Interesting Insight on ALZ Drugs

04 Monday Mar 2013

Posted by Ann Napoletan in Helpful Resources, Mom, Pharma, Research

Should my loved one be taking one of the few Alzheimer’s medications currently approved by the FDA? It’s something that we have all wondered during the course of this journey. What, if anything, are the drugs promising? Is there really a benefit? Is there a down side? At what point should he/she be taken off the drugs?

These are excellent questions, and many are addressed by Carole Larkin, an expert in Alzheimer’s care, in her recent piece on Alzheimer’s Speaks. Click HERE to read more about:

the importance of knowing what stage of the disease your loved one is in
common drug interactions (both good and bad)
financial considerations
when it makes sense to stop taking the drugs

According to Larkin, it is currently estimated that the ALZ medications are helping approximately 30% of people who are taking them, while 70% are seeing no benefit. The bottom line is that, like so many aspects of this disease, it’s a guessing game. A gamble.

In our case, getting the meds right was a constant struggle. My mom took Aricept for approximately six years, until she went on hospice in November. Her neurologist didn’t feel strongly one way or the other, and I had heard of cases where patients who stopped taking it experienced a rapid decline. My inclination was to keep her on it; I wasn’t willing to take the chance only to find out I was wrong. Right decision? I have no idea.

That’s the kicker about this disease – no one knows the answers; all we can do is educate ourselves as much as possible so we can make informed decisions. At the end of the day, we do the best we can based on what we know and what our gut tells us… Not terribly scientific, but until research turns up some more conclusive evidence one way or another, we often find ourselves wedged soundly between a rock and a hard place.

Tired…

12 Wednesday Dec 2012

Posted by Ann Napoletan in End of Life Planning, End of Life Signs, HomeReach, Hospice, Inspiration, Kobacker House, Pharma, Ruminations, Support system

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Too tired for a long post. Suffice to say it’s been an emotional day. At least two people passed today. One was two doors down, and a few minutes ago, they wheeled another by our room. I just don’t even know what to say. I don’t know how these nurses and docs do this day in and day out. They have to be wrung out at the end of a 12-hour shift. Very, very special people.

They cancelled Mom’s sitters, so we are spending the night at Kobacker. I plan to discuss that with someone tomorrow… I am a little perturbed that I was not notified and didn’t realize this until I came in this morning to find Mom alone. I’m giving benefit of doubt right now and assuming some type of miscommunication or misunderstanding.

Today, they put three ports so that meds can now be given subcutaneously. We had an awful incident this afternoon and I won’t go into details, but it’s something I never ever want to witness again. She is at a point where she can no longer swallow, but we found out the hard way when she received a tiny amount of meds via oral syringe and couldn’t handle it. Awful.

We had both the chaplain and social worker in today. Definitely needed the extra support and glad it was available. Tears we plentiful. More and more signs that the end is nearing. The apnea is like nothing I’ve ever seen – up to 20 seconds without a breath. Very difficult to watch, but she is relaxed and comfortable with no signs of distress.

Jess brought some photo albums and so forth back with her tonight so that we can start pulling pics together for a slide show. We also have Mom’s retirement memory book here now and it is jam packed with notes and stories that can only make us smile. She touched so many lives; it’s incredible, really.

Continue to be amazed by the support from friends. Emily came in late tonight after a long day at work plus another commitment, and sat with Mom for a couple of hours. She lives all the way up in Delaware but that didn’t stop her from staying MUCH later than she should have. She’s such a comfort to all of us; what an angel.

Sheila also came after work and sat with me for a few hours while Jess ran some errands for me, grabbed a few things at home for us, and let Tucker out. Again, such a comfort and although she didn’t know my mom pre-ALZ, she is absolutely amazing with her. So gentle and kind, so soothing. She even helped me do Mom’s nails the other day. #Truefriend

Everyone… and I mean everyone has been so wonderful. We have an amazing family of friends. I hope I can return the kindness, I really do. My life has changed – I have changed. I can’t put my finger on it, but life as I knew it will never be the same after this experience.

