New and scared of the next PD stage


#1

First I must clarify that I do not have PD, and my father is my mother's full time carer, with, through his own choice, no help from outside care companies. My beautiful, sweet and lovely mother was diagnosed in December 1999, which was the year she turned 65, and had just retired from her job. Her diagnosis was a massive shock to all of the family, but it was early stage PD, so life carried on as normal, with mum actively enjoying her retirement and her grandchildren. Well here we are 16 years later, having being told by mum's neurologist on Monday 22nd February, that my beautiful, sweet and lovely mother is in the advanced stages of this debilitating disease, and that he (the Neuro) thinks that she would be better cared for by a Physician of Elderly Care who has a specialist interest in PD. So basically no more 6 monthly visits to the Neuro, and no more changes to her medication, not that she had many in 16 years. We knew that during the last couple of months, mum was having more problems with speech, walking, bowel function, but I naively thought they'd just increase the medication. We were told that no increase in her medication would make a difference now.  So to any of you who have been through this with your loved ones ... what does it all mean for my mum? Have they given up on her? Is this it? Is there nothing else they can do for my 80 year old mum? What should we expect in the next few months/years? If I could turn the clock back for her, for just one day, I would do it in a heartbeat! Any advice from all of you would be greatly appreciated. Thank you for reading this.


#2
i am so very sorry to hear this sweetheart. I will try to answer your questions as truthfully as i can i am very straight talking i know of no other way. The meds can only go up to a certian leval which is based on your mums weight and as your mum is 16 years dx she is most proabely up to her max leval. Therefor any further increasses would possibly be counter productive. Also she is 80 and i know this sounds like ageist but the older we get the less some hospitals will do for us. This is my opinion i think it is appuling but we cannot change some hospitals policy. What this means for your mum you say she is in the advance stages PD has 5 stages starting at stage 1 this is where some of us start to get symptoms without realising the possibility of PD. Stage 2 general dx established symptoms then it can also go up by 1/2 a point this is where i am stage 2.5 or possibilty stage 3, then we have stage 4 and 5 a whole different ball game, symptoms become unmanageable and we then find out how bad our PD has become. On this website on the home page there is a tab regarding advance PD. I would suggest you read it because you will be able to prepare yourself better as things get worse. PD does not kill us because it is Progressive it can only get worse how slow or quick no one can say. My advice to you is really think about how much you and your family can take seeing someone you love suffer is horrible, i know because my husband struggles with accepting my dx more than me and at tthe moment i am ok because i fight mine everyday i am only 50 and three yrs dx i call mine the b×××× because that is how she makes me feel. As i am much younger that your dear mum i have the strength and stubborn attitude to enable me to fight. Your mum i am guessing is now becoming frail so she needs looking after by her loved ones and professionals that know what to do. This may be a rough ride for all of you but if we love someone like you do your dear mum you will manage. My wish for you if i had one is for peace and tranquility to keep you all strong and united. I hope my words have not caused you pain i speak from the heart i lost my mum at age 49 and i still miss her everyday but i am glad she suffered no longer and she does not have to see me with this disease some days good some bad but i bite back really hard. Good luck and take care you are in my thoughts if you need any further advice orcinfo do not hesitant to ask . Respectfully BB.

#3

hello serengeti...im new here ,but im sure someone here will be able to help ..your mother must be very proud of you ..keep your chin up ... good luck ...smudger.s


#4

Hello Serengeti

I am at later stages of PD. I will be 64 next month and was diagnosed 16 years ago.  It's so hard but I keep on fighting my way through and when I feel a bit better I get up and do something practical, such as cooking a meal or tidying up a little.  Then I feel exhausted and off so I have to sit down for a few hours.  

The situation only gets worse I fear and I think it is harder for my husband to cope with than anyone else.  It would be handy to know how long things will go on for but the professionals all tell us they can't say because every one is different.

I do wish you and your family well and hope that you will have the strength to see this through.

with very best wishes 

Casie


#5

Hi BB,

I's been 6 months, so please forgive me for not writing back straight away to you! Thank you for sharing your story with me, it meant a lot. I feel that my mum has no fight in her at all, and although she understands that she has Parkinson's, she often asks me when she's going to get better. I try explaining that unfortunately there's no cure and we just have to keep on battling with her old Parkinson's brain and keep active and reinforcing the things she is able to still do, like walking with a stick and someone with her, but the guilt I feel is enormous that I can't do more. My dad looks exhausted and I'd love him to have a holiday without my mum. Finding respite care that's not too expensive is very difficult and Sunrise Living will only do a 2 week minimum respite care package. We haven't looked into the full cost of that yet, but I imagine it will be quite a lot of money. Mum just turned 81 the other day and I feel blessed to still have her in our lives:) Wishing you well BB!


#6

Thank you smudger.s - I hope this finds you well! 


#7

Hi Casie, 

I'm sorry for taking so long to acknowledge your post! It seems to me that everyone's 'late stage Parkinson's' means something different for them. I do believe that it probably depends on how active you were pre diagnosis, as I'm sure the more active you were the more you are able to do in this later stage. My mum was always 'busy' - she was a very house proud person, so cleaned the house every day. She also worked part time every day and she also cared for her elderly mother most days. I wonder if there is a difference to this kind of being active and the being active that involves going to the gym, doing yoga, plilates, Thai chi, swimming, or sport in general? I watched a video of an Israeli man who seems to keep his Parkinson's under 'control' by dancing. I'd love to know your thoughts about it. Take care of yourself and I wish you all the best!


