I fired up the laptop to write a post about a report our friend John Sandblom shared with Vicki about higher mortality risks with antipsychotic drugs often used with older dementia patients (U.S. Food & Drug Administration’s Public Health Advisory: Deaths with Antipsychotics in Elderly Patients with Behavioral Disturbances; later confirmed in Europe). But my post took on a life of its own.
As I’ve watched Vicki’s doctors try different medicines and combinations of drugs to help alleviate the most extreme symptoms of her dementia, it’s pretty clear that her docs are doing a lot of “let’s try this and see what happens.” I’m sure a lot of our doctors do this to some extent. But most of the time we’re not in situations as significant as dementia and other neurological diseases.
The typical primary care physician or general practitioner rarely encounters Frontotemporal Dementia (FTD) or related types of dementia, so their ability to recognize, diagnose, and treat dementia’s symptoms may be limited. Alzheimer’s Disease is the most common type of dementia, but by many estimates other types of dementia account for about 40% of diagnosed dementia cases. And although research is starting to show promise, there isn’t a way to prevent or cure dementia, or in most cases even slow it’s progression.
Early diagnosis can help significantly in managing the quality of life for the patient through drug therapy, but most of the time early onset dementia is fairly advanced by the time it’s diagnosed.
As I’ve read about FTD, seen Vicki change over the past 4 years, and met and chatted with many other persons diagnosed with the disease, I’ve learned that this disease presents itself differently in different people. FTD is terminal, and there are identified stages almost every patient goes through. But unlike the stages of Alzheimer’s Disease which usually progress in a predictable sequence, the stages of FTD occur in different order in different patients.
With so many factors involved in FTD and other dementias, it’s a daunting task for health care providers, patients, and their families to recognize and live with these diseases – and everyone involved is affected. Vicki and I, along with others we know, try to learn as much as we can about the disease, pay attention to changes caused by the disease and changes caused by medications, and try to live each day as best we can.
I pray more. I hope for good days for Vicki, knowing that a “good” day for her now is a lot different than 2, 3 or 4 years ago. And I’m so grateful for our friendship as I walk with Vicki on her journey as best I can.
Thank you, Papa.
For 4 years I have won the battle with FTD (Frontotemporal Dementia) and, all things considered, including all the potential threats, I’ve had a good four years.
But lately, Papa, I am afraid. Not like when I had spiders coming out of the ceiling light, or thought so. Not like ‘how will I live now that I am fired?’. No. It’s something new. Something ‘different’.
My friend came over last night. It was a great day, and even better with her here. I know we had something pass in conversation that was exciting to us both. We even continued on the phone later. And today, it’s all gone.
I was hungry all morning, but I didn’t want to use up the meat loaf my friend brought over (so delish!). And so I stayed in bed, entertaining my new, persistent migraines but unable to get up and just eat something. A piece of toast, a slice of cheese. But I was confused, caught up in the meat loaf.
My daughter & I were going to see our friend, Troy, in a play at Central Michigan University tonight. I was totally up and revved to go. Yesterday. Today I was weeping, practically begging my daughter to not come over. But Bep came by, bringing some groceries. And when I met her in the kitchen, starving, I looked at my stove. There was some kind of cabbage concoction with the meat loaf. The meat loaf! MY meat loaf!
I looked at my daughter, who was puzzled when I broke into tears. “I don’t remember making this.” It was still warm. The aroma heavy in the air.
This isn’t the first time. But it’s gotten me fearful. Not of dying, but how quickly things could turn, and I disconnect. Altogether.
Papa? It’s me, or what’s left of me, Vicki
Huh. Life is funny. I wrote this amazing (my words) post and only the headline was saved.
I am 2 hours away from posting ‘rabbit, rabbit’ on my children’s and close friends FB or text. Years ago, my baby girls told me that the first words out of our mouth on the first day of the month must be ‘rabbit, rabbit’. And then we will have good luck.
So, before I go further, “RABBIT, RABBIT” for the believers.
