Tuesday, June 17, 2014

The Soul Beyond the Senses

Senses Are Changing


This is hard to write because I am grieving as I see these things happen and so are others in his family I'm sure.

Cognitive Decline. Hubby and I still talk--but mainly about daily things like does he want yogurt, Boost, ice cream or water. I point out how cute our dog is, but he doesn't respond. Last Saturday, the day before Father's Day, he didn't recognize his own adult son and daughter, his only children from his first marriage. I am sure this is hard for them. They did not allow the grandchildren to see him, favoring letting their memories of the grandfather be of happier times.

Touch. Hubby used to object to our dog licking his head and toes. However, now he doesn't object. He doesn't like the feel of my hair when I bend down to kiss him, so I try to control that hair. At times he favors the fetal position in bed, but this may be because both knees have osteoarthritis it seems and we put a pillow between them. Last several days,  however, he is on his back with his knees bent and he rubs those knees.

Sight and memory. He doesn't respond to how he looks (buck-teeth look) with upper false teeth not completely in his mouth when I show him in a mirror. At times over the past few months he hasn't recognized sights in our home. He forgot about the backyard. I have to remind him that THIS is our house. I do that often. I also tell him that someone will be with him at all times now. I can't leave without someone being here. Usually they sit on the couch in the family room and look down the hall to see him in the hospital bed. No longer am I amazed that volunteers have come forward to stay with him when I need to leave the house. This morning a fifteen year old and a 17 year old stayed with him. The younger one touched his hand and my husband smiled warmly--a definite bond. Care receivers often live in an earlier time and I wonder if he thought Esteban is his son at a younger age. 

Taste and Smell. Hubby can chew a pill but not a capsule pill so he is not getting capsule pills now. Except for sweets his taste buds are gone. At one point I was crushing all his pills and putting them in applesauce. But it would take a long time to feed him and he needs his pain medicine at special times. His nurse has him on fewer pills now. He used to take Metformin for Type Two diabetes, but doesn't need it now and I do check his glucose. Fewer pills means fewer side effects. The Namenda and Exellon Patch for Alzheimer's wasn't working any more anyway. The Hospice nurse knows the protocol for pills. I am grieving about fewer pills, but this simplified medicine seems to be working and it is the dementia that is causing his downhill spiral.  I haven't done much with smell to bring up memories, but that is a caregiver strategy to use. On the other hand he does not smell his own excrement--but I sure do!

Hearing. Still good I believe, although he isn't interested in TV as he used to be. He does respond to my voice and if something is to be done (turn him in bed), you have to tell him that or he will get upset by shaking his hands. Tell him what is to happen, repeat it and do it. Then he is not upset.

So how do I communicate with my husband? 

Smiles and simple words. Elaine Pereira, author of I Will Never Forget writes HERE: "As the brain of an Alzheimer's person deteriorates neurologically, language plummets as mumbling trumps intelligent words." He doesn't answer questions now. I am learning to interpret hubby's mumbling.  If he doesn't want some food I am hand-feeding him, he will just push it away. On occasion he will give me an angry look or push my arm to get it away. I then back off. Mainly I smile and tell myself that if the situation were reversed (I had dementia), he would do the same for me.

Feelings. My husband will start to cry and I pick up on that as I say: You feel sad. It will be okay. This calms him down. Or I pray. Before the dementia, I never saw him cry. He definitely has emotions and often he smiles. He likes when I say I am his loving wife, and once he said "thanks" when I said this. I show him my wedding rings and his which, I noticed, is now on his middle finger since he has lost weight not eating much. I appreciate that a Hospice aide must have put it on the other finger.

Music. Sunday morning I put on hymns and he seemed to enjoy this so much. We could worship together. I mentioned Revelation 5:9 to him that in Heaven we get to sing a new songs to the LORD and he nodded. If the senses and memory are changing, his soul isn't. This Christian believer is with me when I pray. He listens to heaven talk. My faith helps me not cry, but to look to heaven where there will be no more tears.

I appreciate his soul and that he 
will be in heaven one day.  
It's great that with the decline of 
the senses his soul will remain. 




I look around the house now and am grieving for all of the changes. He is confined to our bedroom and content at that. Equipment has come to a halt. No more walker, wheel chair, Geri chair, and bathroom grab rails. Just a hospital bed with my twin bed beside him. We don't eat meals together any more as I spoon feed him and give him liquids with a straw.


When the Hospice Health Care Aide came Sunday morning, this Christian lady told me our house has peace. What a compliment to our LORD to say that the house has peace! The LORD is in this place.

The LORD is my peace. Psalm 119:165 reads:


Great peace have those who love Your law,
 And nothing causes them to stumble. 

I think of the words in the old hymn, It Is Well With My Soul by Horatio G. Spafford: 

When peace like a river
attends my way,
When sorrows like sea billows roll;
Whatever my lot
You have taught me to say
It is well, it is well, with my soul.  .  .  . 

