Friday, August 31, 2018

Behind the Scenes

Dearest Reader,
It's true that I have been blogging less often these days and I feel the need to explain.

As with so much of social media, we try to promote only the positive aspects of our lives, because really who wants to whine and complain online?

But alas, things have slowly declined in our house and I find myself cocooning in my room, avoiding everything else, as a form of self preservation.
As you may know, my darling husband Dave has been enduring Parkinson's disease for 25+ years, and it has progressed rapidly of late. He has been affected more mentally, rather than physically, to the point where he is paranoid, psychotic, and delusional. This is not uncommon with advanced PD, which is not much consolation.
He is often frantic with these imagined images and angry that no one else agrees with him that there are bad guys after him. He calls the police often to rid our home of the bad guys, mostly during the middle of the night.

There are lots of drugs involved in our life, some work and some make it worse. It's a daily challenge. I am lucky to have a great bunch of friends and my darling sister to unload all this stuff on. But I never felt I should blog about it. Until now.
Back in 2004 when I began blogging, I talked about all the minutiae in my days and it was fun and sometimes humorous. I'd love to get back to that tone, here.
Perhaps a solution is right around the corner and we must exercise patience.

So... that's the short version of the story, leaving out the horrid details.
I work on keeping Dave calm and well medicated, and staying peaceful in between bouts of delusional behaviour.
So that's where I am these days, in my room, knitting and keeping watch .

Thanks for you constancy over all these years.

62 comments:

  1. Mel,
    Your blog today is a blessing. My husband ( 6'4", 200+ lbs) suffers the same disease almost 20 yrs. now and similar symptoms to Dave. You make me feel better to know there is someone out there who truly understands. I'm afraid I, mostly my body, have given up and have just agreed to put him in long term care. Quilting has been my sanity and your blog a bright spot in my life.

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    1. I didn't even think to mention moving his body when he in a very stiff full body cramp. Adjusting his head is like pushing a car uphill. My back suffers after one of those events.

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  2. Melody--

    I'm so sorry to hear about your husband's declining condition. May God give you strength to make the tough decisions in your life.

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  3. We all have family issues we feel we must hide. I had an alcoholic husband who passed and have a schizophrenic brother I've had to block from my life. You can't do it all on your own. You have to think about your own health and make a hard choice to protect YOU. Keeping you in my thoughts....

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  4. You have shared many, many beautiful adventures that you and Dave have had and it is those that will give you strength when he needs you the most. Keep strong, creative, and loving. And keep sharing.

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  5. Oh, Melody, what a hard thing, on so many levels.

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  6. So sorry for your daily challenges. Be sure to take care of yourself also. Eat healthy, rest and accept help when needed. It must be a very difficult time for you, and I send my caring thoughts and prayers to you.

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  7. I'm so sorry to read that this is the season of your life right now. And of your husband's. In this hard time, I hope that blessings come to you from unexpected places.

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  8. Being a caregiver for someone with a degenerative disease can wipe you out. My uncle recently passed having lived for 3 years with PSP. I have long enjoyed your blog for the variety of quilting, sewing, knitting and gardening. Reading about the trials and errors of your garden and yard encouraged me that I could do it with our own blank slate of a yard. This year I have my very first garden and have been enjoying the tomatoes of my labor. I have found Instagram a great way to document my trials of my gardening along with quilting, sewing, knitting and a bit of my kids. https://www.instagram.com/amy_munson/

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  9. I'm so sorry to hear about your challenges. I am glad you have people to support you; remember that it is ok to ask for help. *hugs*

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  10. I am sorry for the difficult times for you both. I'm also glad you have support and please do take care of yourself. I will be thinking about both of you.

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  11. thank you for your honesty and for sharing so much color and creativity with us all these years.
    My prayers and be well thoughts are with you and Dave. I am glad you have people to support you.

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  12. Thank you for sharing and know that the prayers of many are with you. Take support steps sooner than later because if something happens to you, then what? Be kind to yourself in this very difficult time.

