Tuesday, August 15, 2017

Memorial Services for Mom

My dad asked me the other day if I was going to continue writing my blog. I've thought about it a lot. What can I write now that this is all over? There are still so many things I want to say, things I want to write down so I can remember. But beyond that, I'm not sure where to go. Over the next little while, I may write down some of the thoughts and experiences that we had during Mom's last moments of this life. My dad and I thought it might be a good idea to keep this going and share helpful information, updates with the foundation, etc., so we will see where it goes. Hopefully people will want to keep reading, but if not, it's therapeutic for me to write anyway.

For this post, I wanted to share about Mom's funeral. There were some friends who weren't able to make it to the service but wanted me to share this with them.

Mom's service was held last Friday, August 11th at the church building she attended as a child and then later moved back to (about 30 years ago). This place was her other home. She spend many hours worshipping, praying, teaching, fellowshipping and serving in that building. It seemed only appropriate to hold her services there.

Despite the sadness and loss, it was a beautiful service. It's an interesting thing: years before Mom passed, she started talking about what she would want at her funeral, "just in case". She shared who she thought would be good at giving a eulogy. She picked out her favorite hymns that she wished to have sung. She wanted my sister and me to sing (the one wish I just couldn't honor...I didn't feel strong enough to sing, but my sister did a beautiful job). My family and I took notes of everything we had remembered her planning for her funeral and put together a beautiful program, honoring her and the life she lived.
We did have a viewing beforehand. Dad really wanted her to look like herself as much as possible, and I know that Mom would've wanted to look her best. Mom had told me on several occasions that she wanted me to do her make-up (she didn't want it left to a funeral home who didn't know her style), so I gathered all the strength I could to honor that wish. It actually ended up being a sweet thing, but I'll save that for another post. Her wonderful hairdresser, who she'd been going to for close to 25 years, went to the mortuary and cut and styled her hair for us. What an amazing gift that was. She looked beautiful and peaceful, as though she was sleeping. In all of the times I'd thought about a funeral, I was always uncertain if I should bring the kids or not. But it seemed to be natural to bring them to the funeral. They all had their sweet moments with grandma before she passed, and they would've been very sad to not attend her funeral and give their last good-byes.

David Robinson put together a beautiful eulogy. My parent's love story was the highlight, a love that saw my Mom through her final days. I'm going to see about getting a copy to add to this post.

We used a slideshow that my husband put together for our gala (you can view the slideshow by clicking here). I absolutely loved this slideshow, especially the video footage that he was able to get in there. I feel like it brought her back to life, if only but a minute.

My sister sang a beautiful song, which I know my mom would be proud of. She loved Josh Groban (the original artist who sang this song) and the words were so appropriate to Mom. I don't know how my sister held it together, but she did. Her friend got some video of her singing.

Mom's brother, Jeff, also spoke. They were the closest of the siblings and it was sweet to hear his memories and stories of my mom from her childhood. I also spoke, on behalf of my family. I shared some of the things that Mom taught us in this life, little life lessons. Some were more serious, while others were humorous and I included some stories and memories to illustrate how she taught us each thing. This included things both before and after her dementia. One thing my dad and I talked about was not leaving out the dementia parts of her life. Hard as they sometimes were, this was still a part of her life and we loved her despite the changes that the disease brought on. In fact, we have many funny stories and memories during this time of life, and we will cherish those forever.

Lastly, we had closing remarks from a dear friend and also leader in our church, Carl Harris. He gave us a beautiful message of hope and healing, reassuring us that this isn't good-bye, but just a "see you later." Mom is happy and free. She is reuniting with her parents and other people she loves. We are the sad ones, as we have this void without her here. But it isn't the end; we will be together with her again someday.

After her funeral service, we traveled to the cemetery where she was laid to rest. Something kind of comical (at least, now it's comical)....when we arrived to the cemetery, the plot that was 2 spaces to the left of my grandparents was dug up. We were a little worried about this because my dad had been thinking that he bought 2 spaces to the right; we thought they'd dug up the wrong grave! Turns out, Dad had looked at the map wrong, so for the past year and a half, he's been taking pictures of the wrong spot. Ha ha. We were just relieved that they didn't dig the wrong spot!

