Tuesday, June 26, 2012

God Always Has a Plan

 Recently I was chatting with my daughter-in-law, Nicole, and she shared some difficult circumstances she has encountered in life. Not only did she feel ostracized as the result of multiple allergies that caused her to be unable to participate in most school celebrations, she was a farm girl who attended high school classes in a wealthy school district. Despite these things this energetic and hard working young woman became president of nearly every organization she joined, made cheerleader, and earned several scholarships as she headed off to college. She is now ready to begin her second year of vet school.

As she talked I was interceding on her behalf but also praising God for her, because she is a strong Christian.  I am so grateful for Nicole's presence not only in my son's life, but in my own; and as I prayed I felt a familiar nudge in my heart. It was as though the Lord was saying, See?  Nicole learned how to be different, and although her heart was hurt along the way I have healed those hurts. What remains is her understanding of how to be in the world but not of it.   

I said as much to Nicole. "The Lord used everything that has happened to you for your blessing," I said. "As Christians we must accept  we can never belong to the worldly club. Some people really get hung up on this and can't take that feeling of not belonging.  But this is a skill the Lord taught you early on."  

When you can't trace His hand, trust His heart...; these are lyrics from a wonderful song by Babbie Mason. I've learned that the Lord always has a plan, and that it is wise to  give Him the benefit of the doubt when things look bleak. My guesses as to what He might be doing are often inaccurate, I'm sure; but one thing is certain:  if I don't open my eyes to look expectantly for the good that the Lord can deliver, I won't see the blessings He is able to bring even out of the darkest of circumstances.

For example:  I am now able to sincerely praise God for the time I've cared for Mom in our home. It took awhile--I couldn't see blessings at first--but now I could fill a page listing the wonderful things that have happened, not the least of which is that Mom and I have had time to lay aside old resentments. I never would have guessed that eight years into her Alzheimer's diagnosis Mom would still be here telling me on an almost daily basis that I am a wonderful blessing in her life. Who would have anticipated that?  Well, the Lord did, obviously! 

That song I mentioned by Babbie Mason says it all. You can find it on Youtube here.

God always has a plan, and we can trust it is a good plan that will work out for our good and His glory. 

Scripture: "And we know that in all things God works for the good of those who love him, who have been called according to his purpose" (Romans 8:28).   

"...for I know that through your prayers and the help given by the Spirit of Jesus Christ, what has happened to me will turn out for my deliverance" (Philippians 1:19). 

Saturday, June 23, 2012

Blaming the Victim

It is human nature to attempt to separate ourselves from the misfortunes that befall others.

Car accidents (she wasn't careful enough), illnesses (he didn't exercise), identity theft (she shouldn't have shopped online); whatever the difficulty it is instinctive to attempt to distance ourselves to a place of safety by casting some sort of blame on the victim. We want to maintain an illusion of control over our lives.

 I've come to recognize that all too often my way of separating myself from Mom's Alzheimer's disease comes perilously close to casting judgment. And you know what the Lord says about judging others:  Don't do it! 

Yesterday my mother punched a hole right through my judgmental thoughts with a heart-rending entry in her journal. She had called me nine times during the afternoon for trivialities, and when the ninth call came (she asked me to fetch a diet coke for her from the refrigerator ten paces behind her chair) I am ashamed to admit that I lost my temper. I tried valiantly to explain to her that she was well-cared for, that she didn't have to phone for things that she was able to do for herself, and that she needed to stop thinking she was living in a luxury resort and acting like she didn't think the service was up to par. 

Mom just looked at me as I vented and when I was done said, "Well, my dear, I do hope you feel better."  I left the room and I am sorry to say I slammed the door.  But here is what Mom wrote in her journal:
The problem must be my Alzheimer's--Lord, is there a way for me to understand...to know and do what is proper? It is frustrating to know my reasoning is not as it should be. Lord is there some way I can know how to speak and treat others?  Lord please guide me to be right in your eyes. 
Well, this made me cry.  However, when I rebound away from a judgmental frame of mind, I am in danger of suffering such an anguish of compassion for the difficulties my mother faces that I'm left just wanting to indulge escapism to avoid the heartache.

