dementia: what works for us

My husband was diagnosed with frontotemporal dementia in 2014. But my concerns began as far back as 2010. I wrote this list a year ago, just before I placed him in a memory care facility on July 19, 2018... so that I would not forget the details of these past several years.

I keep music playing on his iPod in his bedroom.

I sing songs where he has to finish the last word from each line.

"You are my (husband), my only (husband), you make me (happy) when skies are (gray)
You'll never know (just) how much I love (you), please don't take my husband (away)"

"Sing a song of sixpence, a pocket full of (rye)
Four a 20 black birds baked in a (pie), etc."

I encourage him to read billboard signs as we drive to and from his adult day care.

We slow dance to worship music so I can feel him holding me close.

I remind him often that he shared the gospel at his concerts, leading many to pray and accept Jesus as their Savior. He will reply "I did that!"

Because he parrots everything I say, I will tell Him that Jesus died for our sins, and we will spend eternity with God. Invariably he will repeat over and over "Jesus died on a cross for our sins!" The Truth of God's Word is so hidden in his heart that it just spills out, even though his brain is dying.

I leave two cinnamon graham cracker squares on the counter every night, so when he gets up he's more apt to go back to his bedroom if he's had a bite to eat.

Duct tape is a lifesaver. Because our van does not have child safety locks at all, and he opens the door while I drive, I duct tape the door handle. Although he now started opening the window, so I will be duct taping that too. (especially at 100 degrees)

He went through a phase where he filled several glasses of water from the frig water dispenser every day. Even though he didn't drink them. So I covered  the entire ice & water dispenser with cardboard & duct tape. Problem solved.

I have had our friend/ locksmith here several times over the past 4 years, installing keyed locks to the laundry room, garage door, my office, my bedroom, front door and security door. I have that key clipped to me at all times because I lock and unlock those doors dozens and dozens of times every day. But Randy's safe, secure and I can sleep at night knowing he can't get out, into the food, the meds, etc.

Here's my handy-dandy retractible key ring that changed my life. I found mine in a pack of 3 at the 99 Cent store. The clip is very strong and stays clipped either to my shirt, pocket or belt loop.

Randy Thompson ~ Memory Care @ 4 months

Here I sit. Alone. Thinking... I'm not a widow, single or divorced. I am married. But my husband Randy doesn't live here anymore. He was diagnosed with Frontotemporal dementia in 2014, with early-onset as far back as 2010. I placed him in a Memory Care facility 3 months ago. (July 19th, 2018) I can't even begin to put into words the overwhelming sadness. On top of the ache in my heart, I get so anxious each time I visit him... fearful of changes, a sudden decline. Will I see something that questions my decision? Are they caring for him up to my standards? So hard. Paralyzing. Can't seem to find any rhythm to my new normal. 


Ok, so I tried finishing this post several times in the past month... just can't seem to put into words these past 4 months. So I'll try again...
I visited my husband every day the first 2 months, and now every other day. I guess you could say the honeymoon is over, and now I see things about the facility that bother me... or maybe I just expected everything to be perfect. I want him dressed nicely when I arrive, and often times he's not. He's wearing someone else clothes... that do not fit. And it makes me crazy. I can't change what's going on in his brain, but I want him to look the same. I know without a doubt the timing of my husband's placement was right, but that doesn't mean it will ever feel right. How is it ever right for someone to put their loved one in a facility? And go home and go on with life. I can't. I know I didn't bury my husband, but at times it feels like I did. The layers of loss are just overwhelming. But amidst all the pain and sadness are miracles. Unbelievable miracles of God's goodness and grace... praising Him and thanking Him in the midst unimaginable grief.

Here's what I mean ~

• dear friends Linda & Ralph from WI came to be with me during the transition 
• insisted on staying three weeks after Randy's placement 
• had no idea how much I needed them here 
• I was able to duplicate our wedding quilt, so he'd have 2 at the facility 
• the medical assessment was done by a Christian nurse from the facility 
• Randy's precious 80 year old roommate raised his family in Madison, WI

the caregivers love Randy's music

I immediately fell in love with several residents

we formed a little choir of women and we walk around singing

approval for Arizona Long term care took 90 days... thank you Lord!

he has never asked to go home

he is peaceful and happy and compliant

the caregivers and staff play his music whenever they are in his room

he sits down in the dining room for his meals... a miracle.

he reads the Bible with me on my iPhone

we haven't had a conversation in over a year, but he reads with such eloquence and passion

I love the support group I attend at the facility once a month.

a Dr now comes to his facility for check ups.

Lin & I found the perfect print of Jesus at a thrift store to hang in his room

This photo was taken the night before Randy was placed in memory care July, 2018. 
I finished this post several months ago, and just now posting it. Randy has since been at Brookdale for 11 months. More posts to follow.