Tuesday, March 20, 2012

The Post Most Challenging - # 20

     The March Slice of Life Challenge is hosted by Stacey and Ruth at their blog,


      This is a most challenging post.  I feel I need to tell, but it isn’t easy.  I want those of you who have become my blogging friends to know why I never write about my husband of forty-seven years. 
Since 2008 we’ve lived with a disease called Parkinson’s.  Except for a new medicine regime, it didn’t affect our lives very much.  We read, we studied; we found a good doctor and joined a support group.  My husband was retired so we didn’t have to worry about work complications.  We did as much traveling as possible, like taking our grandson on wonderful trips, appropriate to his age.  Some of you might remember that I wrote last summer about our trip to Sanibel Island.  As my husband swam several times a week, and we both walked for exercise, and that helped his health.  I was given the chance to move out of the classroom and become a literacy coach part time.  Life seemed fine. 
       But it wasn’t really.  I’ve become a Caregiver.  And I’ve slowly lost parts of my husband as the days pass by.   


       Parkinson’s disease sometimes is accompanied by another insidious component, called Lewy Body Dementia.  And because my husband, by doing a quirky thing here and an odd driving decision there, our doctor suggested that he get tested to see if cognitive areas were changing.  They were, and a few suggestions were made, in addition to prescriptions added.  Our lives narrowed because my husband’s drivers’ license was revoked.  He began to miss going to lunch with friends, running to the grocery store, and other trips we take so for granted because he couldn’t drive. 
       In this past year, really since last March when I started blogging, my husband’s cognitive health has deteriorated.  Many ideas help, but things can only be slowed, not stopped.  I am the caregiver (another story).  I want everyone to know that my husband has been a special father, a wonderful husband, a great brother, uncle, son, and a successful entrepreneur.  Someday I will write with special authority about my life with my husband. I have that authority because of my love and respect for him as my life’s companion. 
        My family emergency that I referred to yesterday has to do with my husband.  His ability to function well has deteriorated drastically since the school year began.  There have been good days and those not so good, some challenging and many doable.  But over the weekend, I’ve had to make some drastic changes.  He’s now in a hospital, waiting for a “bed” in a geriatric behavior center.  He won’t stay there; it’s just for assessment, but our lives once again will have to find a way to return a sense of living comfortably.  I’m not sure when he will return home.  Hopefully with a reassessment of his meds, some good R & R, it will be soon. I just don’t know. 
         I want to continue the March challenge and I know I’ll have time to write, and I will try to comment as much as I can. 
Please accept my gratitude for all your good wishes.  They mean a lot.


68 comments:

  1. Oh my Linda. I can't imagine how hard this journey is for you and your husband. Prayer are with you. Thank you for trusting us enough to share this tough part of your life.

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  2. Your words are full of dignity, compassion, strength, and love. I hope writing and sharing them has been helpful to you in some way; they've certainly been moving on this end.

    Best thoughts and prayers to you, Linda, and for a quick and successful return home for your husband.

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  3. Sending prayers of strength and love, Linda. You truly inspire me in so many ways. I count myself lucky to be able to learn classroom lessons and life lessons from you and your writing.

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  4. Thank you for the trust. The mixture of feelings that you have, the decisions and changes you have had and will have to make challenge you. I am impressed how much strength and love you have in you to face them.
    I'll send good wishes flying over the ocean.

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  5. Thank you for sharing a part of your life which is precious.

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  6. Good thoughts go out to you today, and every day.

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  7. Linda...I hope this writing has helped you in some way. I work with another teacher whose husband is in a similar state with PD. There are caregivers while she is at work but when she goes home she is the caregiver and how she comes to school each day and functions is beyond me. I send you and your husband positive thoughts and wishes for comfort and joyous good days ahead.

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  8. Linda, so, so, so sorry that you and your husband are having to go through this. Please let me know if there is anything a Denver writing friend can do to support you. I'd be glad to run errands or bring you coffee or meet at Tattered Cover or ??? carwilc@aol.com

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  9. You' re in my prayers...thinking of you

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  10. Thinking of you, my friend.