Mom's kids and grandkids each got to keep a purple rose from Mom's arrangement. Dad also bought carnations for each person to throw down on her casket after it was lowered to the ground. Something that brought tears to our eyes was when they lowered the casket; my 3 year old nephew watched as they lowered her and repeatedly said, "They dropping grandma, why they dropping grandma?" I didn't think that he really understood all that was going on; just goes to show that kids pick up on more than what you think. Sweet baby.
Our wonderful ward (church) family put together a nice luncheon back at the church for all of our family and close friends after all of the services were done. It was nice to be able to come back and sit down with family and not have to worry about fixing a meal or going out somewhere to buy ourselves food. They even decorated with purple (which was our theme for the day, since purple is the color for Alzheimers/dementia awareness). They even packed up the leftovers and sent them home with us, so we didn't have to worry about cooking that evening or the next day. What a burden that was lifted from this sweet service that they did for us! We had a slideshow playing (with lots more pictures that people sent in of Mom) during the luncheon and my husband and I put together a track of some of Mom's favorite music that he had playing in the background. I kept myself busy in the week before the funeral by sewing up pillows for all of Mom's grandkids, made out of her shirts, that they each got to take home with them. I embroidered a poem onto the fronts of the pillows, a message from Grandma to her babies.
"This is a shirt
I used to wear
Whenever you
Hold it
Know I am there
Love, Grandma"
My dad said it perfectly, in one conversation we had after Mom's passing: it's like we are mourning 2 losses here. One is the loss of the person she was, the life that we had with her (the life that Dad and she had built together). The second is the person she became. No more obsessive tapping on the doors, no more giggling like a little girl when we give her hugs, no more grabbing dad's hand to take him to the back room to show him the laundry pile that she threw into the corner of her bathroom floor. We miss those little things, yet we still also grieve the person she was before all of this. It's a complicated grieving process.

We are very grateful to all of our family members and friends who came to Mom's service and who have been here for us over the past few weeks. We are thankful for all of the wonderful caregivers that have helped us on this journey; all of her caregivers were there and they have become like family to us. We feel another void not having them around everyday. Several family members and even friends traveled from afar to come pay their last respects to Mom. I had friends who didn't really know my mom, but who came just to be a support to me. We've had meals brought in, gifts left for us, sympathy cards, flowers, phone calls, texts...the list goes on. My dad and I both want to express our deepest appreciation for all of these kind gestures. We couldn't get through this without the love and support that we have received from everyone around us. Since the week before Mom passed, we have had a constant flow of family of friends coming and going. Dad's house hasn't been empty at night since Mom's passing and there have been very few moments that either one of us have been alone. On Sunday, the last of the family members left for home and we are now left to settle into our "new normal" without Mom here. It is hard, but made so much more bearable by the love that we have surrounding us and the faith and hope that we will be reunited with Mom again someday.

Monday, July 31, 2017

Funeral Services

I wanted to put out all of the information for my mom's funeral services for all of those who wish to attend and honor her. My cousin is getting married in Colorado this weekend, so we didn't want to infringe on her special day. For this reason, we are waiting until next week to hold services for my mom. The information is as follows:

Friday, August 11th
8660 44th St, Jurupa Valley, CA 92509
Viewing: 9:00am-10:15am
Family viewing/prayer: 10:15-10:30
10:30-12:00ish: Funeral service

Following the service, any of those who wish to travel to the graveside are welcome to follow us over to Crestlawn Cemetery on Arlington Ave.

We felt like it would be meaningful for everyone to wear something purple. It doesn't have to be the whole outfit; if you want to wear black or gray or whatever, you can add a purple accessory (a tie, scarf, jewelry, etc). Purple is the color for Alzheimer's/dementia. It isn't required, of course, but we thought it would be beautiful to incorporate purple into the service.

Thank you to everyone who has called, texted, visited, sent dinners and gifts, etc. Your love and support means the world to us <3

Saturday, July 29, 2017

Last Breath

It is with a heavy heart that I write this post to let you all know that my dear mother passed away this morning at 6:40. Our prayers were heard in that it was a peaceful passing; there was no gurgling or gasping for air, her heart and her breathing just gradually slowed to a stop. She had her 3 children, beloved husband, daughter-in-law, sister-in-law and oldest grandson by her side as she took her last breath. Afterwards, her siblings and other family members and in-laws (and grandchildren) all surrounded with her love in her home. A close friend and clergyman from our church came over as soon as he heard the news and left our family with a sweet prayer as we all crammed into her bedroom by her bedside.

While I know that she is freed from her pain and suffering, and I know that she is having a beautiful reunion right now with her parents and other loved ones, we are all left broken hearted. This cruel disease took her from us way before her time. Her departure from us leaves a huge hole that can never be filled.

