My husband’s mobility had been getting worse for a while and in April 2019, following a bad fall, the doctor in A&E suggested that he had Parkinson’s. He has just been diagnosed by the neurologist at the same hospital and prescribed sinemet. He needs help with all aspects of daily living, his cognition is impaired and I am finding it difficult to cope because the care we are getting isn’t ‘joined up’. The GP who phoned yesterday to review the effects of the sinemet wasn’t the same GP I saw last autumn about my stress-related headaches and the bladder nurse who is assessing the incontinence told me she doesn’t have access to my husband’s medical notes. It is exhausting trying to cope with all the extra washing and cleaning and hard to find the extra energy to keep phoning the hospital and health centre to chase people up. I’m feeling very isolated. How does everyone else cope?
Hello @SusanMary and welcome to the Forum community.
That sounds like a difficult situation and I am sorry to hear you feel isolated. I’m sure some of our helpful members will be along to chat and share their experience soon.
In the meantime we have some information on our website for family friends and carers of people with Parkinsons. https://www.parkinsons.org.uk/information-and-support/support-family-and-friends If you haven’t already seen this, hopefully you will find it a useful place to start.
If you would like to speak to someone in more detail you can contact our helpline, our friendly trained advisers are available to offer information and support around every aspect of life with Parkinson’s and, if needed, can put you in touch with a Parkinson’s nurse or your Parkinson’s Local Adviser for more in depth support. Our helpline is open from 9am to 7pm Monday to Friday and 9am-2pm on Saturday (closed Sundays and Bank holidays) You can contact us on 0808 800 0303 or at [email protected]
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Thank you for your advice. I have been looking at the information on your website and found it very useful. Now I know what to ask for. No-one had told me that there was a Parkinson’s nurse we could contact, for example, and I didn’t know I could ask for a carer’s assessment. I can still joke about being a carer 24/7, but it does get me down sometimes.
Thank you, I am really pleased you have found the information useful.
It is very natural to feel that way at times and it can sometimes be difficult know where to begin when trying to navigate the services and support that are available.
Please do feel free to continue using the forum as a source of support and information or contact us via the helpline if we can be of any further help.
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Hello I’m not a carer but during the course of my working life this group were an integral part of the picture. In my experience most willingly take on this role without giving a second’s thoughts as to what the reality might be and in the beginning all is well. What people underestimate and quite often don’t recognise is the change that happens slowly over time- and apologies here as I this is both generalizing and simplistic and is only by way of illustration- relationships with shared decision making become the responsibility of the carer, the carer finds they are caring for a person they don’t recognise, the relentless nature of caring day in day out for often years, the sheer fatigue caused not only by caring but what feels like constant battles to find out about services how to access them and complex applications, the frequency of which you need to repeat 'your story’s not to mention the emotional cost often not admitted eg guilt, resentment, loneliness and trying not to be angry by others who know how you feel etc. Of course I paint a bleak picture and it’s not all bad some carry on caring for years with no apparent problem but this is not true of all. Unfortunately there are no easy answers either but there are a few things that may help a little
1 be honest about how you feel good and bad. To go from love to hate is normal it doesn’t make you a bad person it is to recognise caring is tough and you are human
2 most people don’t like to think this but not everyone is cut out to be a carer. Shocked? Don’t be it gives you choice and I know I couldn’t do it long term for example. So what do I mean well you can give up the role - there is an expectation that a family member will just assume this but there’s no law says they have to - if you do choose to carry on that’s great but if you find you’re struggling recognise what the hard bit is and be proactive as much as you can. Use the helpline and citizens advice etc for info and advice but more than the obvious battles to get services look for ways to manage your feelings - off load in a diary, trusted friend - my friend and I send I just need your ear emails - the forum, paint, have a jigsaw on the go, punch a pillow!! Try it it can be surprisingly effective.
3 remember and take heart from the good bits and never forget you are doing a good job, you are doing the best you can and that’s all you can do.
4 think creatively around decisions you need to make and your reasoning. I give you 2 brief examples. First a lady who kept saying I have to carry on I’m his wife. I pointed out she didn’t have to but she could choose to. Just this change of perception helped. The other was a lady who was struggling, her husband had become very aggressive she knew she wasn’t managing but held on to her marriage vows and in particular in sickness and in health, I pointed out it didn’t say in sickness and in health at home.
I hesitated to post this as I’m not sure it will help much but maybe it will give you something
I do hope so. Sent with my best wishes and a virtual hug!!