One of the readings in my book addresses this issue:
I felt as though I was walking a narrow beam labeled Godly and Loving Caregiving Behaviors, and was constantly in danger of falling off. On one side was the hazard of hardening my heart to my mother’s situation so that I didn’t have to feel grief over her or fear for my own future. When I fell off on this side of the beam, I became callous and tended to blame Mom for having become infirm. On the other side was overwhelming pathos and grief over the so-called tragedy of Alzheimer’s. When I erred to this side I felt anguish of spirit, terrible pity for my mother, grief over losing her, guilt, and a hopelessness that was not of the Lord...this was an unholy grief that blinded me to the fact that God was in control and had provided richly for us.
Oh I remember the grief of those difficult early days of caregiving. When I cried out to the Lord over this issue this is the answer that came:
The sensations of hopelessness felt by a Christian are quickly laid to rest when we look at our Savior’s face. Our hearts do not become hard, and we do not fear the grief of dying and death because we know we don’t have to bear grievous events alone. Our grief is temporary, but oh the tragedy of hopelessness suffered by those who do not know Christ, or who have refused Him. Now, for just a little while, the Christian may endure suffering and grief, but we look forward to a future free from sorrow and pain. Despair is not the portion of those who hope in Christ.
I don't need to drown myself in pity for Mom; God has provided richly for her as he has for me.  I do need to guard my heart and my words, and to realign myself with the Lord daily.  

An interesting postscript; Mom has not called me one time for a trivial request since she prayed that prayer above.  Since she blessedly has no memory of my remonstrances I can only assume that for this time the Lord is helping her to understand and to do what is proper--just as she requested.

Sunday, June 17, 2012

Avoiding Unpleasantness

This summer I have worked out an exchange with a friend whose son needed tutoring in reading. I spend 35 minutes a day teaching her son to read, and she spends that time with my mom. It is a lovely arrangement; Mom receives focused one-on-one time from a caring and kind visitor while my friend's son receives the help he needs to begin the next school year reading at the same level as his peers.

This arrangement has been a blessing and I would urge other caregivers to find similar ways to exchange work assignments. The change itself is refreshing; I'm so happy to be using my teaching skills again and to have a bit of respite from caregiving. 

However, I'm sure you know that most Alzheimer silver linings contain a cloud or two!

The difficulty that has emerged with Mom's daily time with my friend is it elicits a "That was really nice I want more" response in Mom.  Although I am in her room a minimum of seven times a day and often take time to sit down face to face and spend a few minutes chatting with her, she feels a new discontent. It's as though this time with my friend has ruffled her emotional feathers and she lacks the ability to put them back into place on her own.

So she calls. A lot.  She wants "...to hear a human voice...a diet coke...some crackers...to talk awhile...to come in and watch you work...some company..."  In short, although she has no memory that my friend has been to see her, the interaction has somehow roused discontent and she wants more attention!  If I do not respond instantly to her or, Heaven forbid, miss her phonecall, she writes things like this in her journal:  "Called Linda just to talk--was told she was just in here a while ago. Courtesy to the elderly not required. Call no one for anything. Not even if dying. No one can be bothered to reach out to the elderly."

This just makes. me. want. to. SCREAM!  Facts and logic make no difference at all to an Alzheimer patient; lacking memory, Mom's emotions provide the most reliable source of information that she has. If she feels discontent she assumes there is some viable reason for her emotions.  Thus, as her caregiver, it is important that I recognize I am responsible for her emotional well being as well as for her physical comfort.


But, with the Lord's help, and if I can keep myself from reacting as an offended daughter rather than responding as a concerned caregiver; this isn't too difficult for me.  I am learning to ask "What would make Mom happy?"

Oddly, quality time is rarely the answer regardless of the fact that Mom thinks this is what she wants.  When I attempt to spend some extra time with her when she is feeling unhappy, she can't be sweet talked out of her bad feelings.  She will stare at me accusingly and say things like this: "Linda, do you think the elderly deserve good treatment?"  Now let me promise you, there is no right answer to this question. If I answer in the affirmative, as I recently did, she replies, "Well then why don't you think I am getting that kind of treatment?" 

