Shortly after my last post on Friday, the 24th, something went haywire with the text. You may have missed it, or shared it, and so, now that it appears the problem is fixed, I'm reposting. The thing is, I had no other copy of it so I rewrote it. Since I am a bear of "very little brain" I'm sure this new rewritten post is slightly different than the first. Please don't feel the need to reread it, but I just wanted you to know. I've deleted the messed up post and this will replace it. I've saved the comments at the end of this post, and you may leave new ones if you wish at the end.
This begins the 8th year of Gary's Alzheimer's Dementia. ONE PHRASE and ONE PHOTO from each year were selected to describe the progress as time marches along. For those who have asked recently how Gary is, this will get you up to speed. Please don't be sad about this. Illness and decay are part of the human condition and there is much to be gained by facing reality head-on. My comments on our journey are at the end.
As we held our most recent grandchild at the time, we had no idea what was ahead.
Gary and I both noticed little lapses in his short-term memory and slight confusion were gradually increasing. Even with missed appointments, slowed thinking and getting mixed up about things he should have known, it never occurred to us that there was something physical going on. We blamed it on his heavy workload. His face was less expressive as the year wore on.
“I’m loosin’ it, Laurie!” he’d say.
We began seeing doctors late in 2006 and after what seemed like an eternity of testing, Gary received the diagnosis, “You have an Alzheimer’s type dementia.” This was a scary time for both of us, but getting an answer was a relief of sorts and we spent much time in prayer together. In July, we closed our business, and Gary stopped driving. He bore it well.
He prayed, "Help us be responsible, and draw favorable attention to what You're doing here."
With Gary not working we were able to make lots of memories. We took day trips around town, Huntington Gardens, a trip to Florida to see our daughter’s family, and we even watched a missile launch at Vandenberg. We couldn’t be on the go every day of course, but Gary seemed to enjoy the activity. It gave him a sense of getting up and getting ready to work. He couldn’t stay alone anymore for his safety’s sake.
During these months, he would occasionally forget who I was. He thought I had a “twin sister” or something. He kept a letter in his wallet that he wrote to himself, at the suggestion of, our pastor, Rick. In it, he had stated who he was, who I was, and our family members. (Someday, maybe I will write a post about this precious letter.) He would read it, when feeling unsure. It gave him his bearings and comfort.
It became obvious that we needed to make a change in our living situation. Our home, yard and koi pond were too much for me to manage, since Gary was now incapable of maintaining them. Many friends and family members helped us get our home of 34 years ready to sell. Gary enjoyed seeing familiar faces and watching the projects going on around our house.
We sold Gary’s truck and ski boat and started having garage sales and selling Electrical inventory and tools. He knew the truck was sold, but then forget, and get concerned when he couldn’t find it in the driveway and when he saw a white work truck, on the freeway, he’d say “I think I saw my truck.” He really, really missed his truck.
Leaving the Familiar
In June we drove away from the home we lived in our entire marriage. Packing and moving day went really well, and Gary rode in the U-Haul with our son-in-law. It was a fairly easy transition for him. He never asked about going back to our old home but one time he said he missed the fish pond.
We settled in to our new condo. It would be easier for me, and safer for Gary. He enjoyed the many walks around the neighborhood, stopping to pick up a twig or pull a weed in someone’s garden. We took more day trips and Gary ran errands with me enjoying the car rides. The change was stimulating for both of us, and yet Gary had some physical declines immediately after the move that never improved. He wandered off 2 times but both were within my sight and easily resolved.
Our church began an Alzheimer’s support ministry in the fall which we have been part of ever since.
As Gary’s world was needing to become simpler, my functionality was being challenged. The activity of busy grocery stores was becoming too much for him to handle. In Trader Joe’s he once said, “This is hard for me.” Neither could he safely stay alone, or sit in the car, or wait while I tried on clothes or went to the dentist. So for several hours a week, I engaged a care giver and/or he went to the Adult Day Health Care Center. This was all harder for me than him because I hated letting go, especially of his personal care. But Gary was cooperative and made another adjustment.
We went to Florida to visit our family, where he enjoyed watching the grandchildren, but it was difficult in the airports and boarding planes.
I began writing a blog about our life with Alzheimer’s.
Remembering & Living
This year brought the end of the Adult Day Health Care. Gary needed too much help for the staff to provide, so we increased the home care. Gary’s occasional lack of balance resulted in a couple of tumbles and needed support when walking. We worked hard to retain the memories, by making memory books for him and playing family movies. Visits from old friends were met with a smile of recognition and sometimes a handshake. There were many outings this year with Gary’s wonderful new caregivers. He went to the mall, the lake, Vasquez Rocks, and the billiards room. By the end of the year a wheel chair was brought along in case he got too weak, or too imbalanced to walk.
In the fall, we signed Gary up for Hospice and he has been receiving those benefits ever since. He has to be recertified every 2 months.
Gary’s physical problems increased to the point where I needed MUCH help moving him around the house and helping him walk. We had a live-in caregiver for the first half of the year, and made many adaptations to our home to make things easier for both of us.
There were a couple of outings in the Spring, but most of the year was spent at home. Gary became excessively sleepy spending most of the day in bed or a recliner. Meals took 45 minutes due falling asleep during the meal. Gary needed two people to help him go on a walk.
