One More Day

She’s gone.

These are the words my sister says to me over the phone, just 5 minutes after I left my mother’s bedside.

I think that’s what she said. I’m not quite sure now. My sister and I had been with our mother for 24 hours–sleeping in recliners, talking and reading to Mom, rubbing her arms. She had been unresponsive for the day. We knew it was near the end but I thought she’d be here for one more day.

Mom had been with hospice care for 3 weeks, but at first, we thought she had a few months left. Or I did. She had a gastrointestinal bleeding that they couldn’t fix, so she began pain medicine to help. We took her to the waterfront for her birthday and ate ice cream and whoopie pies and drank coffee–all some of her favorite things. We had some wonderful visits with Mom and she seemed more like herself than she had in ages. I’m assuming she had been in more pain than anyone thought.

Then her pain increased and she was on a regular dose of morphine. Two days later she fell. It was awful. She was so fragile and now in more pain than ever. Her morphine dosage increased just to keep her from crying out. So my sister and I sat with her, told her we loved her and told her it was ok to let go. We would be ok.

Friday morning I left to go home and wake my son up, take a shower and take my boy to school. I drove back to the residential facility, thinking about the afternoon. My sister was going to go home and take a shower and I would sit with Mom, read more of her favorite book aloud and just be with her. Weirdly, I was looking forward to it. I would spend some time with my mom and hang out. Just the two of us.

When I got back to the facility, Mom’s breathing had changed. But it still wasn’t like Dad’s had been. He had long bouts of no breathing before he died, so I thought we still had a little time. I stayed for a bit then had to leave for an hour to get another x-ray for my arm. I was just down the road when my sister called me. I turned around and raced back. I ran from the parking lot into the facility and down what seemed like a very long hallway. When I got to Mom’s room, the hospice doctor, nurse and my sister were there but I didn’t look at anyone. I hurried to Mom’s bedside, touched her face and arm and just sobbed and sobbed. My body shook with grief as my sister rubbed my back.

I knew this would happen. I knew Mom would leave once I was out of the room. I said this to my sister the day before, and Mom just proved me right. I was the baby of the family. Before dementia set in, my mother did all she could to protect me, but not my sister. She was the oldest and honestly the strongest. My mother would tell her when she was in pain or when things weren’t right, but never to me.

I was so angry at Mom. Why couldn’t she have waited? Couldn’t we have this one last afternoon together?

I knew I wasn’t being rational, but none of that mattered. I was angry and sad and devastated. I thought I would be a little relieved after everything we’ve been through, but I wasn’t. This is my mom.

My mom.

My mother remained my mom until the very end. I essentially became her parent over the past two years, but she was still mom. She couldn’t remember I had visited her the day before or that her mother had passed away 14 years before, but she remembered that I injured my arm 3 months ago. Less than a week before she died, Mom stopped herself from touching my arm and asked me about it instead. My sister kept poking my arm because she forgot, but our mother with Alzheimer’s did not.

And I know she was still trying to be my mom with that last breath. Everyone has their theories about what people do on their deathbeds and what is intentional and what is not, but I do believe Mom wanted to save me from what maybe she thought would be too hard for me to handle. But I am so happy my sister was with her. When our dad died, I was with him and I felt like he gave me this incredible gift. I can’t tell you what it is or why I feel this way, but I do. I only hope my sister feels that way now with Mom. My sister’s was the first life my mother brought into this world, so it seems fitting that my sister was with Mom as she left it.

I feel lost tonight. Earlier today I found myself walking back and forth in my house, not sure what I should be doing. I called my sister and she was doing the same thing. What do we do now? What does one do without their mom? I feel like I’m in a foreign place that looks familiar, but I have no compass so I don’t know which way to go.

I miss her. I miss my mom.

Missing Pieces

This week I joined Weight Watchers. I have 10 pounds of sadness, sweet creamy coffee and gluten-free baked goods to get rid of. My occasional running and eating everything I want when the mood hits me is certainly not working. Do I need a therapist more than the WW app? Probably. But trying to lose the weight gives me a sense of control that I may or may not really have. For now I’ll take the illusion.