Thank you. That is really helpful. It is just good to have someone who understands how I feel, and as you have come up with some constructive ideas to help, that’s even better!
Hi you are not alone. My husband has only been diagnosed for 4 years but has deteriorated rapidly over the last 9 months. I have been screaming for help from the various agencies but none of them connect as you say. The local nhs Parkinson’s service really doesn’t listen to me, in fact my husbands recent consultant report contained at least 6 inaccuracies. After a recent collapse my husband was taken into respite care because the paramedics couldn’t take him into hospital this time because Of the Covid situation. He comes home tomorrow but still has not improved ( he goes completely rigid for hours on end, has a high level of paranoia and his anxiety is off the scale, ) this is a horrible illness andI understand why he is scared but he is nothing like the man I married, almost a stranger now.
Social services have put some carers in place but they and the manager of the care home who has been reporting on his condition whilst in respite are extremely concerned how this is going to work and so am I. However, it is completely up to him what he wants, I do feel we carers have no say, no rights.
Sorry if this sounds bleak. All I can offer is keep plugging away at things like social services,it’s hard work but you can get there. I can’t say I have any faith left in the medics but that might just be our situation. Try and get your husband to be proactive with his treatment etc… mine just put his head in the sand, did very little that was suggested to him and I think this hasn’t helped us at all.Keep in close contact with your friends mine have been a lifeline, making sure I eat etc… ( me having lost over 21 pounds in weight since Christmas) And don’t feel guilty saying’ I cannot cope And I can’t do this any more ‘ because until you say that no one will help. Sending hugs , good luck x
I am so sorry to hear this as I can guess at what you are going through. My husband’s head and sand are well acquainted! He misunderstands or forgets what the medics say and takes against them for no apparent reason, or he tells them that I am bossy or that I am making up stories about him. Thanks for the advice about keeping in contact with friends. I have one good friend who lives locally and who makes sure I take time away from home when I need a break. I hope you find your situation a little easier to cope with when your husband comes home. You have helped me so much just by sharing your experiences with me. x
Apologies for long post got a bit carried away!
Totally agree with Chrissythreads in that no-one should feel guilt at admitting they can no longer cope or that they simply can’t do it anymore. That is an easy thing to write but the guilt and 101 other emotions can be very strong and a difficult thing to counter. Admitting it is half the battle and that is a decision of courage not failure. It should also be remembered that this is not just about the cared for person and the carer is 50% of the relationship I am the first to admit the services and means of accessing them can be complex and difficult to understand and certainly do not help, indeed it can often feel that deliberate obstacles are being put in front of you. It is however, equally true I believe, that the caring role can over time generate a whole myriad of emotions that are not only often unforeseen it is frequently insidious, creeping in by stealth not noticed until crisis hits. I strongly empathise here that I am in no way being critical of people who take on the caring role, stick at it beyond all reason or indeed choose not to do it. I just see it as one of the most complex areas of social care not only because of the system in which it lies but also because of the sheer range of emotions, reactions and expectations it evokes in the individuals involved. Those of you who have been using the forum for a while will probably have noticed the expression ‘I have Parkinson’s it doesn’t have me’ has become something of a catchphrase and I have long advocated that it is important not to be defined by one’s medical condition and encouraged people to say (in my case) I am Tot and I jhappen to have Parkinson’s. I believe that carers should take a similar view eg I am Tot and I happen to be a carer. It defines what you do, not who you are.
I would however like to take this opportunity to throw something into the mix that may not have occurred to carers or indeed many others who live or know someone living with the peculiarities of Parkinson’s. This is not to detract from the very difficult role of caring in any way, merely to make a point. In the same way that there is an assumption that family will take on the caring role there is equally often an assumption that the person with Parkinson’s can never see that he or she is being difficult for want of a better word. Although this would indeed be true in many instances it is not always so and I can say this categorically because it happens to me. The hardest part for me in living with Parkinson’s is having to accept I get stressed and anxious like I never used to and that I can get quite irrational about some things even when shown evidence. At the moment the prospective damage is limited because, not immediately but at some point I recognise what is happening and explain to those who are trying to help. It is a very hard thing to explain, to recognise I am being illogical or irrational but not being able to prevent it until I have worked through it in my own way. Although in many cases it is undoubtedly true, don’t assume the person with Parkinson’s can’t understand they make life difficult the problem is not having the words to explain or the skill to know what to do about it. A person living with Parkinson’s has to live with the knowledge that there is no cure, that whatever you do ultimately you will become increasingly dependent, that there will be an evermore complex medication routine and a whole raft of motor and non motor symptoms may be lying in wait and that generally it is not a well understood condition. That is quite a mix to live with and still believe as I do that life is good. It might be that in some cases what you see is frustration, anger, fear with coping strategies letting you down and an overwhelming sense that you are just a burden. The caring role is a tough call but you do have a way out should you wish even if not easy to do. I and my fellow Parkies don’t have that.
