Monday, April 24, 2017

Weight Loss

Last summer, Mom experienced a significant decline and it got me a little bit worried. With every rapid decline, I can't help but to wonder if this is the turn that is going to lead us to that final stage. I could write all the details of what transpired, about our evaluation for hospice and home health care, but it's a long and exhausting story. To sum it all up in a nutshell, some members of my support group suggested that we get her a hospice evaluation claiming that their loved one received hospice much sooner than the phase my mom was in at that time. I kind of got my hopes up; not because I wanted hospice necessarily but because I thought we might actually be able to get some (free) outside help. Well, after the evaluation, it was determined that she was not eligible for hospice yet, even though she did fit some of the criteria. One of the biggest factors, they told me, was weight loss. Significant weight loss indicates that their eating habits are changing; at the end stages of the disease, weight loss will occur, signaling the advancement of the disease.

This left me a little confused. For one thing, in everything I've read up about semantic dementia, it says that weight gain is very common in the late stages of the disease. Mom was at her all time heaviest weight, weighing in at 234 pounds. Her average weight (at nearly 5'8") has always been somewhere between 150-160 lbs. Nevertheless, Mom's eating habits were changing. Some days she'd eat hardly anything at all; other days she would devour 6 or 7 pb&j sandwiches. She was still drinking Ensure though, which is packed full of calories. The hospice nurse recommended that we keep track of her weight and her eating, stating that we could call back for a reevaluation at any time, and especially if we could show changes in her eating patterns and weight loss. So, for the next few months, we kept a log of the times and the quantities of Mom's meals.

After a couple months of doing this, we didn't really see much of a decline (especially in weight) so we decided to quit tracking for a while. The last time I weighed her was early fall and not much had changed. BUT, since that time, Mom has quit drinking her Ensures. Dad has left them out for her on the counter and has even tried personally giving them to her, but she won't drink them. She will only drink water from a plastic water bottle and she is now on a 100% pb&j sandwich diet. We generally only make 1/4 of a sandwich for her at a time because so much of the sandwich ended up going to waste. She was taking one or two bites and disposing of the rest and she will not eat leftovers. She has to watch it being made if she's going to eat it!

I've noticed her slimming down a little bit over the past few months, so today I decided that I should get her on the scale-just to note the changes. Our caregiver was at the house with me when I showered her so she helped me to get Mom on the scale afterwards. This is no easy feat; Danielle had to pick up her feet and move them onto the scale while I held onto her upper body. I was shocked when I read the scale. In fact, we put her back on two more times just so I could make sure that we read the number right and that it wasn't a mistake. All 3 times, her weight came in right around 183 pounds; 50 pounds less than she weighed in the fall!

I am understanding more now about the weight gain/weight loss issue in the last phases of the disease. While those with semantic dementia do tend to gain weight in the later stages of the disease, there is an order to that very final stage that I am finally starting to comprehend. As one enters into the very last stage, there comes a disconnect between body and mind. The body forgets how to eat, how to swallow, how to walk, how to talk, how to hold in human waste. We've seen some of these changes already, but we still have a ways to go. I do think it's time to start tracking her weight again. It's possible we could now get her qualified for hospice, although she could still have a long way to go-there's no way to know for certain how long this phase will last. When she begins to have more trouble with her mobility or complications with infections (pneumonia, UTI's), etc., then I think an evaluation will be in order. Until then, we take it one day at a time.

Monday, April 17, 2017

Shoe Fetish

Lately, Mom has a bit of a shoe fetish. When she was in moderate stages of the disease, she used to be OCD about laying out her clothes for the following day, shoes and socks included. She'd also place her pajamas on the footstool that sat in the corner of her bathroom/vanity area. The obsession has continued, even though she no longer changes her clothes by herself anymore. I think it's just the motion of doing it; she remembers that she has to put clothes in the corner but she doesn't remember why she does it.

The thing is, Mom is not only laying out her own clothes and shoes. She collects dad's shoes and whatever shoes she can find throughout the house and puts them in her corner. There have been several occasions where my, or other family member's shoes, have gone missing. When that happens, we know the first place to look: Mom's corner. And sure enough, that's where we find them! One day, not long ago, I actually had to hide my shoes because she kept coming out to the living room to retrieve them and take them back to her room! It gives us all a good chuckle.

Sometimes, Mom will actually attempt to wear the shoes she collects. Last week, I heard heels clacking down the hallway as Mom made her way out of her bedroom. The sound made me raise my eyebrows and I laughed out loud when she made her grand entrance wearing my dad's church shoes.

Sometimes, with all the sadness that dementia brings, you've gotta find things to laugh at. I know as we look back on memories with Mom, her shoe fetish will always give us a good chuckle!

