gardening so gets his respite from doing that. My thoughts are with you, so you have a ‘bellow’ or whatever anytime, it will do you good and we’ll listen

sheffy


#36

Thanks sheffy,
I do feel bad complaining in any way when life is so tough for my husband, maybe it is just a human reaction which should be taken with a large pinch of salt, like when he has a go at me. I do get more frustrated when he does things which put him at risk or that end up in him hurting himself because of the consequences for us both, but now I have to accept that he will continue to do those things if given a chance and that is part of the condition. I wish now that I had got him to write a letter to our sons, for them to have when he was no longer mentally able to express his love , pride, etc in them. It is a great loss for them and much harder for them to distinguish the person from the disease than it is for me.
I would hate to be in his, or your shoes…and greatly admire his fortitude and courage on the face of this horrible disease.
Regards,
Pippa


#37

Hello @Pippa. Are you still reading the posts in this topic? Your posts penetrate my loneliness and despair and give me something to hold onto that tells me I am not perhaps the terrible person I feel myself to be. I hate being a carer. I have no carer instincts. Never once in my life have I longed to look after anyone. I hated childcare (while loving my children passionately), and I hate caring for the remnants of my partner. But I love him, and I know that having Parkinson’s is not his fault. Yet still I hate him for sitting there while I slave around the house and minister to his needs. I hate all the friends who say soothingly ‘no, you’re a brilliant carer’. I’m not a brilliant carer, I’m a woman who loves her husband and happens to be very efficient. Nothing I do for him is done with joy in my heart, just rage and despair. And the one person who would have understood that is disappearing before my eyes. There is no way out of this other than the thing I dread most. And when that happens, what will I be? How will I live with myself, with the knowledge that I couldn’t even bring myself to perform simple domestic tasks for him with love? I hope you are still in this forum, Pippa, because the things you’ve written make me think you might understand.


#38

Hi @Livinginhope,

Thank you so much being open and honest about your experience as a carer. I’m sure it’s not an easy thing to admit, however, I’m confident your honesty will help other people on the forum. Just a quick note; I edited your post so that you’ve ‘@’ pippa, this way she is more likely to see your comment because she will receive a notification.

Best wishes,
Reah


#39

Hi you,
Yes, but would rather continue this conversation with you by private message,
Will see if I can work out how to do that.
I wonder if it has ever been suggested to have a Parkinson’s Forum get together in person…how about a weekend away in a large property somewhere?..I realise that the point of the forum is mostly that it is online and with obscured identities, which is important at times and facilitates an openness and different kind of sharing, , but maybe there is also a place for enabling face to face contact with those with whom one has made a connection…something for moderators or Parkinson’s UK to think about maybe…or maybe they have already and I am just not aware of it…


#40

By the way, in between stirring the cheese sauce for supper…Many moons ago I was fortunate enough to work on India during a gap year with a woman who set up a medical project from scratch. ( google Sylvia Wright” if you are interested). In her early years out there she struggled a lot…and memorably ( to me) questioned the command to “love thy neighbour “ when what she “felt” was anything but love for them, when she saw how they behaved and treated others. She went on to reflect that love is not a feeling. Love is an action or behaviour, in the best interests of the person you love, to seek what is best for them.
I am considerably better at love in action than love in feeling these days. It sounds like you are too.
Pippa