Thursday, July 20, 2017

Difficult Update

I was halfway through writing another post, all about Mom's hospice assessment on Tuesday, but after events of this afternoon, all of those details seem long and drawn out and unnecessary; quite honestly I just don't have the energy for it all. To summarize the events of the past few days, Mom was put on hospice on Tuesday. We were a little surprised that they finally approved her, given that she's still ambulatory (the reason why we were rejected before). This time, we had a great nurse who listened and looked at all of the evidence (food logs, weight logs, etc) and pled our unique case to the doctor. They both agreed that she was appropriate to receive the service and we breathed a sigh of relief; finally, we are receiving help! The past couple of days have consisted of nursing visits (by both the RN as well as the bathing nurse), social workers and finally, today, a visit from the doctor himself. We were hoping for some insight from the doctor of what to expect in the coming weeks and possibly months, and I think that even though we knew what we were facing, we were still caught a little off guard with the news he delivered.

To start with, Mom's eating and drinking has dwindled down to practically nothing. In fact, for the past 2 days she has only had a few bites and a few sips of water. She has been sleeping for long periods of time throughout the day; I'd guess that she's been sleeping close to 20 hours out of the day. We have noticed some blood in the urine bowl and dad wanted me to ask the doctor about that (dad had to work; the doctor was scheduled to come mid-morning so I told him that I'd be there to meet with him).

The doctor arrived mid-afternoon. I'm very thankful that my brother and sister-in-law were there with me to speak to him, for support and also so they could hear what he had to say. When he arrived, the three of us went back to Mom's room with him so he could see her and talk about her situation. He had already reviewed the detailed notes given to him by the nurse and we filled him in on her lack of eating and drinking over the past couple of days. I also explained that she appeared to have blood in her urine. He started to tell us that she was in fact, shutting down, but he hadn't given us any kind of timeline at this point. My brother and I brought up our concerns and reservations about leaving on our upcoming family vacation (we had planned to travel to Colorado for my cousin's wedding in a couple of weeks). At that point, he gave it to us straight. He told us that we should not go anywhere. He then told us that we were probably looking at 2-3 weeks, a month at most. The blood in her urine indicates renal failure and he said that within a few days, her kidneys would likely be shutting down. After that, it will be a domino effect with her other organs. He told us to contact any family members or friends who would like to see her and to tie up any loose ends. He stood with us in silence as we absorbed the information and held back tears. We asked some more questions and he answered them all, very compassionately yet matter-of-factly.

I have been feeling like the time is getting close, but I honestly wasn't expecting this news today. No sooner than the doctor drove up the street to leave than my dad drove down the street, arriving home from work. He asked if the doctor had any insight for us and that's about when I lost it. It was very difficult news to have to deliver. There was an initial shock and as you can imagine, this is very difficult news for everyone to come to terms with, but most especially my dad. After some time to let it all sink in, Dad asked me to call certain family members and friends for him. Please don't be offended if you didn't get a personal call from me; this has been a little overwhelming for me, too, and I asked some Aunts/Uncles to help me contact everyone. At this time, he really isn't up to talking to anyone on the phone. He gave me permission to give updates on this blog, but he is asking for friends and family members to please not make posts about this on Facebook; he would rather this be the one spot for people to get their information from. Also, it's just too hard for him to see these posts right now. While she is our Mom, our sister, our friend, she is his wife. As much as we love her, nobody can be hurting right now as much as my dad.

For those family members and friends who would like to visit with Mom, he is open to having visitors. I would suggest for those who want to do that to reach out to and coordinate with me so that we don't overwhelm Mom with too many visitors at one time.

Thank you all for your thoughts and prayers throughout this journey and especially now, during this difficult time.

Monday, July 17, 2017

Beginning of the End

I've gone back and forth about writing this post. I've written and re-written and debated if I was being overdramatic about the way things are going. I thought maybe things would improve and that Mom was just having a bad day (or two). But in the pit of my stomach, I know the tides are changing. We are entering the end stages of this disease.

