I would really welcome conversation about the challenge of providing care and support… The impact on family life etc.
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What a huge topic. For each and every one of us the challenges may be very different. Impact on family life is also so very different. My circumstances are as a partner of someone withPD. We are in our 60s, with no children at home, and I’m relatively fit. I struggle with the loss of a hoped for more active retirement period. All the imagined things we might do, won’t happen. The emotional toll is huge. But it’s nothing compared to the emotional struggle of my partner. All life is now planned around medication times and short Windows of opportunity to do essentials when not in a wear off period. Of course even those times are not definate. When I feel a bit overwhelmed with it I come onto the forum and read some posts that can often help me, other people’s positivity can be uplifting. However, the general public have no idea how difficult it is living with PD 24/7,365.
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Absolutely… Thank you for sharing. This is such a mammoth topic but one which weighs heavily on me. Sometimes I feel completely overwhelmed, other times sad even angry, there are days when I feel alone.
My husband was diagnosed in 2017 at the age of 51… I’m watching my best friend disappear and it hurts so badly…
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Hello Ladybird52
I have been wondering how I might reply to your post. Jandc is right, it is a huge topic and your comments in reply are equally valid, legitimate and not a little bit heartbreaking. I have several times used a phrase in response to posts on a similar theme to yours and that is with Parkinson’s there are no winners and whilst I do believe that to be true, the other side of the coin and the one I choose to concentrate on, is not what I’ve lost but what I still have and that’s not something I say lightly. Whatever you may think and feel whether a person with Parkinson’s, a carer, family member or friend is legitimate and tough.
For the carer, at the beginning it may not be too bad, the person with Parkinson’s can probably function quite well and may do so for many years but that road can become long and relentless and if I might use your phrase ‘I’m watching my best friend disappear’ will sum it up for many people. You are quite right, it can be a lonely life as the person you care about is no longer the person you are left caring for and you have every right to be angry for a life lost both as a partnership and as two individuals. It is often said you have two bereavements one for the person you knew who is still living and a second when they die.
For the person with Parkinson’s it means living with the knowledge that physically they will decline and may become difficult for the carer to manage, but they also live with the knowledge that their future may bring challenging behaviours, dementia and the like, no longer the person you were. In a way they are alright if that happens because they will not comprehend what has happened and how they present now will be normal to them. Make no mistake however, it is not easy living with the knowledge that at some point in the future you may be the cause of such distress and there is nothing you can do about it.
I fall into the person with Parkinson’s group. Last December saw the 13th anniversary of my diagnosis. I was a few months past my 52nd birthday. I do what I can to stay well and having a positive mindset is crucial to that. It doesn’t come with 100% guarantee and I have my moments of course I do, but mostly I concentrate on today and make it the best I can for me and those who care about me. It’s all I can do to live a life with an unknown future. Those around me follow my lead and although Parkinson’s is never far away, it can’t be because it impacts on so many things, nor does it dominate my time or our time together. My way may not be for you. But I do hope you find a way to see what you have today for this 24 hours is a once only.
And just in case I do become very challenging and difficult at some point in the future I wrote this some time ago and indeed have copied it a couple of times on the forum but seems right to copy it again here
Tot
REMEMBER ME
No-one knows what the future holds
But one thing is certain for me
That over time my life will change
Since Parkinson’s sets no-one free
And as it travels its relentless path
I don’t know what its impact will be
I have no choice and can live with that
But to you I make this plea
That however hard it looks to you
Never pity or be sad for me
I may not be the person I once was
And need help to do most things
I may not be able to talk with you
Or laugh at the comedy life brings
But somewhere deep inside
Even if then not easy to see
Is the person I always was
And how I’d like you to remember me
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Thank you for sharing this… Very emotional and heartfelt. I need to digest this…
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I appreciate it’s not an easy read Ladybird52, and it may well say things you’d rather not hear or believe. However for me, staying positive is fundamental to how I live with Parkinson’s and I can only do that by recognising the truth of my circumstances which in a nutshell means valuing today the here and now. Right now, the sun is shining, I am getting ready to walk up to my friend’s house for Sunday lunch and to see her gorgeous 15 month old cockerpoodle dog, Bear who has the most incredible eyelashes and later on I will walk home. Perfect way to spend a Sunday. Hope you enjoy yours
Tot
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Hello Lady bird 2.
I really have got the T shirt for this one. In fact I was about to suggest the forum have a more private section where carers can let rip about the frustrations of caring for their loved one .
I will start by stating several irrefutable facts. As a carer you are very prone to mental health problems somewhere along the line. It is really important to have your own self care routine. Do not let your caring role define you. You are still a person in your own right and all too often the focus will be on the pwp not you. Think of your mental and physical health as a jar which you are continually topping up with whichever activities/ hobbies you enjoy.