I happened to start my weight loss program on the same day I got a message from the facility where my mom currently lives. For reasons unknown, Mom has started to pull her hair out…by the fistfuls (trichotillomania). And when I went to visit Mom yesterday, I realized they were not exaggerating. Much of her hair on the left side of her head is gone.

Mom’s hair has been thinning over the past few years due to medication, so honestly, it didn’t look as bad as I had feared. I was so worried, though, that I brought both my son and husband with me to visit. I knew I couldn’t do this on my own. I’m really good at faking happiness and cheer, but sometimes I need back-up, you know? It turned out to be a great visit. We all laughed, they ate donuts and drank coffee, and I just kept my smile on. I didn’t even cry when we got back to the car, or even that night. I was ok.

But then when I told my sister about Mom, she said one little thing that just broke me. She said how sad it was that Mom had to end up this way. And she’s right. It IS fucking sad and horribly depressing to see a bright, energetic woman end up with half of her hair, scratches on her face from her own making, and only a handful of memories left.  I couldn’t sleep last night. I kept thinking about Mom and when I finally did sleep, I was restless and I kept hearing things that really weren’t there.

Today I hung out with my dad so my stepmom could go to church. Dad is on oxygen 24/7 now and can get confused easily, so he needs to have someone with him all the time.  I always have a good time with my dad, and he hasn’t lost so much memory yet that we can’t have a decent conversation. He typically asks how my mom is doing, but today I told him before he could even ask. I started to cry when I told him about her hair. He cried, too, and we both agreed that Alzheimer’s was a horrible fucking disease. Later, when my stepmom arrived, she asked about Mom and I cried again.  Maybe I’m really not ok.

puzzle

What I finally realized is that the missing hair is like a physical manifestation of Mom’s absent mind. Each week when I visit her, something else is missing–another memory or something is no longer understood. Last week it was my brother’s height. He was always the tallest in the family but Mom kept asking if I was the tallest. I guess I am now, but I won’t admit to that. I kept saying, “No, Phil was the tallest.” And this week she had stories to tell me about who colored pictures in her book or on her wall, and she said both of her grandchildren colored them. I know they didn’t, but in her mind they’ve been there to visit and that made her happy. If Mom can remain in these happy places in her mind, maybe she won’t keep scratching her face or pulling her hair? I really don’t know.  But I have to have hope that this trichotillomania will come to an end, either through medication or good thoughts or a bit of both. I have to hope because there is nothing else.

I’m watching my mother disappear, and I have to wonder, which of us will disappear first? Will I no longer recognize the woman I’ve known to be my mom first, or will she no longer recognize me?

Guardian of the galaxy? Nope. Just of my mom.

Two weeks ago, I went to court for the very first time. Ever. I think I’ve been lucky in that way. I’ve never been to traffic court or divorce court or small claims court or any of that jazz. So many of my friends have had to deal with legal issues and I feel for you all.

I was pretty nervous before getting to probate court but happy to have my sister with me. She can talk your ear off about anything, which is a GREAT distraction. Thanks, Bon. 🙂  We were both feeling pretty confident that everything would turn out ok, but you never know, right?  But thankfully, it really was ok. The judge asked a few questions, I answered them with my sister having to prompt me once because I couldn’t think, and then it was done. Now Jack (or anyone) cannot take Mom from the safe place where she’s at. *big sigh of relief*

Afterwards, my sister and I went to Mom’s house to look for some photos and cookbooks. It was really, really weird. It’s one thing when someone has passed away and you’re looking through their things, reminiscing, and figuring out what to do with everything. But what about when your loved one is in a home and very much alive? We felt…sneaky. I tried not to cry multiple times (didn’t always succeed) because it just felt wrong, pawing through our mother’s things. And yes, good things did come out of it. We found photos we didn’t even know existed, so now we can scan them and give everyone, including Mom, copies. I found a few bags of clothing I ended up washing and taking to Mom, as well as more winter clothing for later on. So it wasn’t really wrong….but it felt it.

As we were going through some of Mom’s kitchen cupboards, both my sister and I talked out loud to our brother, cursing at him for not being there. Calling him an asshole for leaving us with this job, but laughing when we said it. We reminisced about so many good times. Weird items like a certain bowl or nutcracker or even Tupperware would spark memories and stories in us both. It was odd and unsettling in some ways, but a bit cathartic at times.