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  13. I wondered why you did not have daily posts that I so enjoyed reading, Melody!! My heart and prayers are for you and your husband at this very difficult time. Thank you for sharing this information. I am so glad you have support as the caregiver has a difficult time. You must deal with your husband when your heart is breaking to see what a medical condition can do to loved one. Your creativity and colour will always be with you and I will wait to see it again.

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  14. My heart goes out to you and Dave. My husband has Alzheimer's and I am going through similar days. It is so hard and so sad. Your blog has been a help to me, and I have enjoyed your creativity for so long! (And your wonderful sense of humor!) The few minutes I can sew, paint on silk or quilt are my moments of respite and sanity. I also see we share a joy of reading, and that is a lifesaver. Hugs and good wishes to you both. Take care of yourself.

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  15. Oh, Melody, words fail me so I resort to sending love and virtual hugs to both you and Dave... Just know you are not alone, and let those who love you two walk this part of the journey with you. What is the new normal today may be yet a different normal in the days to come. We love you in the joys and the sorrows, through it all. Thank you for trusting us enough to share it with us.
    Joan in Missouri

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  16. Oh Melody, I am so sorry for the both of you. PD is a cruel disease, which my dad had for over 20 years. He too had delusions, but did find relief when a different doctor tried different meds, and it was such a blessing. We found that a gerontologist was much more informed than the GP they used before. Good luck to you both on this difficult journey.

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  17. So sorry - life is a series of troubles and challenges and joys and jubilation. It can be very hard.
    Just know that so many people care for both of you.

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  18. I feared the decline in postings meant a decline in good news. I am sorry for your struggles, and the loss of the Dave you knew. Thank you for letting us know what is going on, and without complaining. Best wishes.

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  19. I am so sorry to read this, Melody. Thank you for sharing it — that was honest and brave. I hope all the support and kind words bring you comfort and strength.

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  20. I'm sorry things are rough for you, Melody (and Dave). My thoughts are with you both.

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  21. Sorry to hear it is so hard, but pleased you shared. If people understand then they can help. I'm glad you have your sister for support.
    Is there a PD support group for family? I hope so.

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  22. I have been reading your blog for years and years. I have always appreciated that you write about what is going on. I am so sorry to hear of these dark times. Thank you for sharing with us and know that we pray for you and for Dave.

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  23. I am so sorry for your hardship and just want to say thank you for your honesty. I've been learning a lot from your blog. Thank you for sharing your vision here. Your writing, projects and photographs are inspiring.

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  24. Thank you for sharing your journey with the rest of us, thank you for your courage too to be honest with what is happening to you. Much aloha your way!

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  25. Blessings to you and your DH. I have loved following your Decorating, knitting, quilting, et all. Hang tough!

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  26. I love your blog and apologise for never commenting - I am thinking of you and hoping it gets better

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  27. So sorry to hear of this, Melody. I can only imagine the heartache and worry you're experiencing, and Dave, also. Sending warmest supportive thoughts your way.

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  28. I am so sorry to read of Dave’s decline. Hang in there. I have been reading your blog since you were in Illinois and it’s been at the top of my list since then. Life has ups and downs and this is a particularly bad down time for you. My heart aches for you.

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  29. Thank you fir sharing about your husband's disease. Perhaps it will help in some small way for you to know that sharing with us may lighten your load. I will add both of you to my orayers.

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  30. My thoughts and prayers to both you and Dave, hopefully they will find the correct combination of meds to help with his symptoms. It was so honest of you to share this difficult time and we are here to listen and send virtual hugs.

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  31. Dear Mel I too have followed your blog since Il days and thoroughly enjoyed your candor. I know how devastating it is to deal with a loved one whose mental facilities are declining as my daughter has dealt with the same with her dh. We loyal followers are keeping you in our prayers and know that you will get through this difficult time.

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  32. Oh Melody - my heart is with you. Thank you for trusting us with this news and trusting that we would understand. My partner of 42 years suffered with Alzheimer's and I was the sole caregiver for 8 years before it was too much to shoulder by myself. As difficult as it was to admit I just couldn't cope any longer, placement in a local memory care unit turned out to be a blessing for both of us. I pray that you will take care of yourself. A local caregiver's support group could be helpful and provide some guidance and resources for you both.