Thank you all for your prayers (I believe they did make a difference) and all of the thoughts and words of comforts. Thank you to those who came to visit with us this week and give my mom love before she left. Thank you for the dinners and the goodies left on the porch. We are blessed to have so many wonderful people in our lives to help us through our grief.

I will post an update as soon as we confirm funeral services (which will likely be done on Monday). I can say that we are aiming for the 11th or 12th of August, due to the fact that my cousin is getting married (in another state) next weekend and we don't want to take anything away from her special day. I will post an update as soon as we know so that friends and family members from out of town can make arrangements to be here to honor my mom.

Friday, July 28, 2017

Friday 7/28

Mom is still hanging on. She is one heck of a fighter. She has been sleeping (comatose) for over 48 hours now (not counting the 12 hours before her abrupt waking on Wednesday morning). Up until last night, her breathing was 6 breaths a minute but it has changed to more shallow breathing with short periods of apnea in between. There have been a few times where she has gotten gurgley (when we've moved her or given her meds). It's a little scary to hear her when she gets like that.

She has had a fever for the past few days which has been rising daily. The Tylenol hasn't been helping to manage it at all. Today, it climbed up to 102.5, so we made some ice packs to put under her armpits and neck to help cool her off. Despite the fever, her feet and extremities are cold. We haven't been able to get a blood pressure reading on her arm today either. The nurse came to visit today (we've had nurses' visits daily) and she explained to us that the fevers, cold extremities and inability to read the blood pressure is due to the recirculation of blood. As her body is shutting down, the blood is circulating more to the vital organs (in her core) and is basically being cut off from the other parts of her body. Because of all of this added work on her heart, her pulse is up to 135. The nurse was very compassionate and spent some time with us explaining the process and asking if we had any questions (we've had Aunt Sharon with us for most of the week, and she's already explained all of this to us so we already understood her condition). When she left, she said she'd see me at our next scheduled appointment on Monday, but that she honestly didn't think Mom would still be here by then. The good thing, the nurse said, is that she seems to be at peace. She doesn't appear to be in pain; she is in a content, deep sleep. She is surrounded by many family members and friends who love her. It is now up to her when she wants to go.

Mom has had a lot of visitors this week and it's been sweet to see the friends and family who have come to give their good-byes. We've had family members fly in from out of town and she even had her high school friend, Cheryl, drive 7 hours this past weekend just to spend one afternoon with her. All of her caregivers have come to spend time with her, all of her siblings, some friends from church. All week has been a family sleepover with grandkids who don't want to leave and her kids all around her. Even though it may seem like she doesn't know what is going on, her eyelids will sometimes twitch when someone speaks to her. I do believe she hears us and knows that we are all here. That's probably why she's still here-she's enjoying all this love that she's been receiving.

Thursday, July 27, 2017

Wednesday 7/26

I didn't get a post up last night because, in all honesty, we thought her time was close and we were all gathered around her into the early hours of the morning (until we all started passing out ourselves from sheer exhaustion of the past few days).

After my last post on Tuesday night, we went to turn Mom, who had been in a deep, unmoving sleep for hours, and she was non-responsive. She was still breathing, but it had become labored and she was only taking 6 apnea-like breaths a minute. She was running a low grade fever and she didn't even flinch when we touched or tried to move her. We gave her a Tylenol suppository, checked her blood pressure, moved her body, changed her diaper...and absolutely no response to any of these things. By all accounts, she seemed completely comatose. I called the hospice nurse helpline and they sent out a nurse to check on her. The nurse arrived around 11:00 pm and I could tell by the look on her face that she was concerned. I could tell that she was choosing her words carefully and hesitant to say what she was thinking so I told her that we understood what the breathing meant. She got tears in her eyes and told us that she was so sorry. She felt that, in the state she was in, she was likely to go by the next day (yesterday). By the time we were finished talking and assessing, it was midnight, and I sent out some texts to her siblings to let them know, in case anyone wanted to be by her side. I called my brother so he would know to get here soon (my sister had already come over just before the nurse got there). I also called Aunt Sharon, who had been here earlier in the day and wanted to know if anything changed. She and Uncle Tim came over right away (and she's been here ever since, as Mom's personal RN).

