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 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.

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.

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.

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 :(

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.

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.