Tonight, I am sending prayers across the miles to two friends from my high school class. Both have parents with this damn disease, and all three of them went into hospice within a few days of each other. Donalee’s dear mother earned her angel wings last night, and Maria has been sitting with her dad all day, living what sounds like a parallel experience to our own. Sending love and prayers ladies; with you in spirit.

My heart and soul…

One of three ports…

Another Day at Kobacker…

10 Monday Dec 2012

Posted by Ann Napoletan in Care Options, HomeReach, Hospice, Kobacker House, Mom, Pharma, Ruminations, Smiles, Support system

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photo(12) Things are happening so fast… and yet so very, very slowly…

It was good to have the support of several of our closest friends today. Jess and I needed it. Badly. It was our most emotional day since arriving at Kobacker. Mom hasn’t had anything to eat or drink – aside from a few drops of water – since that small cup of ice cream on Friday. She’s fading…

Lorazepam and buspar were not enough last night, so she had morphine once overnight and once early this morning. When I arrived, her agitation was gradually increasing; she was grimacing as though in pain, crying out, and moaning. Within a short time, the nurse practitioner came in and we decided to schedule the morphine for 2.5mg every 12 hours, with breakthrough doses if needed. Lorazepam is now 0.5mg 3x daily and 1.5mg at bedtime. Goal, a restful night with perhaps some more clarity through the day.

It’s impossible to tell if she sees us. When her eyes are open, she stares off into the distance – even with my face inches away, I can’t tell whether or not she is seeing me. I do believe she hears us, though. As I tried to soothe her throughout the day, I felt as though she responded ever so slightly to my voice.

Circle of Life

I can’t say enough about the staff and volunteers at Kobacker House. The kindness and compassion in that building is palpable, and there is a certain sense of peace in a time of upheaval and raging chaos. After things settle, I’ll certainly think long and hard about volunteering there.

As much as I hated leaving Eason House on Thursday night, the fact is, we need a nurse just outside the door right now – neither Jess nor I have ever been through this. We don’t know what to watch for or what to expect… just knowing they are there when needed helps.

And, we were so lucky to have Ciara back today from Comfort Keepers. After two days, I feel like I’ve known this amazing 22-year old girl forever. This is one incredible human being. I would love to see her working at one of Tim’s houses; she would be perfect. I’m amazed at how much she has connected with my mom in such a short time. Today, we looked at pictures together; she wanted to see the Marilyn everyone knows and loves – the funny faces and personality that could light up a room. It felt good to share that…

Again, she kept notes for me all day. There was a block of time where Jess and I needed to be step outside the room, gather ourselves, and talk for awhile, and I had no qualms about that knowing our angel from Comfort Keepers was at Mom’s side. Before leaving for the night, she combed mom’s hair, carefully adjusted the covers, and shared some of the things that mom likes with the overnight sitter. Then, she gave me a hug and said she’d call the office tomorrow (per my request) to see if they can assign her to us again based on her availability.

Unfortunately, I missed Shelly’s visit this morning, but I’m glad she got to spend some time with Mom. This afternoon, Rachael, Debby, and Sheila were all by, and tears flowed in abundance. What would we do without friends? They are the ones who never waver… they don’t know the meaning of “fair weather friends,” they’re by our side through thick and thin. While it’s easy to hang around for the good times, it’s the real friends who don’t disappear when the going gets tough. I only hope I have the opportunity to return all of the kindness that has been shown to me…

Best friends never waver…

Tomorrow, I will be looking into extended FMLA leave from work. I’m just in no frame of mind to be able to focus on the simplest of things let alone the super-charged stressful environment at work. I can’t even focus long enough to read more than a dozen emails with any sort of clarity.

I feel drained, and I’m most scared of where I’ll be when it’s all over. I don’t even remember what life was like pre-Alzheimer’s. Since 2004, this has been a part of our lives, and certainly since 2006, it has consumed us. The past year has just been a blur. Right now we’re surrounded by the constant love and support of friends far and near… eventually, things will return to a strange new “normal.” I worry about how I’ll handle that. Still, I’m trying very hard to stay in the moment and focus on one day – one hour – at a time.

Jess decided to stay here at the house this week, and I think it will be good for us to have each other close. Today, we both fell apart, yet even through that, we were able to lean on one another. Not sure where either of us would be without the other…