Balloons, Banners and Blasphemy

I am not cut out for this at all. Or at least I wasn't. I'm the one who drank too much and partied too hard. I'm the one that snuck a secret (well, not so secret anymore) cigarette when the kids were dozing. Now all I want to do is nap or burn all the crap in my house so I don't have to clean it. I really hope we don't have a fire now because the insurance company sure as hell won't believe me after they get wind of this. How did I end up responsible for so many lives when, not 9 years ago, I wasn't even responsible enough to take care of my own life?

At 4am I got a call from Mom and we got to hang out at the ER for a couple of hours. She's okay, thankfully. It's an Alzheimer's thing for another day. At 7 The Baby had to be at pre op for tubes so he could here out of both ears instead of one (no excuses now, Buddy). It's also H's 5th birthday today. Luckily Willie is a much better parent than I am and hung streamers and wrote a note for him on the bathroom mirror. I did let him know that the dollar store has balloons after 7 years of him begging Safeway to give him a $7 balloon at 10pm. I reminded him to re hang the 'birthday' part of our birthday banner that's still up from M's birthday in October. I also took our Halloween decorations down today. I'm not entirely useless.

I have a 5 year old. And an 8 year old. And a 1 year old. Somehow.

There and back again

Mom has been at the ALF for a few weeks now. It's lovely. They have three delicious meals a day, unlimited snacks, a coffee and juice bar that always has fresh cookies and housekeeping. This is all wonderful. Much to my dismay, it's not quite what mom needs. 

Don't get me wrong, I love knowing that the trash is being taken out and her laundry is being done weekly. I love knowing that she doesn't have to cook or clean up after cooking. I love how beautiful the room is and how perfect the color purple they painted the room is for her. I love that she's getting her medications regularly and at the preferred times. 

It's just not right for her. 

Mom needs someone who can turn on the shower for her so she can just walk in. Mom needs someone who can let her know her shirt is on inside out and help her fix it without making her feel like she's stupid. She needs someone who can help remind her that she doesn't have to wear clothes to bed and help her get her nightgown on. She needs someone to pull down her comforter and sheet so she sleeps in the bed instead of on it. She also needs to feel like she's still in her 60s which is not happening at all at the ALF. 

Don't get me wrong, the people are all lovely. They're just old. She's old too, but not that old. 

So here we are at another crossroads for Mom. 

Luckily the couple that rented out her apartment decided to go elsewhere. The complex is going to clean up her carpet and figure out what's going on with the fleas. She's been out for weeks. No one is there. There should be no reason we're still finding some. They're going to check out the vents to make sure nothing is living in them. Hopefully removing or seriously cleaning the carpet will help as well. I do know that I'm not moving her back in in the condition it's in. 

You might be wondering why I'm even considering moving her back there in the first place after all the trouble we went through with fleas and cleaning it out. The thing is, with Alzheimer's, keeping things the same is super important. She knows that place. She has friends there. She has friends that know me and my number and wont hesitate to let me know if something is going on. She loved taking walks around the complex and I had no concerns of her getting lost. 

The plan for now is to hire someone to help out for a couple hours in the morning and in the evenings. They can help with meds, make meals for her, do some light housekeeping and laundry and help her get dressed. I met an incredible lady yesterday who is going to help Mom out in the mornings and she found someone she likes and trusts to help in the evenings. I'll hopefully be meeting her soon. Denise (AM helper) even said she wanted to come over Thursday and help me scrub the place down so we can be ready for them to take care of the carpet once her couch is removed. I'm kinda in love with this woman.

That's all for now. I'm sick and the baby wants to help me type. Wish me luck. 

Alzheimer's Is...

Crying and panicking because you can't remember how to put pants on only to realize 15 minutes later that you already have pants on.

Trains and Cliffs

Alzheimer's is a fracking train wreck. It's like watching someone you love drive slowly towards a cliff except you're paralyzed and mute and completely unable to help them.

No amount of money can fix this. No praying. No begging. No crying.

I want my mom back.

I know she's here physically and I should be thankful that I get to see her daily. I tell myself this daily. I just wish I could run to her for advice or to make me soup when I'm sick. I want to call her up when something awesome happens or send her a video of something cute the kids did instead of knowing it will result in her calling me crying because something happened to her phone and she doesn't know what to do with it. I wish when I had to run to the bathroom, I could ask my mom to watch the kids instead of asking my daughter to watch my mom.

I want her to hug me like a mom hugs a daughter, a safe, warm, protecting hug.

