A New Chapter… Life After Death & Dementia

I don’t really know what to say at this point. The thing is, I still have a lot to say. I want to tell our story. I have to. I need to keep going because, well, what else am I going to do? Sit back quietly and wait for this thing to attack my brain? Um, no. So I’ll just ramble and see what comes out. My mother has been gone more than five month now. She died. From Frontotemporal Degeneration (Pick’s disease). He death certificate says the cause of death was Alzheimer’s Disease, but that’s wrong. I don’t know why I haven’t tried to get that changed. Actually, I do know: I’m too tired right now. I’m also angry. Angry at the doctors who we trusted (because that’s what you’re supposed to do)… those “experts” who were supposed to help my mom, treat her with compassion… but more often than not, they harmed her with their debilitating psychotropic drugs. She was a number. Another patient. And they didn’t really care because they didn’t have to — especially those quacks at the geriatric pysch wards (like the doctor who wanted to treat my mother w/ shock therapy because he thought she was bipolar… at 72). For the most part, and with the exception of a small few, their job is stabilize and discharge — in 30 days or less (if possible).

I’m also relieved. Thankful FTD is no longer gnawing away at her brain; torturing her. By the end, my mom’s once bright smile looked more like she was grimacing in pain — her teeth were yellowed and crooked… she was grinding her teeth. It was heartbreaking, yet impossible to get her to unclench her jaw.

And somedays I’m anxious. What am I going to do now? I HAVE TO TELL HER STORY TO EVERYONE AND ANYONE WHO WILL LISTEN — MARIA SHRIVER, JULIANNE MOORE, SETH ROGEN — LISTEN TO ME!!!!!!!!!!!!!!!! HER LIFE MATTERS AND I WANT THE WORLD TO PAY ATTENTION!!!!!!!!!! HER SUFFERING WAS NOT FOR NOTHING! LISTEN TO ME!

Hmmm. Maybe that’s anger, coupled with desperation.

I’m not really sure how the stages of grief work when it comes to dementia. And frankly, I don’t care to know. I’ve lost my mother twice: once when she was alive. I grieved then. Then again in August. The only difference is now I can’t hold her hand. I’m not sure if this is grief, per se…. I don’t miss her, but I miss visiting her. I miss visiting the other residents. And I miss those little things about her that I lost a long time ago. Like her smile. Even when she was sick, she would smile and call me, “Mijita!”

She had forgotten my name.

I’m not a soul searcher by nature. I know people who feel deeply and to me, it’s an unnecessary indulgence. Yes, I overthink things, but to find deep, profound meaning in her death (or her life), well, what does that even mean, really? Seriously?! I haven’t written a word since my last post announcing her passing. I don’t talk about her very much. And I’ve cried maybe a handful of times since she left me.

More than anything else, I’m tired. Really tired. A little less so these days since I’ve forced myself to read a little more instead of drowning any sadness in episodes of Modern Family or Mob Wives. Baby steps. Project Runway All Stars is on. 

Here’s the problem, truly, when someone is lost to a disease like FTD or any other type of dementia… the burden falls on you, the caregiver; and as that person tumbles down the rabbit hole of dementia, they become utterly and completely helpless. Now it’s up to you to pull up your big girl (or boy) underpants and make some really hard choices. Sometimes you have to choose between “mostly shitty” and “shitty.” And when they finally pass away, you can’t help but think about what you could have done differently (after all, don’t you deserve a happy ending, too?). I sometimes drown in the wouldas, the couldas and the shouldas. And please don’t say, “think about what she was like before she became sick.” You can’t imagine how difficult a task that is to accomplish. She had been sick for a very, very long time… long enough where I have forgotten those good times. But I am trying. I’ve been trying to commune with those old memories in recent weeks. It may sound nuts, but intense physical activity (i.e. spinning) whereby your brain feels like its  on the verge of imploding usually does the trick. Brief moments flash by… poofs of color… and then they’re gone. Though sometimes all it takes is a particular sunrise or a scent. Then, something is triggered.

And it’s a beautiful thing when it happens.

17 Comments

  1. think of you often. entering a new chapter with my mom where i’m with her 24/7 (at least for the time being…no crystal ball to know more at this point). thanks again for another bittersweet post.

  2. There is no one-size-fits-all type of grieving; that also applies to being ticked off BIG time. I’m sorry for the despair you feel but I understand it is part of the process. The despair won’t last forever, but it can last as long as it needs to. Be who you are, feel what you feel; it’s all valid

  3. Kathy, from one “daughter of dementia” to another, I welcome you back to posting on your blog!I love the energy of your voice. You have a story to tell, and telling it will be a blessing, not only to you but also to your readers. I know you feel worn out and empty right now, but give yourself some time and be kind to yourself. My dad had a form of Parkinson’s Disease with dementia. He died in April. I was so exhausted after the long ordeal of his illness (and all the drama that went with it), it took me at least six months after his death before I finally felt really good again. Hang in there.

  4. I am you now. I have been since following you. DO NOT STOP! You can’t! My mom still needs a voice. She has vascular dementia and her story is like your beautiful mothers. No one understands our plight!! NO ONE..unless they have been through what we have been through with our parents she uses vulgar language that would shock a sailor on leave from world war 2. I have so much to say but no way to say it. My mom is someone I never knew and someone she would never want to know. If you would like to commiserate then email me. I can give you what you need to continue. On a side note. My mom, Cookie, was put in hospital for UTI. she is still there. Became septic etc..well I always thought that the time would come and it would not be “that” hard to accept. Well when her infection was rapid and her vitals declined drastically, I was at work. Without hesitation after talking to my dad, I left work and went as fast as I could to the hospital praying the whole way not to lose my beautiful Mama….you understand. One of the few

  5. It’s good to read a new blog post from you, I hope you will continue writing as I feel you have a powerful voice that can help spread the message about FTD and other dementias.

