Friday, January 20, 2017

Update on Mom

One question I get frequently is,

"How is your mom's progression? Does it seem to be a consistent downward slope or does it plateau before going down again?"

I used to think she was traveling a continual downhill slope; her progression seems fast at times. Six months ago she definitely seemed to take a quick turn downhill. Practically overnight, we had to transition her to diapers full-time due to the daily accidents she was having. She was eating less, sometimes going hours at times without fixing herself a sandwich. She even had a couple of incidences where my dad found her on the floor, unable to get up on her own. I thought the worst was quickly approaching and I had a terrible pit in my stomach for what was lurking around the corner. However, things seemed to have plateaued since then. There have still been slight declines in almost every area, but not the full downhill slide that I was expecting. In fact, in some ways things have improved. For example...the summer presented so many diapering and poop issues. I won't go into detail, but suffice it to say that those issues are not arising at the moment whereas in the summer it was a frequent (and sometimes daily) occurrence. I know it could change again tomorrow, but for now we are counting our blessings!

So here we are, at the start of 2017. I like to give a full update each year (sometimes twice a year, if I'm really on the ball). Comparing the last year to the present year always puts her progression into perspective. This is what Mom's stage is looking like as of right now:

LANGUAGE: The only real recognizable word is "Bud". She attempts to say my name; it comes out as "Cuh-suh-suh-suh". Every now and then we might pick out a familiar word, but she mostly speaks gibberish. There are some repetitive "words" that she says daily, but we aren't really sure what those words are. Sometimes we can figure out what she's saying by her gestures.

HYGEINE: She no longer brushes her teeth. On occasion, she will pick up the toothbrush off the bathroom counter and swish it in her mouth for 2 seconds before briefly running it under a quick stream of water and returning it to it's place. Her gums are very red and swollen and her teeth have seen better days. I picked up an electric toothbrush for her about a month ago and started brushing her teeth while she's in the shower; she doesn't remember to spit out the toothpaste. She cries the entire time I'm brushing, so I try to keep it brief. I'm not sure how much difference it's really making at this point, but at least we can say we've tried. When it comes to brushing her hair, she used to allow me to brush it for her while she pat her face with a make-up sponge (going through the motions of putting on her daily make-up). She no longer makes an effort to put on make-up and won't stand still long enough for me to brush her hair. I usually follow her to her bed after she's clothed from her shower and try to quickly brush her hair before she swats my hand away and lays down. The other day I was able to cut her hair again (it had to be done quickly, in the one minute that she sat down to eat her pb&j) and the shorter length does help with the hair washing and brushing.

BATHING: She does not participate in any of her own bathing. Six months ago she would hold out her hand and at least rub the shampoo onto her hair. She might do that every once in a while, but for the most part shower time consists of me getting her in the shower and her fighting me to turn off the water the entire time. Sometimes I try to sing to her and distract her a little bit; if I'm lucky she'll give me a grin but she really hates being in the shower these days. We have a system: I rinse her down, she turns off the water so I then wash her down with soap (while she tries to get to the towel on the other side of the glass). I then turn the water back on. I rinse her off, she turns off the water and then I quickly get in to brush her teeth, followed by one last rinse off. The whole while she is usually crying; this is relatively new. She really hates showering. I always feel so bad when she starts crying, but it has to be done. When I'm finished, I then pass her a towel but she doesn't dry herself off. She grabs the towel and then attempts to put it on the floor to stand on (despite the fact that I already have a towel laid down on the floor for her). I dry her off, top to bottom, and I get her clothes on her. She will hold up her arms for her shirt and help pull up her pants.

TOILETING: Mom is in diapers full-time, mainly because we never know when she's going to end up wet. She does use the toilet still, interestingly enough. But she usually wakes up with a full diaper in the morning and is wet by the end of the day.

EATING: Mom's been on her pb&j kick for quite some time now. The most significant change within the past 6 months in terms of her eating is that she longer drinks her Ensure. Now she is on a 100% pb&j diet. My dad gives her vitamins with her meds and she only drinks water.