I wish sometimes people understood how it feels like I can't breathe from the crushing fear of what's to come or knowing that nothing can happen to me because everyone needs me, especially my mom who is paying an insane amount of money to live in this facility yet seems to have more needs now than she did before she moved in.

I couldn't take her call a couple of hours ago. I just needed to not answer. It's not that I left her in the dust. I was just there a few hours ago making sure all her laundry was together and cleaning trash out of drawers. I was also there when she called 4 times because the channel was different. She needed help getting back to channel 7 but she kept losing the remote... while I was on the phone with her.

I'm whining. I know.

Today I'm just sad.

I want my mom back.

White Flags

Today I feel, defeated.

Grandma Love

There was a housewarming social for this month's new residence at Mom's new place. While she was clearly nervous about any attention, she sure loved showing these three off. The bigs loved dancing on stage while the piano player played. The Baby flew into Grandma's arms and was upset when we had to leave her. He did try stealing all the walkers he could find and snuck up behind many a old people. I don't know why some of these places don't consider having an on site daycare with a giant glass window. Seniors and babies are magic together.

Mom seems to be adjusting a bit more. I talked to the Resident Liaison today for a while and came up with some ideas to help her a little more. I was also about to let her know about some Mom things (behaviors, anxieties, likes, dislikes, etc.) which helped her out.

I'm headed down to see my grandparents soon and it's nice knowing she will be taken care of while I'm gone. I've been mentioning it every time I see her because I know me leaving causes her some serious anxiety. I can go three days without seeing her but as soon as I mention actually going somewhere, she panics. I guess I am her rock as she was mine.

I can't get over that picture. Four extraordinarily beautiful people. I'm so glad they have each other and I hope to capture as many moments like this as possible while I still can.

Bacon Popcorn, Joe Joes and Fleas

What do these things have in common? I had all of them today.

Mom's place got off to a slower start than I had hoped for. I finished the area I was hoping to but every time I turned my head half an inch, I was instantly overwhelmed with what was left. Mom was a bit of a hoarder. She liked collecting and hated tossing. Over the last year, she started 'going through' everything which really ended up being her moving things from one pile to a next. The end result of that is a pile that consists of 50 pieces of scrap paper and trash and 3 very important documents mixed in. This is going to take me a year, especially when I'm trying to keep The Baby from sticking his finger in pencil sharpeners and VCRs. Mom also liked having multiples of things. Anyone need a printer or three?

Anyways, midway through the day I went to trash some of the stuff in the bathroom. I saw something jump out of the corner of my eye but I assumed it was just movement from me dropping something in the bag. Nerp. That would be too easy. Within seconds I had three fleas on my legs. I yelled for Aunt B to come grab and toss the bag I had so I could kill all the fleas on me. Mom had a problem a few weeks ago but we hired an exterminator and she hadn't had any issues since. I called the exterminator hoping they might be in the neighborhood but they're not available until next week. Our next solution was to bomb the place. With foggers, you guys, but don't think the thought didn't cross my mind. I dropped the baby off at the BFF's after thoroughly checking him for fleas, grabbed a venti of sanity and prepared to go to war against the evil little blood sucking jerkholes.

Sadly, this meant that we didn't get nearly enough done today and most likely wont be able to get much done tomorrow either. The Baby is my almost constant sidekick and I don't want him rolling around in pesticides quite yet.

I got a call from Wayne from Mom's new place. He's one of the activity guys and they're throwing Mom a housewarming party tomorrow afternoon. I'm going to dress the kids up in dresses and button down shirts. I may even brush their hair. Appetizers and non alcoholic wine, here we come.

Off to gorge myself on Joe Joes and Bacon Ranch popcorn (thank you S!). One of these days I'll find my self control again. I assume its under one of the piles of laundry.

66 Years in 3 Days

Tomorrow is the next 'Big Day'. We've had quite a few of these lately. I'm hoping after this last thing gets taken care of, things can slow down a bit. I want to have movie nights with the kids and bake things. I don't know what I want to bake or even how to bake but I want to do it. I also want to learn to knit. I have high expectations. All of those things require being home early enough and long enough. Tomorrow I start cleaning out Mom's old apartment. My incredible aunt, who I've been lucky enough to have a wonderful relationship with, came up from Southern California to help me. We have 30 days to finish but I only have her for three. Dad is in Southern California helping his parents out. They recently went on hospice and I know he wants to be with them for as many moments as he can. That being said, the next three days of cleaning will be done with a wild 1 year old in tow and a crazy 4 year old. Mom's iPad will only work for one of them. Hint: not the one who can be reasoned with and bribed. Play dates are a godsend. One day I will find a way to thank my community (especially my tribe) for everything they have done for me. I'm normally a decaf coffee drinker but I think I may need the leaded stuff tomorrow. Have I mentioned I have terrible ADHD? I could use all the lucks you have to spare.