What really got me was the jar we found in my mother’s closet. Twelve years ago, I made her a jar of memories for Mother’s Day. Each slip of paper was a different memory I had of her and the note attached to the jar was me telling her I couldn’t wait to make more memories with her. It was before I ever got pregnant, before I got to see her be a Grammy to my boy, before she ever showed signs of Alzheimers.

But she kept the jar. It may have been in her closet, but she kept it. I’m not sure why I got so emotional about it. Either it was because of the fact she kept the jar or it was because it was foreshadowing of the future or that I felt this weird moment of rightness. Like I made her something kind of cool and it was something a photo album couldn’t capture–moments in our lives that I wanted to remember and hoped she’d remember, too. But it also showed my love and admiration and respect for her. I guess I was glad we found it because it was proof to myself that I did show my mother how much I cared for her.

Having to place Mom in a facility didn’t feel like I was showing her my love, although I suppose it really was. It just didn’t feel like it at the time. But now when I visit her each Saturday, she’s happy and funny and more like herself than she’s been in ages. Of course her memory is still deteriorating. When we went through some photos just yesterday, she thought a few pictures of me was really my cousin, and she didn’t recognize her second husband in a few photos. I found myself saying who everyone was before she could identify them or not be able to identify them. Maybe I was trying to save myself some heartache? I don’t know. I’ll have to find out what I really should do. Label the photos? Let Mom try to figure out who they are? Put them in chronological order? I have some research to do, I guess.

In the meantime, my visits with Mom will continue (always with coffee and treats) and we’ll have as many good times as we still can. Mom loves to talk about the other residents, who she thinks is sweet and kind and who she thinks is nuts. Mom’s sense of humor is still as great as ever, and we always laugh a lot when we visit. Those are the moments when she still feels like my mom. And as long as we can still laugh, then all hope is not lost, right?

Absolutely. ❤

 

 

Stress is a Killer

Let me begin by thanking all of you readers and your thoughtful comments and suggestions when it came to my mom and her care. As of 5 days ago, she is finally in a safe place. Unfortunately, it was after an incident where “Jack” had to be asked, by the police, to leave Mom’s house.  This was followed by two weeks of me stopping by every other day, checking on Mom, giving her meds, watching to make sure she ate, and horrible conversations with her about moving somewhere where she could be safe and taken care of.  You can imagine how those went, right? Not good.

After talking with Mom’s nurse and social worker, and having them tell me that it was really ok to lie to Mom and tell her she had an appointment when, in fact, she was moving, I ended up doing just that. The facility Mom has moved to also knew what was happening and they’ve had to do this type of thing before. The move is for the safety of the person. My emotional health was irrelevant but Mom’s safety was the most important thing I had to keep focusing on. And I did.

Once we were inside the facility and the director told Mom she was staying there for a while, Mom first got angry and headed for the door. Eventually she followed us to her room, sat on a bed, put her head in her hands and sobbed.

It was absolutely fucking awful.

In many ways this was worse than in January, when Mom moved to a different facility. Maybe because I was by myself this time? But in other ways I knew in my heart and soul that this was the best we could do. She would be safe from herself and at least one other. She would be eating 3 meals and 2 snacks a day. She would have other people around to talk with and to. And she’s only 25 minutes from where I live and much closer to other members of the family.

After driving back to her home that day and getting many of her things, then visiting a bit with her after placing family photos around her room, I left her in a good space. She was listening to music with other residents and was enjoying herself.  Then on the ride home, I had a sudden pain in my pancreas.