Monday, March 20, 2017

Memory Masquerade

I've always tried to be very open with our journey on this blog, sharing every part of it; the good, the bad, the ugly. The other day I realized that I have been holding back a big part of my journey with dementia. Why am I doing this? I don't really know, but I suppose a big part of it is fear; mostly fear of what people think.

I have mentioned The DEANA Foundation on here before, but I don't mention it often. I think a big part of that is because I don't want to come off as though I'm trying to advertise or "sell" something to my readers; that isn't my intent with this blog. With that said, the foundation has become a huge part of my life and a big chunk of this journey and I feel that I'm not being authentic by holding back and not talking about it. The truth is, I spend a portion of nearly everyday contributing something to the foundation, whether it's phone calling, making presentations around the community, working out details on events, etc. Some days, I feel like I am crazy to have started all of this while in the midst of caring for my mother and my young family. There are moments when I question myself if this is what I should be doing and focusing on. There are moments when I feel very inadequate, like I am a tiny fish in a giant pond. There are moments when I want to throw in the towel and quit (not gonna lie). Yet, there are other moments when I feel like I was definitely meant to carry out this work, especially when we are able to award grants to help families that have nowhere else to go. It gives me a positive direction to channel my emotions and it is a way of honoring my mom. While at these events, I'm able to talk about her, talk about what we've been through while trying to make a change within a broken system. I feel that in some small way I am making (or attempting to make) lemonade out of the lemons we've been given. That is becoming my new mantra for life: making lemonade out of lemons!

For those who aren't up to speed on The DEANA Foundation, you can visit our website to learn more, but basically our goal is to raise money to help middle-class families (since they are the ones always left behind) with caregiving costs associated with dementia. We do this through donations, fundraising and hosting events.To date, we have been able to help 3 families in our community with our grant program. We have done so much over the past couple of years and have many great things in the works right now, so I'm optimistic that number will continue to increase each year.

Right now, we are planning our first annual Gala fundraiser, which we've given the theme of "Memory Masquerade". The goal is to raise money for the foundation, which we award as grants to families who need help. This will be our biggest event so far and is going to be a beautiful evening; our guests will get dressed up and enjoy a nice, catered dinner. We will have a photographer there taking photos and we are having a silent auction, which we've gotten some amazing items donated for (including a helicopter ride, an autographed copy of Kimberly Williams-Paisley's book as well as an autographed copy of "Still Alice", lunch with the Mayor, themed gift baskets...just to name a few of many fabulous things we are auctioning off...and the donations are still rolling in!). We'll have some entertainers throughout dinner and a guest speaker is coming from The Alzheimer's Association. We are also planning a very special tribute for those affected by dementia. I don't want to spoil the surprise of everything we are doing, but we are making some lovely, meaningful keepsakes for caregivers to take home and will also have a special presentation dedicated to all of those affected. Given the fact that this foundation wouldn't exist were it not for my mom, we are paying her a special tribute as well, which gives meaning to me and my family on all that we are doing. I'm really excited about the evening but if I'm being honest it has brought a bit of anxiety as well. For one thing, it's been a lot of work and at times it is overwhelming. It consumes my thoughts and I'm constantly second guessing myself. For another, I'm so afraid of failing. With all of the hours that I and my volunteers have put into this so far, and all of the emotion and energy and focus we have given- I don't want it all to be in vain. Nevertheless, I am optimistic that the evening will be a success and that this work will move forward! When I sit back and look at what we've been able to accomplish this far, I am proud of our work and feel motivated to keep pushing along, hard as it may sometimes be.

Even though I don't speak of it often on this blog, know that the foundation is still plugging along! It grows stronger with each passing year and I feel like we are finally gaining momentum and heading in the right direction.

To view our gala information, you can view our website or click here for our Facebook event page.

Tuesday, March 7, 2017

Five Years

Today marks exactly 5 years since my dad took mom to UCLA and received the dreaded diagnosis: semantic dementia. I remember it like it was yesterday; the tears in my dad's eyes as he delivered the news that night while standing in his kitchen. The struggle to understand and come to terms with what the diagnosis meant. The grief, the anger, the acceptance (still working on that one). The course of my and my family's life was altered drastically that day. The past 5 years have brought about the greatest heartbreak and deepest challenges of my life. Yet, I know that the worst is still to come.

Five years ago, I wouldn't have guessed that Mom would still be with us today. According to the pamphlet that UCLA sent home, the average duration of FTD is around 7 years (at a follow-up appointment, the UCLA doctor told us the average for semantic dementia is 12 years, though it's different for everyone). Although it's hard to know exactly when this all started for Mom, we can trace signs back as far as 2007. By late 2009, we knew there was definitely a problem. That means that, while it's been 5 years since diagnosis, Mom has been dealing with this disease for 8-10 years now.