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  33. I have wondered how Dave has been doing. As you know, coming from a family filled with Huntington's, I understand the intricacies and sadness of the Neurological diseases and the toll it takes on families. Even though I have not left many comments, you and Dave have been in my thoughts. It is so hard to manage the meds because the disease is just a little different in each person. I hope you both can find a solution that brings a level of peace.

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  34. Melody- your readers aren't here just for the "good times' but also for the hard times. My co-workers and I just went through months of this same thing with a co-worker. She finally had to stop working to be home 24/7. When someone gave her a break she came to work (a greenhouse) and we had her water or do normal things and most of all we held her as she cried. We can't hold you but we sure can "listen" and offer our friendship to you.

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  35. I'm thinking of you and appreciate your bravery in both your care taking and your blogging. When I was ill about ten years ago, your blog was a bright spot on my difficult days....I am glad that you have a wonderful sister and good friends nearby to support you. I will be supporting you from afar!

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  36. Sending you a big Warm Hug Melody, my Art Sister. Keep the faith baby.
    Your friend in Western Oregon
    LuAnn Kessi
    luannkessi.blogspot.com

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  37. I'm so sorry to hear about all of this. Know that besides having friends and family near, your readers are here for you, to listen to anything you want to share. I have enjoyed your blog for years and as someone already said, we are here for good times and bad. I wish you well, and you and Dave will be in my prayers.

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  38. Oh dear, Melody. This disease is hideous and overwhelming. May the good bits of each day help give you the stamina to handle the bad times. And time you want to bitch and whine and share your pain on your blog, you go right ahead. We are all there for you. I don't have a clue what we, your readers, can do to diminish your anguish, but know we care, and are holding you both in our hearts.

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  39. Melody, I replied yesterday, but for some reason it disappeared into the ether. I'm so sad to hear this. I had wondered why Dave wasn't doing the heavy gardening work. Now I understand. Your garden must be a respite for you during this difficult time. We once bought a house with the most amazing garden - 55 gorgeous roses and wonderful beds of alstroemeria. She told us it was her 'sanity release' as she nursed a seriously mentally unwell husband. I thought of them when I read your post. Praying for strength and courage for you both.

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  40. Dear Melody, i wish you much energy and courage in this difficult situation.

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  41. My thoughts are with you and your family daily. Hugs to all

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  42. Sorry to hear Dave is in declining health. Take care of yourself too as you as you deal with these daily challenges.

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  43. Meloday, I am so sorry to hear about Dave's decline. I always have enjoyed ready about your adventures, quilting, dogs and the homes that you have had. My thoughts and prayers are with both of you.

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  44. Dear Melody, so sorry to hear about Dave's health. reading your blog for so many years, i feel as if you are a dear friend, on the other side of the world. praying for you and yours. next week is the Jewish New Year, we have a special prayer for the sick and i'll pray for him by name. and we love you, when you're happy in your garden, knitting, or quilting and we love you just the same when you're sad and have low energies. look at all those comments, and there are hundred more who think of you , even if they don't write. take care.

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  45. I'm so glad to know and finally understand...vague references to Dave's condition made me wonder and be concerned but I didn't know about what. Thanks for telling us! I'm so sorry for these troubles. My sister-in-law in Erie is a few years into the process and it is a difficult and stressful disease. Blessings on you. I don't know how you have done ALL you have done these past few years....

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  46. Mel, so sad to hear this. I think I have followed you for at least 9 years and have so enjoyed being part of your family. My thoughts and prayers are with you.

