Caregiving Decisions

Note:  This post is aimed toward those who feel  convinced they need to take care of a loved one at home and are experiencing opposition from well meaning family and friends. Every caregiving situation differs. If your heart tells you that you can't care for your loved one at home, please understand that there is no disgrace in finding a suitable long term care solution, in fact, when a patient's needs have escalated, this becomes the kindest and safest solution for all. As one nursing home administrator told me, "We have a staff of 40 people. You are just one person. We can do a good job for your mom."  Mom is still at home with me, but at the point I can no longer meet her needs, she will be blessed by nursing home care. 

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 If you are prayerfully led to take care of someone whose suffering can be alleviated by your service, be cautious about how to proceed as you face criticism and complaints from those who fear there will not be enough of you to go around. It is difficult to face down naysayers, but God is our help, and we must realize that if we turn away from a Holy Spirit fueled desire to provide care for someone we love, heartache will result.

The Biblical book of Esther tells of a young woman who was called to serve her people in a difficult way. When she attained the position as queen according to God's plan to deliver His people, she balked at the danger fulfilling this call would bring to her. Her kinsman, Mordecai, was strict with her: "For if you keep silent at this time, relief and deliverance will rise for the Jews from another place, but you and your father's house will perish. And who knows whether you have not come to the kingdom for such a time as this?"  When God has placed a call on our lives to minister to those who are suffering, there will be fears to face and answers to provide to those who don't understand.

Yes, we need to take care of ourselves, we need to be prudent, and we should take into account the needs of other people who depend upon us. But we must not allow fears, our own or those of those who love us, to derail us from service that God has called us to fulfill. Our Lord is able to meet the needs of our loved ones either through us or in some other way. What is important is that we pray through to peace about every decision we make that impacts the lives of those who are no longer able to speak for themselves. 

These posts may help you if you are in the process of making caregiving decisions for a loved one: 

Caregiving Decisions: Pray Through to Peace

Making Decisions for Dementia Patients: A Christian Perspective

Right Where I'm Supposed to Be

Remember How She Loved You...and Still Does

Night falls so rapidly in December, and early too.

I know my mother doesn't like darkness staring at her from her bay window;  I don't like undrawn shades at night myself. But this evening it was 5:20 before I noticed that afternoon had faded to an early night.  Sunset in my area was at 5:04 p.m.

I decided to prepare supper for Mom before I went in to pull her shades. She's always happier if I am not empty-handed when I appear at her door, especially when it is near meal time.  If I thought about the darkened window at all--and I don't think I did--I would have concluded that the lit Christmas village on her window sill would keep Mom's attention from the undrawn blinds. Supper preparation took about 15 minutes.

And so by the time I entered Mom's room, she had probably been staring at the dark windows for thirty minutes or so. I don't know why she didn't call me as she usually does when she wants her shades drawn, and I don't know why that this evening it bothered her so much; sometimes she is absorbed in journaling or reading a book, oblivious to the window. But tonight she was angry, and I think she had drawn the conclusion that I'd left the shades undrawn in order to torture her; thus she fell to the mindset of a victim who wishes her torturer was gone from the face of the earth.  As I covered her feet with a warm blanket  and placed her supper plate on the lap desk before her, she let loose with a venomous string of hate-filled words that literally left me reeling. I did not at first connect her anger with the undrawn shades and was stunned. 

I'm blessed to have children who pray, and texted off a prayer request to each of them.  My son called and said, "You know, Mom, the other night when Dad came to help me with my remodeling project, I thought about how loved I am and how much you two have done for me out of that love.  And I thought how painful it would be if either of you got Alzheimer's and turned against me, and that helps me to pray for you more with Grandma. But I also know if that ever does happen that remembering how much you all love me now will help me to know that anything negative is just the disease."

How often we hear that, "It's just the disease." But tonight the truth hit home for me. Alzheimer patients believe their caregivers know everything. If they have pain, they think the caregiver knows. If a tooth hurts, or nausea strikes, or a darkened window frightens, a dementia patient believes the caregiver knows all about it and leaves the problem unaddressed. And they are prone to believe that this lack of action indicates that they are unloved. The hurt that flows from this sense of being uncared-for is probably the source of the most of the angry words and actions they exhibit that cause us as caregivers so much distress. It isn't their that their love for us has died, it is that their perceptions are inaccurate.

My children and I prayed together for Mom. Their love was such a blessed balm tonight. When I went in to see Mom awhile later she was happy and calm.  "You are just wonderful to me Sweetheart, thank you," she said.