19 comments:

  1. Ah Carol.. I feel your pain here, but I love the hymn you chose to end this post with. It is perfection. You have described sorrows like billows rolling and yet there is peace--I hope you are able to rest in that peace as well as to write of it. At the end of all my own days I know that there is a great Parent who is watching over me with tenderness even in spite of my fearful and fretting sadness and worry. I know you know this for yourself too.

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    1. Thanks, Mary. I used to think that hymn was hypocritical, and then life happens and having the LORD's peace is a reality when you reach out to Him. He will see my through.

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  2. Dear auntie,
    I soooo feel your grief, for as you know just recently went thru this. It's just been 2 weeks since my mom in law has passed and my prayers are with you as you reach the final steps of dementia. My uncle has the best caretaker in the world, he's the luckiest guy in the world.
    Please, make sure they help you keep his pain under control, mom also had osteoarthritis and all they wanted to give her was Tramadol which helped very little, on the day she passed it took them 3 hrs to get her pain controlled with morphine. Plz don't let Unc get to that point, it'll be bad on him and you. My prayers are with you. I love you.

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    1. Davina, I can't tell you how special it has been to share this caregiving with you and have you understand and comment on my emotions and practical things like chux and being careful with lifts.

      You have been there for your mother-in-law and you are my hero. Every though you are young, she wasn't put in a nursing home and you put your life on hold to be there for her.

      Love,
      Aunt Carol

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  3. Carol, so sad to read about the decline of your husband and I know how difficult it is for you to actually see it and to remember how he once was and now how he is reduced in so much because of that terrible disease. I was going to suggest to keep praise music on even if it is so very soft, but then you mentioned about listening to hymns together. I pray for God's mercies for you both.

    betty

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    1. Thanks, Betty. You have been terrific in hanging in with me, encouraging me, and praying for us. Those classic hymns such as "Amazing Grace" and "Great Is Thy Faithfulness" are the ones in his long-term memory that he is responding to these days.

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  4. Carol, words cannot express the sorrow I feel for you and your dear hubby. This disease is a dreadful thing. I grieve with you the changes that are at present. The thoughts you have expressed are most agreeable to the Word of God and I say Amen!

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    1. Sandy, I am reminded of 1 Cor. 15:54 which says, "So when this corruptible has put on incorruption, and this mortal has put on immortality, then shall be brought to pass the saying that is written, 'Death is swallowed up in victory.'" Then a few verses later it reads "But thanks be to God, who gives us the victory through our Lord Jesus Christ."

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    2. I have understood this verse from my younger years but in this season of our lives it is more impactful, deeper, richer and comforting. Thank you Lord for your sure promise, your sure hope of reality yet to come!!

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  5. I was thankful for this post because it helps me see what your days are like. I can't imagine what you are going through but I know that God's grace never runs out and I know He is giving you more grace as your burdens become heavier.

    That is one of my top favorite hymns.

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    1. And I am thankful for friends like you are are willing to read and comment on this difficult post and identify God's good grace that is being multiplied to me. Thanks for applying Galatians 6:2 which says, "Bear one another's burdens and so fulfill the law of Christ."

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  6. I can hear and feel your pain and sadness in your post, Carol. (((hugs)))
    We are always praying for you both, and we are here if you need us.

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    1. Thanks, Kerry. You live close and can put action to your prayers and I will call on you. Love how you and your husband are homeschooling your kids. Your kids are so sweet to me. You remind me of Pastor Ken's use of 1 Peter 4:10 which says "As each one has received a gift, minister it to one another, as good stewards of the manifold grace of God." Thanks, Kerry, for showing me God's grace in so many ways and teaching your children that sweet attitude.

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  7. Carol, this is so crushingly sad and so beautiful at the same time. I will be praying for you and your husband. Love you.

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    1. Thanks, Aimee, and isn't there theology in how the soul is being ushered into the presence of the LORD while the body is decaying. I am seeing this first hand now and it gives me such hope for that incorruptible body one day. I remind my husband that I am his loving wife, but don't have to remind him that the LORD is in our home.

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  8. Carol - I'm so sad to read your post. I'm praying for you and your hubby and hope that you are truly coping as well as you seem to be through your writing. Please take care of yourself everyday as well.

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    1. Thanks, Barb. It's as if I don't want to sleep so I can enjoy every moment with him. But I do think I will need to sleep and take care of myself. He is not suffering because Hospice is here. I am both grieving and rejoicing in the hope of heaven for him. Love you!

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  9. It is a hard, hard cross you bear but your journalling of it over these years will be a help and encouragement to others. God bless and keep you through to the very end. I loved that the youths came to sit with hubby while you were out. Death is a part of life and it is useful for children/ youth to accept it and especially to remind them of their own eternal destination.

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    1. Thanks, Julie. Your friendship means so much to me. What you just wrote echoes what I have been reading this morning from "Day to Day Spiritual Help When Someone You Love Has Alzheimer's". p. 148 reads "Our deaths are in God's hands just as much as our lives have been."

      Georgene sent me this Scripture the other day:“Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our affliction, so that we may be able to comfort those who are in any affliction, with the comfort with which we ourselves are comforted by God.”
      2 Cor. 1:3-4 ESV

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