Options vs. Resources

Assisted Living Facilities (ALF) vs. Memory Care vs. Skilled Nursing Facilities (SNF)? When you're unable to care for yourself any longer, these are the main options offered to you. There are others, Board and Cares and In Home Care but these aren't really options for us for a multitude of reasons I wont bore you with.

Assisted Living Facilities are pretty much hotels with massive room service options. You can have help with medications, bathing, dressing, cleaning and an escort to take you places within the buildings. Most offer three meals a day in their dining rooms along with snacks and drinks that are available all day. Some even deliver meals to your room for an additional fee. To live in one of these places, you must not be a wander risk and should you have a diagnosis of Alzheimer's or Dementia (Alzheimer's is a form of Dementia but there are multiple forms of Dementia) it needs to be the secondary diagnosis, NOT the primary diagnosis. This is VERY important. Even with it as a secondary diagnosis, some facilities will not accept you into the Assisted Living programs. Others will allow it but you have to pay an additional fee to have someone check in on you twice a day. A select few will allow you to try living in their facility and re-evaluate you after a period of time. This is what Mom is currently doing. Medicare and Medi-Cal will not pay for this option although there is a trial going on in a few counties (Alameda and Sacramento as well as a few in Southern California) where Medi-Cal will pay for you to live in certain ALFs IF you are not a wandering risk. Long Term Care Insurance can help with the cost of these facilities, should you have it. Mom does not.

Memory Care is where most facilities want you if you have a diagnosis of Alzheimer's. They have locked doors and the care is more intense. Some options are included (meds, dressing, escorting you to meals and activities) but most are still an additional fee (bathing, toileting, etc.) Memory Care is dramatically more expensive than Assisted Living and can be a wonderful option for most people. For others, like Mom, it can be viewed as a prison. More on that later. Medicare and Medi-cal will not pay for this option. Again, Long Term Care Insurance can help, should you have it.

Skilled Nursing Facilities are for people who need more help medically whether its IVs, feeding tubes, infections, etc. Rooms are usually shared and are much more hospital like than the other facilities. Some SNFs will take Alzheimer's patients if they need medical attention and are not at risk for wandering or being aggressive. Medi-Cal WILL pay for this option if it's medically necessary.

Now here's where all of this affects us. Mom is only 66. She currently has a diagnosis of Mild to Moderate Alzheimer's though her incredible diagnosing NP wrote mild and wrote it as a secondary diagnosis so she could be in an ALF. While mom has trouble with some of the day to day things (medications, remembering to wash her clothes, thinking things are broken when she really just forgets how to do them and repetitive behaviors, (going through her clothes all day every day moving them from one bag to another) she is not aggressive, she is not angry, she is not at risk for wandering right now and she has a great sense of humor. The lines of whether you have mild or moderate or even severe Alzheimer's can blur. There is no 'You are definitely HERE.' at this point in her (or anyone's) diagnosis. One of her main issues is anxiety and her anxiety comes out as tears at this point. This is much improved with medication as it was a lot more difficult a few years ago whether it was just her stage in Alzheimer's or just time. She knows she's different. She knows she's at least 20 years younger than everyone in there. She sees people in wheel chairs barely lifting their heads. She remembers how she was years ago and that's where she still sees herself today. Should we have put her in a Memory Care unit, she would have just given up on life. I know this and thankfully her Memory Clinic team knows this. They have been incredible and are doing what they can to make life enjoyable for her while she can still enjoy life.

So now for why these three options have been the bane of my existence for the last few months. Let's start with the financial first.

Mom has worked her butt off her entire life. She went back to school at some point while working full time and raising a family. She paid her bills on time. She followed The Plan. She never made loads of money but she made enough to pay everything on time, put a little aside for savings and splurge occasionally on things like a towel warmer. Little did she know that being middle class was going to screw her down the line. As we searched for the perfect place for Mom, we learned that to qualify for Medi-Cal, the only way you could have over a couple thousand dollars was if it was in property. Mom didn't own her place. You can't just give away the money because they look at your finances 5 years back. She will need to pay down her money towards living expenses and medical care in order to qualify. Once she qualifies, Medi-Cal will only pay for a Skilled Nursing Facility so whether or not Mom has progressed in her disease, she's going to be stuck in a hospital type room for the remainder of her life. Based on what she has now, we have a year and a half for a miracle to happen. A year and a half. Part of me wants her disease to continue to progress rapidly so she wont know any better. I feel sick even admitting that. I know what moving my mom to a place like that, should she not be much farther along that she is now, will do to her. Of course we have the option of moving her in to our house but we're already 5 people in a three bedroom townhouse and Mom gets overwhelmed with even the mildest chaos. Living here will push her over the edge. Also, my kids. It's been hard enough on them, mostly M, watching their Grandma because more and more disoriented and anxious. They've recently lost another family member and I don't want to put them through that again. I know it's inevitable but I need to protect them from as much as I can. At 8, 4 and 1, they've experienced too much already.

