Back to top

New and scared of the next PD stage

12 posts / 0 new
Last post
Serengeti
New and scared of the next PD stage

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.

bettyblue

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.

smudger.s

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

Casie

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

Serengeti

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!

Serengeti

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

Serengeti

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!

bettyblue

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

DavidInFife

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

Serengeti

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!

Island Mike

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

Pages