ROUTINE: I remember when her routines were such a headache for us because we could never get her to stray away from it; she was so rigid and so unflexible. She wouldn't even take a pill one minute too soon! She no longer has a schedule but she has a routine of sorts and it usually runs in 20 minute cycles. All day long, she makes a circle from her bedroom to the kitchen to make a pb&j sandwich, to tapping her plastic medicine dish on the counter for medicine, to banging on the front screen door to get out, to looking out the window, to going back to her room to lay down. As she makes her way down the hallway, she tries opening every door along the way. We've had to add baby locks on the bathroom door (because she was getting into the soaps and rubbing them on her face) and dad now locks the office because she was pounding on the computer keyboard, which was messing up the computer. Once she lays down, we may get a 5 minute break (sometimes longer if we're lucky!) and then the cycle starts again. If the weather is nice and we are able to take her outside, it helps to settle her down as she sits on the patio and watches every passerby. We've had a lot of rain this winter, so she hasn't been outside much which has added to her stir-craziness. She rarely tries to go for walks anymore and she doesn't ask to go to Ellen's (this is all new within the past 6 months), although I suspect she might be trying to ask to go to her sister's house; it's too hard to understand anymore. Since she wants to make pb&j constantly (and usually only takes 1-2 bites out of each sandwich she fixes), we cut the bread into quarters for her now to cut down on waste. If her dish banging becomes too much to handle, we slip some Jelly Belly jelly beans into the dish and she swallows them as if they are medicine. So I guess I lied when I said she's on a 100% pb&j diet...she gets those jelly beans in there ;) She does wind down at night, but still gets up several times during the night and goes about her routine, which makes for lack of sleep for my dad. But he never complains about it. He just does what he has to do (and I have no idea how he does it!)

There you have my bi-annual report on mom and her progression. Like I said, she has, for the most part, plateaued over the past 6 months. But things don't last for very long with dementia. The scary part is thinking about what the next downhill slope will bring. She is so advanced in the disease that the next big hurdles to face are issues with choking and swallowing, mobility, complete incontinence and muteness. I wish that she'd never have to go through any of that. Every decline breaks my heart more and more. :(

Here are a couple of recent photos of mom, taken on Christmas. It was a Christmas miracle that we got her looking (and even smiling!) in the direction of the camera!

Wednesday, December 21, 2016

The Lonely Road

The other night, as my husband and I were laying in bed, I asked him the question:

"If I end up with dementia, would you take care of me or would you put me in a facility?"

There have been many thoughts and observations that led up to me asking him that question. I've been thinking about my mom a lot, reflecting on the last few years with her, wondering if I may inherit the same fate. Sometimes it feels like she is disappearing from the world; like she's the invisible woman that only I and my close family can see. Every now and then this discussion comes up with my dad as we reflect on those who have and have not been there for us in this journey.

The fact about dementia is that it is a very lonely disease. It isn't like other terminal illnesses where you are given an approximate amount of time to tie up your affairs and say your good-byes (and doing so while still in your right mind). Rather, it is unknown and most often very long and drawn out. In the beginning, people are shocked with the diagnosis; they express their love and condolences. But as time wears on, people (understandably) go about their lives and lose interest. The person with dementia is left alone to lose their mind and memories and abilities, day by lonely day.

We've been very fortunate to have many family and friends step up to comfort us and help ease to our burden throughout this journey. When Mom was initially diagnosed, there were many who expressed their condolences. We had offers of caregiving help-physically and even financially. But there's a huge difference between talk and action. With as many people who have reached out to us, there are equally as many who have rarely acknowledged the situation. People that my mom have worked with or served with at church; women, who at one time or another my mom has considered to be very close and dear friends, who have never once visited her since her diagnosis or even call to ask how she's doing (the same goes for my dad). There are family members as well who rarely, and some who never, stop by; family members who my mom was very close to, who never pick up the phone to call my dad and ask how she, or even how HE, is doing.

Life goes on, and it has to. Everyone has their own struggles to face in life. We understand that, but it's lonely all the same. And I would be lying if I didn't say that it's been hurtful that certain people haven't called or visited over the past 5 years. When we think of the life that Mom led, loving and serving and giving to others, it's sad to feel as if she's been forgotten about that easily; that maybe she didn't mean as much to people as they meant to her.

