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.

Friday, September 6, 2013

Prepared, But Not Ready

Hubby started his new pain medicine and I was expecting a hit in cognition and mobility. They both came.
I am glad I read a lot about Lewy Body dementia, have joined support groups and read the stories, gotten advise and feedback from those ahead on this journey. It has made the walk a little easier for me so I can make the walk a little more comfortable for Hubby.
At times I get a little overwhelmed by the grief and anger of caregivers. I retreat from everything. I wonder how can I help? I understand their pain and sadness. But I also get encouraged and supported by others. I appreciate their words. I try to be a supporter and encourager. Today however I may not be a very good one.

I had Hubby evaluated for Hospice again. I did that about a yr and a half ago. You can read it here
Again he didn't qualify because he could still transfer on his own, had limited walking and can put food in his own mouth. The dementia criteria is pathetic!

The last few days I'm struggling with my emotions.
I sit with Hubby as he sleeps. The new meds have helped cap his pain and I can tell by his facial expressions, or lack of, that he is resting, for that I am grateful. But oh the price he paid for it. As of today he is 2 days bedfast. No more pulling himself along the furniture to get where he wants to go. He must be physically assisted to transfer him from bed to wheelchair when he is encouraged to go to the bathroom and or get cleaned up. His appetite has decreased to maybe a couple of bites of something but for the most part, he doesn't want anything even when I bring it anyway. Bowls of ice cream are left to melt, sandwiches are left to dry out, candy and snack foods untouched. Although I did find a couple of wrapped pieces placed under his pillow.
A precious friend brought us fresh veggies from her garden and he was so pleased to have them but he only ate a small portion before giving up. I've made shakes and offered softer foods but they too are left unfinished or declined. It's hard to watch this.
I do however push fluids, fluids , fluids, water, tea, juice lemonade.
I think I'll try a few fruit slushies too, now that I'm typing this out.

Cognition took a terrible beating. The hallucinations have him confused but not upset. Where he would normally not acknowledge them as real or ask about them if he struggled with it, he asked one who they were so I can tell he is having a more difficult time distinguishing. Again he is accepting my word that I do not see what he does so that's a relief for us both. Verbally at times he makes no sense at all and a word spoken gets looped in his brain and he uses it in place of something else he wants to say. It's hard to keep up so some times I just wing it. It doesn't happen all day because he sleeps more than ever. That doesn't seem possible so maybe I should say he sleeps differently now. Before he would sleep and turn over or rise to go to the bathroom and back to sleeping, now, he stays put, in one place, never moving.
This raised my red flags about developing pressure sores. I have made a call to the VA to see if he is eligible to receive an alternating pressure pad and pump for his bed. I will keep a VERY close eye on him to ward off this trouble! We have him out of pain, I want to make sure it stays that way even if I have to order one myself.

My mind has been going over the list of coulds, needs and things that will.
This is hard to write but I promised I would be truthful about our lives in this blog so I don't sugar coat.
I know Hubby is dying, there I said it... I said it :(

My mind and prayers are stuck on our children. I keep praying for their peace and strength as well as my own. I pray daily for Hubby to always feel loved and safe and for his passing to be peaceful.
Hubby and I have talked extensively in the past about how we wish to live out our last days. We are both in agreement on how we want things.
Comfort care. No life saving measures, no tubes, no hospitals, just whatever it needs to make us comfortable as we transition from this life to our eternal one. Talking about this difficult subject was fairly easy for us. We have a Hope built on our belief in Jesus and we accept that life here ends for us all and we move into an eternal one. We agreed we wanted cremation and we agreed we wanted no services just a gathering of family members that wished to congregate over a meal somewhere. 
Arrangements for these things are all in place for Hubby. An advanced directive and a physician signed DNR. Burial policy paid in full. A list of people to call when the time comes and I even went so far as to write out the obit. I heard you gasp a little! It's something that can't be avoided and I wanted to do it with a clear head and not in a moment of emotional distress. So I think we are prepared, but oh, I am so not ready. Not ready at all.


  1. My heart is broken for you and your hubby. I have been following your posts because my dad was recently diagnosed with LBD. It is a dreadful disease.
    Prayers are being lifted for you and hubby.

    1. Joella,

      Thank you for the support and the prayers!
      I'm sad to know your father was dx. Please enjoy all the good days you can and learn as much as possible.
      Thinking of you and adding you to my daily prayer list.

  2. You are so smart and forward-thinking to have everything prepared, however, I know it doesn't make it easier. I am so sorry, this is so hard. Try to take some time for yourself if you can just to rest and recharge.

    1. Joy,

      Thank you for your support.
      Knowing there are others "out there" that have already taken, are taking the walk now or just emotional uplifters makes the journey a little less lonely.