I've learned that what invariably makes Mom happy are gifts--preferably food gifts--but a pretty flower, a new c.d., or any lovely object that I can set on her chairside table work well too.  This afternoon (after the "don't call even if dying" post) I felt a gift of the highest caliber was called for and, since it was her snack time, presented Mom with a fudgy chocolate cupcake and a cup of coffee. Worked like a charm.

Soooo....here's a summary of this rambling post.  1)  Don't shoulder the entire burden of caregiving yourself. Work out an exchange with friends or family so that you and your care recipient both receive a refreshing change of scenery and/or company.  2)  Respond to your care recipient's unhappiness from the perspective of a loving caregiver rather than according to the rules of past relationship roles. 3)  Recognize that although changes of scenery and company may cause emotional upset, the cognitive stimulation such things provide help maintain a higher level of functioning. 4) Find out what makes your care recipient happy and blatantly utilize this strategy to avoid unpleasantness!

Friday, June 8, 2012

Apathy in Dementia Patients

I've been working on finishing my new book (don't be too impressed, I have no publisher) and have neglected this caregiving blog of late. Since caregivers are the people closest to my heart outside my own family members, this makes me feel guilty! Below you'll find a reprint of a post from a year or so ago entitled "Apathy in Dementia Patients," and I pray this is helpful. I know that my mother's lack of empathy for my struggles has caused me  heartache, and  understanding that the characteristic apathy of dementia is to blame has helped me to cope. 

On Easter morning, 2004, I slid into my customary pew at church with several minutes to spare before services were scheduled to begin.  I noticed that my mother’s space at the end of the row was empty, and felt a glimmer of worry. She was a stickler for punctuality and never missed church.  She taught me always to arrive early, especially for holiday services.

I excused myself and called Mom.  “Oh, I just decided to stay home today,” she said. When I reacted with shock, she complied with my wishes and came to church, arriving twenty minutes late.  This incident was one of many that let me know something was wrong with my mom. 

Apathy is a common side effect of dementia, and is sometimes the first symptom noted.  Dementia patients may display indifference regarding schedules in combination with an apparent lack of emotion toward concerned loved ones who object to their behaviors.  Symptoms of apathy probably cause more conflict between caregivers and patients than any other early warning sign of dementia. A caregiver may have an intellectual understanding that the care recipient should not be held accountable for disease related responses, but it is difficult to transfer that “in the head” understanding to the heart.  The tendency is to react to the loved one based on the relationship that existed before dementia occurred rather than to respond from a caregiver’s perspective.

Apathy may be a result of the physical damage that occurs as the characteristic plaques and tangles of Alzheimer’s disease wreak havoc in the brain, but there is a psychological and emotional basis as well.  Forgetfulness and confusion cause dementia patients to lose confidence in the ability to successfully perform everyday tasks.  Repeated failures can result in a reluctance to make the effort to try.  People who suffer dementia often ask others to carry out tasks they are still physically able to complete, a behavior that in the general population might be labeled lazy or self-centered.  However, for the dementia patient, requesting help is actually a viable coping mechanism that helps to compensate for failing memory. 

When I respond to my mother’s requests with irritation, I take from her the dignity of retaining a measure of control over her environment.   She has learned a new way to get what she needs—she asks! 

It is only in recent years that Alzheimer’s disease has been widely recognized and diagnosed.  There are doubtless a number of readers who remember a parent or grandparent becoming stubborn or demanding, and only in retrospect have understood that Grandpa’s “hardening of the arteries” and Grandma’s stubborn streak were dementia related.   It is my hope that our current, more accurate understanding of the physical basis for the behavioral changes of dementia will ease the sad memories some of us have of the puzzling or hurtful behaviors a loved one exhibited toward the end of life. When my own mother goes home to be with the Lord, I pray to remember her as the vital and loving person she was before dementia robbed her of the ability to think clearly and respond appropriately.