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  11. Linda, my heart goes out to you. My father has Alzheimer's, so I can relate to some of what you are saying through the eyes of my mother, but I can't imagine walking the road you are walking. I pray the Lord is holding your hand and giving you strength. May you feel the blanket of His love enfolding you and your family.

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  12. My heart goes out to you and your husband. You show such wisdom and strength in your writing, I hope you will find comfort too. You have many friends in this community who will be praying for your family. God be with you.

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  13. Linda,
    Much love and many prayers to you and your family. Your writing has rare strength and eloquence, and may it help you trudge through the days to come.

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  14. Linda,

    I send you love and prayers. As you love and support your husband. Please let us support you. When my Mom had Alzheimer's. I needed the laughter of friends. I loved my reading books. The stories helped me have a world that for a moment did not have this dreaded disease. Those moments of "normal" gave me time to find balance. Most of all I prayed and relied on my faith to make it day by day. Sometimes minute by minute.

    I so appreciate your wise counsel and compassion. It shows in your writing and comments to all of us. I send you virtual hugs.

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  15. Oh Linda, I wish I could give you a big hug right now. My thoughts are with you.

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  16. Linda, dear friend, you support this community of writers daily with your kind words, your compassion for what others are going through and constant support for each of us. I am honored you shared this with us. I wish I lived closer so I could stop by and take care of you once in awhile. Caregivers need their own care once in awhile and I hope there is someone close to help you.

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  17. Just last night my book club discussed problems such as what you write about with your husband. There was a BIG difference, though. We were talking about our parents. I can't imagine how hard this is for you. But your words show how much you love your husband and how much you have already demonstrated that love towards him. Thank you for sharing this. You and your husband will be in my prayers daily.

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  18. Linda, I can feel your strength and courage as you go through this with your husband. Lean on friends and family I'm sure their are many . . . as you should not carry this all. We all write how thankful we are for our health . . . but when it seems like it is being taken away, and we feel powerless, being thankful is an understatement. I hope that all the "arms" wanting to give you a big hug help today and whatever the future is.

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  19. Being vulnerable can be terrifying but it opens so many doors, for you, for your husband, and for us, the readers. I was a psych minor in college and one of the most memorable (maybe THE most memorable?) class sessions was when our professor invited his friend, who had Parkinson's, to come speak to the class. His willingness to be open taught us so much about dignity and strength - much more than we'd learn from a textbook. So thank you for sharing your story with us. Thank you also for your model of love and faithfulness. Praying for you and your family.

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  20. I'm honored that you have decided to trust this community of writers with the story about your husband's battle with Parkinson's disease. How hard it must have been to type the words you wrote into this blog post. I can imagine you have grappled with how much you can and should share over the past year. I'm glad you decided to come forward and share this important piece of your life with us. I know I speak for all of the members of this community who have gotten to know you through your writing when I say that we will do our best to support you from afar as you continue to help your husband, and the rest of your family, in the weeks and years to come.
    Please take the time you need to be with your husband right now. I know it's not in your nature to just post and refrain from commenting, but please give yourself permission to do just that if you need to. We know you care about everyone in the SOLSC community. We'll all be here for you when you get back to slicing fully.

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  21. When I need words the most is the time they feel so inadequate. You are in my thoughts, and I hope you can feel my love and support from a few states away. You mean so much to me as writer, teacher, friend. We too lived with Parkinson's with Donnie's grandpa. We were his closest family, and so we became his caretakers for the ten years after he lost his wife. He was also blind. Laugh when you can, cry when you want, and write through it all.
    Tammy

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  22. Linda,
    The love and dedication you have for your husband is evident, both by your words and your actions. You are such a lovely soul. I can't imagine the struggles that you and your husband have and will continue to face, but know that we all are thinking of and praying for you. Thank you for being so vulnerable and trusting the SOL community with this. Allow yourself to take the time you need with your husband. We'll be here when you get back!
    Jennifer