From the beginning, we've known that this illness would be terminal. The only question has been how it would play out. Many people are taken from pneumonia or other infections; others simply stop eating. It is the process the body goes through when shutting down. Over the past 8 months, Mom has lost over 60 pounds. Every month, and now every week, she is losing weight (she lost another 4 pounds last week). Her eating has gradually declined over the months. Last fall, she was eating full-sized pb&j sandwiches. Then she started only eating about half, so we were making her half-sized portions. Eventually, those were cut down to quarters. Over the past couple of weeks, those quarters became eighths, and finally, within the past couple of weeks, she isn't finishing the eighths. If we are lucky, she will take a couple of bites before getting up from the table and walking away. Many times (more and more) she will sit down to eat, watch us make the sandwich, and then stare blankly and eventually walk away without taking any bites. A couple of months ago, we started keeping her food log again where we write down the time and amount of food she eats. From there, we are able to see how much she is eating per day and even per week. Up until the week of June 17th, she was averaging about 3 1/2 sandwiches a day (give or take, depending on the day) and her weekly average was 21 sandwiches. A couple of weeks ago, that average changed to 15 sandwiches per week and for the past two weeks it's dropped down to 10-11 for the whole week. As I am typing this, I am sitting in her living room while she sleeps in her room. It is after 11:00 (am); she woke for an hour but has not eaten or drinken a thing at all yet today.

Even more worrisome than the food situation is the water. She only drinks when she eats, so you can imagine where that is going. For a few weeks now, she's only been finishing one water bottle (16 oz) of water. Now, it's a good day if she gets in a full 16 oz. Most days she'll drink about 12 oz and on a few bad days she drinken as little as 8 oz. Basically, she's living on about one sandwich and 12 oz. of water a day; for this week, anyway. Each week gets worse and worse. As you can imagine, it's only a matter of time before this takes it's toll and her body begins to shut down, and I think it already is. I believe she is becoming dehydrated already. She has little urine output, her skin is extremely dry, her cheeks are looking sunken in. She is sleeping a lot throughout the day. She will sometimes nap for hours during the days; once she wakes up, she'll pace around for a bit before returning to lay down again. She hasn't been "talking" much. Her voice sounds faint and weak when she does attempt to speak, which isn't often. Her interest isn't held on anything for more than a couple of seconds. We are having trouble getting her to take her medicine (swallowing is part of that problem). She has had a couple of falls as well. Last week, my dad went to check in on her in the morning and he found her laying on the bathroom floor, halfway into his closet. The bruising up and down her side confirms our suspicions that she somehow fell and was unable to get up.

I know what you all might suggest: hospice. At our last evaluation, they told us there was nothing they can do until she either: no longer walks, develops an infection/pneumonia (has some other medical need), is in pain. Even lack of eating or dehydration won't qualify her. Yet, home health was coming in for a few weeks and has decided to close her case because there is nothing they can do for her; they are in the business of helping people get better (the nurse agreed that hospice is more appropriate for the situation). So right now, Mom is falling between the gaps of our healthcare system. I'm not going down without a fight, though. After talking with several people in my online FTD support group, and upon their insistence, I have put in another call to a different hospice company. Speaking to those who have been through this, or are currently going through the same thing, my initial instinct has been confirmed: that Mom's time left with us is limited. Whether we have weeks or months, I can't say. If she continues her decline at this rate, I would say a few months at best. Needless to say, these are rough waters for us right now :(

Friday, July 7, 2017

First Annual Memory Masquerade

The past few months have been incredibly busy: taking care of my home and family, keeping up with my home sewing business, chauffeuring kids to various activities, taking care of Mom (with bathing and nurse visits and whatnot). To top it all off, I had the crazy idea of starting a non-profit foundation a couple of years ago and we decided it was time to put together our very first charity gala. We gave it the theme "Memory Masquerade" with the idea that it would be an elegant evening that would allow us to come together and honor the memory of our loved ones who have been affected with dementia. The masquerade took 7 months of planning and prepping-it almost felt like planning a wedding! We had to pick a venue, choose a caterer and a menu, find entertainment, work out decoration details, find sponsors and donations, make connections within the community, plan a program. It was a lot of work! Luckily, I had a committee of fantastic volunteers; I could not have done something like this on my own. I feel like a fire has finally been lit with the foundation. People are learning about who we are and people want to get involved. There have been many moments of discouragement along the road, times when I've questioned my sanity at the attempt to start this charity in the midst of my crazy life. But the past 6 months have brought about much growth and all of the efforts that we've put into this are finally beginning to pay off!