At this point, she is in the later phases of the disease, nearing the last stage but not quite there yet. Cognitively, she is very late stage, but the final phase brings about a disconnect between body and mind; the mind stops telling the body what to do (walking, talking, swallowing, eating, etc). Mom is still ambulatory (mobile) but I believe we are starting to see swallowing issues now. I would say that a majority of the time that she eats and drinks her water, she ends up coughing on the water. She isn't completely chewing her food either. Sometimes when she coughs, she will spit out chunks of her sandwich. A few times, she has coughed so hard that she's thrown up and we've seen the same issue with her partially chewed food. Other times, remnants of her food remain in her mouth and she doesn't swallow it all. Luckily, all she eats is pb&j and that is pretty soft going down and dissolves after being in her mouth for a while. If she were eating meats or vegetables this would be much more problematic.

If I'm just being completely honest here, it's a blessing and a curse (maybe curse is too strong of a word) that she is still here with us, 5 years later. It's a blessing because we've had time to make preparations and process what is to come-although I don't know if I will ever be fully prepared for "the end". It's a blessing to be able to serve her and care for her, even though she may not understand it now; it is a growing and learning experience for all of us. This has stretched me in ways that I didn't know I could be stretched. It's a blessing because she is still here physically to hug and love on (even though she pushes us away, lol), to say I love you to, to remember. I think one of the things I fear when she's gone is that people will just forget her. The hard part with this disease dragging on is watching her suffer and lose all quality of life, watching her forget everyone around her, watching the tears as she struggles. It's hard to see my dad go through this; I know he struggles but he handles it like a champ. He doesn't ever complain about her, even when he's up 20 times a night with her (no joke!) In fact, just last night we were talking on the phone and he told me that if she wants to get up 10 times a night and fix sandwiches or look out the front door, he'll get up with her 10 times a night and he will re-tuck her into bed just as many times. "One day I will miss it," he told me. His strength, love and dedication is a great lesson to me (it brings tears to my eyes just thinking about it). [He is probably going to be embarrassed that I write this, he is very humble and doesn't see himself as the inspiration that others do].

Five years goes by in a blink. I'm fairly certain that we don't have another five years with her; I'd be surprised if we have two (although I never thought we'd make it this long!) But as long as she is here, I will continue to love her and care for her to the best of my ability. Like my dad said, one day we'll miss this.

Below are pictures of her progression, from before diagnosis and then from 2010-2016.


Before diagnosis


2010- right around the time when we knew something was wrong and were seeking answers


2011-a year before diagnosis


2012- her birthday, the year she was diagnosed


2013-our last family camping trip


2014-the year of dark make-up and (later) the blue eyebrows


2015-the best picture I could get for Mother's Day


2016-taken last Mother's Day


Not quite 2017, but close enough (taken at Thanksgiving)

Friday, January 20, 2017

Update on Mom

One question I get frequently is,

"How is your mom's progression? Does it seem to be a consistent downward slope or does it plateau before going down again?"

I used to think she was traveling a continual downhill slope; her progression seems fast at times. Six months ago she definitely seemed to take a quick turn downhill. Practically overnight, we had to transition her to diapers full-time due to the daily accidents she was having. She was eating less, sometimes going hours at times without fixing herself a sandwich. She even had a couple of incidences where my dad found her on the floor, unable to get up on her own. I thought the worst was quickly approaching and I had a terrible pit in my stomach for what was lurking around the corner. However, things seemed to have plateaued since then. There have still been slight declines in almost every area, but not the full downhill slide that I was expecting. In fact, in some ways things have improved. For example...the summer presented so many diapering and poop issues. I won't go into detail, but suffice it to say that those issues are not arising at the moment whereas in the summer it was a frequent (and sometimes daily) occurrence. I know it could change again tomorrow, but for now we are counting our blessings!

So here we are, at the start of 2017. I like to give a full update each year (sometimes twice a year, if I'm really on the ball). Comparing the last year to the present year always puts her progression into perspective. This is what Mom's stage is looking like as of right now:

LANGUAGE: The only real recognizable word is "Bud". She attempts to say my name; it comes out as "Cuh-suh-suh-suh". Every now and then we might pick out a familiar word, but she mostly speaks gibberish. There are some repetitive "words" that she says daily, but we aren't really sure what those words are. Sometimes we can figure out what she's saying by her gestures.