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  23. Linda,
    Thank you for trusting us enough to share this. I keep thinking about layers of people. We peel back layers, getting to know one another, and then learn another layer. I'm in awe by your commitment to children, and your own learning and writing, and your husband and family. You are a remarkable woman. I pray for strength for you right now.
    Ruth

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  24. I appreciate and honor you for telling this painful and private story. I think it is cathartic to write about the most intimate or difficult parts of our lives. You are an inspiration. Healing prayers and thoughts are coming your way.

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  25. Linda- my thoughts and prayers are with you. My mother has dementia so I can relate to some of what you are going through. Just remember to find time for yourself. The role of caretaker is exhausting, and we need time to ourselves. Your writing is powerful. Thank you for sharing your gift of words.

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  26. Oh, Linda. I'm in complete surprise right now and I don't have the right words. But I wanted you to know that I'm listening. I hear your voice. I hear your pain, your frustration, your worry. I hear your strength as well. Please accept this **squeezing hug** to know you are surrounded near and far. You are in my thoughts and prayers.

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  27. I am very sorry. Thank you for sharing with this community. I hope you continue to write, and perhaps draw strength from others by doing so. At least you know how many people are praying for you and your family. Keep writing!

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  28. Prayers,strength and courage for you and your family. Thank you so much for sharing. Let the people arround lend you their support...share what you need...that sometimes can be hard to let people know.

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  29. Linda,
    It took great strength to write a slice like this. Please know that my thoughts and prayers are with you and your husband. As a newcomer to this writing community, it speaks volumes to me that you have trusted enough to share your thoughts about something so personal. I'm honored to be a part of your writing life.
    Robin

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  30. Linda...I'm so sorry...my beloved Uncle had the same diagnosis as your husband and now my mom without the Parkinson. It is so hard...I will pray for all of your family. love nanc xo

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  31. Oh Linda, I hope you can feel all of the prayers coming your way - from myself and the rest of this community. I hope the doctor's are able to find a new combination of medication for your husband, I can't imagine how difficult this must me.

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  32. Linda, thank you for sharing. I have tears in my eyes even though I have never met you but feel like I really know you through your writing. Day by day is all I can say during times like these. Sounds like you both have had a wonderful life together. Many stories await your pen.

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  33. It's so good you have found your writing voice and you can use it to your heart's content. You are a community of readers.
    So glad you shared this with us Linda,
    All you very best to you and your husband and family
    Bonnie

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    1. I agree with Bonnie. Wishing you peace.

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  34. The insight and openness you provided to us, your readers, is admirable. I appreciate your honesty. I experience the struggle along with you. I hope the quickest return home as possible for your husband.

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  35. Wow Linda, thank you so much for sharing this with us. Your love for your husband is evident through your caring words, but it is also obvious what a challenge this is for you. You have been a supportive and encouraging role model since I've started blogging, and I can't believe you've done it all while struggling with such difficulty in your family life. Know that we all care about you and are praying for your husband!

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  36. Linda, I just want to give you a hug. Sometimes we have to make such hard decisions in life, that it just doesn't feel fair. Being a caregiver is not an easy task. I echo what Jennifer has just said before me: You've been such a role model to me and so many others, and it's hard to imagine that you've done it all while dealing with such difficult situations. My prayers and thoughts are with you and your husband. I hope you take some time to care for yourself.

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  37. I have been very concerned about you for the past few weeks and even told my husband that I felt that something was wrong, but didn't know what. I didn't want to intrude. Thank you for sharing this so we may pray for you and your family. I wish I could be there to help. I hope you have someone close enough to give support when needed. If you do, make sure you use them. You must be worn out both physically and mentally. A virtual hug is all I can send. Wish it were more!

