Still stunned at the kindness and support of "strangers"....

[Ceebs]

I've been re-reading my original post and the replies that so many amazing people took the time to write and send. They move me to tears every time I read them but my heart has been warmed and they have made it so much easier to look for the beautiful things in life. I do not think I could be as positive as I am if it had not been for the support of so many amazing people, especially "thatgirlagain" and "chomps44"

Today has bot been a good day for my husband. He has been confused and has been hallucinating. He has been unable to complete the simplest of tasks, which is unusual for him, but I have been trying not to focus on him but on getting him through and finding things to make me smile and feel good.

I have had a dragonfly visiting, not common in my tiny North London terraced Victorian house garden. I have been taking photographs in the garden but none, I feel is, special. I have been enjoying watching and hearing the bees feasting on the Borage flowers. For those who don't know, Borage is a plant whose flowers are traditionally used in Pimm's, but should be planted with caution as they self germinate and take over your flowerbeds - "Triffid" is definitely a more pertinent name for it.

Earlier I saw two gulls trying to chase off a bird of prey, probably a sparrowhawk but too high for me to identify definitely without binoculars.

.

I have listened to the inimitable sounds of my neighbour's grandchildren happily playing, which makes me smile every time.

There have been a few swallows flying, although I suspect they're getting ready to head south as the numbers have dropped noticeably.

I have watched bats flying this evening, as the stars became more visible in the clear night sky. I like bats because they eat the mosquitoes that home in on me, so I encourage them as much as possible.

This afternoon my son teased me for wearing my "leprechaun" trousers - bright green that end just below the knee! As I have a "Heinz 57" European mix heritage and my kids are predominantly Irish, the humour is never far away. By the way, if any of you get to visit Dublin's fair city, head for the Leprechaun Museum. I do recommend visiting the Jamieson's and/or Guinness experiences first to increase your enjoyment . . . .

Sadly, my husband is not able to experience or understand the enjoyment that we get from the experiences described above plus so many others, and that simply breaks my heart.

If I had one wish, it would be for him to be able to really feel, and be able to show his feelings and really live!

Although we, his children and wife, struggle because of his lack of feeling, emotion and understanding, he is the one who is losing the most. Yesterday he managed to crack a joke, which I delighted in sharing with our kids and our friends. Today, he cannot remember what he said and, even when he had been reminded, he had no recollection. So very, very sad and how unlucky is he? Parkinson's and a brain tumour! - but we don't know which is causing the emotional block!

Tomorrow I hope to get the paints out and try to produce something that doesn't look unintentionally abstract. Knowing me, more paint will be on my clothing than the paper, but so what!

I'm still trying to find my flute - it has been tidied away using the same logic that led to our bedroom carpet being thrown out, new carpet underlay being laid, the bed being dismantled and the mattress laid on the floor on the underlay! That will teach me to go away for a few days! Until I can use my playing music as a release, I will take photographs, draw, paint and listen to those who compose and play music that moves me, as well as keep smiling whenever possible and apt.

Also I would like to apologise for strange my spelling to those on the west side of the pond; I'm English and a teacher of English as a Foreign Language. Even my text messages are grammatically correct, much to my kids' amusement - so apologies for any typos here.

I must bring this to a close but I do hope everyone of you who reads this knows how many people there are who want you to feel better, be you a sufferer or a carer. I have experienced how true this is and hope that I, too, can make others feel less alone. xXx

[Hikoi]

What a beautiful post and i havent been on here much in a while so i had to read the earlier thread. I was struck by the eloquence and compassion of the writers. What an amazing bunch of people indeed. I sit in the dark tremoring away, with i pad on my knee in my West London flat, a balmy night. It is 2am. Husband sleeps beside me and think i will say what is so often said to me by my family - now go to bed! Sweet dreams

PS. And thanks....

[jillannf6]

hi

yes a wonderful post

lol JIll

[Carrigan]

Yes wonderful, you have a great outlook on life and its good to share lest we forget the simple but beutiful things in life we can be thankful for thankyou so much and take care x

[Hidden]

Try music, play him his fav tunes from way back when xx

[jillannf6 in reply to Hidden]

A GOOD idea to us e music

the brain si a stgrange thing but music iwll always be there to eb remembered]

lol Jill

[Yogibear]

Lovely. YOPD living in Jersey, C.I. I like to open my windows and listen to the seagulls.

