Monday, February 27, 2012

Why Would God Allow Dementia?

The title of this post represents the heart rending question addressed to me by a friend whose loved one is slowly fading from view due to Alzheimer's disease.

Here are the links to the posts on this blog that address this question:

Where is God in Alzheimer's?

God and Alzheimer's

To my fellow caregivers: I'm praying blessing and strength for you as you read these words of comfort the Lord has so graciously provided to my mother and me on our journey through her Alzheimer's disease.

Saturday, February 25, 2012

What Faith Can Do...

I just wanted to share Mom's journal entry at the end of the day yesterday after she became so terribly angry with me for no reason I could fathom (see yesterday's post entitled, "Ouch..." below).  Immediately after the incident, when she ridiculed the look of shock on my face and I left the room without saying anything to her, she wrote, "Well, I just made an A_ _ of myself."  

She was depressed and, as she said, "discombobulated" for the rest of the day, despite my efforts to cheer her. 

After she went to bed I picked up her journal and read her final entry of the day:  

"I once was lost and now am found..." But I am never really lost, even on a 'blah' day, because the Lord is with me.  

Faith in God through Jesus Christ can bring peace even as memory fades, confusion threatens, and anger flares. I am so comforted by the Lord's presence with us on this journey, and so grateful that Mom knows Jesus as her Lord and Savior.

Friday, February 24, 2012

Ouch. I Mean Really...OUCH!

I was upstairs working when I heard loud, angry knocks on the door that separates my mother's apartment from the main part of the house. "Someone acknowledge I'm alive!" she shouted. It had been less than 30 minutes since I'd been into check on her.  

I'm not proud of how I react in situations like this. I freeze. I stood there on the other side of that door, heart pounding, immobilized, literally afraid to open it.  But then I heard Mom's outside entrance door open.  I stepped through the door to her apartment and said, aghast, "Mom, where are you going?"  

The word "angry" does not begin to describe how Mom felt and spoke. She was venomously, viciously, infuriated. She said a lot of ugly things and, as she drug her walker back in through the open door and hobbled over to her recliner she said, "Shut your mouth, you don't look very bright with it hanging open like that." 

Without speaking I went back into my part of the house, shutting the door behind me.  

I emailed a request for prayer to my prayer partners. My heart was pounding and I was shaking, and so I asked for prayers for myself (I need to respond as a loving and calm caregiver, not as a trembling and hurt daughter) and for my mother.  

I prayed for wisdom, waited 30 minutes, then filled a basket with apples and stepped through the door to Mom's apartment.  She looked up and smiled pleasantly.  "Oh, that's pretty," she said. "Is it for a centerpiece?"  

"Yes, and you can help yourself to these anytime you want. They are especially nice ones."  

Jekyll and Hyde.  

I casually picked up Mom's journal.  In the middle of a page of her spidery scrawl, just after, "Lord I am so grateful for this lovely apartment and my many blessings," and just before a narrative summary of the Janette Oke novel she is reading were these words, "Linda do you want me to leave? OK, I'm up and dressed, I'll just leave."  

I have no idea what triggered this.  As Mom's caregiver I know her anger usually arises because she thinks food is being withheld from her, but there was no indication of that this time.  She'd just finished lunch.

So often in this blog I record positive things about my mother's journey through Alzheimer's. Sometimes I think I do a disservice to those who are struggling with care recipients who routinely lash out in anger.  It is painful to endure the grief of loss I feel when my mother is so irrational, painful to receive an unexpected injury from her unwarranted anger.  Let's see what the Lord said to me about such things during the time I was transitioning into the role of caregiver 8 years ago... Here's a quote from a reading called "Praising God in the Heartache:"
I suppose it is instinctive to draw one’s hand away from the hot fire of grief, but I found a divine paradox; if I tried to flee the pain through escapism, I soon found myself overcome by flames of sorrow. “For whoever wants to save his life will lose it,” (Mark 8:35).
Grief is like one of those woven finger traps that tighten the harder one pulls. I learned that the only way to escape was to go deeper in, with the Lord at my side and the confidence that He would bring me through. I knew this didn’t mean that I should go around with tears in my eyes and a sorrowful countenance. It’s just that I needed to stop avoiding the grief issue and to take my sorrows to the Lord’s healing balm and comforting arms of solace.
I prayed for the strength to give up avoidance of the Lord, of my mother, and of others God put in my path. As I delved deeper into God’s Word and opened my heart to praise, I was delivered from the danger of wasting the discipline of grief.

Today’s Scripture: “For whoever wants to save his life will lose it, but whoever loses his life for me and for the gospel will save it” (Mark 8:35).
“Be merciful to me, O LORD, for I am in distress; my eyes grow weak with sorrow, my soul and my body with grief … But I trust in you, O LORD; I say, ‘You are my God,’ My times are in your hands” (Psalm 31:9, 14-15).
Well, yes.  It is true that as I sank down in a chair after this confrontation was over that my first thought was, "Chocolate, please, Lord, I want some chocolate."  But then I apologized to Him.  "I really want to hand You this pain and to receive Your solace, Lord. I don't want comfort from any other source."  And I really don't.  

Lord, bless my fellow caregivers today.  

Monday, February 13, 2012

Continued Improvement...

I just want to share that my mother's upward turn as a result of what we might call music therapy has continued. It is amazing. 