HYGEINE: She no longer brushes her teeth. On occasion, she will pick up the toothbrush off the bathroom counter and swish it in her mouth for 2 seconds before briefly running it under a quick stream of water and returning it to it's place. Her gums are very red and swollen and her teeth have seen better days. I picked up an electric toothbrush for her about a month ago and started brushing her teeth while she's in the shower; she doesn't remember to spit out the toothpaste. She cries the entire time I'm brushing, so I try to keep it brief. I'm not sure how much difference it's really making at this point, but at least we can say we've tried. When it comes to brushing her hair, she used to allow me to brush it for her while she pat her face with a make-up sponge (going through the motions of putting on her daily make-up). She no longer makes an effort to put on make-up and won't stand still long enough for me to brush her hair. I usually follow her to her bed after she's clothed from her shower and try to quickly brush her hair before she swats my hand away and lays down. The other day I was able to cut her hair again (it had to be done quickly, in the one minute that she sat down to eat her pb&j) and the shorter length does help with the hair washing and brushing.

BATHING: She does not participate in any of her own bathing. Six months ago she would hold out her hand and at least rub the shampoo onto her hair. She might do that every once in a while, but for the most part shower time consists of me getting her in the shower and her fighting me to turn off the water the entire time. Sometimes I try to sing to her and distract her a little bit; if I'm lucky she'll give me a grin but she really hates being in the shower these days. We have a system: I rinse her down, she turns off the water so I then wash her down with soap (while she tries to get to the towel on the other side of the glass). I then turn the water back on. I rinse her off, she turns off the water and then I quickly get in to brush her teeth, followed by one last rinse off. The whole while she is usually crying; this is relatively new. She really hates showering. I always feel so bad when she starts crying, but it has to be done. When I'm finished, I then pass her a towel but she doesn't dry herself off. She grabs the towel and then attempts to put it on the floor to stand on (despite the fact that I already have a towel laid down on the floor for her). I dry her off, top to bottom, and I get her clothes on her. She will hold up her arms for her shirt and help pull up her pants.

TOILETING: Mom is in diapers full-time, mainly because we never know when she's going to end up wet. She does use the toilet still, interestingly enough. But she usually wakes up with a full diaper in the morning and is wet by the end of the day.

EATING: Mom's been on her pb&j kick for quite some time now. The most significant change within the past 6 months in terms of her eating is that she longer drinks her Ensure. Now she is on a 100% pb&j diet. My dad gives her vitamins with her meds and she only drinks water.

ROUTINE: I remember when her routines were such a headache for us because we could never get her to stray away from it; she was so rigid and so unflexible. She wouldn't even take a pill one minute too soon! She no longer has a schedule but she has a routine of sorts and it usually runs in 20 minute cycles. All day long, she makes a circle from her bedroom to the kitchen to make a pb&j sandwich, to tapping her plastic medicine dish on the counter for medicine, to banging on the front screen door to get out, to looking out the window, to going back to her room to lay down. As she makes her way down the hallway, she tries opening every door along the way. We've had to add baby locks on the bathroom door (because she was getting into the soaps and rubbing them on her face) and dad now locks the office because she was pounding on the computer keyboard, which was messing up the computer. Once she lays down, we may get a 5 minute break (sometimes longer if we're lucky!) and then the cycle starts again. If the weather is nice and we are able to take her outside, it helps to settle her down as she sits on the patio and watches every passerby. We've had a lot of rain this winter, so she hasn't been outside much which has added to her stir-craziness. She rarely tries to go for walks anymore and she doesn't ask to go to Ellen's (this is all new within the past 6 months), although I suspect she might be trying to ask to go to her sister's house; it's too hard to understand anymore. Since she wants to make pb&j constantly (and usually only takes 1-2 bites out of each sandwich she fixes), we cut the bread into quarters for her now to cut down on waste. If her dish banging becomes too much to handle, we slip some Jelly Belly jelly beans into the dish and she swallows them as if they are medicine. So I guess I lied when I said she's on a 100% pb&j diet...she gets those jelly beans in there ;) She does wind down at night, but still gets up several times during the night and goes about her routine, which makes for lack of sleep for my dad. But he never complains about it. He just does what he has to do (and I have no idea how he does it!)

There you have my bi-annual report on mom and her progression. Like I said, she has, for the most part, plateaued over the past 6 months. But things don't last for very long with dementia. The scary part is thinking about what the next downhill slope will bring. She is so advanced in the disease that the next big hurdles to face are issues with choking and swallowing, mobility, complete incontinence and muteness. I wish that she'd never have to go through any of that. Every decline breaks my heart more and more. :(

Here are a couple of recent photos of mom, taken on Christmas. It was a Christmas miracle that we got her looking (and even smiling!) in the direction of the camera!