So here I sit, waiting on bated breath, hoping that some magic option will come to me in the next 18 months. I also have constant concerns that the ALF she's in will deem her 'Too advanced in Alzheimer's' to live there. I panic every time she calls me crying or tells me something isn't working. I bite my tongue when she tells me how she went down to the front desk to have them help her because she couldn't tell if her shirt was on backwards. I've been going over at least once a day trying to toss empty containers or all take of the clean clothes out of her laundry bag and hang them up because she only heard the 'clothes go in the laundry bag' portion of me telling her that when she takes off her dirty clothes from that day, they need to go in the laundry bag. I worry when she says someone came to talk to her because I don't know if it's some sort of evaluation. I worry when I don't hear from her. I'm used to her calling between 10-20 times a day. Is she lost in a stair case or did she decide she wanted out and is trying to walk to my house? I know the call is coming, I just don't know when. Is it going to be when most of her money is gone and we really have no options left? Is it going to be in a month when she's finally feeling like she's adjusted but they decided it's just not working out. Good lord. I don't even worry this much about my kids.

The waiting game continues. I'm hoping my fears and anxieties will fade. I know moving her will take an adjustment period, for both of us.

A Home for Mom

It's time. Mom has reached the point where she should no longer live alone. While I don't mind going over throughout the day to bring her her meds or help her change the channel when she thinks the cable company is only showing infomercials, it's hard when she calls me crying because the washing machine is broken and won't give her her clothes back (it was mid cycle) or her back is hurting when she's sleeping (she was sleeping on a dining room chair) or now the TV is only showing her Nascar (she forgot how to change the channel in the hour I was gone). Between the three kids, two schools, endless activities and a mom who really needs someone else there, I haven't been home for more than an hour in months. Leaf piles to jump in? Who needs that when you have constant laundry piles that will do the trick. My kids pick their clean clothes out of one pile and throw their dirty clothes in another. I try to throw in a load nightly but rarely does it actually go back in closets or dressers these days. Dishes? You mean you don't eat in the car, while walking up to the next place or at your best friend's house when she forces you to sit down and eat a sandwich... on a real plate? So, it's time.

Mom was convinced we were moving her to a facility because we didn't want her and we were going to drop her off and run. I know this because she liked to tell me this constantly. She told me she was joking but we all know she wasn't. She even told one of the Marketing Managers at one of the ALFs we looked at when I was taking The 4 Year Old to the bathroom that we just wanted to get rid of her. This part sucks. It really, truly sucks. I love my mom. She has always been my best friend. Though things may have changed and roles may have reversed, I still love the hell out of her. I would never, ever, want to find a place for the purpose of dropping her off and running. I'm not putting her in a place because I don't want to be there for her. I'm not putting her in a place because I refuse to help her anymore. If I could spend all day making sure she was fed, clean and happy while raising happy, healthy kids, I would do it in a heartbeat. I wanted to yell at her after I walked in on her talking about how I wanted to ditch her. I wanted to go back to the car and just tell her to do it all herself. I wanted to throw my hands up and walk away.... at least for a few minutes. Then I remembered that even though *I* know that I'm not abandoning her, she is legitimately afraid. She's always been afraid of abandonment. I remember being a kid and her making us promise to take her in when we were older and not put her in a home. I swore that she could live with me forever. The guilt is strong, man. It weighs on me heavily. I knew I had to convince her that we were not putting her in a nursing home. We weren't ditching her. I had to make this move sound incredible. I had to make her think that not only was this an awesome idea, but that it was her idea as well. This meant that we could not just visit one or two places, we had to keep going until mom found HER place. This all sounded great, in theory. Mom was slowly coming around. When she realized that they were more like apartments with room service and three meals a day, the anxiety slowly started to melt away. Still, every place we went had people in wheel chairs, drooling on themselves sitting near the entrances. You would think they would make a pretty room for those people. A room with a view of a garden or a waterfall. Most of them were asleep anyways. At least I hope they were. Mom is only 66. She's 20 years younger than most people in these places and she is fully aware of that fact. She may not remember to shower most weeks but she knows she is younger and more active than everyone else.

