Hi every carer,
Most of the time, I am solid as a rock, strong as a lion: I could almost feel proud of myself if I "listened to myself" but, oh dear! oh dear! some other awful times everything is so bleak, nothing seems to matter any more: the weather, the news,.... etc... The scientists progress are so very slow, where is the hope I had "last week"? it disappeared, the wave of despair replaced it!
I have to work hard to push away this destructive wave ; only "last week", I was full of hope and optimism!
Does anybody out there feels like me or am I the only weird person?
I need hope to survive!
No way Natasha are you weird, you are a human being. I don't have PD myself but I do live with a rare liver disease and I also have my up and down days. It is good you have joined this forum, you will meet many great people who are also on the Parkinson journey. I am sure some will pop in here to tell you of their experiences and offer support.
Being a carer of someone you love can be emotionally, mentally and bodily draining.
Please keep coming back to the forum and posting your feeling, nice to have you on board.
Love and a big hug
Thank you so very much, Radar47!
Your kind words reassured me a lot and I feel a bit better now.
Thank God for the Forum!
Hi Natasha, No you're not weird. Its very difficult caring for someone you love with a degenerative illness that isnt going to get any better. I am sure you are doing a great joh, maybe you need to cut yourself some slack and pat yourself on the back, just think what a mess you're person would be in if it wasnt for you. And then try and take some timeout for yourself and relax and understand that you are doing a very very meaningful thing, careing for another human being is one of the most worthwhile things one can do, I think so anyway. It is a very compassionate , humane and dignified thing to do. What goes around comes around you will get peace of mind from this activity in the long run, I think so anyway. Sunray
You are not weird - its entirely normal to feel down sometimes. It is hard to deal with something like Parkinson's. I'm lucky - PD has progressed slowly for me since dx about 6 years ago. I'm not very badly affected but I have struggled a bit from time to time and I have watched my wife struggle too (at different times usually).
It's easy to forget that close family members are affected by Parkinson's too. I'm proud of my wife and the support she gives me.
Don't 'almost' feel proud - be proud. Be proud of being strong, and being smart enough to share your thoughts here.
You are certainly normal, we carers are too hard on ourselves and never feel we do enough for our loved ones.
I was cared for when I first injured my back and was house bound for about 4 year's very many years ago and then when my husband was diagnosed with PD and it was my turn to do the best for him, we are a team.
I am one of those people who always give 110% I don't know any other way but I have had very many ups and downs over the last year's and now my husband is in a nursing home its another adjustment which is difficult to come to terms with.
I realise I have to make a life for myself as well as supporting my husband and believe me there is always something to sort out with the staff or his personal stuff.
I realise everyone's situation is different but if you can join a carer's group or local pd branch that would be good or if you feel you are not ready for these find a good therapist and treat yourself to a massage or reflexology and set that time aside as often as you can.
This might cause a bit of a stir but over my years involved with many people with pd there is quite a difference between men and women with regard to spending time on your own. The women carer's find that the men in there lives like them to be around a lot whilst the women with pd seem more able to spend time on their own and are happy for their husbands/partners to go for a pint or whatever they like to do.
I have run many days with PWP and carer's and it is a very good way of getting together and sharing experiences and tips on coping with pd. We held them 4 times a year and the programme consisted of starting with a tea or coffee followed sometimes by a talk on benefits or Counselling, O/T, equipment etc. with therapists busy all day with a break for lunch where people could get to know each other, of course this could only work if there are enough of you living near to each other but it does mean both PWP and carer can enjoy the social occasion.
Before we were involved with the branch we had casual get togethers with 4 other couples in our homes or pub lunches, sharing is good.