Hi Tot, thanks for your reply. I think you were brave to write it. Thank you for helping me to see things from another perspective. I’m ok when I have had enough sleep, but I find it really difficult to be patient and understanding when I am physically and mentally exhausted. At bad times like that, I will try to remember what you have said. Thanks again.
It’s not brave SusanMary, I just try to be honest. Best part of 30 years ago I was on placement and I met a lady with advanced dementia. She was challenging in every way, physically and verbally aggressive in the blink of an eye, virtually impossible to have anything that could remotely be called normal social interaction. This lady held for many years a position as senior buyer for a large, well known department store. It was extremely difficult to marry up the lady I met with the lady she once was but I have never forgotten her and I owe her much; because of her I try to remember there are always at least two sides to any circumstance or story and that’s all I did, offered a different perspective. It is important to remember that the person who seems intent on driving you to distraction and can too often feel like a stranger is nevertheless that same person you once knew. For some reason I couldn’t get the links to take today but if you are interested I recently posted two poems in the creative corner which seem to fit with this debate look under June 2020 Nos 6 and 13…and for the record I agree fatigue makes any situation a 100 times harder!
Sometimes being honest means being brave, because when you are honest about yourself to other people, you make yourself vulnerable. I worked as a carer for a few years and I remember one old chap lived on his own and was quite spikey but I kept on being unruffled and friendly and interested in him as a person and the spikiness vanished (mostly). He had quite a sense of humour under it all. Of course, it was easier in the sense that I could walk away from it at the end of a shift. I’ll look out for your poems!
SusanMary, I understand so well how you feel. My husband has advanced Parkinson’s and dementia and, like you, I can cope when I have had enough sleep, but find it much harder when I am tired. I whip myself constantly for being impatient, or bossy. His communication skills are very poor and even making a decision about cheese or ham in a batch is very difficult for him and that can drive me insane. I stand waiting for a simple yes or no answer so often, having to repeat the question a couple of times. I remind myself that although I’m in a tough situation it has to be worse for him and I am so thankful for the two carers who come morning and evening to dress/undress and put to bed. I have alarms on his chairs so if I’m not in the room I can hear if he gets up because he has frequent falls and can’t remember that he needs help and his rollator before he can take off. I feel I have become a bit of a moaning drudge, constantly worrying about my back, resentful that I can’t get out except for a quick dash to the shops. I really miss his companionship, the days out we used to have, even just a trip to the coffee shop doesn’t happen now. Oh dear, what a rant but I do sympathise with you, it is very hard. Make as much time for yourself as you can. I have found great comfort in doing little online courses on a platform called Future Learn which is free and covers all sorts of interests. I like the history ones, and the literature ones and have made, and met up with, some good friends through the comment areas. Do have a look at it as it can offer a bit of an escape route and keep the old grey cells going.
Thinking of you and wishing you all the best, and also to Tot whose replies have also helped me.
Future learn sounds interesting I might well have a look myself thanks.
Both you and SusanMary are clearly caring and compassionate people who find yourself in a situation you didn’t sign up for but you are doing the best you can and as I said before that’s all you can do. You make what I believe to be a very important point in missing the companionship. I often think that the physical limitations caused by Parkinson’s although not welcome, frustrating and all that, are at least half way manageable if you can still have a conversation, have a laugh even if on a less sophisticated level than previously. It is a sad fact that with the loss of cognitive function family and friends effectively go through a form of bereavement and do so a second time when the person finally passes. For what it’s worth and I have said this before too, posting on the forum is by no means a one way street. What I write is only my view, it interests me why people post and the sorts of things that come up and as with this they can sometimes become quite lively conversations, which I enjoy very much. More than that however when someone responds positively to something I have written it makes me feel useful that I still have something to offer. I am no longer able to work and nearly 11 years on still do ok for the most part but it is difficult not to feel in my thankfully rare gloomy moments that I am of no use to anyone any more - I know in my heart of hearts that’s not true but Parkinson’s brain is a strange beast and fights hard to let negativity gain the upper hand. Keep up the good work, somewhere in their Parkinson’s brains there may well be a bit that says your husbands know what you do for them even if they can’t acknowledge it. Who’s to say different, not everything is known about how the brain works and I like to think Parkinson’s doesn’t always win! Best wishes to you and Susan Mary
Thanks Tot. Do have a look at Future Learn there are so many interesting courses and they are usually good fun too. I can easily spend far longer than you are supposed to just reading everyone’s comments. If you like reading there is a great one called Country House Literature which looks at novels from the 16th century through to Dickens and along the way there are loads of tips about good books which you may never have heard of.