To start with, we have received our very first grant, through the County of Riverside, to help fund the event. It wasn't large (the largest grants they are giving out are $1,000, which is what we received), but it helped a lot and gave us (the committee) the confidence we needed to move forward. For the first time, we were able to secure sponsors for our event and we received some great donations for our silent auction! Some of the awesome things we received include a helicopter ride, lunch with the Mayor of Riverside, an autographed copy of Kimberly Williams-Paisley's book, professional photography packages...the list goes on! Best of all, we had support from friends, family, and others within the dementia community.

In the months before the event, I became very anxious and worried. What if, after all of this planning and prepping, nobody showed up? What if we only broke even with our overhead costs or worse, what if we ended up in the negative? Other (more experienced) members of my committee tried to reassure me that no matter what, it would be a success. They told me that if we got 40-50 people out to a first-time gala, it would be a success; if we broke even in our expenses or made just one or two thousand dollars, it would be a success. I told them I wanted to shoot higher: my goal was 100 people and $10,000. I saw some of my volunteers wince as I said it. They told me I should expect half of that. I started to second guess myself. I decided I better not set my hopes too high. If we could reach those numbers, I'd be thrilled; but if we only had 40 people show up, I knew I'd be really discouraged.

Fast forward past all of the tedious details leading up to the night of the gala. Nobody wants to read about all of the sweat and tears that went into it! Suffice it to say that it was a lot of hard work but I am proud to say that the evening was a big success. We ended up with 75 people on our guest list and we raised over $9,000!! (That does NOT count in the value of everything that was donated to us for the event!) Even though we didn't quite reach the goal I had set, it exceeded my realistic expectations of the evening. We had rotary club members and representatives from the city and the Mayor of Jurupa Valley (a long time friend of our family) came and emceed the event. One of the greatest things for me, on a personal level, was to have so many family members come out to support what we are doing. My dad and his sister and brother-in-law came, one of my mom's brothers (and his wife) came, my mother-in-law, father-in-law, and a couple of my husband's siblings came. My twin brother and his wife came in from Arizona. For most of these family members, it was their first time attending a foundation event. It meant so much to me to have them all there. I was so happy that they could see what it is that we are accomplishing with the foundation.

We also had a very touching tribute, honoring those who have been affected by dementia. It started with a slideshow of my mom and then transitioned into a slideshow of others who have been affected. My husband put hours into this slideshow and I must say, it was a masterpiece. I debated on sharing it online, but I've decided I am going to save it for another time. We also had a beautiful table decorated to honor those currently fighting/those who have lost their battle with dementia. We made keepsakes for the families to take home with them.

There were some things that I would do differently for next year, but all-in-all it was a very successful event. Our guests all seemed to enjoy themselves. We had a photo booth (with a photographer on spot) which really added a lot to the evening. The decorations turned out beautiful. I think everyone went away feeling that it was a lovely evening. As we were cleaning up, one of our volunteers (who has been to just about every charity event in the city) made the comment to me, "This is by far THEE best first time gala I have EVER been to." Needless to say, I was on cloud 9 for the next few days!!

It is hard to put into words what this foundation means to me. It is so much more than just raising money to help other people. Of course, that is why I started it; I wanted to help other people and build a community of support for those going through this horrible disease. But this is also a way for me to remember my mom, to keep her alive and a part of my life. When she is no longer here with us physically, this will be her legacy. Through this foundation, we are able to keep her memory alive and honor the life she led. We are able to give people that same opportunity-to honor and remember their loved ones. It is so easy to be overcome with grief when going through this journey, but this has truly helped me to work through that grief. It gives me a sense of purpose and the opportunity to "make lemonade out of the lemons". I am excited to see where this next year brings the foundation, and really looking forward to making the Memory Masquerade even bigger and better next year!

Parts of the event were videoed and will be featured in the documentary that is being filmed about our family journey with dementia (it's due to be completed by the end of this summer!) I will definitely share that documentary when it is finished. In the meantime, here are some fun photos of the evening!
Some set up and decoration pictures:
Some fun pictures with our backdrop:
With the Mayor, giving The DEANA Foundation two thumbs up!
So grateful for all of these amazing volunteers!
Welcoming guests to the Memory Masquerade.