Hi I know exactly how you feel although iv not been 10 yrs , my husband has had it 4 yrs , last January he flew to Germany to spend 10 days with his daughter and grandson ( apart from getting a little anxious he was good ) 2 days into the holiday I get a phone call saying he had been put into a psychiatric hospital I had to sort things out with my family as have pets and I flew out there to pick him up and eventually got home January 17th 2020 .
Apparently he had gone into a psychosis Because of the medication he had been taking for last 2 years so they took him off that gradually and he has gone down hill so much , nothing they have tried has helped in anyway his mobility is non functional he is in pain all the time , they are now saying there is nothing else they can do for him and like you I’m doing everything , he is 56 yrs old and I’m tearing my hair out thinking he has only had this for 3 yrs when all this happened and 13 months later it seems they have given up .
Hi Gizzy,
We’re very sorry to hear about how difficult things have been of late. We hope you will at least find some comfort in this community of kind and wise PWP, their carers, and family. Also know you can find helpful resources at Parkinsons.org.uk, and we have a free and confidential helpline where you can speak to a friendly and knowledgeable advisor, at 0808 800 0303.
Please feel welcome and safe, and have a look around when you feel up to it.
Best wishes,
Jason
Moderation Team
Hi @Parcsi, 
Welcome to the forum.
I have sent you a private message so feel free to respond to it when you get a chance.
Best wishes,
Reah
I second that Reah, well said.
I’ve just found your post and can honestly say that I too could have written those same comments. I’m really struggling now, husband been bad for the last 18mths. Capgras syndrome and he has poor mobility too……I feel like running away. I do talk to family and friends but I know they don’t realise to what extent I am feeling so low. It will wear off in a few days time, I will come out of these negative thoughts but at the moment it’s so hard.
Hi January,
We just wanted to welcome you to the forum and thank you for sharing your thoughts. Just so you’re aware, our helpline team is there not just for medical questions, but are happy to lend an ear and help you find local support as well. Please don’t hesitate to make use of this free and confidential resource. You can reach them at 0808 800 0303.
All our best wishes,
Jason
Mod Team
So glad I’m not the only one who wants to run away, my husband is 58 and was diagnosed when he was 47, he is now classed as having Complex PD, it has changed his personality from been a lovely family man to someone who is selfish and manipulative and it breaks my heart, he has OCD and ICD, he has become quite reclusive and it is so hard to get him out and mixing with people at home he just hides in our bedroom, life is quite hard at the moment if it wasn’t for our girls I don’t know where I’d be they have kept me sane but I can’t download everything on them as it is all too personal and embarrassing, lockdown was actually the only thing that stopped me running away
Hello to all who have contributed to this thread. I thought long and hard before writing a post and indeed wrote and deleted it several times, as I felt I was intruding on a thread where I had no right to comment. I kept coming back to it however so I guess it seemed important to me to throw in my tuppence worth. I wish to make it crystal clear that I am not making any criticism of anything anyone has written and if any feel that way, it was with absolutely no intent on my part.
I have Parkinson’s, diagnosed 12 years ago. I have also worked in the care sector and am under no illusions re the carers lot when the person has Parkinson’s but particularly where dementia or other behaviour changes occur. In my experience most carers willingly take on this role and manage well in the early days when symptoms aren’t too bad. What is frequently underestimated is the impact on carer’s as the Parkinson’s progresses and which your graphic descriptions all too clearly show.
I do however feel I must make it clear that those of us with Parkinson’s also carry a heavy load, often from virtually the point of diagnosis. I live alone but do not want my family to be my carer as my Parkinson’s develops. I have taken what steps I can to put my affairs in order so that this is clear but am acutely aware this may not be enough. Perhaps I will be successful in my family not being my day to day carers but despite my best efforts, they will probably be involved in some of the decisions around my care especially if I develop a dementia or some challenging behaviour. I know only that my Parkinson’s will progress. I don’t know how or when but unless there is a breakthrough in the research which substantially changes the options I face, that is my reality.
It is not an easy thing to live with as you can imagine. All I can do is get on with life as best I can and hope I’ve done enough to protect my family and not be a burden to them.
The forum is there for us all and you are entirely right to honestly post what you are going through as carers. The person you care for may have changed out of all recognition, they may be making life unbelievably difficult, you may well feel angry, frustrated, desperate, exhausted and a hundred other emotions and maybe they do no longer understand the price you pay. That’s not to say they never did. I suspect most people with Parkinson’s would prefer it were otherwise but it is not in our gift to give.
People continue to be carers for all manner of reasons, financial, practical, duty, fatigue (makes decision making difficult) etc., and whatever the reasons that’s fine. The fact remains however that there is no law that says a family member should take on the carer role and it may be hard and complicated to change that but you do have a choice about whether you continue in that role or not. It’s a choice not open to those of us with Parkinson’s.