None of us got any sleep that night. We each took turns to have a private moment with Mom to say whatever we wanted to say to her. We sat by Mom's side and held her hands...and just waited. All of the sudden, at 5:30 in the morning, Mom woke up and almost immediately started trying to get up, but she hardly had the strength to sit up (it required someone sitting behind her to hold her up). She became very agitated and restless and was looking around at each person in the room. At different times, she would grab our hands, one time she looked at me and brought her hand up to my face. Other times, she would stare intently at different spaces in the room where nobody was sitting, yet it seemed that she was looking at someone. [There was also a moment earlier in the day where she rolled over in her bed and stared straight into my empty rocking chair (I had moved to her bed to rub her legs). She looked right where I'd been sitting and then slowly reached out her hand to the armrest, just like she had been reaching out for our hands throughout the day]. She also kept pointing to the corner of the room and fixing her gaze there. Sometimes, her face looked pained and she kept trying to turn over to get comfortable. We gave her some meds to try and calm her but she wasn't settling down. The nurse came by again and gave her a stronger medication to help her relax and finally, around 11:00, she curled up in her corner again and went back to sleep.

My brother got in at noon and spent time by Mom's side, rubbing her arm and stroking her hair. Mom had some visitors trickle in throughout the day, including a couple of her caregivers who have been relieved of their duties but still wanted to be with Mom (they've come to love her over the time they've cared for her). Her bathing nurse also made a visit and we gave her a bed bath. She slept through it, although she was a little more responsive his time around as she kept trying to turn back over on her side.

Her breathing remained the same throughout the day, 6 breaths a minute. She didn't wake up again, but she seemed to be comfortable and not feeling any pain. That evening, a family friend (and Ecclesiastical leader from our church) came to visit our family. He gave my mom a sweet prayer blessing, blessing her with the comfort to know that her family is here and loves her, that we will be okay and lean on each other to get through this. He told her that there are angels on the other side, family members who are waiting to help her on both sides. He also left my dad and me with a prayer and blessing of strength and comfort to get through what is to come. It was a nice visit and he left us (or at least me, since I can only speak for myself) with comfort and a little more peace. The anxiety and knots in my stomach that I have been feeling for the past couple of days have finally settled. I needed that prayer.

Later that night, we rolled Mom to a new position and heard some rattling in her chest. Her pulse has gotten weaker and Aunt Sharon felt like she was getting closer to the end. We all gathered around her bedside: my dad laying by her side and her kids and grandkids surrounding her and rubbing her and holding her hands. We stayed like that for a couple of hours, until the exhaustion of the past few days became too much and we started to fall asleep, one by one. The kids retreated to their campout on the living room floor, my brother and his wife took the bed across the hall from mom, and the rest of us crashed on Mom's floor or in chairs. Dad didn't move from her side on the bed. Throughout the night, we all awoke at different times to check on her. Miraculously, she is still here with us this morning. Her brother flies in from Pennsylvania at 1:00 this afternoon, and I told her a few day ago that he would be here. They were very close throughout their lives and he's the only sibling that hasn't been here to give his good-bye. I do believe that she hears us and knows us at this state and several of us feel like maybe she is waiting for her brother. We also have a couple other family members coming (my daughter comes at 4:00 today and my Aunt Peggy, dad's sister, comes at 7 am tomorrow). When Mom is ready, she's ready. Until then, we are keeping her comfortable and cherishing our last moments to love on her in this life.

Tuesday, July 25, 2017

Tuesday 7/25

The day started at 1:00 this morning; I was startled awake by the sound of Mom coughing next to me. I popped out of my chair and she was coughing stuff out of her mouth. Because she can't swallow, the medicine residue and saliva had built up and she was (luckily) coughing it out. I called out for Dad, who wasn't on his air mattress beside her. Of course she waited for the moment he went to the bathroom to do this. After the incident, dad slept beside her on her hospital bed. I don't think the nurse did a good enough job explaining this part to me. I don't know what I was expecting, but I wasn't really expecting all of those secretions and since then we have been diligent about swabbing her mouth to remove the excess residue.

By 4:00 am, Mom tried to sit up. This time it was with a lot of effort. She became very restless, laying down and then sitting up, pointing to the doors (like maybe she wanted to go out for a walk). We gave her more meds but she was still restless for another hour and a half. I sat at the foot of her bed and rubbed her legs and feet in hopes of soothing her and that seemed to settle her down; she finally fell back asleep around 5:30. By 7:00, she was awake and restless yet again. She wasn't due for meds quite yet but she seemed very agitated, like maybe she was in pain. We gave her her next round of meds a little bit early and she tried to sit up again. She couldn't stand, but Dad was able to hold her into a standing position to give her a stretch and put her in the wheelchair; we thought maybe she'd like a little ride around the block. The morning air was cool and she did seem content as we pushed her up and down the street, but by the time we got home she looked ready to rest again.