I had just given up hope that we would find the right place. I was prepared to talk up one of the other places and try to convince Mom it was 'the greatest place ever.' I happened to remember one other place someone had mentioned to me and decided to just drop in and check it out. It was the end of the day. The kids had all lost their minds and were on sugar highs from all the cookies and candy that were given as bribes for 'one more place' and from previous tours. They were plotting my death, even the baby was against me at this point. I dragged them out of the car with promises of  the sacred 'mom's phone time'. Mom was starting to try to convince me again that it would just be easier if she moved in (we already have 5 people in a three bedroom townhouse). We walked up to the doors, opened them and all stood there in amazement. I kid you not. If there was a Disneyland of Assisted Living Facilities, this was it. It was right before Halloween and they had decorated gorgeously. The kids were oooohing and ahhhing over the spider webs and black painted trees. Mom was admiring the paper lanterns and the baby found the giant fish. They even decorated the fish tank. Once a month they have a social welcoming new residents. They have hors d'oeuvres, lemon bars, cupcakes, a piano place and WINE. Yes, wine. (I was sold at that point) People came up to my mom and talked to her instead of just talking to me like many places had done. It was lively and fun and people were actually walking and laughing instead of parked, drooling. They didn't have a room open because the place was so popular. They do fun activities, go on trips to the casinos and generally enjoy live vs. begging for The End. The big kids were given balloons and ran off with the activities director who had a daughter M's age. The baby was in awe with the birds and fish and the attention he was getting. (Babies are like movie stars in these places) We got our booklet, extra candy and dragged the kids out of there. While buckling them in the car, I expected to hear more about being ditched but much to my surprise, Mom sat down in the car and told me, "I think I would like to live there." I dropped Mom off at home and called Allison from the ALF back immediately to let her know we wanted the room.

After a couple weeks of buying all new furniture, new towels and new clothes (there was a flea problem at her old place and we didn't want to chance bringing anything over), mom was ready. They offered to paint an accent wall for her and she chose a bright 'here I am!' purple. Every sheet, towel, blanket and pillow joined the purple ranks and we were finally ready. I wanted to have the room completely put together for her so when she walked in, she fell in love. I didn't want her to stress over the move or worry about how everything would happen. Much to my dismay, they weren't able to give me the keys to her place until 4pm the evening before her move in date. If anyone knows my kids, they have a 6:30pm bed time. This is for my sanity as well as theirs. I grabbed some last minute items, picked the kids up from school, took all three big kids (we had our Bonus Child) to swimming and headed out to build some Ikea furniture. Just when The Baby had lost his mind and The Four Year Old had managed to announce his presence to everyone there, deaf or not, my two closest friends came to my rescue. One, with the help of another amazing friend, brought over the million pound mattress that wouldn't fit in my car and the other sat with me and entertained The Baby while I finished up. Finally her place was ready. It still needs a few things to make it more of a home but I think it came together beautifully. Here are a few pictures from the lobby and her room! More on how the move went later!

Would You, Could You?

If you could know how you were going to die, would you choose to know? What if it could affect how you lived the rest of your life? I'm not talking about the 'Enjoy All the Things Because Every Day Could Be Your Last!' aspect, I'm talking about the planning part. What if you know you would forget who your are or whether or not you ate for the last few days? What if you knew you wouldn't recognize your children even if they were standing in front of you, calling you 'Mom'? What about if it meant you could start putting money aside for an Assisted Living Facility (ALF) now so your children wouldn't have to contemplate liquidating their children's college funds to keep you in a decent home? Would you do it? Would you be able to enjoy the rest of your life or would the Grim Reaper lurking around you keep you in a constant state of anxiety? Would you take up bad habits again? Smoking? Sure, why not! Extra slice of cake? Who cares about the pounds? You'll need them when you forget how to eat down the line. Would you tell people what you really thought instead of playing nice all the time? Would you leave relationships that didn't feel fulfilling or would you stay and pray that those people don't give up on you when you started to lose your mind? Would you do the opposite? Would you forgo any bad behaviors on the off chance a cure is found and your body will be in tip top shape for recovery? Would you do it? Would you choose to know? If you found out you only had a certain amount of time to live and be aware of living, what would you do with your time? Would it change how you lived? What would you do differently?