There are no winners.
Tot
I’m so glad you wrote this.
Me too.
Jx
Hi @Tot ,
As always, thanks for being so open and honest. I’m sure your words will resonate with a lot members on the forum. 
Best wishes,
Reah
Tot,
You write so well, so succinctly and so fairly in this case. You put into words what many want to say.
Here I can only contribute in rhyme, to get a few feelings across.
Why did I read these postings tonight
All of a sudden, no guiding light;
I hate this thing attached so tight
It won’t let me go, even in flight.
So often it brings tears to my eyes,
Causes loud sobs from inside to rise,
Finally ending with huge great sighs,
Feeling better but no more wise.
Mine has been a gradual decline
But always there all the time
This thing pushes me out of line;
Before it came I felt quite fine.
Now twelve years have passed so fast
Bringing with them pain to last
As I realise the power cast
By that almighty PD blast.
I hate this thing that eats at my heart
That pulls my very body apart,
That gives me such a burden to cart,
In no way can I anywhere dart.
My patience with it comes to an end,
With myself too, just listen, friend.
So if in the future, I should offend……
Forgive!
These mountains are too high to ascend.
Hi @ElleMac, you are right about @Tot, a lot of deep rooted thought goes into their posts and are always worth reading and are always helpful and constructive. Tot is careful, like the majority of us not to cause offence to anyone in their posts and she makes it clear before setting out what she has to say. Keep on doing what you do Tot, many, many people are thankful for your help and advice, long may you continue. Ellemac, have as good a xmas as is possible, take care, stay safe.
Les
Ellemac this is a very powerful piece and I thank you for posting it here and for your comments and those of cruise controller. As I said, I have no wish to detract from the difficulties of the carer’s role but the reality of what it means to live with a Parkinson’s diagnosis is in many ways quite poorly addressed for a variety of reasons. The posts by carers can be a very difficult read, not because they are inaccurate but because it is hard to accept I and other people with Parkinson’s may be the cause of bringing such distress to others through no fault of our own. As I said there are no winners but as ever, there are always two sides and those of us living with it are more aware than we are sometimes given credit for. The fact remains, however difficult it may be, carers have options , should they so choose that you and I simply don’t have. If my posts means one carer views their situation a little differently it will be worth the likely unintended offence I cause many who will think I don’t have any understanding of the reality of the carers role when in actual fact it’s precisely because I do know and understand that I have written as I have.
This resonates so much. Thank you for posting it.
Jx
I was on the forum on another topic and came across this long running thread and feel I should really post something given my experience of being a carer and working for Carers uk.
I have come out the other end now as my husband has CHC continuing care at home ( although it is always subject to annual review). He has parkinsons dementia and cognitive damage from very poorly managed delirium during a 6 month stay in hospital, he had PTSD which has now abated but if triggered still arises. We were initially declined chc after the initial checklist was done by an unqualified member of staff in the hospital, we brought him home as his treatment on the ward in hospital was so poor. Once home the arranged care failed to materialise and we were left for three days with nothing. He was still in delirium, had to be moved by rotastand and could not move. The care arrived but it soon became apparent was totally inadequate due to the intermittent nature of the visits. My husband developed separation anxiety from me with panic attacks lasting upto three hours. Prior to hospitalisation he was showing signs of Parkinson dementia but it was just manageable. I still felt under huge pressure. We reapplied for CHC funding which was granted with a recommendation for two carers in the day and a waking night with the two assessors telling me they didn’t know how I had managed with great concern for my well being. This recommendation was passed to the CCG for funding and I received a call to ask if I could manage with two 4 hour shifts in the day with no night care. At that time I was in a very vulnerable state and agreed. The care agency had very little training in managing my husbands challenging behaviour as they mainly did domiciliary visits. We went back to CHC and eventually were allocated live in care. The two live in carers we had ended up not able to cope with one refusing to get up in the night. He was sacked. The care agency then cancelled their contract with the CCG and we chose another specialist forensic agency who negotiated 24/7 care with initially no carer working for longer than 48 hours. This care agency has been brilliant , my husband is hugely improved although his cognitive condition has deteriorated. His consultants, one of whom is a well know PD specialist say he is only alive due to the good care he gets at home. I talk to the carers we have had many of whom have worked in care homes, but have left due to the working conditions and lack of time they are able to give to dementia patients to improve their well being and help them to feel more settled. I now for the first time in years have time on my hands and am able to monitor my husbands care along with my highly trained NHS staff children. All care should be like this. I got to the point where I felt I was disintegrating as a person.