Throughout the day, this pattern of restlessness and agitation continued. She seemed uncomfortable and in pain. I spent a lot of time rubbing her body in hopes of calming her. She seemed to relax a lot more when people were touching or rubbing her. I brought my essential oils and used them on her legs and back, hoping her help her find relief. In the meantime, I had put a call in to the nurse, who made her way to the house around 10:30. She agreed that Mom seemed to be uncomfortable and in pain, so after consulting with the head nurse and doctor, they decided to up her dosage of morphine. It took a while to kick in and there were still spurts here and there where she would wake up and start turning in her bed. She wanted to keep sitting up, but by the end of the day, she was too weak to do it on her own :(

By late afternoon, she finally settled down and fell into a sleep and I began to notice small changes in her breathing. My Aunt Sharon (the RN) also noticed. It is as if she is breathing in, holding for a few seconds, and then releasing. I know what this means. She has been laying in the same position for past 3 1/2 hours without flinching. I fear that when I am finished writing this post and go to try and turn her that she won't wake up from her sleep.

I'm not gonna lie, I am really struggling today. Dad has been busying himself with cleaning up the house. I know it is extremely difficult for him to see her at this stage; he was hoping beyond hope that it wouldn't come to this. He was hoping for the miracle that she would go quietly in her sleep. It is devastating to see her like this. My heart feels like it is breaking into two. I have prepared myself as much as I possibly could; I've read and learned all I could to mentally strengthen myself for this day and now that we are here, I am breaking. I don't know if my heart can take it.

My brother drives back in tomorrow night. My Uncle Jeff, Mom's brother, flies in from Pennsylvania on Thursday. My daughter, Maurina, flies in Thursday afternoon and my Aunt Peggy early Friday morning. I am hoping that they each will have a chance to say good-bye. And I really need them here to help me get through this. I know my dad does, too.

Monday, July 24, 2017

Monday 7/24

Last night I slept at Mom's house, just in case Dad needed me in the night. She seemed to sleep pretty well, until the morphine wore off around 3:00. As soon I heard Mom's bedroom door open across from my old bedroom that I was sleeping in, I sprung awake. I met Mom in the hall, who was being guided by Dad as she shuffled slowly down the hallway. Dad was bracing her, but she was very wobbly and looked very weak. Dad carefully walked her to the living room and back while I got her next dose of morphine ready. After giving her her meds, and changing her diaper, we were able to get her back into bed and Dad laid on one side of the bed while I laid on the chair next to her. It seems like 4 is the lucky number; she is content for about 4 hours until she due for her next dose of morphine. At 7:00, she sat up in bed (while we prepped the meds) but she didn't get up to walk this time; she was too weak. The next time she sat up was 10:00, and still she was unable to walk. It took great effort for her to even stand up, and that was with her arms around our necks and us bearing her weight to help her stand. We brought in the wheelchair and got her and took for a short walk outside. Our dear neighbors from down the street (whose daughter was my best friend all through grade school) were coming over to visit Mom at that same time, so they walked with Dad and me up the street until it started raining and retreated us back into the house.

Throughout the remainder of the day, Mom was unable to regain her walking ability. We took her for a few walks in the wheelchair, but it is a great effort to get her in there and I fear that tomorrow it may be too difficult for her. Luckily, her hospital bed arrived today and that has been helpful in positioning her more comfortably and getting her up into a sitting position. The nurse also made a visit. She has had a few low-grade fevers off and on but not high enough to warrant the Tylenol suppository. Her heart and lungs sounded okay, but her oxygen level dropped a little too low (87) so the nurse told us to keep oxygen on her. I thought she was going to rip the tubes out of her nose and she has fussed at them a couple of times, but she's actually kept it on most of the day.

Mom had quite a few visitors today and to be honest, it was a nice distraction for us. Mom laid and slept with her visitors sitting by her side. She was peaceful for most of the time, until the meds started wearing off. When the meds wear off, she starts to get restless. Her faced has looked a little more pained and she's been rubbing at parts of her body that seem to be hurting. I (and others) have been rubbing her back and legs to help her discomfort. I rubbed her legs and feet with lotion hoping that it might soothe her. Some of the older grandkids have been trying to help her get comfortable as well: stroking her hair, holding her hand, adjusting her pillows, and giving her rubs, which has been really sweet. She seems to enjoy the rubs and on several occasions her hand will slowly slip out from beneath her blanket to reposition my hand on a particular spot that she wants me to rub. There is one spot on her back-hip area that she keeps moving my hand to. If I even slip a few inches below that spot, she will move my hand back where she wants it! At least we know that she's finding the comfort in the rubs.