I’ve had pancreatitis twice now and I know what it feels like. I wondered if last year’s bout was stress-induced, and now, I really think it was and is. I didn’t think I internalized my stress. I talk about it, commiserate with those in similar situations, and attempt to exercise most days to relieve my stress. Obviously I’m doing something awful to my body and I have no idea how to handle my stress. So, to avoid going into the hospital, I’ve drastically reduced my food intake. I’ve lost 4 pounds in 4 days. As much as I’d like to lose a little weight, this isn’t the way I wanted to do it.  But it’s worked so far in keeping me out of the hospital. (I really think this might be some bad karma coming into play. I’ve tried to keep my weight down for my entire adulthood, obsessed over it for too many days to count, and now, here I am, losing weight and not really wanting to. It’s like the Gypsy from Stephen King’s Thinner is after me!) Not sure I can keep up with it for many more days, so I’m slowly increasing my food and testing how I feel. This doesn’t mean I’ll stay out of the hospital, but I have hope. I’m also running a mile a day thanks to Runner’s World “Summer Run Streak” challenge and my friend, Sonya. It might not be the wisest thing to do on such little food, but it gets me outside and out of my head for those few minutes. (Make that 12 minutes since I am definitely running slowly.) I’ve also attempted meditating (that helps get me to sleep) and have tried to take LOTS of deep breaths.

 

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Stressed much?

One of the most difficult things about Mom being where she is are the phone calls. Yesterday Mom had such a great day and told me she was “happy” to be there. That was pretty amazing and something I never heard when she was at the other place. And yet at 8:30 this morning I got a phone call from Mom, asking me to pick her up. I told her she needed to stay there. When she asked why, I told her because of her dementia. She then denied she had it. I should have known better. I never should have brought that up and just said she needed to stay for her health for a few days. Today I learned that this is called a “fiblet”. It is a “necessary white lie to redirect loved ones or discourage them from detrimental behavior.” The term “geriatric fiblet” was created at the 2000 World Alzheimer’s Conference. Who knew?

I went back to see Mom this afternoon since she asked me to visit during that awful phone call. I said I would. My husband told me I didn’t need to go. We had already had an eventful day, going to Mom’s house and taking care of a few things there, as well as dealing with the stress of having to meet “Jack” and hand over the cat. But since Mom is only 25 minutes away, I decided that I needed to do it for me. So I did and it was a brief but lovely visit. So tonight I can sleep well (barring no pancreas pain) and not worry.

That is the hope anyway.

 

Mom’s Day

Yesterday, I visited Mom with my son in tow. We brought bird food for her feeders, a new phone since we thought something was wrong with her other one, and lunch. I begrudgingly visited with “Jack” as well because what else can I do? I’m pretty sure he was high and I tried not to make too much eye contact. My son chatted with him for a  few minutes (my boy doesn’t know everything that has happened but *does* know the basics) then I gave the boy a plate of food and sent him into the living room with my mom.  We all ate, chatted and discussed Mom’s cat. She doesn’t talk about much else, so trying to have a conversation about other things can be difficult. But the visit was fine. Nothing like visits used to be, but life is different now. Before Alzheimer’s, I would visit Mom for several hours and not even realize it. Now I check the clock and stretch out the time to at least an hour, although I am often ready to leave after 10 minutes.

Today, since Mom’s phone line is acting up, I couldn’t call her. I decided that it was really ok.  I visited yesterday. I did my daughterly duty.

That sounds shitty, doesn’t it? Yeah, it does, but I think I’m ok with it. I have to be. I still love my mom, but the mother I knew hasn’t been there for several years. I miss her.

I’ve realized in the past few months that I’m not very good at separating the disease from the person. Sometimes I get so mad at what Mom does or says, but that isn’t Mom. My sister has been good about distinguishing between the two and trying to help me see the difference. Maybe I’ll get there someday, but for now, I think I have to distance myself from the entire situation.  I did send in the guardianship papers, which will change our relationship on paper, but it won’t change much in reality. I’ve already been her parent for a few years and now, if it goes through, I’ll be her parent on paper, too.

So, today, instead of worrying about Mom, I celebrated my own motherhood. My husband made me these fantastic gluten-free blueberry pancakes with whipped cream and fresh strawberries on the side. I took a 2-mile walk/jog with my son, I watched the movie “The Shape of Water”, then I went for two more walks interspersed throughout the day. (The boy was supposed to go on another 2-mile walk with me as the rest of my Mother’s Day gift, but in exchange for getting out of that, he has to do an extra walk with me next weekend AND he gave up his allowance this week.)  This might have been the best Mother’s Day I’ve ever had. I felt like I was on vacation. I ate what I wanted, felt very relaxed, and just tried to enjoy myself. Something I really haven’t done in a long, long time.