It needs to be emphasised that the needs of the carer are vital. If the carer breaks then everything else breaks down, including the family structure as the whole dynamics within the family change. At the moment there is a severe shortage of care home places so even if the decision was made for someone to move into a care home finding a place in the right home could prove very hard.
To say someone has a choice as to whether they continue to care or not completely disregards the feelings of someone who has been in a long and happy marriage and their loyalty to their spouse. All carers need to be able to let off steam in a safe,in a non judgemental and understanding environment. This is what the forum is for. Anyone who has capacity cannot be put in a home against their will. Although you could force the issue by moving out of the family home as was recommended to me. I was horrified.
Please Parkinson Uk put your considerable weight on lobbying the government to improve the conditions in care homes and the carers who staff them and all carers/support workers. Many are dedicated but leaving in frustration at the conditions they find themselves working in. Give more support to those caring for their loved ones at home to enable them to continue without jeapodising their mental health. I am told by experts pwp generally fare much better when able to stay in their home and it is supposed to be the current governments thinking as well.
Parkinsons becomes a very destructive illness affecting both the pwp, their partner and family. The only saving grace for the pwp is as their condition progresses,they often have no insight into their condition and how it affects others. I think if my husband knew all we had been through he would be devastated. As it is he is happy most of the time, enjoys seeing his family and grandchildren and generally gets on well with all his carers. The only downside to his totally unexpected improved mobility he is a huge falls risk so has to be watched all the time as he has no appreciation of risk, still thinks he can do the gardening and DIY and also still goes to work every day. He used to work in the courts so will often ask for the papers in preparation for a meeting with the high court judges! Yes we still have our sense of humour.
Hello yogalady
I’m not suggesting that these decisions are easy, that the system is perfectly geared up to provide good quality care be it in a care home or family home or anywhere else and I certainly wasn’t disregarding the emotional cost. I was merely pointing out carers do have a choice re continuing the care role or not if they so choose and that we with Parkinson’s may reach a point where we are no longer aware but that doesn’t mean we have always been blind and deaf to the price carers pay nor is it easy to live with the knowledge that we are the cause.
Tot
I fear that this is a depressing little post so I wouldn’t recommend reading it - though I do feel that it is a subject that desperately needs opening up to some honest debate (a view backed by the sheer amount of posts on this topic). It goes without saying that it just represents my personal views on a very tricky subject. It is a can of worms that I should maybe leave alone but it is stupid O’Clock in the morning so I am blaming lack of sleep and my normal early hours lack of self-control for my arguably impaired judgement in deciding to go ahead and click reply 
x
Hi Yogalady,
You are undeniably correct in saying that Parkinson’s is not easy whichever way it affects you and I appreciate the time you have taken in writing about your struggles and endeavours to ensure that your husband has the best care possible - a fulltime and incredibly challenging role to take on.
My personal view is that Parkinson’s needs more funding in terms of health and social care whether you are the person living with it or somebody offering care and support. There doesn’t, however, seem to be any appetite from any quarter to fight for this leaving many people living with Parkinson’s dependent on (sometimes beholden to) a partner or relative who may or may not want to take on the role and who may or may not have the capacity to provide the level of care that is needed and leaving family members feeling that they have no choice other than to take on this role irrespective of their wishes or ability to do so. Balancing the needs of all parties in such relationships is difficult and financial pressures on the health and social care system can lead to unwanted and unmanageable care situations going unchallenged and unsupported.
As somebody living with Parkinson’s in a society where the impacts of degenerative health conditions are measured primarily by the degree of burden an individual living with such a condition places on friends/family/society, I find maintaining my own independence, dignity and sense of worth a constant challenge. Policies and strategies in respect of Parkinson’s seem to be largely based on the notion of the unaffordability of the care of people like me moving forwards. I won’t go on but it can be hard to feel worthwhile when this is the case. I live alone with Parkinson’s and yet the first thing I am asked at any medical appointment I attend is how close any siblings live to me and whether or not I have friends who can help me out. In the distant past when I had face to face appointments, there was usually an empty ‘relative’s chair’ sitting next to me and I’m inevitably given, or referred to, advice sheets that address both me and my partner or carer in spite of the fact that I quite clearly do not have either. I am never asked whether or not I want to involve friends and family in my care, there just seems to be an assumptin that neither party has a choice and that I will increasingly take on the role of burden with my family taking the role of unpaid carers saving society from the cost of my care.
I would like the opportunity to discuss my future care with health professionals and I believe I have a right to say that I do not want to be unceremoniously dumped on my family if/when the time comes that I cannot make my own decisions, and equally, I believe that they should be able to exercise their right to refuse to take on such a role free of judgement but these are not notions that anybody really wants to hear. I want to be treated as an individual who is a worthwhile human being and as such, is worthy of a level of professional care and treatment in my own right but with constant moves to accommodate, rather than challenge, a system of state care which tries to paper over the cracks by relying on unpaid carers, I struggle to see this happening.