Our tendency is to dismiss the positive because there has been negative, but that isn't love's way. My son reminded me tonight of something I really had forgotten: my mother loved me and supported me for the first 50 years of my life. That hasn't changed; the eleven subsequent years of our Alzheimer's journey can't undo those years of her love and service. Mom loved me, and loves me still. Anything negative is just the disease. 

Emergency Fudge

Sometimes I think those of us who considered ourselves good parents when we were raising our children make caregiving errors as we attempt to do a good job taking care of a loved one.  The rules for caregiving are somewhat different than the rules we imposed upon our kids for their own good, particularly if the patient is elderly.

My mom has no dietary restrictions, and she likes her desserts.  When she first came to live with us I rationed her sweets, substituting fresh fruit and things like carrot and celery sticks for the crackers and cookies Mom preferred.

What was I thinking? Was I concerned about long-range ill effects?  The woman is 91 years old and is suffering from a terminal disease! Though I do pay attention to her nutrition and make sure she receives balanced meals each day, Mom's happiness and the impact the food she receives has on her perception of well-being need to influence my decisions about the snack foods she is provided.

This is how I've come to have a stash of emergency fudge in the freezer. When Mom is in a dark mood, I bring her a generous piece of fudge and a cup of decaf.  This cheers her up Every. Single. Time! The only problem with this system is that my husband and I also like the fudge very much, and thus it is difficult to keep a dependable supply on hand.

We think my fudge recipe is delicious, and it is lower fat than most. I'm sharing it here as a gift to caregivers and patients everywhere. During the stressful holiday season, most of us could benefit from a having a stash of emergency fudge on hand.

Yummy Easy Fudge

12 oz package of semi-sweet chocolate chips (I use Ghirardelli brand in the gold package)

14 oz can of Eagle Brand Fat Free sweetened condensed milk

1/2 teaspoon vanilla

Handful or two of mini marshmallows

Melt the chips and sweetened condensed milk together in the microwave--about 1 minute on high.  Don't overheat--the chips will keep their form until stirred. Stir until smooth, add marshmallows and stir until they melt. May need a few more seconds in the microwave. Stir in vanilla. Pour into a buttered 8x8 dish. Wrap well in plastic wrap and refrigerate or freeze.  

Merry Christmas!

Caregiving Routines

 Each time Mom takes a downward turn, my first impulse is to say, "Ok, this is enough, I can't handle it any longer." But I've found if I'll give any new difficulty just a bit of time and prayer, things tend to reconcile.

The most recent caregiving challenge for me has been the necessity of administering a daily sponge bath to my mom. Both Mom and I resisted this transition! You'd think after 11 years as a caregiver, I would know that exhorting Mom to do a better job wasn't going to help, but I nevertheless tried this ineffective strategy for several weeks before it became apparent even to me that she had lost the ability and initiative to bathe independently. And then we had to get past Mom's resistance and resentment. That was the biggest hurdle for us, and was surmounted by my friendly but relentless insistence that bathing had been ordered for her by her doctor (I'm sure he would have ordered it if I'd asked him to...) and just had to be done (tinge of regret and empathy, firmness in my voice). For a couple of months she resisted my help but over time she adapted to my assisting her in this way. Things are much easier now, just a normal, not-too-time-consuming part of each day. 

Every caregiving transition has been characterized by these steps:

1)  Denial--I deny that Mom has lost ground and try ineffective strategies--or stick my head in the sand and pretend nothing is wrong (if I ignore the problem maybe it will go away).
2) Resistance--I resist having to do more caregiving work, and Mom resists my intrusion into areas that have previously been fully under her control.
3) Upset--characterized by a fairly tumultuous transition phase during which even calm and kind firmness on my part may be met with anger and resistance on Mom's part.  During this phase I know it is ineffective to lose my temper, but I generally lose my temper anyhow. I also know it is fruitless to allow my my feelings to be hurt by the spiteful resentment of a dementia patient, but I generally get my feelings hurt anyhow. 
4) Resolution--Mom and I both adapt. Dementia patients can learn new behaviors, but it takes many repetitions and gentle insistence on the part of the caregiver to establish effective new routines. These routines will eventually provide the security of familiarity for the care recipient.   

Some situations are intolerable and should not be endured over time. I would never recommend that a caregiver submit to violence or constant verbal abuse in the hope that the situation will somehow improve.  But I do want to encourage caregivers, myself included, to always give a new challenge a little bit of time before giving up. When needed changes require the cooperation of a dementia patient, we must allow some time for those changes to occur.

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Related posts: 

Caregiving Strategies Following a Downward Turn

Helpful Products for a Hard Time

Bath Day