Honoring a Journey of Dementia: Sharing Insights and Hope

Not long ago, a friend of ours confided in us that his mother was facing dementia. Our friend is a very private person. We recognized the trust he placed in us, took it as an honor, and said we would include his mother and family in our prayers.

Recently, his mother passed away.  Our friend sent us a letter his sister, Laura K, had written and shared at their mother’s memorial service. It was full of honesty and hope, and he invited us to share her story and insights. By sharing this story, we hope to honor not only one family’s journey but the countless others who walk similar paths. As the saying goes, “If you’ve met one person with dementia, you’ve met one person with dementia”. However, there are common threads that run through everyone’s experience.

Family Memorial letter

Dear Family —                                                                                                                      

I have had the honor and responsibility to act as Mom’s Healthcare Power of Attorney these past 2 years. The job certainly stressed me out at times, but it has also been rewarding.  Being the HCPOA has given me a front row seat to all the comings and goings and events in her life over the last couple of years.  

Because of her dementia, she often said or did some perplexing things.  Thinking she had not eaten dinner yet when she really had, thinking it was breakfast time when it was time to go to bed, thinking she had all the abilities she used to possess, and wanting to be independent when in fact she was very dependent on others.

A new reality

One kind of fun thing about dementia is that everything is new and fresh.  “Oh, I have never seen this before!” or “I didn’t know you were coming!”  I did learn that it is best not to argue with a person with dementia, but when their reality does not match my reality, it can be difficult to bridge the gap.  Because she seemed to live in her own reality, it caused the spiritual question to come up, “What will God do with a person who no longer really realizes that He exists?”  (One of my kids asked me this after one of our visits with her.)

I am here to tell you that even though Mom lived in a different reality at the end of her life, even though her brain did not give her accurate information, even though she was wrong in so many ways, God was faithful to her to the end.  I can see that God really provided for Mom through to her last day on earth, and I wanted to share this part of her story with you.

Eventual decline

Everyone who was with Mom could see that she was mentally declining over this past summer.  Her confusion and frustration were increasing.  She had a couple of falls in June.  Then at the end of July, she fell hard and complained of severe back pain.  She was checked out at the ER who did not find anything wrong, but it only took a few days for it to become apparent that something was indeed wrong.  She no longer wanted to get out of bed.  

In fact, she wasn’t interested in eating because she didn’t want to sit up or get up.  If she did try to sit up, her pain was intense.  I was actually in Taiwan when she fell, but it was the end of our trip, so I was able to get home and visit the next Sunday after her fall.  We had a very pleasant visit as long as she was still and lying down.  Movement was very hard.

Finding the issue

When I returned home and told my husband, Phil, who’s a doctor, what was going on, he said that we needed to rule out a spinal fracture.  Because movement was so hard, I didn’t know how we would be able to get that imaging to check.  But she fell again the next day, and returned to the ER.  The doctors did find the fracture at that time.  

Finding the fracture allowed for better care, as it was clear that something was wrong rather than mom just being difficult.  Mom was hospitalized, and the hope was that she could then do physical therapy to rehab and get better after that fracture.  But with her dementia, she could not remember that she even had a fracture, so she could not understand why she was being asked to wear an uncomfortable back brace or do strange exercises.

Physical Therapy

Mom failed physical therapy.  The only thing after that was to enter the care of a hospice group.  The group I chose was Hearth Hospice, and when they heard that I felt Mom needed a higher level of care than what she had been receiving, they recommended Guiding Grace Personal Care Home.  There, she was in a home environment with caregivers who loved the Lord.  Worship music and/or preaching were always playing in the background.  It was an environment that fit who Mom was very well.  I do believe on some level she thought she had returned home.  

Hospice

Up until the end, she was a very busy woman inside her head.  She would sleep most of the day, but when she woke up, she talked about needing to get the kids to school, or go grocery shopping, or fill out papers.  She had a lot to do.  And on her last day, I arrived in time to spend the last 45 minutes of her life with her.  What with how quickly her condition changed and the 2.5-hour drive I had to take to get there, God was the one who got me there in time.

Watching God provide

The point of my telling you all this is so that you can see, like I did, how God provided for Mom up until the very end.  There are even more details that He had to arrange, to make our mom’s last days as comfortable and peaceful as possible, than what I have outlined here.  But the fact that timing worked out with my Taiwan trip so that she didn’t really need me until I got back, that second trip to the ER, talking to the right people to connect us to the home where Mom could rest and die peacefully, all of these things were led by God to provide for Mom in the ways that she needed.  Was Mom praying for provision?  Was her reality the “truth”?  No.  Provision, like salvation, is a gift from God.  “While we were still sinners, God saved us.” (Rom 5:8) “He saved us, not on the basis of deeds which we have done in righteousness, but according to His mercy…” (Titus 3:5)

Be your loved-one’s advocate

Another important thing I learned through my experience with Mom over the last couple of years is how important it is to have an advocate.  An advocate is someone who comes alongside, supports, defends, and explains.  Things do not always appear as they really are.  The truth is not always readily apparent.  Sometimes you might look at a situation and think certain things about it.  If you are an ER doctor and your patient, who cannot move without help, tells you that she fell while cutting trees, you might not take her too seriously when she tells you that her back hurts.  Especially if one of the med techs says, “Oh, yeah, she has chronic back pain.”  

I was her advocate when I called the hospital to ask that they do a CT of the spine to check for a fracture.  I had to explain that, yes, she did have chronic back pain, but this pain was different from before.  Before, she could still walk with her walker and get around independently.  Now she cannot sit or stand without yelling out in pain.

Be persistent

Once we had the correct diagnosis, we were able to give Mom the appropriate treatment.  There were many other times when I spoke on Mom’s behalf to ask for the things she needed.  Without an advocate, Mom would not have gotten the care that she needed, and her suffering and frustration would have been much greater.  It is important to advocate for others when the opportunities arise.  

My advocacy was not perfect.  I had the limitation of distance and the limitation of my own knowledge.  But I am thankful that we have a perfect advocate in Jesus.  I John 2:1 says, “I am writing these things to you so that you may not sin.  And if anyone sins, we have an Advocate with the Father.” I do not have to be right or good to have an advocate.  Actually, advocacy works best when there is some level of helplessness in the person who is being advocated for.  So if I am feeling broken, defeated, tired, or done, it is actually an okay place to be.  I can rest knowing that God will provide and advocate for me in whatever state I find myself in.

Encouragement

I hope you can find encouragement through God’s work in Mom’s life over her last few weeks.  God is faithful.  “Worthy are You, our Lord and our God, to receive glory and honor and power; for You created all things, and because of Your will they existed, and were created.”  (Rev 4:11)

I love you all, Laura K

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May the memory of our friend’s mother be a blessing, and may her story light the way for others who find themselves navigating the uncertain landscape of dementia, guided always by compassion, resilience, and hope.

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Has your world been touched by dementia?

My book, “Finishing Well: Finding the Joy in Dementia“, is a collection of stories and tips about doing life with my Mama.  May it encourage and inspire you to find joy on your own, unique journey.