Don't like to think about future too much as don't know how we will cope....do you feel the same?!


#1

Is anyone else in the same position?  My mum has had Parkinson's for 14 years and is very frail.  She is 76. My dad is the main carer and is 78.

My mum has several complications with Parkinsons (Osteoporosis) and colostomy bag due to operation a few years ago (October 2014).

I have noticed her thought patterns are slowing a bit.  I have a young toddler and another baby on the way. Most of the time, I focus on the positives which are that my toddler keeps my mum going and brings her some joy.  I try to focus on the here and now.  I almost repress the future as I can't control it.

However, due to low blood pressure, my mum has been fainting a lot recently- sometimes several times a day and has a lot of falls which could potentially be very dangerous and really stress my dad out.

Would appreciate any practical advice or simply chatting with anyone who feels the same.

 


#2

Sounds like her blood pressure requires medical intervention. pd meds can cause low blood pressure may just need a bit more salt in diet to raise blood pressure but please make an appt to discuss this with a pd nurse or her pd specialist doctor the local G.P often lacks sufficient knowledge of pd.  take care x


#3

that made me feel so sad reading that as its so hard on family to see such suffering. My auntie starting having falls and that's how we found out she had the parkinson's. I know u will think the worst of me but in the end i had to put my auntie in a care home as like u i had two young children and she lived alone with no family of her own and i could'nt cope with the calls all through the day and night that she had fallen or wanted a cup of tea ? in the end is was the right thing to do, i know that now but at the time it broke my heart. They asked how i had coped for so long but they are family so u do your best.

I often think of the future but i cant imagine what comes next as its jud to sad 

Your dad sounds like an amazing man xx

If u ever need a chat x


#4

Thank you.  I will ask them about how much salt they are using and get them to go along to see the Parkinsons nurse.  Thank you very much.


#5

Thank you.  Really appreciate the response.  I often wonder how my brave mum copes with it all but I guess she is just like me and tries to repress it as much as possible because the fear of what could happen would drive you mad.


#6

Havanas ,  you should be able to discuss this with your mums pd nurse and get some support.  or anyone involved in prescribing her medication for parkinsons.  Family or partners are often involved in care issues and usually welcomed.  The salt would need discussing with medical staff it was just an example  of a possible remedy, it seems like her meds may need a review.  I can only imagine how hard this is for you as I am thankfully not in this position as not a carer but have pd myself.  This issue of falls and potential risk of harm to your mum does need reporting to her medical team they will then be able to share the responsibility and offer support.  adult services may be able to assist consider giving them a call they may be able to offer a care package?  best of luck 


#7

                I honestly try  hard  not  to  think  about  my  future ,I take each day as is, as there is no cure for Blackheart  and is not  likely  to  be  in  my  time left , im 66  its my only  way  of  not   jumping off the  tyne  bridge when  depression  decides  it  want  a  piece  of  me, life  can  be  a  pig  but we  either crumble and wilt or  fight  back I  have  been  doing  that for  17  yrs and  I  draw  weary but if  i  give  in   not  only  I  suffer  but my family  also and  I will not  allow  that I  have been  visited  many  times  in  my  home  by  the community  health lady shes   brilliant,  I  made  her  laugh telling  her I wouldnt jump into  the  tyne  as  I cant   swim  ,,,preferring the tarmac  road  underneath instead though I  dont think like that  now oh  no  im  different  parky  has  made  me tougher more  resilent,  I    have  a  very  powerful imune  sysytem and often  wonder  if  it  helps  in  the  war  with  parky.

                                                                FED


#8

Thank you.  Yes- my parents have been to see the nurse and they brought up the subject of brain surgery.  A whole new topic to consider but sounds scary.  Thanks for the insight and advice.


#9

Thanks.  17 years with Parkinsons is a long time.  My mum has had it for 14 years.  I agree- I think sometimes humour is a way to deal with the difficult stuff.  I hope you are doing ok, all things considered.


#10

yes

 

 

                       Yes it is my dad  used  to  say  that  when he  took  me  fishng it  took  me  hours  to  swim  back  to  the  shore  I  dont  know  why   he   did that

  bfn  fed