I did more and more things without him. Family birthdays, church, etc., are too taxing for his tired body and mind. I don’t think I will ever get used to going to things alone while he is home with a caregiver.
I don’t know what this year will be like. Right now, Gary only opens his eyes for a few minutes at a time and only a total of 30 minutes a day (on a good day). He sleeps about 22 hours, only waking up (but eyes shut) to eat, and be walked to the shower, recliner or back to bed. He is gentle and peaceful. He rarely speaks. Maybe twice a month, he’ll say a word or two. They are ALWAYS pleasant words. “Yeah.” “U-huh.” “I will.” “Hi.”
I may not know when he is hurting or what he needs, but we try to treat him the way we would want to be treated and entrust his care and comfort to the Lord.
8 years is a long time.
Will there be a 9th, 10th, 11th? I don’t know.
Remember Gary’s prayer? He asked God to
"Help us be responsible, and draw favorable attention to what You're doing here."
That is our goal. You can’t miss the many good things that have happened because of these I difficult years. Strengthened relationships, God’s love, kindness and care on display, joyful moments, and a greater longing for Heaven to name a few. There’s a purpose for every day of those 8 years. BUT, the days are wearying at times and mingled in are moments of crying out to God and asking Him “How much longer?”
Thousands of years ago, Kind David asked the same questions that those in a trial (and their observers) ask. While he suffered, he turned to God for the answers. He focused on who God is, and by trusting in God’s salvation, loving kindness and bountiful care he found joy. Here is his song:
"How long, O Lord? Will You forget me forever?
How long will You hide Your face from me?
How long shall I take counsel in my soul,
Having sorrow in my heart all the day?
How long will my enemy be exalted over me?
Consider and answer me, O Lord my God;
Enlighten my eyes, or I will sleep the sleep of death,
And my enemy will say, “I have overcome him,”
And my adversaries will rejoice when I am shaken.
But I have trusted in Your loving kindness;
My heart shall rejoice in Your salvation.
I will sing to the Lord,
Because He has dealt bountifully with me." Psalm 13
I have been there…asking “How long, O Lord?” and thankfully, the Lord has strengthened my faith every time. He reminds me of how he has watched over us, with love and kindness during these years. A couple of books I’ve enjoyed are: “How Long, O Lord” by D.A.Carson, and “Treasury of David” by Charles Spurgeon (Chapter XIII)
If I can encourage you in any way, send a private message to me via the CONTACT tab at the top or leave a comment on this blog.
I PASTED THE COMMENTS FROM THE MESSED UP POST RIGHT HERE (you can leave new comments at the end...
Jerri Whitten DiPrima:
Lori, it is amazing and obvious that God has chosen you and Gary to get help started in our church home for others walking this most difficult walk. I would love to have had help like this for my Mom and Dad. No one understands how much this disease affects not only the immediate family but old friends work cohorts, and others unless they know someone who has had to walk through it. I know you have been chosen because of your faith and strength and obedience to our Father but it is a heavy cross to bear... Gary's prayer is being answered and God is indeed faithful. Thank you.
Thank you Jerri. I just got back from our monthly ministry meeting. One of the things we talked about was the idea, from 2 Corinthians 4 that "this momentary LIGHT affliction is producing and eternal WEIGHT of glory" It was so encouraging.
I think as the baby boomers age, that this ministry will be all the more useful with so many folks coming down with Alzheimer's.
As believers, God's ways are mysterious but good. He glorifies Himself and comforts at the same time! Thank you, Laurie, for sharing God's steadfast love and constant faithfulness. Knowing that He didn't spare his own Son from suffering, we can expect it. I'm grateful that His word has sustained and strengthened you both! Mick and I love you both and pray for you both. May 2014 be the year our Lord returns and brings [all] his sons [children] to glory. Loving Him along with you because He first loved us! Thank you for pointing us to Christ...even in suffering.
Gary would LOVE for 2014 to be the year Jesus returns! Meanwhile, we pray for endurance and joy. Thank you for your sweet friendship and prayers.
Thanks for this encouraging summary of your journey as a couple, Laurie! We are praying for you all.
Love you too my dear! Say hi to the fam.
I've been blessed to look back at your 8 years. My heart is amazed at the grace God has given you to care for your husband Laurie. Your commitment to him encourages me so much! God bless you... I mean REALLY bless you Laurie!
I DO feel blessed. Thank you. I'm constantly amazed at all God has done. I'm sure you could share a zillion things too, from your own journey.
Hope we get to meet one day.
Thank you for writing this. Your life is always an encouragement. =)
Thanks Lukas. God is faithful.
I'm encouraged by your steadfast faith in the Lord Jesus, Laurie. We are praying God would bless you with more confidence in Him. Have you ever read a book called Spectacular Sins? It's by John Piper and it's free as a .pdf from their website.
Thank you for your prayers. I'm assuming that "Spectacular Sins" refers to the curses on this earth, which include sickness and death, which are used by God, for our good, and to display His glory. Not to good with the roots, but guessing... "spectacle, or inspect, to see"?? Just wondering. Will have to check it out, because I like to read Piper. Thanks for the recommend.