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  47. Dearest Mel, I've read every one of these comments and you can tell there are so many who understand, have been or are where you are and want nothing more than to be there for you, if you need them. Sometimes the hardest part of coping is getting over the shame we feel, knowing there's no reason for shame and yet, it's there and then not wanting to burden others with our pain and suffering. I think these comments my help in letting you know there's no burdening here..we're women supporting one of our own, a beautiful one who has given us so many lovely thoughts, ideas and roads to self-expression. Trust all of us. We love you and we understand...and send you Peace and Love, as you stand watch over your beloved husband...and don't forget to laugh at how horrible it is! Laughing is the key to sanity. Thank you for all the years of wonder and encouragement...we'll give it back to you 10 fold.

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  48. Melody, thank you for sharing. Many prayers are being said for both you and Dave. You are an inspiration to all of us who have read your blog for so long. I started reading right before you moved to Tennessee.

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  49. Hi Mel, Just wanted to let you know that Bill and I are thinking of you and we're so sorry to hear what you and Dave are going through. My Dad went through it with very similar symptoms, including the delusions, and we know how tough it can be. Please take care of yourself. Sending you love and hugs.....

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  50. Dear Melody!
    I know you're feelings. My grandfather hat parcinson, too. But for our luck, he kept a long time very clear in mind and "only" his body went down. That WA so horrible for him. Beside this, my grandma got paranoid of everyone and everything, also against us, the children and grandchildren, who cared for them. The children, who didn't care, weren't bad in her mind, because the wouldn't come and Steele every silly thing. When my grandpa passed away, she could sleep again and from one day to the other, she was so kind again it was hard to believe, that stress and no sleeping were the only problems.
    I hope, you will have some gently days with your hubby and that you don't forget yourself about all this.
    Greetings from Germany, Rike

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  51. Dear Melody: Thank you for sharing the best of times and the worst of times with your loyal fans and admirers. You are beloved by many, and your challenges are nothing to hide, but enhance the amazingness of your achievements. Sending love and strength to you and Dave in this difficult time. Your courage and invincible enthusiasm for plowing ahead to make beauty and color bloom in the most difficult of places inspires me. PD is a terrible illness, and the treatments are just not able to fix it yet, despite some glimmers of hope here and there. I wish you and Dave some peaceful times, and that you recall that taking care of your needs are first priority, even so that you can help him, but mainly to preserve your health too! We are all cheering for you and sending love...

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  52. Sending you my prayers. So very sorry to hear that your beloved is declining. Please take care of yourself.

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  53. Dear Melody,
    I'm so sorry that you and Dave have to deal with this disease. It's so difficult to endure for both of you. Remember to take time for yourself. Sending love and best wishes.

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  54. Melody thank you for your honesty. I am so sorry you both have to go through this. I a sure it is not how you wanted to spend these years. I am so glad you have your sister and friends to support you. And I am glad you have quilting and knitting to give you an outlet. Good luck. I will be thinking of you often. You have been such an inspiration over the years!

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  55. I remember when you crossed the bridge from accidents to no more driving and with this event you carried us along graciously, with bridge crossing you take us along graciously. Sharing is sometimes sanity prevailing. Donna

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  56. I am just catching up and I am so sorry to read about Dave. My thoughts will be with the both of you. Take care.

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  57. Wishing you both strength and peace. Nancy

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  58. (((HUGS))) to you and Dave. I'm at a loss for words :(

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  59. I have been very poor at looking at blogs and even worse with commenting. My eye sight and computers don’t always cooperate. So today, I’ll stop by and say hello and copy this note into the comments. Some of you are on Facebook or Instagram, but many aren’t. As I’ve said all along, I’ve met wonderful people blogging.
    Praying for you and Dave. I appreciate your honesty and in this trial....

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  60. Melody- sorry to hear of the difficulty Dave is having, and the stress this puts on the family. I live in a senior neighborhood, and many of my neighbors are going through similar issues with spouses who have Alzheimers or Dementia. Our mind in an amazing thing, and can have wonderful impacts and negative. Sending positive thoughts your way. On another note...thank you for sharing about Gelli printing. I love printmaking, stamping and sometimes make my own stamps. I looked up Gelli printing and spent a fun afternoon with You Tube learning what it was all about. I'm going to try it as soon as the craft room table is cleared off. Thank you for the blog, I check in every few weeks.

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