If you’re reading this and are a mom, I hope your day was a good one, too. If you’re reading this and you still have your mom, I hope you were able to celebrate her somehow. And if you’re reading this and you miss your mom,  I hope you thought good thoughts about her today. Try to remember the love. ❤

alzlove

 

Lessons to Learn

I’ve contemplated writing this post for over a month. I didn’t want to write it because it was no one’s business but mine and my family’s, but isn’t everything I write? Then I didn’t want to write it because the rage I felt prevented me from coming up with any words at all. Just today I decided that yes, I would indeed write about this latest shit storm, if only to help someone else down the road.

Let me begin with saying that if you have Power of Attorney for a family member, even for a person with dementia, that power only goes so far. We live in a country where everyone has rights. This is a good thing. It is. But is that person with dementia able to make good decisions, particularly about their health? Maybe, maybe not. Is a 7 year-old able to make good decisions, particularly about their health? We’re dealing with something very similar here. Just because a person wants to do something and is able to verbalize their want, does not mean that they should be allowed to do said want. Do we let 7-year-olds drive because they want to? Nope. Do we let people with dementia go back to their home with no one capable enough to give them medicine or feed them or remind them to bathe or clean up after them? Apparently yes.

My mother’s “friend”, let’s call him Jack, as in Ass, goes to the residential care facility where my mother is living, and packs up her things. He is going to take her back to her home where she’s happiest. Because my mother has rights, resident rights, she can tell the facility that she’s leaving. I can do absolutely nothing. I try to call her and tell her not to do this. No answer. I call Jack and tell him to stop. He doesn’t answer. I call my sister and we rage but we are helpless. Then I leave nasty voicemail messages on Jack’s phone, ripping him a new one. I have no idea what I said. I just know I was furious and frustrated and couldn’t believe this was happening.

I talked to my mother over the next few days. She, of course, was happy as a pig in shit. And you know, it was nice having her happy, but I also knew she wasn’t safe. During one of these conversations, I could hear Jack in the background, mumbling and freaking about something, but didn’t know what at the time. Apparently Mom’s blood sugar was so high that he was trying to make her a doctor’s appointment. He eventually took her to the ER where they gave her insulin.

I sent Jack a text telling him to take my mother back to the facility or he would need to start taking care of my mother. I sent him a list of things that needed to be done, things I discovered she needed when I tried to care for her in my home. “I’m not a caregiver,” he replied. “I just want to hold my friend’s hand as we go through hell.”

Oh, for fuck’s sake, GROW UP! You better do more than hold her hand, you asshole!

Two days later, Jack calls me sobbing. He “overestimated” himself, he said. He couldn’t take care of my mother. He said more, but honestly I have no idea what he said. He was blubbering. He was hysterical. But, as I discovered when I went to Mom’s house, she was NOT going back to the facility. She refused. She wasn’t going anywhere.

And that’s where we still are.

So what does all of this mean? It means, that in order for my mother to be safe and in a place that I know will give her meds and feed her nutritious meals and be there to help her bathe and remind her to change clothes and provide things for her to do besides stare at the television, I must become her guardian. I must fill out applications for other facilities and make phone calls to Adult Protection Services (again) and make appointments to visit facilities and do more paperwork for financial assistance. I must go to court and officially become her parent.

And you know what?

I really don’t want to.

I’ve been dragging my feet with the court piece. I have essentially been my mother’s parent for a few years now–paying her bills, taking her to appointments, and while she lived with us, making sure she ate and giving her meds and cleaning up after her. But once she moved to the residential care facility, I didn’t have to do any of that. I knew she was safe. I knew she was being taken care of. Whenever I visited or called, she was doing well. She really liked a few residents, she occasionally partook in activities, she was ok. I knew she wanted to be home with her cat. I completely understood. But things weren’t good at her home. Things ARE NOT good at her home. So for two months, I didn’t have to be my mother’s parent. I got to be my son’s parent instead. And now that the tide has turned once again, I’m not ready for it. Well…no. It’s not that I’m not ready. I just don’t want it.

I’m angry. I did what I was supposed to do. I tried to help my mom by taking care of her, then when that wasn’t working, I found people to take care of her better than I could. Then this Jack goes and does what I suppose he thought was the right thing, but all it’s done is hurt everyone involved. I have never in my life, felt such rage. I had never fantasized about killing someone before, but Jack changed all of that.

