Does my Mum have Stage 4 Parkinson's?What can I do?

Hi. My name is Sue.I am a carer fo my Mum who was diagnosed with Parkinson’s in January 2015.My role as primary carer is becoming ever more demanding, as I,like many carers, also have to ‘juggle lots of other balls’ at the same time,i.e, home life, running a business,looking after a sick Siamese cat,financial worries. I am concerned that my Mum is displaying Stage 4 Parkinson’s symptoms-her movement is now VERY restricted,she is becoming more confused and anxious cannot sleep properly-but I am a bit reluctant to contact her GP without her consent;also, my family’s experience of healthcare professionals has not been very good.My mum suffers dreadfully from anxiety but refuses to take any medication to help with this;also, she does not wish to undergo occupational therapy.My sister and I, especially, are struggling to cope and we all feel very stressed especially about having to leave her alone sometimes-although someone is round her house every day.I stay over for 3 nights a week,but my ‘shifts’ are becoming longer and stressier as Mum can’t cope.Would anyone out there be able to advise me on the best course of action?

Hello, my heart goes out to you all at the complex and difficult situation you are all facing. I am glad you came to the forum, we may not be able to solve your problems but we can certainly offer our support and be there for you as a safe sounding board if you need to shout, scream, weep or laugh hysterically whatever you need. You will always find a listening ear and please do use us. As to practicalities, may I suggest you give the help desk a call to help you find out what options you have as a starting point. I can understand your not wanting to contact the GP without your mother’s consent but perhaps you should consider going for yourself as you are clearly under enormous strain as indeed is your sister. In helping you cope it may help the overall situation. Finally I would say please do not let past experiences colour your judgement of ‘professionals’ per se. I understand your feelings better than you could know, the truth is often that the system doesn’t fit expectations it is often slow and seemingly senseless to those who just want the best for their loved one. It may not seem like it but most professionals want the best too and work hard within a complex system with too few staff and overstretched budgets. If you have had genuinely poor experience please complain it can’t be put right if no-one knows. I speak as one who has experience of both sides good and bad. I hope you are able to find the help you need and I am sorry I cannot do more. If good wish wishes help I send bucket loads.

Hi sue. I just wanted to offer a little support. My mum had parkies, my husband has parkies. Anxiety is a big problem for my husband and influences his symptoms hugely. He has found more peace now through talking to a counsellor regularly but anxiety is taking him more than his Parkinson’s I feel. I wasn’t primary carer for mum but I know she was like two different people depending on her stress levels. My husband has made a choice not to do his exercises, he has enough of fighting and has peace with that but it’s very tough for me now watching him deteriorate quicker as a result but I respect his decisions. So I understand your frustrations that your mum won’t see her gp, seek help. It’s very very difficult and my heart goes out to yiu. It is worth seeing your gp for a chat as you have to be able to look after yourself to be able to look after mum. I’m not really up to date with stuff but mum had attendance allowance and there’s carers allowance, perhaps these might enable yiu to get some help in. Plus day centres etc but of course mum has to be willing and that’s where I find it difficult, putting my needs first sometimes when it’s against what my husband would prefer. But we do have to look after ourselves too. Parkinson’s nurses are fab, have you got one? Hope some of this helps, yiu aren’t alone and there will always be someone on here to talk to x

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Hi. Thank you so much for your response.I will definitely contact the Parkinson’s UKhelp line tomorrow.When I am round Mum’s tonight I will attempt to broach the tenuous subject of contacting her GP.Although she is loathe to have any involvement from healthcare professionals, my partner Frank and I feel that we really do have to go down this avenue as I am especially finding it so hard to cope.Also, I am trying to arrange a ‘family meeting’ whereby we can discuss issues.However, this may be easier said than done as Mum tends to stick her head in the sand and my sister Sarah is being very selfish and unreasonable;at the moment, she is staying out of 'the loop’by not contacting anyone.Whether she likes it or not,though, she is still part of our family and this situation.Well, I will sign off for now.Thanks again for your support. I will keep you posted. Kindest regards, Sue.