#8
Hi Serengeti, No apology required you have the most difficult time of your life ahead of you. May I make a suggestion to you that I find helps when I am stressed. I used a tenique I call visualisation thearpy the power of the mind is a wonderful thing. Closed you eyes and take your self to somewhere you are happy for me this is a white sandy beach say maybe in the Indian ocean. You are lying in the sun which is warming your heart and soul. The crystal blue waters are tickling at your toes and the soft warm breeze is swaying the palm trees gentely. I look up and see a black cloud approaching me and as I stand up it is right over me. This is not allowed so I jump as high as I can punching a whole through so I can get the sun back through to me. I claw my way through and start to break the barrier the cloud has made and when I have jumped back down Johnny Depp is waiting their for me ( I know it should be Colin but hey hoe a girl can dream) lol. All joking aside on a bad day this helps me. I know your dear mum will not be able to do this but you can therefore look after your mental health to help you help your mum. I hope this helps if not you know where to find me and I will happily give you my mobile number if you want to talk. Don't forget my straight talking way though. Much love to you all I think of you often. Respectfully BB Karen. Xx

#9

Hi

Have a search of 'free respite care' . Not sure if it will help or not .

I know  some organisations for MS for example provide it, maybe through grants or  charity.

Regards

David


#10

It’s been a long time since I wrote last. Sadly my mum had 2 strokes in September 2016 and is now in a nursing home, although as I write she’s been in hospital for the last 4 weeks with Pneumonia caused by aspiration. She looks like she’s lost all fight in her. She can’t move, has to be PEG fed, suctioned, doubly incontinent, and doesn’t seem to have much to live for. So terribly sad. When she’s in the nursing home, my dad sees her every day and only leaves when she’s settled for the night. The only glimmer of her is the occasional squeeze of my hand or a raised eyebrow. Please what next??? I HATE this disease!


#11

Well, Serengeti, what happens next is out if anybody’s hands. Your mother has no quality of life - it’s the strokes, not the PD that has done that. She appears to have decided to pass on, and you have to respect that decision. It is sad, but as long as family are around, she will feel safe. 

Best wishes.

Mike


#12

I agree with Island Mike I am afraid once she passed there will be no more pain or distress and in fact there will be no more PD.

Passing for your mum will in fact be freedom from all the crap PD can throw at you so my message to you is if your mum has decided to go and let her go I know it's hard but it can only give her freedom sad I know and I'm sorry.

Sorry I can't give you more hope take care lots of love BB XX


#13

Devastated that my brave, beautiful mum sadly lost her battle with Parkinson’s and Strokes on the 9th January 2018. She passed away from pneumonia caused by aspiration. Thank you all for the support and words of wisdom since I started this post. If I can help and support any of you in the same way, don’t hesitate to ask. My mum is now at peace and forever in our hearts. Xx


#14

Hi Serengeti,

We are truly sorry to hear about the passing of your mother and understand how devastating this must be for you and your family. We also appreciate that grief effects everyone differently and you may want to talk to a trusted friend or family member, or have contact with a spiritual or faith leader.

However, you may also like to consider contacting our helpline on 0808 800 0303 as they’ll be able to put you in touch with a local organisation that can offer you support. Alternatively, you can visit our website for more information on the help and support that is available to you and your family, here.

Take care and we wish you and your family all the very best at this difficult time.

Kindest regards,
Reah


#15

Hi BB, I was just wondering how you are? I haven’t been on here since I wrote about losing my mum, but tonight I miss her so much and thought I’d re-read everyone’s kind replies to me. I hope you’re okay and have been enjoying the beautiful summer we’ve had this year! I remember the summer of 1976 as I was about 13 - this summer is certainly giving that one a run for its money!! Take care of yourself!


#16

I am doing good sweetheart hope you are too xx


#17

I’m happy to hear you’re okay:) I moved house in July and I’m now half an hour away from my dad’s house. I stayed over at his on Monday and this morning we were talking about my mum. It always makes me sad. His grief is still raw but he does a good job at hiding it from us. It’s only when we’re alone that he tells me how much he misses her. At 88 it sucks not having your wife with you anymore:( Please take care of yourself and keep in touch! Xx


#18

This is good to hear give your dad a hug from me and you too my best to both of you let me know how you go on. Xx


#19

Hi there,
I feel v moved by all that you have shared about your dear mum and feel so much for you given the loss of her in January. I don’t think that anything prepares us for the loss of a parent however old they are, however old we are, in that respect we remain children at heart. It is so very hard to bear, despite knowing that “that’s life”.
I hesitate to say what I have been thinking because I would hate to upset or offend or anger anyone, but …I am thinking more and more these days about what it means to have a good death. This was brought home to me by a friend’s appalling experience of her elderly father’s death in hospital. Completely pointless but strenuous and distressing efforts were made to keep him alive at the end, when what should have happened was for him to die in peace. We risk denying the fact of death by our efforts to keep alive and so miss the chance for a “good death”. Lionel shriver explores this issue in her book “So much for that “
Would we not feel marginally better after the inevitable has happened if we had acknowledged it rather than fighting tooth and nail against it ( unless fighting stands a good chance of succeeding obviously…and maybe no one wants to admit that it might not) and used the time left ( always an unknown quantity of course) to do what we can to make our loved one feel safe, loved and accompanied on this final journey and to be left with as positive memories of those last days as is possible.
I know that some people would rather not know or be told and that is of course their perogative…we must all do what feel right for us, esp at such a unique time, . I know that after my mother died there were a number of I wish that… } which could have been avoided. With my dad it was different. His philosophy was “you could get run over by a bus tomorrow, …so live today to the full today”And he did. And hence I married a man much older than me because we were in love and who knew what the future held (two sons and Parkinson’s, not an RTA so far, as it happened but we were not to know that at the time) .
Loss is such a huge thing in our lives, and all the worse if we have loved greatly, but better to have loved and lost than not to have loved at all. So true but v hard to live through I have no idea who said that.
Thank you for sharing so honestly your journey.
Warmest regards,
Pippa