Parkinson’s affects all those touched by it but it affects us in different ways and in my opinion, this needs to be recognised and discussed opely and honestly. As somebody living with Parkinson’s, I can never have a day off, or even a minute off, I cannot have respite from it, I cannot have a holiday from it and I have no future that it will not be a part of. My sisters feel deeply for my situation and are definitely affected in all sorts of ways but their experience of it is very different to mine. Recognition that we are not all affected by Parkinson’s in the same way and a willingness to look at all involved as individuals with individual wants and needs and pressures is badly needed but I feel that it will not happen in a system where cost effectiveness is the key driver.
Jx
A really early good morning to you Jackson. Thank you for your reply as you might guess I have plenty to say on this subject ie the care crisis and have access to much well informed input about the current situation, Thoughts about yr situation as someone who lives alone and the anxiety you must feel. However it is still very early and I really must try to get back to sleep. I will get back to you when I am able to formulate a reasonably articulate response. Hope you are able to sleep as well. …….
Hello Jackson
Thank you for your informed response. I will try and itemise the topics that have arisen from this post.
Care Crisis
1 In this county social services have declared a critical incident. My youngest daughter who works in adult social care has been put on notice to stand down and work as a carer. She is due to have updated training to facilitate this. There are hardly any places in care homes and hospitals are unable to discharge patients. The care agencies who provide domiciliary visits are unable to take on care packages due to shortage of staff and again hospitals are unable to discharge patients. Our care agency is based two counties away. They are inundated with requests from other agencies to cover care packages as they have no staff. Admittedly some of this crisis is caused by covid but there is still an ongoing problem with shortage of care. As you so rightly say family are expected to cover the gaps in care even when the care needs are overwhelming. Hopefully things will change but this will take time. Families/ partners do not have a choice but to take on care unless they are prepared to totally abandon their relatives.
We now live in such a fragmented society, children often move far away and it is left to the state to pick up the pieces. Our african carers are amazed by the way we care for our elderly. in their home country the extended family would care for the infirm relative with everyone taking their part. Maybe it is time for our care to be more community based and the elderly/infirm to be given more respect What cannot happen, as is happening now is for the burden of care all to be placed on the closest relative. As parkinson’s progresses this burden of care can become intolerable.
Moving on to a pwp living alone. Some years ago now when I was working with the local parkinson advisor she told me how people living alone with parkinsons actually did better as they were forced to be more independent, maybe you and Tot are good examples of this. I fully take on board your feelings about attending clinic appointments alone and the expectation of there being someone else to take responsibility for your care If you had cancer then you would have your macmillan nurse to be a point of contact, ensure your care and treatment was going to plan, chase up scans, liaise with your consultant and act as your advocate. This doesn’t happen with other illnesses. If you were admitted to one of the major centres there may well be a parkinson specialist nurse around but there is no advocacy in the district hospitals. When my husband was in hospital for such a long time it was my elder daughter who visited the ward picking up on poor treatment ensuring the relevant consultant was called to assess, insisting his bed was moved to a quieter area etc etc. We are fortunate to have care professionals in our family, the majority do not have this advantage. The Parkinsons Community urgently need more Parkinsons nurses based in hospitals to give informed advocacy to patients. More nurses would discuss with you your fears for the future and discuss various options etc. For instance would it be helpful to have a support worker spend time with you for half/one a day a week rather than domiciliary visits especially if they could drive? Alternatively would it be helpful to have a parkinsons volunteer to attend clinic visits with you as you always need to second set of ears. Is this something your local branch could take on. Can you lobby your MP to put pressure on to provide more targeted money for the NHS.
Several years ago now I attended a support group for the partners of pwp through my work with Carers UK This was a place where carers could gain practical support and were also encouraged to let off steam however illogical, ill informed unreasonable and so on. This is a very necessary safety valve to let go of the frustrations we all feel with the caring role .However it most definitely was not the place for pwp. Maybe it would be better to give this section of the forum a miss.
I also recall a couple whose husband had early onset parkinsons, he had to give up a promising career and they were both obviously finding things difficult. However both said “We are in this together” Both accepted the difficulties of the other and there was no question of either of them thinking they had the rawest deal. Both were anxious to minimise the difficulty of the other.
As carers,none of us are perfect, we too are all grieving for the partner who seems to be disappearing and going through the various stages of that anticipatory grief also perhaps facing life without our partner and thinking about how that will play out, please lets just care for one another and show compassion for everyone,