I think the key is that the c.d.'s we are playing for her now were from her own collection. Before she was diagnosed with Alzheimer's she'd had time to become very familiar with these melodies and also with the words to many of the songs that are instrumentals. I was amazed today when she knew most of the words to the song, "Paper Moon..." and they are not easy lyrics!  

You'd think it would have occurred to me to work hard to provide music she knew--and in a way, it had. I'd recorded I-tunes selections of familiar hymns for her. And I've written about 50 devotions accompanied by midis of familiar hymns (ten of those are posted here).  But while she enjoyed these and obliged me by listening to the melodies and singing along a bit, they did not have the strong positive impact for her cognitively as have the big band, jazz, and popular music from the 60's and 70's that she had selected and enjoyed for herself.

This is just another lesson in treasuring and preserving the individuality of our dementia patients. I knew music was a Good Thing--but how silly of me not to link that knowledge to that stack of c.d.'s in the box in Mom's closet. Because the Sirius music channels on our DISH TV were so easy to access, I spent a lot of time playing pleasant music that did not link to specific memories for her as her own collection has.

My next project is to go through her record album collection with her and see which albums seem to trigger the strongest memories--and then we'll begin the expensive process of finding those albums on i-tunes and recording them to c.d. format...I don't think Mom is ready for an i-pod of her own.  But who knows?! 

Friday, February 3, 2012

An Upward Turn...

My mother is in the midst of one of those times of improvement that sometimes happens for dementia patients. I know not to attribute an inordinate amount of significance to what is probably a temporary situation, but I thought I'd share the event that triggered her improvement in case others might be helped.

When Mom came to live with us I learned quickly that following the same schedule every single day was important to her sense of security. She felt most comfortable in her familiar chair in her familiar room, and seven years later  is happily following the same routines we established when she first moved in.  In fact, she has become so habituated to our daily routine that if I forget to turn on her music in the morning or to supply her with her notebook and pen, she reminds me.

Although I knew that changing decorations in her room seasonally makes Mom happy, I hadn't considered making other changes in stimuli. I assumed she would not like change. And there was a "don't rock the boat" mentality that other caregivers will probably recognize.

One of Mom's routines has been to record in her journal the titles to each song that plays on the Sirius Music Channels through DISH TV.  She takes this job seriously, even to the degree that she will sometimes ignore someone who enters her room and peer around them to be sure she records the title correctly.  However, DISH TV is expensive, and I've been thinking of discontinuing our service. So at the beginning of last week I pulled out Mom's old stereo/cd player, an unwieldy affair with large speakers and a cassette player.  I selected some easy listening and big band music from our extensive collection, loaded the player with three cd's, and pressed repeat.

When I returned a couple of hours later Mom was more animated than she had been for awhile. She has really enjoyed singing along with the familiar tunes, and it's amazing how many of the song titles she can name although they are instrumentals.This small change in Mom's environment has raised her contentment level. She had been calling for me an average of four times a day, and this past week it has only been once or twice each day.

I think  music can work magic for many dementia patients. If you can locate recordings of songs the person knew and loved in the past, you can provide them a wonderful cognitive stimulus that may have a positive effect on other areas of functioning as well.

My point in sharing this is not to let fear of upsetting your patient keep you from trying new things. You might be pleasantly surprised.

For many people, hymns offer a wonderful connection to past memories and present faith. There are ten devotions with accompanying hymn suggestions written especially for dementia patients here:

Wednesday, February 1, 2012

The Most Difficult Phase of Caregiving Thus Far

By far my most difficult phase of caregiving thus far has been the year long struggle that ensued between my mother and me immediately following her diagnosis with Alzheimer's disease in April of 2004.  

I have written about our relative easy caregiver/patient relationship in this blog, but perhaps I do not share that initial time of struggle often enough.  This difficult transition to the role of caregiver and patient is the subject of the devotions in my book, and I'm in a different place in my caregiving journey now. 

I want people who are coping with that transition to understand that your challenges are not unique.  Mom felt so angry and resentful toward me, and I was so hurt.  I was horrified by her cognitive decline and overwhelmed by terrible love for her along with intensive grief as I lost the mother who had once been my firmest supporter and confidante.  It was awful!

But it got better. 

I think I owe it to those who have come to look to this blog for help and encouragement to address these issues that face caregivers and patients as they make that difficult transition through changing relationship roles.  These stresses can literally tear families apart.  One family bought a copy of my book for each sibling and were helped as they each prayed through the readings together, literally staying on the same page. With this in mind I've decided to share some excerpts from my book here on the blog.  This comes with prayers for each of you in your caregiving journey.  

Excerpt from Chapter 1:
 We tend to view the past through the lens of the present. It is human nature to shake a fist toward God when our circumstances are painful; Jonah was angry enough to die when God provided the worm that robbed him of the shade of the vine. He was not grateful for the protection the vine had provided him while he sat in its shelter; he was only angry that he’d been deprived of its comfort. (See Jonah 4:1-3.)
Having lived and thrived in the shelter of my mother’s nurturing love, I prayed for grace to remember the ease that her work and sacrifice provided for me for so many years.
Caregiver’s Prayer
Lord, please guard my perceptions, my reactions, and my words. Please don’t allow the trials that my loved one’s age and illness cause in the present to rob me of the remembrance of the blessings of the past. Grant me the grace to view my loved one through your eyes. Amen.
 From My Mom Has Alzheimer's: Inspiration and Help for Caregivers, Chapter 1, Making the Transition pp 18-19