Also lots of science courses if that is your thing - an excellent one on Humphrey Davy and I can also recommend the history ones on Rome, Hadrian’s Wall, and Richard III. Have fun! I’m metaphorically off to York University for their course on Modern Sculpture in a minute… Not something I was particularly interested in but I am really enjoying it. Hope you stay as well as possible. Take care.
SueM I don’t think you are ranting at all. I am exactly the same. I am the personification of patience when I come home from a trip to the shops and find the aftermathe of an attack of diarrhoea all over abandoned clothing and the bathroom floor, but when he comes into the kitchen on his rollator to ask if supper is ready after I have been washing and cleaning all day and no, supper isn’t ready, I just lose it. Thanks for telling me about Future Learn. I will look into it. The literature and history courses would definitely interest me.
Please don’t ever think you have nothing to offer. I have found your insightful comments so helpful. I don’t want to be a Moaning Minnie even though I know I sound like it sometimes. I felt so alone before I posted here but you have helped me to see things from a different point of view. Thank you so much.
Good luck with everything and I hope you find something to interest you on FL.
Hello Susan Mary,
I am also a carer to my partner who has Parkinson’s, dementia and incontinence. After a long battle I finally got him diagnosed with Parkinson’s in 2014, although he had it years before that. Likewise with the dementia.
It is incredibly difficult to cope, especially as you say care isn’t joined up. It is worse now with the lockdown, having to rely on the odd telephone consultation. He needs to be assessed properly because he has deteriorated rapidly in the space of a year.
Trouble is I am now recognised as disabled which puts an added strain on things. I am in constant pain, unable to take most medication because it reacts badly with me, and at times I feel I have lost the plot trying to deal with everything by myself.
I try and have some me time but it’s becoming increasingly difficult. And yes, he’s another one whose head is well and truly acquainted with the sand. I quite often get told I’m making most of it up and I’m being nasty to him. I understand it is the illnesses that make him act as he does, but that doesn’t make it any easier to cope with.
I can totally understand all you say not only the difficulties with your husband but your own health issues in themselves would be more than enough for any one person to cope with. In my initial reply to SusanMary I made some comments that if you chose to read it that way, could be seen as a bit flippant or not taking the situation seriously. The point is when you are in a difficult situation there are several ways of looking at a problem and creatively finding solutions. I also made the point about choice which you do have but which I freely admit is probably the hardest solution of all, especially if you have people as you do, who say you are making it up or that you are being nasty to your husband. With due respect to them, they are not walking in your shoes, same as you are not walking in mine. I can understand, I can empathise but can never know what you think and feel, anymore than you can really know what it is like to live with Parkinson’s. It is you and your husband who are living in this very difficult situation and clearly you have become the responsible one left to make the decisions largely on your own without help from your husband. The social care system is not an easy one to navigate and sometimes you just have to keep shouting, shout louder or when push comes to shove lay it on the line. If you have an understanding GP, get them to support your need for help, indeed see if anyone involved in your care or that of your husband can help. If not sometimes there is no alternative but to be blunt, as someone recently wrote, you have to say you can’t do it any more, you won’t do it anymore, if you don’t get some help the home situation will break down. As I said there is an assumption an expectation, that a family member will take on the caring role but there’s no law that says you must - indeed I myself couldn’t take that on long term, I am well aware of that; people are very fond of telling me that if in that position I would manage with the unspoken by line of because that’s what you do, what society expects. I know however that I couldn’t and ultimately that would help neither me nor the person I was caring for. Be under no illusion it is not an easy stand to make, some will criticise you for it but does that really matter when you are thinking about what’s best for both of you. Unfortunately I can’t offer any easy solutions as it does ultimately rest with you and how you view your situation and whatever you decide won’t happen until the time is right for you and many people can’t get past that. I am sorry I can’t wave my wand and make things right for you, but please do try to think through future options before it becomes a crisis situation which is rarely satisfactory and in fact the act of looking into options and planning ahead can of itself help since you are being proactive and not passively waiting on others.
I hope that one way or another you get the help and support you both need. I wish I could do more.