And maybe that's the not the way it really is. Maybe she's not really forgotten. Everyone handles grief differently. Sometimes people don't know what to say or how to react. Many may feel that she doesn't know them anyway, so there is little purpose in visiting (though the visits didn't happen even when she did still remember certain friends and family members). I've been very transparent in sharing our journey so maybe some of these people read my blog, unbeknownst to me, and feel that they already know what's going on. It's a hard situation all the way around.

A couple of years ago, I had somebody close to me go over a couple of times to sit with mom. She was friends with mom but I wouldn't say she was super close to her; she was much closer to me. After the second time, she told me, "I just can't handle seeing your mom like this, so I won't be going over anymore." That comment left me feeling so angry and hurt and alone. As hard as she claims it was for her, imagine what the pain must be for my dad to see his sweetheart decline every single day. Imagine how hard it is for my mom's children to watch this disease take her over and transform her into a stranger; how hard it is for us to change roles as we bathe her, change her, care for her; how hard it is for our kids to lose their grandma. I don't think this person intended to hurt my feelings at all. But since that day I can't recall a time she's asked how my mom is doing (though I occasionally volunteer information) and our relationship hasn't been the same. I feel abandoned. The avoidance from friends and family members does cause pain; not just to me, but to my dad as well.

I don't write this post to guilt or shame anyone, but rather to help people to understand what every dementia caregiver goes through. There is a common theme in many of my online support groups and that is the feeling of being alone, especially for the main caregiver (most often the spouse; in this situation, my dad). I share this for those who may wonder how you can help ease someone's burden; I give the following suggestions:

1. Don't avoid. This is our reality EVERY. SINGLE. DAY. Please don't pretend like it's not happening. Don't be afraid to ask how someone is doing-both the person affected and the caregiver. I always feel really grateful when people ask how my dad is doing because they recognize that this is just as much a struggle (if not more) for him than for my mom. You don't have to talk about it every single time you interact with the person, but don't be afraid to check in now and then. You aren't going to offend or upset a caregiver by talking about it!
2. Absolutely, do not say or offer anything that you don't mean! We've all heard it: "Let me know if there's anything I can do to help" and then when called upon for help, there's no response. I think that's worse than not saying or doing anything at all. It's happened to every caregiver out there. If you are serious about wanting to help, it's more helpful to give specific suggestions of what you can do. Sometimes you may not know what to do, and that's okay! Just don't offer anything if there is no intention of following through.
3. Give a phone call or a visit now and then. Even a note or a card in the mail can brighten up a caregiver's day. I know it seems intimidating, but it is appreciated and shows that you really care. I know it means a lot to my dad when people have dropped off treats or sent cards, or even called to check in on how they're both doing. Additionally, keep in mind that people who care for loved ones at home have little social outlets. It's nice, sometimes, to have interaction with other people. It can get really lonely.
4. Be mindful that caregiving is a 24/7 job. A lot of times, people will call and ask my dad for help with something, and he's not one to say no. He always makes time to help people. And truthfully I think sometimes he likes it because it gives him another outlet to interact with people. But...people may not give thought that in order for him to go out with them or to go over and help, that means he has to have a caregiver at home that he is paying (or one of us has to come over and sit with mom). It's nice for a caregiver to be able to get out; maybe help provide a way so that they can get out now and then!
5. Don't be afraid to recognize special days: birthdays, anniversaries, etc. I have heard from many caregivers who feel sad when people close to them fail to recognize these special days. Perhaps they feel it will upset them to say anything; not bringing it up doesn't make us forget about that day. Be mindful that holidays are going to feel especially sad and lonely, especially while still caregiving as the person is still here to care for. We are grieving for the loss of someone who is still alive and unless you've been through this, it's difficult to describe the many emotions that go with it.

Before I end this post, and because I don't want to come off as ungrateful, I want to be sure to recognize that we have been luckier than so many other caregivers out there. Though it hurts with the people who have seemingly deserted us, there are so many who have been and continue to be here for us and for that we are sincerely grateful. Sometimes it's even been strangers, or friends who never even knew my mom before dementia, who have shown us incredible support! Those people have truly lightened the load and I can't tell you how much we love you for being there for us.