If you break everything will fall apart.
Try to take on board you are in a state of anticipatory grief with all its various stages including anger, depression,denial, bargaining etc and you will go through these stages, perhaps revisiting them. If you have children they too will be grieving but will probably be several steps behind you on this journey. Acknowledge this.
It is truly heart breaking to see the slow deterioration of a loved one. All too often the pwp loses insight into how they really are and this can prove challenging. It is important to deal with the reality of the illness and then take positive action to enable you both able to live your best possible life. You will have to hit the reset button on your life but it can
still be meaningful perhaps even more so.
For those of us who are living with Parkinson’s dementia try to not lose sight of the person behind the illness. Do not allow others to make Ill informed judgements and insist the pwp is treated with respect.
Behaviours may be challenging mainly out of frustration over having lost control. An important issue for us.
This area is exceptionally hard.
Finally we all live with uncertainty no one knows what the future holds. It is important still to feel grateful and try not to get overwhelmed by how hard everyday life can be
We can all still have love in our life in an ever changing form.
Hope this starts the conversation off.
Good care is increasingly hard to find and the pressures on carers given the current situation are becoming intolerable.
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I tend to agree with “carers” having a separate area within the forum to vent etc. I’m 6 years in (diagnosed at 48), work FT, drive, workout etc. However, reading such posts only brings it home that my own slowish progression will be short-lived. My main concern is the humiliation not only that I know I will personally feel but the suffering and upset I will eventually cause my loving husband and son. Please remember when posting that Parkinson’s sufferers (me included) are constantly looking for positive and success stories on these sites. I for one have decided to sign out of the forum as some of these posts do have a detrimental effect on my wellbeing, especially if having a bad day! Parkinson’s doesn’t take away ones ability to read, so please be mindful of this. Thank you Tot, as always, for the positivity!
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Hello Bracken. Firstly thank you for agreeing with me that carers should have a more private area to post. I have workedwith Carers Uk, Parkinsons Uk and the NHS. I am now the main carer to husband who after 18 years is very poorly.
I do not personally feel that the carers section of this forum is a good place for you to be. If you attended any of the support group carers always meet privately.
If your Parkinson’s is well managed I would say it is very important for you to put the images that spring to mind when reading these posts on a shelf or a box and get on with living your best life.
For at least 10 years we made a point of doing as much as possible including valuing our children and grandchildren. As I intimated all illness makes you value greatly the most important things in life which are mainly to do with love and appreciation. It is these things that will nourish you IF your Parkinson’s progresses. If you follow the research which I would recommend you do there is every reason to feel hopeful.
However there are many carers who are struggling and their needs deserve to be meet for the good of everyone involved, especially their family member.
Go well Bracken. I am sure the forum will be here for you IF you need it
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This is a very difficult topic indeed but one which really does need a realistic and respectful discussion.
I think discussion and differences of opinion are healthy and I read wise words in all of the posts on this thread - some of which I realise I am just repeating.
I’m not going to preface every sentence with ‘in my opinion’ but it goes without saying that the following are my personal thoughts and opinions based on my experiences of living with Parkinson’s at this particular point in my life. So in no particular order (
)…
Much of the literature on this topic presents an idealised and simplified view of a very complicated issue and very complex relationships.
Some of us who have Parkinson’s live alone - we are a group who are constantly under represented.
Some of us with Parkinson’s are also carers. I was diagnosed at 48 and I’m now 58. Both of my parents are still alive but need increasing amounts of support - which I am doing my best to provide.
Some people with Parkinson’s have a partner who also has chronic health needs. Some of this group are carers for their partner.
Although there are some commonalities, all forum users are on their own path and I think we all need to be respectful of that and be mindful of imposing our own experiences on others. I think it’s very important not to take everybody to the end stages of Parkinson’s when there may well be a lot of life to live before that.
Statistically, a great many people without Parkinson’s will be touched by dementia/alzheimer’s, Cancer, depression and mental health needs (to list just a few) and it is the natural order of things that everybody will eventually decline and die but we do not expect the general population to jump ahead and deal with everything that comes with this knowledge before they get to this point.
Parkinson’s is hard for everybody involved. It is not as simple as people with Parkinson’s and carers. There are brothers and sisters, children and parents, friends, grandchildren, stepchildren and many other groups that I haven’t even thought of.
If the forum has a private area for people who class themselves as carers, then it also needs a private area for people with Parkinson’s and maybe for children of people with Parkinson’s and maybe for parents of people with Parkinson’s … Where would it stop?
As I said at the start, this is just my personal point of view but I think creating private areas within the forum would be hurtful, divisive and would lead to even more people deserting what was once quite a vibrant community.