For what it’s worth I think you and your partner are doing the right thing and you have reached the point of needing to be cruel to be kind. To go on as you are will surely lead at some point to a crisis situation, never satisfactory, and if your own health breaks what will your mother do then, or your sister come to that. I hope you manage to arrange the family meeting and may I suggest you think about how and what you want to say ahead of time, be honest and as blunt as you can and stick to your guns. They won’t in all likelihood like what you have to say but be brave, you are doing the right thing and you do need to put yourself first if the home situation is going to hold. Let us know how you get on, you will be in my thoughts

Hi! Thank you so much for your reply.I am at home at present as I don’t go round Mum’s until late afternoon for my ‘shifts’.On Wednesday and Friday I go round at 5pm,but on Sunday I get an extra hour.Yipee! However, even when I am not round Mum’s, I feel tremendous guilt and anxiety.For instance, this morning I called her and she is having a ‘bad day’ which usually means that she can’t move properly(if at all) and is suffering from an attack of anxiety.So, this means that I have to drop everything and go round.Often, this will involve me staying over for 24 hours which is a real strain as I am trying to balance my home life too!On July 7,I went round for my shift as usual,but, I had a real surprise. Mum told me that she wanted my sister to look after her in future.Point blank. I had no prior indication of this decision and there was no dialogue. I felt shocked and betrayed. When I finally got an explanation from Mum a few days later her reasons were that ‘don’t do anything,and stay up late’(!).Totally wrong on both counts;she seems unaware that the 'staying up late ’ problem is partly due to her;every night when I stay over she is up at least 6 times-going for a wee,and taking her poodle out,making tea as she can’t sleep and turning the tv on at high volume.
My sister had quit her part time job and very quickly arranged a direct debit arrangement for her care fee.To make matters worse, all of my possessions were placed into bin liners which were unceremoniously dumped in Mum’s garage.
My partner Frank and I found this situation very distressing and could not understand why Mum chose my sister as her primary carer when she has expressed concerns about my sister’s negative behaviour in the past; she is very moody,agressive, and has even said on many occasions that she wishes Mum would die.My sister has been very abusive toward me regarding money-accusing me of stealing from Mum-which is so unfair as we arranged two years ago for me to be Mum’s paid carer as I am unable to work as Mum needs care.Also, my sister has accused me of being lazy,emphasising that she works and I don’t-but I CAN’T! Frank and I knew that the new care arrangement wouldn’t last. Lo and behold, after just one shift Sarah my sister changed her mind and I have resumed my role but this time ‘I have to do everything’.As if I’m not doing enough at the moment.Sarah has since found a new job;a bit of discussion with all of us would have been nice as this situation is simply untenable and unfair on Frank and I-we feel she has been very selfish.I have informed Sarah that even though she wants to somehow ‘remove’ herself form this situation by getting a job,she is still part of the family and still has commitments.At present, Sarah is experiencing mental health issues-guilt?-and is not contacting me (to somehow remove herself from the loop?) and, yet again Frank and I are on our own.I just don’t know what to do anymore. I went to see my GP who wasn’t at all helpful;taking Prozac is not going to solve anything.I have tried to expalin to Mum and Sarah that we need to talk and try to come to some long-term arrangement; in particular, I have told Sarah that this resolution is paramount as I will no longer tolerate any verbal abuse from her.Gosh, what a mess! On the plus side(!) I get Carer’s allowance and Mum gets Attendance Allowance.Tomorrow, I will get in touch with Parkinson’s UK help line and see what they can suggest.I know that I have to look after myself;Frank is becoming very concerned regarding the affects this situation is having on me.However, I do have some ‘me time’. I read a lot, I guess to escape.65 books so far this year!Well, I will sign off for now. Thank you again for your support.Sorry that my reply was so long, but I really wanted to talk to someone who understands.Kindest regards, Sue.

Hello again, no need to apologise for the length of response,I hope the act of writing it has given a bit of release from the build up of pressure. I wish there was something I could say or do to help resolve your situation but I and others on the forum can and will be a listening ear and support you as best we can. Just a point for you to think about. Have you thought about what arrangement you would like ignoring all the obstacles. If you could set up any arrangement for your mum, what would it be? If you are honest the results may help. Be aware it can throw up stuff you would rather not admit like you don’t want to be a carer any more, you want to be a daughter. But knowing you want will help decide what compromises you may rbe prepared to make, if any. You do have choice but the decisions can be tough going against what you feel you should do and the guilt that may cause and sorting the emotion from what action is needed in the best interests of all is just about the hardest thing but can be the best thing in the end by giving you a way forward. I do hope you find the helpline useful. Take Care.

