My husband Randy goes to a wonderful Adult Day Care facility 5 days a week, 9 hours a day. And he loves it. But I also work Saturdays and the Day Care is closed on weekends. So I leave him in the care of precious friends and family that watch him in 4 hour intervals. I was recently asked to update Randy's care instructions for the volunteer group. I am posting them on here too, so I will remember this particular stage in Randy's frontotemporal dementia (Pick's disease).
Thank you so much for caring for Randy. Your time with Randy ministers to me deeply. It’s overwhelming to think you would take time out of your busy Saturday to love and care for my husband. Know that I am always praying it is a special time for you too.
I want to give you a few insights into Randy as you care for him on Saturdays.
He is still so nice and kind and easy to care for. That may not always be the case as the disease progresses. But God continually reminds me that Randy asked Christ into his heart, not his brain… and that no matter what is happening to his brain, it will not destroy the true essence of Christ in Randy. Can’t tell you what a comfort that has been to me as his dementia progresses.
He will immediately ask you to take him to QT for a Coke. He has a gift card that I keep loaded, that enables him to go into QT by himself. (unless he forgets his wallet) I would prefer one Coke per shift.
He will ask you to take him to Home Depot, AZ Mills Mall, the Art District, the Rim, Disneyland, etc. He is totally ok when you redirect to other things if you prefer not to do those things… such as, taking Koda for a walk, a hike @ South Mountain, walk around Tempe Town Lake or Kiwanis Park, watching a movie or Channel 21, etc.
Do not take him to the Art District anymore. Not the appropriate place for him.
He loves talking about the Bible, CS Lewis books, Disneyland, Ronald Reagan, the galaxy, the SR71 and memories you shared together. Ask him about the book he wrote on his 30+ years ministering in concert throughout the country. He loves to share about his years on the road and the life-lessons he learned along the way.
He will go in his room off and on throughout the day to read his Bible and that’s ok. Feel free to hook up to our WIFI if you choose to do so.
His memory is quite amazing. He will recall things that we have all long since forgotten. Don’t hesitate reminiscing about memories from the past. He will surprise you with the details he remembers.
Put a movie on rather than giving him the remote, otherwise he will flip through stations and drive you crazy. :)
Be ready in case he wants to take Koda for a walk. It will be a short walk. He will want to show you the Dodge Challenger parked in our neighborhood. Remind him that he is not to trespass on their property in order to get closer to the car.
The summer heat is coming, so do not take Koda for a walk till the sun is down, or the concrete will burn her paw pads. Randy will need to be reminded of that.
Keep the front gate and laundry room door locked, in case he goes outside quickly and without you knowing.
You are welcome to take him for lunch or dinner, but I would prefer it was fast food, cuz trust me, he will eat fast or take a few bites and want to leave, and you will have to take your meal home to finish. He will stay longer if you distract him with questions or stories. A burger, chicken sandwich or a sub at Burger King, Wendy's or Subway will suffice. No fries, as he will not eat them. He loves an occasional Blizzard at DQ.
He scopes out a bathroom wherever you take him. Be aware of that, as he may disappear quickly, because he sees a bathroom and will want to go.
Do not feel like you need to entertain him. He will mention a lot of things, but will want to leave soon after you get there. He is content to go for a walk or drive. Do not feel you need to have a destination where you get out of the car. Remind him that Linda is coming home soon, so we need to head back to the house.
He has no sense of time. Although he will want to go outside and wait for me around 8pm, knowing I will be coming around the corner at 8:20. I put a couple chairs out front, so you don’t have to stand till I arrive home.
He’s becoming more restless and fidgety in the evening. He loves the old Billy Graham Crusades in Channel 21. That seems to help.
I do ask that after your time with Randy, that you take a few minutes to either text or email me with any insights, concerns or observations. It’s important that I get your take on his behavior as the disease progresses.
Do not hesitate to call me or my daughter Miranda (if I can’t get back to you right away) with any questions during your time with Randy.
A simple thank you just doesn’t cut it. Wish I were more eloquent in conveying my heartfelt gratitude. Know that your prayers and acts of service have changed me and my walk with Christ and my dependency on Him. God bless you!
GOD is so Good and Faithful.
Love you all dearly,
Linda
6 comments:
You are all amazing people.
Linda, I bet that at times it is frustrating and tiring to feel like you have to rely on other people to help you so much. I felt that way last year when my husband was deployed. But never forget that you are giving them the opportunity to give Christlike service and love, and they will be richly blessed for offering it to you and to Randy!
I love that you have friends and relatives to help. Caregiving is SO HARD! I'm thankful they are sharing in the ministry of caring for this wonderful man of God.
What wonderful friends and family God has placed in your life. I pray that God richly blesses all of you in your beautiful service to one of his own. It's good to hear from you from time to time. You pop into my mind quite frequently and I always stop and say a prayer for you, Randy and your family. Know that lots of people care. Don't forget to take care of yourself.
I have been following your newest journey but I have not yet commented as I did not know what to say to you. I always admired your home, your family, your marriage, your camping trips in your camper - you had the golden life. Your life is so different now, but I can see that you have embraced it and you are still living a golden life with your Randy. While I am sad for you and for Randy, I see that you have a wonderful support group in your life to help you. I think about you and Randy a lot even though I don't truly know you. I am praying for you both. Love from Arkansas.
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