    While most people mean well when the offer advice, we must all grieve in our own way. The thoughts and feelings about our loved ones never really go away, it’s up to each individual how he/she want to process it all.

  6. Kathy, I was happy to see you back at your blog! My dad died in April after a long battle with dementia and a type of Parkinson’s. I was so exhausted after he died … It took me a good six months to recover. Hang in there; your energy will come back. As one “daughter of dementia” to another, I can tell you your mom’s death is not the end of her story. You know what they say: When life gives you lemons, make lemonade. You learned so much through your mom’s illness … Share that. Keep writing. 🙂 God bless you.

  7. I just discovered your blog and I am so thankful. My mom was diagnosed with FTD 6 years ago when I was 22. Caring for her and loving her have been very difficult. I always feel the need to make light of the situation and to lessen everyone else’s discomfort with it-which is incredibly isolating in those frequent times when it is really NOT OKAY! Thank you so much for writing honestly about FTD. This blog makes me feel less alone. Thank you for sharing your amazing and inspirational caregiver story. I have definitely learned from it. Thank you for sharing your moms story. I am glad she is now at peace.

  8. OMG I so remember the whole second guessing syndrome – it gradually got better with support form others who had been through it snd gradually letting myself realize we’d done the best we could and had the best intentions in every decision. Nothing would have kept her brain in better shape and a couple of the things we tried did not pan out but I would have always wondered if we had not tried (e.g. pioglitazone) and other things did make her feel or function better for a while anyways. And it was no small thing for me, even going on four years later now, to find out that the EECP that we elected not to try to do for her bad heart would likely not have helped.

    And I know what you mean between deciding not so much on good versus best but less veruss more “shitty” because yeah, these diseases ALL suck eggs. I see you are worried about whether you could have Pick disease in your future too and wish there was a gene test that would jsut say yes or no and you could get a no…my dad had FTD and a doc who didn’t see why the specifics were terribly important…obviously he was not the only child of someone who died with a non-Alzheimers dementia. I used to worry we had CADASIL because we also had/have migraines, but probably not. I still want to find out more about any possible connection to statin cognitive effects but that is another story, and a project I feel like I am hitting my head on the wall with.

    All I can say is keep writing and be extra good to yourself when anniversaries or half anniversaries of anything roll around. They kind of sneak up and bite you on the butt. I’d prescribe some long walks or trail rides in the woods but if spin class does it for you, go for it…hugs from Little Rock AR

  9. Kathie…I do understand how you are feeling, as my mother passed away back in September after a long haul with dementia, parkinson’s and ending with leukemia. all I could think of is where did that come from…the leukemia? She lived with me for 6 and a half years and it was a sad journey, but I am grateful that we had the time together so that we could come to terms with each other in the end. I’ve continued to write on my blog as well…it’s a good outlet for your feelings and does help with the grieving process and helps to connect with others. When your parents are gone, we all of a sudden feel like orphans and for the most part, we are. It’s the first time in your life you have had to deal with not having the person who created you in the world with you. Not an easy thing to come to terms with. A mother is a person, who naturally will always stand by us, taking our side against anybody, loving us when sometimes we don’t deserve it…and now she is gone. It’s a terrible feeling. I like to look at the old photos of when she was young…and try to imagine her life as she had told it. I look at her diaries and journals and most of the time, I realize that she had so many feelings that I knew nothing about. I find it comforting. I too feel as if I am just waiting for the train to come down the track. My grandfather also had this horrible disease, my mother…so who’s next? I am hoping that I take after my father who did not have it. And…btw…my mother’s death certificate also said Alzheimer’s which confused me. Maybe that’s the umbrella under which the dementias fall? Keep writing…I’ll look forward to more posts from you!

  10. My mom died from brain cancer in November my dad has severe vascular dimentia – as browsing and found your blog. Thank you for this.

  11. Thank you for this post. I lost my mother in January 2014 to FTD. My mom was 63. I am just now 32. I grew up thinking my mom would always be here but sadly there was another plan for her life and I am still trying to wrap my head around it. I was sick with the flu last week and found myself wanting my mom several times because who doesn’t want their mother when they are sick and have a fever. Only mom can kiss your forehead and know your temperature. And like you, I find myself flipping through the memories I have, scraping and trying to find those beautiful memories. The ones I never want to forget, but somehow it always seems to be the sad, devastating memories that I come back to. The image of my mom completely bed bound, sitting at her side pleading and begging her to just try to swallow the little bit of water I put into her mouth. I wish I could find those beautiful memories again because I really do not want to lose them but the memories of her suffering far exceed my memory capacity and have taken over. I hope that in time that will change and you and I will both find the beautiful memories easily.

  12. Kath-I tried to call you on cell number you had given me when I saw the beautiful tribute and pic of your mom in the paper on anniversary of your moms ‘graduation’to heaven.I had a smile and a tear or 2 in remembrance.
    Now she knows how hard and how long you tried in your care for her and blesses you for it! No need for shoulda’s for you, Girl!.You were such a blessing to her and others.
    If you still have my phone# please feel free to call me some time.

    Love and prayers Mary

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