Hi. Thanks for your response.Since my last reply, things have changed very dramatically.On Monday 19 August, my sister called me wanting to discuss Mum’s situation.After a family discussion,we all agreed that Mum needs a LOT more care and that my sister and I should provide it. Mum was very amenable to a financial settlement for both of us;we have been paid to provide her care for a year.After this, we will have a re-assessment.I really appreciate the fact that my sister has now realised how hard it has been for me to be the primary carer.My sister is finding this transition a bit strange and traumatic;by agreeing to stay over for 3 ‘shifts’ a night,she has realised how commited she now is.She keeps asking whether she has done the right thing and saying that she only decided to accept the role of carer to help me.BUT as my partner and I have pointed out this decision was the only way to solve the issue of Mum’s care;everyone has to be involved.I have reassured her,of course.Naturally,she will experience feelings of frustration,impotence, loneliness,etc.But these feelings are natural in a carer’s role.At the end of the day,the most important person is Mum.I have assured Sarah, that, as a ‘newbie’ she will have these feelings;when I first started caring for Mum over two years ago when the dust had settled following Dad’s death to cancer,the funeral,and a three week visit from our American relatives,I felt exactly the same.But now I am a seasoned ‘professional’.I really hope that Sarah will adjust;it will just take time.I guess that some people are more amenable to change and commitment than others.
I have conducted quite a lot of research into the stages of PD in the last few days.Unfortunately,it really does look like Mum is presenting signs of Stage 4 PD,so the decision to provide the new regime of care is very necessary.I have been in touch with a PD local advisor who was VERY nice and helpful.I wish I could say the same for Mum’s GP who I contacted yesterday who was very rude and abrupt.I just cannot understand how some GPs think that they have the right to be so arrogant and condescending and treat patients and their relatives as idiots.He kept saying ‘do I understand?’,‘you will have to contact Adult Care Services’.FYI Doctor, I have a MSc in Gender Studies and a first class BSc degree in psychology! Although Mum’s ‘kindly’ GP was rude,etc,he informed me that he would write to Mum’s PD consultant to get an earlier appointment than November 2019 so we can all go to discuss Mum’s situation and prognosis.As I explained to Mum’s GP, my sister and I have been unable to attend Mum’s previous appointments as I have had to look after Mum’s dog at her home, and my sister has been at work so therefore unavailable.I don’t think that GPs seem to understand the vagaries of everyday life!I know that GPs can only do so much,or,in reality so LITTLE as some of them just cannot be bothered and consider patients and their relatives as a ‘nuisance’, but I think the REAL problem is that some GPs just do not LISTEN.He just did not want to hear or respond to my questions regarding our concerns and potential problems as carers.But we will prevail.
Well, I will sign off for now.Take Care.

My goodness me, you have been busy but crucially have found a way forward. I know you know it won’t suddenly make everything right or easy but clearly recent decisions have made a big difference to the way you feel about everything already. I am so pleased and hope the new routine is successful. I wish you all well
PS maybe you need to change your Mum’s GP!

Hi @suegreen1965,

I’m really sorry to hear that you’ve had such a disappointing experience with your mum’s GP. Have you tried getting in touch with one of our local advisers? Your Parkinson’s local adviser will have a wide range of knowledge and expertise about Parkinson’s, and know about services available in your area. In light of your own experience with your mum’s GP, a local adviser maybe able to help you with some of the concerns you have. You can search for your closest local advisers via our search tool here -

Our local advisers and helpline work together. Our local advisers are often out meeting people with Parkinson’s, so if your local adviser is not around when you call, please get in touch with our helpline on 0808 800 0303.

Best wishes,

Hi Reah. Thanks for your email.I have just picked it up after another marathon session round Mum’s! I stayed over for my ‘shift’ on Sunday night/Monday morning and went home for six hours before going round again to check on Mum (as my sister had gone out for the day).What was only meant to be a 2 hour visit turned into another overnight stay (as Mum was really quite wobbly) and the best part of today liaising with her GP for a home visit.We all felt that this was necessary as Mum couldn’t move, get out of bed and was really anxious.Well, the outcome of the visit was pretty much the same as the result I experienced last week.Same attitude from the GP and being left with the feeling that we are hopelessly alone with all this.I am sitting here now feeling VERY frustrated and angry.Yes, I know that GPs can only do so much and are giving Mum medical care in the form of medication,but what about the social REAL aspects of care and a healthcare professonal’s ‘duty of care’? Basically, we have 3 choices-carry on as we are with my sister and I providing the bulk of the care,get someone in to help out a bit,or put Mum in a care home.I think not for the latter option.
I have had a discussion with my partner and sister tonight and am going to contact some local care agencies tomorrow,along with the local East and North Herts Parkinson’s nurse.I will also call the Department of Elderly care regarding Mum’s new appointment;but I think I may wait a few days more on this as her GP has only just sent a letter to Mum’s consultant and I don’t want to appear pushy.BUT we DO need to get Mum assessed as soon as possible;I feel that it is just so unjust to treat a frail elderly lady in such a way,and any delay is causing her and us even more upset.Well, I will sign off for now. Thanks again for your support.Kindest regards, Sue.

Hi @suegreen1965,

You and your family have really been going through it and I truly empathise with you all. You seem to be taking all the appropriate actions to improve your mum’s living situation and overall well being. We recently featured a family in a similar situation to yourself on our online magazine which I think will be really useful for you to read as it contains some more info on the kind of support available to you and your family. You can find the it here -

Do take care.

Best wishes,

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