For now, I have kind of moved myself in to Mom's room. My husband brought in my comfy recliner from home and it's parked next to her bed. Dad has set up his mattress on the other side. Dad's taken his leave from work and my husband has been very understanding with my need to be beside her. Luckily, the kids all want to be here too (along with their cousins). I think they are finding their strength and courage in each other. If there's one thing I want them to learn from this, it is how to come together as a family to help those we love.

Sunday, July 23, 2017

Morphine

Some people have been texting and asking for updates on mom. I will try to be better and post updates daily or at least every other day. I know that friends and family who are far away want to be kept in the loop and it's easier to write one post than to make several calls and texts. We appreciate all of the texts, phone calls, visits, thoughts and prayers that we have received.

Last night, we started Mom on morphine. It's been really difficult to determine if Mom is in pain, due to the fact that she can no longer communicate; even her expressions are gone. I've been trying to read up on kidney failure just to get an idea of signals to look for that could indicate that she's in pain (especially since the doctor said to expect it in the next few days). I stumbled onto a couple of websites that spelled out the 10 symptoms and she fits every single one. I think reason would say that she's in pain. For the past couple of days, she's been especially restless. She has been unable to lay down and sleep for more than a few minutes at a time and she looks completely exhausted. When she was finally laying down, I noticed her legs shaking/rocking, feet tapping and she would rub her hands over her face as if she's frustrated. Her skin has looked flushed and today, her cheeks are puffy (which, from what I understand, means that her kidneys are unable to excrete excess fluids, leading to swelling in other parts of her body). All of these signs lead me to believe that she is feeling pain, and how can she not when her kidneys are shutting down?

The decision to administer the morphine hasn't been an easy one. My dad is worried about unnecessarily giving her meds and over-medicating her; he doesn't want her to become a "zombie". It's a scary step because it means we lose that last little bit of spark left in her. My Aunt Sharon (who is an ICU nurse) was over last night, and made the same observations that she might be uncomfortable at this stage. She talked to my dad and the decision was made to give her some morphine. It really has calmed her down and she has been able to rest so much more peacefully. The side effect, however, is grogginess while she is awake. She does still try to get up and walk around, but when she does we have to follow beside her because she is losing strength and becoming wobbly. It is painful to see her like this. But the thought of her being in pain is even worse. We are trying to take it day by day, hour by hour and adjust as needed.

We put in a call for her hospital bed; it should be here by tomorrow. I think that will help her with getting up and down and put our minds at ease about her falling out of bed. Also, as much as we want to think it won't happen, she will probably not be ambulatory for much longer. We are making plans to have someone in her room with her at all times now, so that will mean taking shifts throughout the night. My sister-in-law and I dusted and tidied up her room today and I brought over some lavender oil to diffuse in her room. We've put on some of her favorite, calming instrumental CD's to play softly in the background. We are trying to keep her calm and relaxed through this process as much as possible.

We have all been taking turns sitting beside her throughout the day. This afternoon, I sat next her and she had her blanket over her face (a funny thing she likes to do while she sleeps) and was seemingly asleep. All of the sudden, her hand slipped out from the blanket and felt for mine. Her body didn't stir, her eyes were still closed, but she firmly held onto my hand and pulled it up to her face. It was such a sweet moment, it brought me to tears. She knows that I'm here and I know that she feels comfort in being surrounded by so many people who love her.

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.

Monday, June 19, 2017

Help

Why does obtaining help have to be so difficult? If there's one thing I've learned from this disease, it is that our medical care system is majorly flawed.

A couple of years ago, Senate (NOT doctors and medical teams) revised Medicare guidelines for receiving hospice with certain diseases. It used to be that if a person diagnosed with dementia reached the point where they were having trouble swallowing and were losing weight due to that (and decreased eating), they could be labeled as "failure to thrive" and receive hospice care. Under new guidelines, Alzheimer's patients can receive hospice under those conditions, but other dementia patients cannot. The problem is, they fail to recognize that dementia is a terminal illness. Anyone who says that it is not is not educated on the disease. When the brain loses function to the point where it cannot tell the body how to swallow or how to process food or how to ward off infections, the consequences are terminal. And such is the way with dementia.