Through the years, before this comfy internet, I placed calls, yelled ‘rabbit, rabbit’ to my children at 12:01 AM, and now send texts. Rabbit, rabbit. May we all be well.
But, today, the last day of the month, I tried to send a message and it said, “Please wait. Shutting down.”
And I waited. And while I waited I realized that it was me who was shutting down.
I live less for today and more in yesterday. I missed Christmas last year, and assume I will miss more.
I cannot go beyond my porches. I live in a coccoon and I know I will not be a butterfly. As I watch my geraniums wane on my lovely front porch, knowing I could give them water to sustain them a little while more, I know I won’t.
I won’t leave this house. I won’t visit my family. I won’t …
Papa, I’m shutting down. Please wait. V
I’ve been visiting Vicki for a few days. When I arrived, Vicki was having one of the best days she’d had in quite a while. I haven’t seen her with this much energy in a long time. She told me she’d had a great visit with her daughters the evening before, and was enjoying a visit with a very good friend she hadn’t seen very often during the past 8 months. Vicki was doing great. I was happy to see Vicki so happy and energetic.
The first day I was here was like going back in time to when Vicki was doing so much better. But from that high point she quickly crashed to the worst I’ve seen her. She was completely out of energy and has stayed in bed virtually 24/7 for the past few days. She’s had several strong episodes of Dystonia – the worst I’ve seen yet.
Vicki’s home isn’t large, but with air conditioners and fans running, it’s hard to hear from one part of the house to another. So, strange as it might sound, we sometimes send text messages if we need something. The other day I was using my computer in the dining room when I got a text message from Vicki – but I didn’t understand it. I replied “???” – here’s our conversation:
Oh, I suddenly realized, I’d better check on Vicki. It turns out she texted me in the midst of a major Dystonia attack and needed her medication. But because of the Dystonia, she couldn’t do more than use her elbows to write a text message. I gave her the medication and stayed until the attack ended. Then Vicki went back to sleep for many hours.
This has been an eye-opening visit for me. I’ve seen Vicki go from the best she’s felt in a couple of years to complete exhaustion and major Dystonia attacks in less than 24 hours. It’s made me think that living with Frontotemporal Dementia (FTD) isn’t just like riding a roller coaster – it’s riding the most Extreme Roller Coaster you can imagine.
Actually, I can’t imagine taking such a ride. But Vicki’s doing it – and I’m blessed to be with her at least part of the time.
It’s a beautiful August Summer day. I have 2 friends coming to visit today and I am feeling good. Beanni actually used the pee pad. I don’t think it gets much better than this.
Understanding. Comprehension. Apathy. They seem to rule my life and fight with it. My girls came over yesterday, Bep weeding & Tandi getting my groceries. Bep doing my meds. Tandi gathering the bills. And lunch at Relli’s. A good, but long day.
I ache to see my children. Not just for the reason most moms would give, but because I am so afraid of the next phase, where I begin to be apathetic to them, then not know them any more. I don’t want to say that to them, but it niggles in my brain and heart.
I missed Christmas with my family in 2012. Those who know me, know Christmas is my favourite time of the year. I listen to Christmas carols even now. And it is, without a doubt, a high priority family time. From the time I was a baby thru now, my family – parents, then my own, and now the grands – Christmas was a time of laughter, of remembrance, of senses, of all Goode Things.
Last year, I became physically & mentally sick. It lasted for weeks. I could hardly lift my head off the pillow. I had no sensation that it was Advent, Christmas soon to come. I had no feelings, no emotion. Nothing. I had flat-lined. And I knew I was tasting a bitter appetizer of the banquet life had spread before me.
And so, I missed Christmas. I kept to my bed and once I told my family I couldn’t be there, it was out of my head and heart. Fini.
I wish Christmas could be today. I am alive, I feel things. I am sentimental, I easily bruise mentally. I weep, I laugh.
And the Peanut Gringo? My friend is bringing my favourite wine today to celebrate months of us being apart. Ahhh. Pinot Grigio.
Papa? Are you there? It’s me, Vicki