It’s 1p.m. My husband has been up since 6:30 a.m. I helped him out of bed, guided him to the toilet, then to his red recliner chair . Gave him his meds. I assumed he’d fall into his usual early morning ritual and go back to sleep for an hour or two. Instead he started talking, talking, talking . Some might say rambling, and hasn’t stopped talking. I don’t exaggerate. He’s talking now as I write this blog. Sometimes he includes me in the conversation, but mostly he’s talking to people I can’t see; imaginary to me, but real to Gary. Talking about a variety of things. Things to the average person that wouldn’t make much sense. And while he’s talking his hands are constantly moving, like he’s pulling thread though a needle, stitching a garment. Then he cups his hand as though holding a gem . He calls me over, wanting to place it - whatever it is, in my hand. I take it. Gary tells me to be careful not to lose it. I assure him I won’t.
After a few minutes I step out of the TV room to get coffee in the kitchen when Gary yells out in a loud voice, “Mom, (I‘m never sure if he means his Mom, my Mom or me) I’m hungry for eggs and bacon”. I tell him, “Great! I’ll fix breakfast”. No, he says , I already did , I’m keeping it warm right here, under this”, and he points to the blanket on his lap.
It’s a new, sad development in Gary’s Dementia. One that is happening more frequently , usually during the night, but now more often, during the day, too. Amy, his Hospice nurse says Gary is hallucinating, that it’s not uncommon with Alzheimer’s patients. I decide I hate that word, and all it implies.
4:10 p.m. - The shower aid has been here and gone. It required both Christina and I to navigate Gary into the bathroom , to help situate him onto the shower chair. He cannot stand on his own, and where just a couple months ago Gary could execute directives about lifting his leg over the tub, or moving this way or that, now he can’t. After the difficulty in maneuvering Gary in the bathroom today, and the risk to his safety, the shower aid strongly recommends bed baths for Gary, and emails her concerns to the nurse. I take a deep breath, and sigh. Another sign of my husband’s decline. He’s not eating much either, or drinking much, and hardly ever asks for an ice cream bar, a Reese’s Peanut Butter cup or Pepsi. When he does eat, I put a bib on him and help feed him or the food will get all over his shirt, the chair and floor. We go through this as if it’s normal. It’s not, but it is the journey my husband and I travel together right now. A journey we hadn’t planned on, or wanted to go. The road has been bumpy, bruising yet we are making our way; trying to adapt, accept and persevere. But to be sure, I’m not always a happy camper. It’s not easy. At times I’ve been angry, impatient, frightened having to deal with the all consuming, aggressive, irrational, ever changing moods and needs of Gary’s Alzheimer’s. The sorrow of watching my dear one - his mind and body slipping away. And nothing I can do to make it better. Except love him, and reassure him I am here. I expect other care givers whose spouse or parents suffering with Dementia feel the same way. Helpless; Hopeless at times, yet praying often to serve the one we care for with a happy heart, and for them to have peaceful days. To be grateful for the tender, lucid moments shared - a few days ago Gary, waking from his nap looked up at me, and sweetly said he’d like a hug. I bent down and wrapped my arms around him, and he hugged me back. One of the nicest hugs ever!
I don’t understand why my husband, or anyone has to suffer with Dementia - the purpose or reason. It’s a hideous disease. Robbing one of cherished memories of people and places, movement and bodily control, participation in the simple, daily activities of life. But I do trust our Heavenly Father with Jesus, His son , and the Holy Spirit is always near. I believe Jesus’ words to us, I am with you always. Cast your cares on me, because I care for you. And with the Psalmist I pray, You are my rock and my salvation, an ever present help in time of trouble .
I’m thankful, and blessed in family and friends - for their encouragement, prayers and visits; for their kindness and love for Gary, and me. I encourage all primary care givers to seek out a support group, or open yourself to a trusted family member or friend. Not to close yourself up, and think you can do this on your own. To find quiet time for yourself - to renew, refresh ; to breath deeply, and relax. Because if we don’t take care of ourselves, we won’t be able to take care of our loved one in need of us.