I’m frustrated. The amount of paperwork I have to fill out seems to have doubled. I peck away at it occasionally, but I know the end result of all of this is not going to be enjoyable. Once I become my mother’s guardian, if she still refuses to leave her home, she’ll have to be physically removed. I don’t know what that will entail and I really, REALLY hope I don’t have to find out.  And through all of this, I really, really just want to talk to my mom. I’m trying to do what’s best for her. Is this it? I have no idea. It’s either safe or happy. It apparently cannot be both. At least not for her.

This is the reality of taking care of a parent. It’s fucking awful. Now, not everyone will have this kind of horrible story. Some will have parents who have already planned everything beforehand. Some will have parents that willing go to facilities (which my mother did, then changed her mind). And some of you, like me, may have a parent who has hooked up with an incredible loser that will destroy any good thing you’ve done for your parent.

If that latter example is you, then just know that you’re not alone. Know that others have traveled or are traveling the journey and although it’s worse than riding a crowded Greyhound bus cross-county with a backed up toilet, there is help. Not a lot of help, and the process is extremely slow, but eventually things will change. I can’t say for the better because I’m not on the other side yet. I’m hoping for better, especially for my mom. And if we get there, I’ll be sure to let you know.

alzsucks

 

I tried…

…but did I try hard enough? Last night, as I sat with my mom, as we laughed and cried at “This is Us,” I rode an emotional roller coaster between guilt and relief at what today would bring.

This past week, Mom’s memory has been the best it’s been in over 2 months. Physically it hasn’t been great, but mentally things were better. Yet I know that it won’t always be that way. I know that a residential care facility and the folks that work there will care for her the way she should be. She won’t be alone for 6 hours a day like she has been while I’m at work. I know she’ll eat lunch and it will be good for her (and hopefully yummy) and I won’t have to inspect the trash or fridge to see if she ate what I put out for her or if she ate a half loaf of bread instead.

It also means I won’t have to change her sheets when she had an accident. I won’t have to clean the bathroom floor or the toilet or the bathroom counter nearly every single day like I’ve had to for two months. I won’t have to sneak into her room and steal her dirty clothes so I can clean them. Or ask her multiple times to please change her clothes or to take a shower.

But it also means she won’t be here as we eat our dinner around the table and talk about our day. Or laugh at silly things we find on television. Or fold all of our clean laundry (this was one of her favorite things to do).

For the past few weeks, various medical professionals as well as my friends and family have all said, “It’s ok. You’re doing the right thing for both your mom AND for you.” But this afternoon it did not feel like that at all.

My sister and I drove my mom to her new home, and it really is a lovely place. It’s not assisted living or a nursing home, but a residential care facility which is kind of in-between the two. It’s a very homey place, doesn’t smell like a nursing home or a hospital. Mom’s roommate is fantastic and she loves to watch tv as much as Mom does.

But as soon as we got there, Mom was angry and upset. After we sat in her room for a minute, I had to get up and leave because I was starting to cry and I wanted to find the director. Mom argued with my sister about why she had to be there, saying that yes she could take care of herself, but thankfully, my wise sister, distracted Mom with photos and questions about our grandfather. By the time I got back, Mom was smiling and was willing to let me put her clothes in the dresser. Later she went to lunch in the dining room with everyone else (and my sister) while I filled out paperwork.

We visited for a while longer and I encouraged Mom to walk about in the rest of the building, check out the two large areas to sit and read in or watch television. She sat in her recliner before we left and settled in to watch tv with her roommate. Once my sister and I got to the car, I sobbed. It felt truly awful to leave Mom. I felt like I abandoned her and let her down. I’ve felt guilty just thinking about when this day would come, and now that it’s here, that guilt sits heavy in my stomach, my chest and my head.

guilt-and-grief

I KNOW that Mom needed more care than I could give her. I KNOW that my son needs me and has needed me the past few months when I put my mother’s needs before his. I KNOW that my mental health needed this to happen.

So why does it feel wrong? Why does my stomach still hurt and my chest feel tight? Why do I feel so guilty when it’s the right thing to do?