  3. I agree with Joy, you are very smart to have things done before. My husband is dying too. It took me years to say it too. I hate it. Encouraged by my therapist, I have done everything you have except buy the the cremation plan. I'm struggling with that even though I know it needs to be done. It's just so final. I'm curious about your hospice.... your hubby seems to be doing so much better than mine. For over a year mine has not been able to walk, feed himself or speak well. But physically he's mighty healthy. I've never considered hospice yet because he is so healthy except for the LBD. I'm puzzled as to what to do.
    God bless you for all you do for him. We're walking them home, aren't we? (((hugs)))

    1. Hi Claudia,

      Thank you for taking time to write.I suppose making all of those decisions about funeral and or cremation services would seem easier if our loved ones were well and we were just preparing for the far off future, wouldn't they? As you say though, this feels final. I understand.

      The Hospice I have asked to evaluate Hubby is through the Veterans. The first time he was evaluated I actually wasn't surprised too much by a not yet. Maybe more disappointed because I would have liked to have the help with him. Their criteria to get Hospice is very strict. This evaluation I was surprised by the denial. Even the Dr thought it was a good idea for evaluation.
      If your husband is farther along than mine, I can't see any reason you should not be able to get services for him. It won't hurt to get an evaluation and the worst they can say is , not yet. You can actually call them yourself and ask them to make an evaluation. Please let me know how it goes for you. I'm trying to get mine through the VA services as everything else is through them for Hubby.
      Yes indeed Claudia, we are walking them home :)
      Prayers for you both!

  4. My precious 71 year old husband of 49 years was diagnosed with LBD and Parkinsons in January of 2008 is also now in the dying process. THANK YOU for your post. Our journeys sound very similar; however,after a 3 day hospital stay the middle of July, our doctor urged us to consider hospice home care. Although on one hand .... I can't really imagine that my husband might be in his last 6 months on this planet before he receives his resurrection body, on the other hand I am moving out of denial as it's obvious that his bladder and his intestines are failing. Although I initially resisted hospice home care, I am now so very thankful as the past 5 or 6 weeks with hospice has resulted in me having an RN (his Case Worker) very actively involved in helping me figure out how best to treat various problems. He was unable to transfer, bathe, or feed himself anything except some finger foods when the doctor recommended hospice instead of the home health P.T. and O.T. Yes, it was hard to admit "my husband is dying"; however, now that I've admitted that to myself .... I am focusing on learning more about what the bible says about Heaven. I have been greatly blessed listening to Randy Alcorn's CD devotionals entitled "50 Days of Heaven." God bless each of you Caregivers as the journey can be long, but God is GOOD all the time and He is somehow working all of this together for good for those who love Him and are called according to His purposes. Blessings to each of you.

    1. Hi Jan,

      Thank you for reaching out.
      I am sad to hear of your husbands decline.
      Yes, God is good all the time!
      I'm glad you have Hospice services. They are wonderful, aren't they? I have used them before with my own mother, grandmother.
      I hope you are able to find much comfort in your study of Heaven. I can't think of a more wonderful place.
      Please stay in touch and let me know how you and your husband are doing.

  5. Kathy, praying of course for you and all. My wife hasn't been diagnosed yet with LBD but has all the symptoms, so I have some awareness of the struggle you have.

    Just wanted to share that as a military veteran and an 8th grade science teacher I've known some brave and caring folks. But no one matches the devotion and noble selflessness that you and others invest in loved ones suffering this road.

    Kudos to you, it is worth it and later I think it will be the crowning achievement of our lives, what we do for our suffering mates.

    Praying for you in the rough times, eventually the suffering will be balanced in the scales.

    hang in there


    1. Brian,

      Thsnk you for commenting.
      Oh I hope and pray that your wife is found to have another issue but I know the gut feeling that they will dx lewy and even when it comes, it's still painful to hear.

      Please find support for both of you now. You can never be too prepared for the future. Make plans enjoy life, live while the living is still good. Rack up those good moments, they will carry you through. Laugh as often as possible. A sense of humor will take you a very long way :)

      Adding you to my prayer list. Please stay in touch and let me know how you are doing.A nd if I can help guide you in a direction for answers, please ask. I'm very happy to help. The support of others is what gets me through and I want to give as much as I get.


  6. I wrote another comment earlier to your latest posting. I'd not seen the previous entries. Now I have. They're difficult but necessary to read as they bring back memories of my last times with my husband. How quickly turns in life occur. Please know that your ability to write about LBD even at the most trying times gives insight to so many who do not understand the complexity of this Dementia. Many people only see the regression and total incapacity of Alzheimer's as it develops often for very long periods of time (being bedridden or unable to speak or totally regressing agewise) and do not understand the complexities of mixed levels of ability, capacity and comprehension of Lewy Body Dementia. More needs to be written about LBD as you're doing Kathy. Through your journey you are sheding light into a vast darkness. Sending thoughts and prayers your way.


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