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  38. Linda, I have never met you, but you reach out so powerfully with your words every day that I feel connected to you. I am not just tearing up reading this, but all out crying. And I am shocked that I care so deeply--it is because of all that you give that I care. I often read your comments to other people and think, that is what I am thinking but I never would've said it so brilliantly, so warmly, so supportively.

    Today I spoke with a colleague I haven't seen for awhile about her sister's recovery from traumatic brain injury after a fall. She said that the hardest part is she has lost her best friend. Of course, I have no idea, but I imagine your experience must touch on some similar chords. I hear it in your words when you speak of your role as a caregiver.

    I just want you to know what an incredible thing it is for me that you have touched my life, even in this distant blogging world, and I feel so lucky to have even this small glimpse into the incredible gift you give your husband every day you touch his life (and vice versa).

    Thank you for sharing.

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  39. Dear Linda,
    Your love for your husband comes shining through in your words. I will be saying prayers for God's grace to be upon you and your husband to give you strength and peace. ~Sending a cyber hug.~

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  40. Linda, I can't imagine what you are dealing with on so many levels as this disease unfolds in your husband. May God wrap his arms around you all and strengthen you. You, your husband, and your family are in my thoughts and prayers.

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  41. Linda,
    You have such a gift and you share it so freely. Your love of words and the way you articulate them is so inspiring to all of us. Your dedication unwavering, your passion so clear, and your strength is even more evident now. Thank you for your love and support through all the comments and time you have spent reading our posts. I hope you can feel the love and support that we all so eagerly want you to feel. I hope you can find comfort and peace in this difficult time.

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  42. Linda,
    Your post brought a tear to my eye. You wrote with such honesty about such a difficult topic. I'm sure it is a hard time for you both. I wish there were some perfect words, but I cannot find them. Know that my thoughts and prayers are with you.

    Cathy

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  43. Dear Fellow Writer,
    It is an honor that you share what must be weighing on you in unimaginable ways. I do hope your writing helps with all you are dealing with. Please know my thoughts and prayers are with you.
    Becky

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  44. Thank you for a true portrait of love. Prayers are lifted up for you .

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  45. You have touched so many people with your words. I hope that our words touch you - as virtual as they are. I am uplifted looking over these comments here and feeling that every time someone reached out to you through their comment - a little spark of prayer, of hope, of love was sent your way. I hope they keep coming, they will from me.

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  46. Linda,

    I will be keeping you and your husband in my thoughts. I can see why this was your hardest post to write. I hope that in sharing that it will feel easier for you to be able to share more about your life together and that it will help you sift through your emotions.

    The summer after my 7th grade year my dad had an aneurism burst in his brain. He had to relearn everything (walking, talking, eating...) Then he ended up having seizures, which resulted in losing his license. It was a long process of finding the right medication, and not having that freedom to drive was so hard for him. I remember how difficult it was seeing him so upset. I can imagine how it is hard for you both for yourself and the changes in your lifestyle but also knowing how hard it is for him to cope with the changes. I appreciated the perspective that you share in this post and the way that you are honoring him.

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  47. I send my prayers for you, your husband and for your family.

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  48. Thank you for being so candid with us, Linda. My thoughts are with you and your husband. This slice, as much as it is sad, is also beautiful. Your writing makes clear your love and respect for your husband while not shying away from the challenges and the changes to your role in your relationship.

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  49. Beautiful slice. My prayers are for you and your family. Your strength and love shines through in your post.

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  50. This slice of life challenge has opened up my eyes and my heart. I feel I have another community to belong to. I know you must be feeling the love. Your post is full of honesty and dignity. Caregiving can be such a strain, and sometimes goes on for years. Know you are in my prayers. Keep the faith and keep writing!

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  51. Linda, thank you for sharing so personal and close to you to us. I truly feel like we've created a strong community through this slice of life challenge. I can't even begin to imagine what it must be like for you. However, your strength and your courage is an inspiration to me. I'll be praying for you and your family. Thank you for writing and letting us get a glimpse into your life.
    Jee Young

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  52. I've been sitting her trying to decide what to write and I'm stuck. I have so many things I want to say that I have no idea where to start. Really, I wish I could call you. Can you e-mail me: jen@teachmentortexts.com. I can't find your e-mail here.

