“For love bears all things, believes all things, hopes all things, endures all things.” 

– 1st Corinthians 13:7

When I was 12 years old, Grammy, my mom’s mother, moved in with our family. Initially, all of us kids doubled up in rooms to open up a bedroom in the small house I grew up in. Almost a year later we moved into our current house, after renovating the garage into a mother-in-law suite, and life resumed a sense of normalcy. Grammy became a part of our daily family life, and while she took care of herself during the day in her apartment, she came up each night for family dinner and came with us to Mass, parties, and other family outings. My mom would drive her to her various appointments and would buy her groceries, but that was the extent of Grammy’s needs. She had balance issues and used a walker, and sometimes would be forgetful, but it was simple, normal “elderly” forgetfulness and we thought nothing of it.

A collection of some of my favorite photos of Grammy from 2012-2014.

At the end of May 2014 our lives changed rather suddenly when a severe case of arthritis left Grammy unable to stand and walk. The fear, anxiety, and confusion that had gradually been appearing in Grammy became her constant life. She went from needing just a little bit of help each day to needing full, 24 hour care pretty much overnight. After months of doctors appointments, tests, and a lot of trial and error with various medications, it was clear that we had switched into full-time caregiving for my dear Grandmother. She was formally diagnosed with dementia in the late summer of 2014 and now two years later, we’ve reached a new level of normalcy.

Friends and family will ask us how Grammy is doing, and honestly, it’s difficult to know how to respond. It’s difficult because, until you care for someone who is suffering from dementia, it’s impossible to completely understand what “normal” is.  To those of us who live in the same house as her and interact with her every day, there is a routine that’s normal. Her sudden emotional breakdowns, confusion, and her need to have someone constantly in her sight at all times is what we’re used too. She is unaware of what is going on in the big picture sense (what day or season it is, or what family events are about to happen (like weddings), or even what holiday we celebrated yesterday (like July 4th),  she can’t handle conversations happening around her because they confuse and frustrate her, she is easily agitated by loud noise (which in a house full of kids, takes some retraining), and breakfast is a one-two hour ordeal which includes constant prompting and gentle reminding of , “Grammy, you’re trying to eat right now” and, “Grammy, your tea’s right here” when she asks yet again where her drink is. One thing about dementia is that dementia patients can appear normal, or at least mostly normal, when they are out in public, or around company, so you are not going to get an accurate portrayal of how someone suffering with dementia is doing by just a phone call or visit. That’s why I wrote this blogpost, and it’s why I documented the last few weeks I spent with Grammy: to give our family and friends a way to “live” with Grammy through my words and pictures.

One of the hardest things about caring for her is that a lot of the time I simply can’t do much more than attempt to convince her that everything really is ok, that she’s taken care of and that she will never be alone. To those of us who take care of her, her frequent doubt of our love and care, and her consuming fear that we will abandon her or that something terrible is happing is hard, especially when all we have done for the last two years is love and care for her.  But she doesn’t remember the last two years, she doesn’t remember yesterday, she doesn’t even remember twenty minutes ago. All she knows is her present fear and suffering. To be clear, she is not suffering all the time – she is not unhappy, angry and sad all day long; however, her fear and doubt is a daily battle that flares up by various occurrences throughout the day. Going to the bathroom, which was once a simple thing that she didn’t think twice about, is now a frightening, and difficult ordeal for her. Taking her daily pills, which she once was able to do quite easily, is also now a long and trying task for her. Often, she forgets what she’s doing while holding a pill in her hand and I have to take her through it step by step. “Grammy, you’re trying to take your medicine, let’s put this pill in your mouth. There you go, now here’s your water. Grammy you need to drink the water so you can swallow the pill.” I’ll repeat the above instructions five more times every morning all before we’ve attempted to get her dentures in and breakfast eaten.

She hasn’t walked in two years, and standing up with the just the aid of a walker is no longer enough – she requires our complete help just to stand for a few seconds while we clean her and dress her.  Transfers from the bed to the wheelchair and wheelchair to couch are no longer done on her own.  So when I say we do everything for her, I mean everything. The only thing she does on her own is eat, and even that requires constant verbal prompts because she’ll be sitting at her table, staring at her plate of food with her fork in her hand completely lost as to what she is supposed to do next.

Some of her constant phrases which she repeats easily a dozen or more times a day are: “I can’t do it, I can’t do it on my own”, “what am I doing?” “Where are you?” “What’s going on?” “What do I have to do?” “Don’t leave me.” “I can’t, I can’t.” These phrases can frustrate me as I may have just told her what she’s doing, or I may have just reassured her that everything is ok, and yet her fear and doubt and mistrust in me continue. It hit me one day, just how often similar phrases of fear, helplessness, and distrust are scattered throughout my prayer journals. How often I have uttered the same phrases to God, doubting his goodness, doubting his care for me. And how has God responded time and time again to my doubt, fear, and distrust? LOVE. Plain, simple and constant love. And likewise, God is calling our family to love her the best we can. God is asking us to show her the same patience, respect, and continual love that He shows us. It’s certainly not an easy task, but it is incredibly rewarding nonetheless.

The following pictures may be hard to see, especially for our loved ones who haven’t been in close proximity to Grammy in recent years, but I believe they are necessary. While things have become more difficult,  there are beautiful moments every day when she is again the sweet, gentle, and the oh so loving Grandma I grew up with. These moments, however brief, leave us proof that she is still the same beautiful person underneath the shadow of dementia. I know that one day when she goes to meet our Lord in eternity, she will look back on these years and see clearly how loved and cared for she really was, and that makes it all worth it.

“Love is patient, love is kind.
It is not jealous, it is not pompous,
it is not inflated, it is not rude,
it does not seek its own interests,
it is not quick-tempered,
it does not brood over injury,
it does not rejoice over wrongdoing
but rejoices with the truth.

– 1st Corinthians 13:4-6 –

xoxo,

Mary Kate