Mom is now into the phase of swallowing difficulties and weight loss. From September to April, she has lost approximately 50 pounds and has lost another 10 pounds since April. Her eating habits have continued to change, even within the past few weeks. The amount that she has been eating has continually decreased. She went from eating whole sandwiches to eating only half and over the past few months we've decreased her portion size to 1/4 sandwich sizes because she wasn't finishing much more than that. Even though she was eating frequently, she was only eating 1/4 portions at a time. Yet, she was finishing them. Over the past few weeks, she has decreased her portion size to mere bites of that quarter-sized sandwich. Sometimes, she will point to the bread and pb&j, watch us make it, and then get up and walk away from the table. Other times, she will get her plate from the cupboard, place it on the table (her signal that she is ready for another sandwich) and walk away. It is as if she is simply going through the routine of doing something (making the sandwich) but is forgetting about the actual eating part of it. We've been tracking her intake of food and water. Last summer she was eating, on average, about 5-7 sandwiches a day, plus drinking 2 ensures and at least 32 oz. of water. Now, she is down to only 16-20 oz. of water a day, no ensures and an average of 2-3 sandwiches per day. When I sit back and reflect on that significant change over the past year and witness the weekly and even daily changes, it leads me to believe that she won't last another year.

In addition to the drastic decrease in eating and weight, swallowing is becoming more and more of an issue. Most times that she drinks her water, she chokes on it, sometimes to the point where she coughs/spits out everything in her mouth. This puts her at risk for aspiration, which leads to pneumonia. She has been choking on her pills over the past month to the point that we've had to eliminate all unnecessary pills (my dad has been giving her lots of vitamins to keep her healthy, but they are too much trouble now to swallow). With her sleep medication, my dad has been crushing it up and slipping it into her nighttime sandwich. She seems to do better swallowing the sandwich than the pills. The trick now is getting her to finish the sandwich!

At the prompting of several people in my online support group, I called and ordered Mom a hospice evaluation (I actually emailed her doctor who sent in the referral). Many people said they were able to receive this service for their loved one by this point and even had them receiving hospice for a year or two! Receiving hospice can be helpful because they pay for all medications, diapers, medical supplies, etc., plus they'd have medical staff come in to check on Mom and help with the bathing. I thought it might be nice to get some extra help and support for my dad. I don't know if it's fortunate or unfortunate that she didn't qualify, but I'm leaning towards unfortunate simply because of the fact that this is a service she would've been able to receive at this point if her diagnosis were Alzheimer's or if they hadn't have changed the guidelines. Basically, the hospice nurse told me at our assessment that they wouldn't be able to step in until Mom becomes non-ambulatory (not walking). The crazy part is that with Mom's specific diagnosis and all other factors (her young age, overall good health), she could very likely be walking up until a few days before she passes away; that's what we're hoping for-we don't want to see her bedridden for months on end. It doesn't matter if she has not eaten or drank in 5 days, they will not step in until she's bedridden.

To put this into perspective, I recently had a conversation with another young lady from my support group whose mother passed away last month. Like my mom, her eating decreased more and more each week until one day, she decided she was done eating altogether. From that day, it took 11 days until she passed on, and she was ambulatory until 2 days prior to her passing. The hospice nurse also told me of a family she had assessed in a similar situation where the patient hadn't eaten in 5 days, yet couldn't qualify for hospice yet because she was still ambulatory. So basically, this isn't a service that we will likely receive until we are days away from death.

To add more insult to injury, we were told that Medicare wants to see us place her before we can tap into anymore services. See, while we didn't qualify for hospice, we did qualify for a home health nurse to come and assess Mom. Things were looking up when the nurse told us Mom would qualify for in-home help! She originally said that Medicare should provide a caregiver to come 3 days a week for several hours to help with mom, including help with the bathing (which I've been handling for the past 2 years). After trying but failing to not get my hopes up, it turned out that she only qualified for bathing help. Still, we were happy and relieved to get some outside help especially with the summer approaching. Unfortunately, that was also too good to be true. Despite the recommendation from the nurse, Medicare only approved 3 weeks of help with the bathing; I'm not sure what the point of that was! On Friday, the nurse came by to reassess and close out Mom's case. Until she ends up with an infection, in the hospital for some reason, or becomes non-ambulatory, our help is done. UNLESS we decide to place her in a facility; if we do that then we'll get extra help. Apparently the people sitting behind the computers are better equipped to tell us where Mom would be better off and will only offer help if we do it their way. No thank you. It's not anybody's business to tell us how to take care of Mom, least of all those who don't know her!

