Dementia

How to Grieve the Still Living

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There are few things in this world harder than grieving a still-living person. Transform your view of your loved one to see them as they are now.

My grandfather fought Dementia for over 10 years. I was in my early 20’s and didn’t really involve myself in his care. My Grandma was diligent about shielding us from the darkness surrounding this disease. My Dad, however, was very involved.

Early in my Grandfather’s journey, my Dad would take him hunting. It was something they had enjoyed together since my Dad’s early childhood. As Dementia started taking more and more of my grandfather’s mind, my Dad experienced a reversal of roles until my dad was leading his own father.

granddad

My Dad recounted the day he realized his dad was gone, replaced by an unfamiliar, childlike individual. My Dad sat my Granddad in a deer stand as usual. He told my Granddad to wait for him to come back. After hunting for a while in his own stand, my Dad went back to escort my Granddad to the camp only to find my Granddad wasn’t in his deer stand. My Dad started frantically searching, finally finding him wandering through a pasture, lost and confused. It became clear to him that day that my Granddad could no longer hunt alone.

There are few things in this world harder than grieving a still-living person. See them as they are now and not the person they once were. 

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My Dad started letting my Granddad hunt with him. They would park the truck a few hundred yards away and slowly walk to the stand, my Dad holding both hunting rifles while my Granddad shuffled loudly behind him.

Grieving the Still Living

As he was telling me this story, my Dad said the one regret he had was that he didn’t have more patience with my Granddad. He admitted to me that he got easily frustrated by my Granddad’s increasingly child-like nature. He contemplated that maybe it wasn’t my Granddad’s childishness that frustrated him. Maybe it was the fact that his Dad wasn’t “Dad” anymore.

A Stranger Disguised As Mom

In 2014, my husband and I began taking care of his Mom. She has Frontotemporal Dementia and Early Alzheimer’s Disease. After the first year of caregiving, I started thinking of my mother-in-law like one of my children. It helps me provide her with the care and nurture she needs.

Related Post: What Does Parenting Your Parents Really Mean?

My husband, however has struggled reconciling the fact that his Mom isn’t “Mom” anymore. I hear him try to carry on a conversation with her. He tries to discuss politics while watching the news. He’ll talk “shop” while watching a car show. I watch as he gets more and more frustrated with her child-like responses. I listen as she asks the same question over and over and over again and see my husband get more frustrated by the second until he finally snaps and says, “Don’t worry about it, Mom!”

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    It’s the Disease

    My response to my husband is an automatic “It’s the disease. She doesn’t mean it.” It’s easier for me who has never known her to be any other way to beg him to be patient and calm. But, to my husband this is Mom. This is the woman who gave birth to him. The woman who tucked him in at night and told him there’s nothing to be afraid of. The woman who’s cooking skills are (as I’m frequently told by both my husband and my MIL) enviable.

    family photo

    This woman who looks like the person who took him to church, sang him songs, homeschooled him, comforted him, and nurtured him isn’t that woman anymore. She’s an imposter with the appearance of one of the most important people in his life, a stranger disguised as mom. 

    I mentally cringe as she tells my husband and his siblings that she has no one who cares about her, no one who loves her anymore. I watch them smile and nod as she speaks of how the most important part of her life now is her money.

    They struggle to be respectful children while having to tell her “no”. They try to hide their looks of utter betrayal when she yells that this is her house and they have no place in it.

    Often they respond in frustration, trying to reason with her, trying to get a glimpse of mom, grieving the loss of the person they knew while trying to provide care for the person she has become.

    Related Post: How to Handle Elderly Bad Behavior

    The Cruel Reality

    Dementia is a cruel disease. It robs you of what makes you, you. It takes every memory, every skill, your personality, your character and eats it away until all that’s left is a flesh shell of the person you once were. Your family now has the task of trying to care for this stranger, giving all their love and care to this person who is becoming less and less the person they know. They have to grieve a still living person.

    Tips for Grieving the Still Living

    1. Recognize that it’s ok to feel grief/sadness/loss. Allow yourself these emotions. Lock yourself in the bathroom and cry. Find a grief counselor to help you move forward. Do whatever you have to do to process your emotion.
    2. Allow the image you have of your loved one to be transformed. Instead of thinking constantly about who they were, focus on who they are and what their needs are now.
    3. Get some help. Hire someone to come in a few hours a week to take some of the burden off of you. You will be able to recharge and resume caring for your loved one. If you don’t think it’s something you can afford, ask your local Department of Aging to see what kind of help is available in your area.
    4. Be ok with you being the “parent”. I know it seems weird to parent our parents. You will receive some backlash from your loved one initially. But set up these roles now, particularly if they live with you. “Parenting” in this case is really just being the recognized authority figure in the home. Your parent will feel a sense of stability and comfort knowing this role is no longer a weight on their shoulders.

     There are few things in this world harder than grieving a still-living person. Dementia can last months or decades. Be prepared. Allow yourself to grieve. Transform your view of your loved one to see them as they are now and not the person they once were.

    Did you like this post? What tips do you have for grieving the still living? Let me know in the comments below!

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    There are few things in this world harder than grieving a still-living person. See them as they are now and not the person they once were. 

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    2 Comments

    1. Brandi, Mrs. Blair was an important part of my childhood. She was the mother of my best friend. She gave me a love of gospel music and feed me countless times. We still talk about some of the amazing meals she made. I am grateful for my time with her and grieve with Danny and Sara. I’m grateful for you and your transparency. I hope one day to meet you in person. God gave Danny someone amazing. You, Danny, Sara, Mrs. Blair and your family are in my prayers.

    2. Jenny,
      Thank you for your sharing those sweet memories of JessieAnn! She was talking to me just today about some of her favorite dishes – specifically the Swedish Meatballs and Goulash. 😉 It’s so difficult to watch someone you love suffer but it’s a comfort to know that we do not grieve alone. Thank you for your prayers. Blessings to you and if you’re ever in Texas you are welcome in our home!

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