The forum cannot be all things to all people and maybe some thought needs to be given as to exactly what purpose it is serving/can serve. Like a number of other people I know, and as has already been said, as somebody living with this condition I very rarely read the forum anymore because it gets me down.
I’m not unrealistic, I know what my future could look like but I choose to live the life I have now as well as I possibly can and when bad times come, as they will come for everybody with or without Parkinson’s, they will not negate or delete the good times I have had.
As I said, just my own thoughts on this matter.
Take care all. Jx
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Hello, I’m just wondering if anyone is in the same stressful situation as me. My husband has had PD for over 7 years now. The last year has seen him hospitalised every time he falls (mostly just rolls) off the bed and is then unable to get back up. On most of these frequent occasions he’s unhurt but as he’s totally unable to get up, I have no choice but to ring for paramedics. This usually then follows a stay in hospital. On a couple of occasions he’s actually had an infection, i.e. UTI or more recently a chest infection. These falls always seem to happen in the middle of the night when no help is around. Often I’m not aware he’s on the floor straight away if I don’t hear him so he could be there a couple if hours sadly. He’s currently in hospital after one such incident and I’m feeling very stressed with it all. I hardly ever get more than a few hours sleep and then have to get up and do everything as per the following day when I’m often physically and mentally exhausted. During the day when his meds are working well he’s a different person than the one in the early hours! He can go walking with me, out for lunch and go to his balance class etc as his mobility in that way is good at the moment… He does struggle at times to get up and down from chairs and in and out of bed. This results in when he needs the loo in the night, and as he finds it so hard to move quickly enough, he has begun to have ‘accidents’ which add to the workload for me and obvious stress for us both. I’m at the point of trying to find out how much a night carer in our home would be. This would allow me to have at least get a good night’s rest. When my son comes to stay to give me some support, I am totally relaxed knowing there’s someone here with me. I’m sure I’m not alone in this situation so I’m hoping to hear back from anyone who can offer any advice. Thank you. Jean
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Hello Jean
As I have experience of most of these things. I thought I should really reply. I am sorry things are so stressful for you but in my experience good practical support is the most useful.
With regard to his continence and accidents you can ask your gp for a visit from the continence team. They will go into the various strategies and equipment that is available to you.
Also you could ask for a visit from physio to improve mobility with regard to getting up and down from chair/ bed.
A visit from the OT with regard to falling out of bed is called for. There are an assortment of rails to fix to the bed but you need a proper assessment.
His infections could be causing confusion especially at night and you could discuss with his gp the possibility of long term prophylactic antibiotics
Hospital is not a good place for anyone with a long term neurological illness Hopefully if you can insist on the right support for you both this can be avoided. I have purposefully not
gone into the various strategies that are available as the relevant professionals will do this.
Up in the middle of the night waiting for an ambulance is a very lonely place to be and when you have broken nights it is very difficult to manage the following day without getting frustrated and cross.
If you can afford it a waking night carer will give you the respite you need.
You obviously have good quality of life together so hopefully these strategies might help.
I wish you well
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Good morning yogalady, and thank you for your reply. Most of the things you’ve addressed I have already done. He’s been to an incontinence clinic and also had a bladder scan. He takes Mirabegron daily to help with this. He is not incontinent as such, it’s because he can’t move quickly enough in the night to get out of bed that sometimes he doesn’t quite make it. PD nurse has suggested wearing a catheter at night which he’s not keen on. Also I’ve read that this can result in increased risk of UTI’s. I’ve had physio around to the house and asked her to show him how to get back up from the floor with minimal help from me. She noted his efforts and agreed that he finds it almost impossible. It’s this situation which leaves me with no recourse but to ring paramedics. He has a grab rail on his bed which isn’t very long and wouldn’t stop him from rolling off the bed. I didn’t know there were other types, so thanks for that info. I’ll make enquiries with occupational therapy. He’s still in hospital and we’ve now had a meeting with his neurologist who has reviewed his meds. Upshot of which is he’s added an extra dose of his Sinemet so he will take it four times a day instead of three and with less time between as he said the meds were wearing off too quickly. He’s also slowly reducing the Ropinerole with a view to stopping it if he seems ok without it. I think this drug can increase the risk of confusion so I hope this reduction will help him. He’s also recently been taking CR Sinemet at bedtime and coincidentally he’s been much worse at night…(another question I was going to raise on the forum was if anyone else has had a bad experience with this drug?) The consultant has stopped this and introduced Melatonin at bedtime instead, so I hope all this helps address his current situation which is becoming untenable for us both. He’s coming home tomorrow as physically he doesn’t need to be in hospital and I totally agree, it’s certainly no place for those with PD… So, although I’ve had a break and caught up with some sleep, I’ll still be naturally anxious during the night. It’s such a soul destroying and wretched disease as it progresses. My heart goes out to all who have to live with it and to their carers. Thanks again for taking time to reply. Much appreciated. Best wishes, Jean
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Hi Jean.