I really don't mind bathing Mom. In fact, I felt a little guilty for those 3 weeks to allow someone else to do it. I feel like it's my job to take care of her. I will admit that it's not always easy or convenient, especially during the summer with the trips we have planned and the time I want to spend with my kids. Through this ordeal, a couple of our caregivers have stepped up and offered to help with the bathing. I still plan to be here when I can to help with that process, but it's nice to have peace of mind in knowing that she'll be taken care of when I'm unable to be here without placing the extra responsibility on my dad-he has enough to worry about! Even though I am extremely frustrated with the lack of care in our system, I feel extremely blessed to have the help that we do have. This isn't going to last forever, so we are all just doing our best to keep Mom happy and healthy for the time she has left with us.

Tuesday, May 16, 2017

Dear Mom

Dear Mom,

This time of year is always a little tough for me. On Sunday, we celebrated Mother's Day and a few days before that, your birthday. You've made it another year, 56 years old! For some reason, it hit me a little harder this year. As I wrote your birthday post on Facebook, the tears slid down my cheeks, just a few at first and then as if a dam had burst as I was overcome with my grief. People tell me that I am strong, but there are moments (like that one) when I'm not so sure that is true. I posted a beautiful picture of you with my Aubrey (taken on her first birthday) and so many thoughts and emotions surged through me. So many things that I wish I could say to you and share with you. Sometimes I talk to you anyway. I know you don't understand, but still, I tell you about the kids' accomplishments, things that are going on in our lives. I suppose it's more of a comfort for me to feel like I can still tell you what is happening. And so I write you this letter with the things that have been in my heart over the past week.

Looking at that picture reminded me of the deep love and devotion you had for your grandchildren. Sometimes I can't help but to daydream about what life would be like if you were still here with us, free of this disease. I imagine the family dinners, the family trips and vacations that we would have. I imagine the holidays and all of the festivities and traditions that make them so special. I imagine shopping trips and mother/daughter days out. I imagine you sitting with us on opening night of Aubrey's theatre shows, or her voice recitals, or the boys' ball games. No doubt you would be so proud of the accomplishments of all of your grandchildren.

This birthday we wanted to celebrate you, even if you didn't understand. Jeff called me from work and offered to pick up dinner from Miguel's in your honor, since it was your favorite place to eat! We took our dinner over to your house and ate and reminisced about the birthdays spent at Miguel's. When you came into the room, we all sang "Happy Birthday" to you and the grandkids showered you with affection. I had a faint hope that the song might spark some recognition with you. I don't know that it did, but you did get that cute grin on your face that you sometimes get when anyone tries to hug you.

There is nothing left I can give to you but my love. For your gift this year, I decided to make your famous English Toffee to sell and raise money for your caregiving fund. I was blown away by the love and support from friends and family. Over 100 pounds of toffee was ordered!! We spent all week working on filling those orders-Jeff, dad and a few friends from church all pitched in to make this happen. You would be so proud of Dad; he's become quite the accomplished toffee maker!! It was such a sweet thing to be making your toffee recipe, keeping your legacy alive while doing this act of service for you. Though 100 pounds of toffee seemed a bit daunting at times, I never felt anything but love while I worked. This was my gift to you.

Some people ordered just to show support (some continue to order because they've become addicted to your recipe! Ha ha). Some friends gave donations to your caregiving fund without ordering toffee at all. Other friends left large tips to go towards your caregiving expenses (one dear friend of yours left me with a $180 tip!!) Through all of the ordering and the cooking and the tipping, I began to realize how much you have affected other people's lives. I think you would be truly touched to see the outpouring of love and support of your friends, family and church family. Your journey has even touched those who have never had the honor of meeting you personally. If I could bring you back for just one minute and tell you just one thing on this birthday, I would tell you just how much YOU ARE LOVED. You are loved by so many people. I love you, Mom. Not a day goes by that I don't miss you. That ache in my heart will never go away. I will put on my brave face for you. I will continue to fight for you and to care for you, as best as I am able. I will forever hold the faith and hope in my heart that we will be reunited again someday.

Happy Birthday and Happy Mother's Day. I love you more than you know.

Your devoted daughter,

Cassandra