This is dementia. It's not just a memory problem.
What you read in this blog is purely my own personal experience in dealing with Lewy Body Dementia every day.

This is not meant to offer any medical or legal advise.
I have no professional training in care giving or experiences in formal writing.
I'm just a woman that loves her husband deeply and wants to provide him with the best quality of life he can and chooses to have.
My prayer though this is "Lord, What am I learning from this; how can I use it help someone else and to glorify You?"
If just one person finds comfort in this public blog. I will feel like it was a success.

Wednesday, September 25, 2013

Surprise Reaction

No matter how much we prepare for something, ask for, anticipate and expect, some things we just are not ready for when it arrives.


It's a wonderful organization. They have been involved in my life more than once so I am familiar with them and appreciate what they do and how they do it. I always knew that when end of life care came for Hubby I would be glad to have their services and I have no doubts that I will be glad now that Hubby has finally qualified for it.

But WAIT!!

How come the news I was waiting for feels so bad? Why was this distressing? I should be relieved so why is this different than when my grandmother, mother and friends we cared for had them. We were glad to have Hospice on board then. Relieved actually that when we needed something, Hospice was a phone call away. Helpful and compassionate. Heck, Hubby and I even volunteered for our local Hospice. I expect nothing different in the level of care and attention, education and support. And yet, the tears came after the notification and they caught me off guard. stupid tears.

I've tried so hard to maintain a level of dignity for Hubby and the addition of Hospice will ensure I can continue to do that for the man who is piece by piece losing himself. Another piece gone is his ability to take his meds most of the time. I have started to hand feed them to him. A sip of water, pills, another sip of water. He has many times asked me what he should do first so I usually talk him trough by holding the cup and straw, encouraging a drink, inserting the pills and offering another drink. I don't have to do this every time but the frequency is increasing.

He is also experiencing more anxiety, most of the time upon waking from a dream he can't shake. He is always worried something is wrong, no matter how many times I assure him everything is fine. I can't even go to the bathroom without him opening his eyes if he suspects movement in the room, that usually comes in the form of the dogs jumping off his bed when I get up. Even the dogs want to know where I'm going and if everything is ok. One day I almost expect to find Hubby along with the dogs, lying in front of the bathroom door awaiting my exit :)

Yep, everything is fine as long as the tears stay away.


  1. I will cry for you :) #angelkathy
    Love, Crissy

  2. I haven't been reading your blog for long and I don't know you in real life, but I will butt in anyway and say I think it is ok to cry and be sad, because your situation is terribly painful. Hopsice care can take some of the burden of care giving away, but qualifying for it is one more sign that the person is slipping away. So I don't think your grief is bad or unfounded. I think it is part of having a loving heart.

  3. Sending love and hugs, Kathy. I can imagine the conflict in feelings. Know we all think of you often...and hold you in our prayers. MJ

  4. Sending you many prayers and lots of strength as you move forward. It's a little over a year since I lost my mother to LBD. Hospice is very helpful, but it is so hard to deal with the sadness that it is now time for hospice....
    Helene in NY

  5. I just reread your previous entry and although I realize through personal experience with end of life through my husband's challenges and working with hospice and other relatives I realize a turning point can happen quite quickly -- I am surprised to find you're now on this journey. I also know each person's journey is different but I believe those of us on the road can use all the signposts and observations of others to provide some small insight into possible developments signaling various levels of LBD and that movement into other levels. I know I do and I'm just not finding enough specific behavior/physical notes that help me understand if "this" or "that" may be a transition, a signal, an advance warning to "take heed" and "alter course" or somehow be forewarned these may be significant guideposts on our journey. And, Kathy, I know where you are as I've walked your walk caring for my husband and watching him change so dramatically. And, now, as I watch the changes that are escalating and most probably signaling another walk down that path together with my Mom. Thanks for your suggestions; I'm a constant web searcher and meeting attender always trying to understand and advocate. Thank you and thanks to your husband for sharing your journey as it's been a blessing to me to have found your writings.

  6. Kathy; You have been their for your husband and dealing with his every needs. My husband too has LBD and diagnosed same time as yours. It is very difficult to watch; enjoy every say to the fullest! Thanks for sharing!

  7. My husband (27 years this December) has Lewy Body. I'm 47 and he just turned 70 on 10/17. He was just diagnosed late into his progression in Sept. 2012 (First caught him hallucinating Feb. 2012). He was on Hospice this year from April through July when Medicare kicked him off because of their now tighter Hospice qualification standards. I completely understand your emotion at having your husband go on Hospice. In our case, Hospice actually saved Gary's life from the nursing facility that was literally making him sick after he fell and fractured his hip and pelvis in late March. It only took 10 days of them not understanding his care needs or his disease (and making a huge medication error) to push him onto Hospice with an infection. I am so very sympathetic and hope you are doing ok. I hope we can be in touch. All my best.

  8. Dear Kathy, we are never ready for the end.

    I prayed for my mothers end. I was exhausted. Mom was too. Hospice did help us. My mom even "graduated"from hospice services after she started drinking beet juice. We had a wonderful summer.

    She eventually needed hospice again. Hospice helped give my mom and me more restful days. It was a blurr. I cried a lot. It's ok to cry, it means you are in love with another person... What a beautiful gift we have received from God, to really experience LOVE in this lifetime.

    Stay strong. You are a true angel.

  9. I just found your blog a couple days ago and appreciate so much your incites. I shared it with my children and my son wrote back and said deja vu..It appears we are in very similar circumstances at the moment. My husband, Herb, was misdiagnosed with Parkinson's in October of 2007 and not until February this year did we get the correct diagnosis. And that came only as a result of a lot of internet research by my daughters and myself. On January 19, my husband had a dramatic down turn. He went from being able to walk with a cane to needing a walker over night. He then became incontinent and needed a great deal of help to get up. He also started to "sit down" unexpectedly and became exceedingly confused. With in a month he had to use a wheelchair.And just within the last two weeks he too, has started to refuse to eat or drink and now appears to be forgetting how to even sip from a straw We started on Hospice last week and it.appears that Herb is close to the same stage as your husband so I know how hared it is. I appreciate your being so open about planning for the funeral and such. I have just started to try and do that with my daughters help but it's hard to see through the tears.I have always said to my children that with God's help I can handle anything, so I guess this is my chance to prove it.

    The LORD make His face shine on you, And be gracious to you; The LORD lift up His countenance on you, And give you peace.'


  10. I have been reading your blog for a while now. It saddens me and gives me strength at the same time. My father seems to be just a short few steps where tour husband is now. He was misdiagnosed in July 2009 with Alzihmers. It wasn't until July 2012 that he was diganosed with LBD. All of your accounts with your husband ring true also with my father. It is so hard to watch a once strong, gentle, hardworking, loving man loose his meneories and his capabilites to somthing that has no explanation. It is hard for others to understand just how aweful this disease is. Your right, its not just a disease of the mind it is a disease of the mind, body and spirit. I think about you and your husband everyday as I help my father with his journey and wonder how you are coping. I read your stories and wonder if what your going through is what my family is headed to. You have done a great job freely giving your knowledge of this disease as it is happening right in front of you. I want you to know that your stories mean so much to so many people. You will never know how many..
    May God bless you and your husband and give you the strength to walk trough this horrible disease till the end. Here is a hug from Georgia all the way to you..


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