Through OT we have a bed that lowers right down plus crash mats. This works as if he rolls off there is no danger of him hurting himself . Also it is simpler to get him back on the bed and then raise it. We also have a bariatric bed which is wider. This also helps with confusion/ panic at night as he feels more secure. My husband also has dream enactment which means he will often try to get out of bed when he cannot walk unaided.
When on the floor if you can get him seated with his back to the bed when lowered it is easier to manoeuvre him back onto the bed. I have done this many times. Message me if you would like more info about this and exercises to help with rolling over in bed and coming to seated etc. I used to teach them.
With regards to meds. My husband has been taking circadian (melatonin) for several years now. I feel it is another strategy to encourage a good night.
My husband had been on mirapexin, another dopamine agonist like ropinerole, for a long time. This was discontinued and he seemed much better for it overall with less daytime sleepiness and confusion.
The Sinamet CR taken at night, we have taken Madopar CR ( a similar drug) for a long time . It will mean that he is more able to move in the night but if he is having extra in the day as well this may be enough. You will have to monitor and feed back.
It seems medication wise your neuro is really on it. Unfortunately changes take while to come into effect.
I sincerely hope you can work to manage these night time issues, especially as they are happening relatively early on when you still have a lot living to do.
Finding the right solutions is often challenging but worth it in the long term
I have been in this situation and understand how challenging it can be. Go well Jean
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Hi again Jean. Forgot to include the wearing of a convene with bag at night. I would suggest you trial this. The risk of infection can be mitigated by using daily disposable night bags. This has worked for us. My husband had intractable hospital acquired kidney infection. We are now on top of this.
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Good evening yogalady, and many thanks for your detailed reply and useful information. The bed sounds to be an excellent idea! I wonder why OT haven’t thought to mention that to us before? He’s been discharged from hospital today so we need to start acting asap to get these things in place. May I ask if the bed is very heavy/bulky? The bedroom is upstairs. Also are they very expensive. I’ll contact OT tomorrow and ask for someone to come and assess his need for this type of bed. Thank you for the reassurance with the Melatonin. Fingers crossed we have a better night tonight. He has been asked about the possibility he could wear a convene which would certainly help him not having to get out of bed during the night. However he’s not keen at all. I’ll mention it again as I know he’s totally fed up with these almost monthly call outs to paramedics and the subsequent hospital stays and stress they result in. May I ask if your husband only wears the convene at night? I think my husband is worried that he may stop being continent in the day if he starts relying on a catheter at night. There’s now certainly plenty for us to discuss with OT and physios. Once again thank you so much for your help. Very much appreciated. It’s so good to hear from others who can actually empathise with our situation. I’ll keep you posted. Wish me luck. Goodnight, Jean.
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Yes. He only wears it at night. Was concerned it would affect his day time continence but this hasn’t happened.
All items through OT without charge.
With regards to other equipment I would be guided by OT. A slide sheet might prove useful . We do now have a chair but do not use it exclusively as important to still work on getting in and out of chair. We only had this when suggested by consultant.
Thinking the increase in sinamet might increase his mobility and if you can afford it private neuro physio sessions might be really useful. Unfortunately experience has shown nhs physio can be quite limited and basic. A good neuro physio will give you a daily movements/exercises to do which can be a real game changer.
Your consultant might know of someone. There are quite a few ex nhs physios who have set up privately due to the frustrations of working in the NHS
As my daughter, who is a nurse consultant says it is always important to have a plan and routine.
Unfortunately we all have to fight to get good care. I luckily have informed family to support me but am very aware others are not in this position and am happy to pass on what I have learnt to others. I hope all goes well for you Jean and you can manage to get through this particular phase.
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Thank you for the info, I hope I wasn’t being too personal. I think the time may have come for my husband to go down this route for both our sake and sanity. I can’t carry on much longer having broken nights. It’s taking its toll on my health now. I’ll get in touch with OT and continence clinic tomorrow. The physio did say he would find it difficult at first as obviously since a child he’s been going to the loo in the ‘normal’ way. I can understand it must take some getting used to. I’ll keep you posted on what I really hope is a happier note. We’re at rock bottom at the moment so hopefully the only way is up now… Best wishes to you both. Enjoy your evening. Jean
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You are very welcome Jean. I sincerely hope you can find the care support you clearly need at the moment. If you can take it as it comes and try to keep things simple. You will get through this. Jxx
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Thank you. I’ll keep in touch. Goodnight and take care too. Jean x
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