    What I want to say most is that I think it's great that you are sharing this part of your life with us. I know it's hard but at the same time sometimes it's hard to shoulder everything yourself and to deal with your own feelings about how your life is changing while you are helping your husband and probably the rest of your family deal with the changes, too. It seems like it might be a relief to share with someone or lots of someones who are neutral and are outside of what you are going through with your family. I think it's super healthy actually but that's just my opinion. It's very brave of you but also important that you can share and vent. We love you and are here for you!

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  53. Linda, thank you for your openness with all of us. I am adding you and your husband to my daily prayers. This is so difficult, for you, him, your children. May your writing continue to feel soothing.

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  54. May you have strength for this new phase in the journey. My heart goes out to you.

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  55. Linda, I did not get to read this post yesterday, and I am so glad I read it today. You are an amazing woman and I can feel the love and respect you have for your husband. I'm glad to know that he's getting the care he needs and that you are planning to someday write more of him. He sounds like a strong man...and you are a strong woman.
    My thoughts are with you both.
    r

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  56. Linda,
    I did not get to read your post yesterday. I'm so sorry for all that you have been going through. I'm not sure I have the right words to express what I want to say to you. I am sorry for your all you are enduring. I will pray for you, your husband, your children as I know Parkinsons is affecting all of you. I will also pray for strength for you as you navigate through the difficult days ahead.
    I have a son who suffered a brain injury almost 2 yrs. ago. I feel your pain. We recently had to make many decisions regarding my son's care and a hospitalization to help with medication changes that were affecting his mood etc. My heart goes out to you.If you ever need someone to talk to, please don't hesitate to email me...I am here for you, I understand!

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  57. Praying for you and your sweet husband.

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  58. LInda,
    My heart goes out to you! I am walking this path with my Mother. I can not imagine it with my husband. It is the slow loss that is so hard to take. Know that my thoughts, and care are with you!
    Peace and Love

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  59. Linda,

    Prayers to you both and strength to you as you work through this difficult time of changes and decisions. You write with such love and compassion. I hope that writing is a source of comfort for you. Your words are a tribute to the one you love. ~ Theresa

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  60. Linda,
    Thank you for sharing your story. Your writing is beautiful and your thoughtfulness is inspiring. I'll keep you in my prayers.
    -Janiel

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  61. Linda, I'm behind in my blog reading and didn't see this post until today. I'm sorry for the tough times and challenges you're facing now. Both my late FIL and my aunt suffered from dementia and it was devastating when they slowly slipped away from their loved ones. The uncertainty must be very trying. I'm sure you know that many of us are praying for you both and sending our best healing thoughts. You will be called upon to access strengths you didn't know you had. Thank you for sharing your story. We are here for you.

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  62. Linda, my eyes are filled with tears. Your love for your husband resonates through the words you have written. Thank you so much for sharing this sensitive, loving post. I will be praying for you. I was behind on my reading, so at writing group last night, your story was shared. We are in awe of your perserverance, kindness, and stedfastness in your writing, your family, your SOL community. My heart is with you.

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  63. *Deep warm embraces* - I send you and your family my sunshine, moonbeams, and firefly kisses.

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  64. Linda - I know I'm late in this, but I want you to know I'm here for you too! Thank you for opening your life to us. I look forward to when you write about your wonderful husband with the authority of which you speak - it will be beautiful. You'll be in my thoughts and prayers!

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  65. Dear Linda,

    I'm sorry I'm so late, my blog reading is spotty, very catch-as-catch-can, and I missed this. Sending you hugs and my very best wishes,

    Tabatha

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  66. Dear Linda,
    I, too, am holding you in my heart and sending strength and prayers to you and your husband. You are such a generous member of this community, and we love you. a.

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Having a conversation is a good thing!