[PatV]

I like H-H's suggestion. I can sympathize. I appreciate your writing as well. I'm the one with PD; my daughter has a TBI resulting from brain surgery removing a tumor in her brain cell. She's another person now. It has broken my heart. I would weep if I could! She does not want me to call her. I never hear from her. All I can do is rely on my faith (Buddhism) that my prayer will reach her. And enjoy what there is to enjoy each moment. Please keep us all posted.

[GrammyC]

Your post is written so beautifully. I wish you happy times and the ability to enjoy the simple things in life about which you have written.

[debbie66]

Thank you for reminding me that there are things around us to enjoy.Sometimes I get so caught up in the caring ,I forget the simple pleasures ,like listening to the rain ,watching the birds that come into the garden and my own teenage children,fighting with each other,laughing together and being there for each other.It's the simple things we forget to see each day, that become a wonder when we do notice them.

After reading your beautiful words,I stood at the window and listened to and watched the rain.Thank you for reminding me it brings a smile to my face and I can then carry on.

[AlanEG]

I know where you are and your husband, very very sad, I have 2 friends in the same situation not that that helps you. Keep up yuor spirits in any way you can.

I get sad when my grandson age 7 calls me grumpy, as more often than not I am not able to play with him as the other adults in his life. ;and a couple of times when I cant get up off the floor, he has asked 'grandad are you old or are you ill'

I have not got round to telling him about PD, but still love him to bits

all the very best

[StephCabo]

Enjoy reading your posts.. My heart goes out to you and my prayers are with you.. and your husband. We never know what road we will travel do we.. I remember when I was 18 my Dad had a brane tumor and it was so hard to see him change, loose his smile, and his joy. he had surgery an yes it helped but then he died but in the end for a while we got him back... It was a special gift... Then my shortly after he died my Mom was DX with Parkinson's and I watched her accept it with grace and constant smile and good atitude.. It kept her going... Now I have PD and I only hope and pray that I can face the challenges as she did. With the support and caring of the type of people in this group and other support groups I know I can.. People are amazing... You are one of those amazing people. I truly hope that your husband somehow gets the chance to somehow feel the love you have for him... Don't give up hope that he will... His old self is in there somewhere... Hugs and Aloha

[Ceebs in reply to StephCabo]

Steph, you are a very special and beautiful lady!

Thank you for taking time to reply to my post. I want to write more but I am so humbled and inspired by your post that the words I am trying to write are failing me miserably.

I do tend to do better in the evenings so expect to hear more from me. Stay strong, keep smiling and spreading your warmth - you are better than any doctor x

[StephCabo in reply to Ceebs]

Thank you Ceebs... I think I am the one who is humbled.. I love the way you write. Evenings are great aren't they (barring any interruptions).

For me I find that is almost easier being the one with Parkinson's than the caregiver. I only say this because I have been on both sides of the fence so to speak... When you have PD, you have no choice, it's yours it is a part of you. It becomes you, it can destroy you both physically and mentally or it can bless you and add quality to your life you are able to allow it too. Caregiving, on the other hand takes so much more, because it is out of love, patience, tolerance, choice, necessity and sometime guilt. I know this I have felt all of these things, and I admire all of you caregivers out there. I am grateful my husband has stuck it out thus far with me... I am a also fearfull about the future with Parkinsons because I cared for my Mom and I know his future caring for me... But he stuck with me me other things & months of hospitals and I know there were times he's hated coming home to someone sick but still he did...Because of Love .Sometimes I hated taking care of my Dad dying of cancer when all my friends were out having fun... But thats what love is....and it is what it is... I just try to appreciate every day.

Ceebs I know you must get tired because caregiving is hard, and even though your husband doesn't show it... he still needs you and you are his Hero every day...

[thatgirlagain]

Ceebs,

I am so humbled to be mentioned in such a beautiful post. Your strength does shine through and your outlook encourages and uplifts others including myself.

We each have our own paths to find, and hopefully, your husband will find his. You have already taken on so much pain of his, but avoid allowing that pain to be your own.

Take care and enjoy another day of beauty,

april