Friday, December 2, 2016

Eventful Weekend


We had quite an eventful day last Sunday. Okay, the picture of the firetruck may be over dramatic, but I got your attention ;) (The firetruck DID make an appearance).

Let me start by reminding you of Mom's obsession with her jewelry. She no longer attempts make-up, but she still makes sure her earrings are in her ears and her wedding ring is on her finger. Except that it's not really her wedding ring. She dropped her real wedding ring in the driveway a couple of years ago (thankfully we found it and locked it away!) Since then, we've put a "cheap" ring on her finger. It was an adjustable flower ring that belonged to her mother. Over time, the rhinestones have all fallen out and the metal has discolored. Over the summer, when Dad went on a cruise with his sisters, he picked out a silver, stainless steel ring for mom to wear as her wedding ring. I thought the gesture was SO sweet; Mom was just content to have a ring on her finger and it fit her perfectly.

Fast forward a few months...Mom has been dealing with some swelling, mostly in her ankles. I bathe her 3 times a week and I haven't noticed any problem with her ring. On occasion, I will move it around and make sure everything is okay but apparently it's been a while since I've checked. Our caregiver texted me on Saturday to say that she noticed Mom's finger looked irritated underneath the ring and that it appeared to be stuck. The next day (Sunday), while family gathered for dinner, I looked at Mom's finger. Her finger was so swollen that I couldn't move the ring at all. My Aunt Peggy and I got some olive oil and attempted to remove the ring from her finger. But...it wouldn't come off. We tried and tried and could only manage to move it just beneath her knuckle. With the ring slightly moved, we were able to get a good look at the red ring that her metal one had left behind on her skin. It looked raw and very sore; the ring needed to come off and soon. But now we had a big problem: how do we get this ring off of Mom's finger?? The ring was so tight that we couldn't get a tool under there ourselves to cut it off. And with her lack of comprehension, many things could go wrong.

As we were all brainstorming, I wondered if we could call a non-emergency line and get a paramedic to come out and cut it off. After some discussion, my husband called the fire department who said that they could, in fact, come over and cut the ring off her finger with a special tool. Twenty minutes later, three firemen walked through the living room door and attempted to get the ring off Mom's finger as my dad, Aunt Peggy and I held Mom still. Mom nervously tapped her foot while she giggled; Aunt Peggy thinks she was giggling because of the firemen, but Mom giggles nervously when people are in her space and trying to hold her still. But who knows, maybe she was checking them out. Ha ha.


Did I mention that her ring was stainless steel? Note to self, stainless steel is almost indestructible! Her tough ring was barely scratched at the attempts of their special tool. Apparently it only works on soft metals. They gave it their best and then decided that this tool was not cut for the job. They had a saw that would work, but decided it was too risky because of her agitation and inability to hold still. They told us to take her into Urgent Care or the ER where they had the ability to sedate her through the process. I hate ER with a passion (none of us wanted to go that route) so I called Urgent Care first. They told me that they didn't have the right tools to do it, so we were left with no choice but to take her to the ER.

By that time, my Aunt Sharon (who is an ICU nurse) had arrived on scene for family dinner. Before taking her to the ER, we decided to give it one last try. Aunt Sharon held Mom's hand in a bowl of ice water, hoping to get the swelling down. Unfortunately, that made no difference and it was more difficult to try and keep her hand in the water. So...off to the ER we went. We sat Mom inbetween my dad and me in the backseat of Aunt Sharon's car while we made the drive across town. Aunt Sharon and Aunt Peggy came for moral support.

At the ER, my dad went to check Mom in, while Aunt Peggy went to get a wheelchair and I held onto Mom in the backseat of the car. We use the wheelchair for doctor's visits not because she can't walk, but because she can't follow instruction and she will either refuse to walk or walk in the wrong direction. It's easier to sit her down and push her where we need to go. We transitioned Mom to the wheelchair and to make a very long and boring story short, we waited in the ER for about an hour and a half before she was finally seen by the doctor. My Aunts took turns pushing her around the waiting room in her wheelchair for the entire waiting time in an effort to keep her from getting out of the chair and running away. Thankfully, it worked and we were able to keep Mom contained and somewhat comfortable.

Once Mom was called back to a room, they would only allow my dad to back with her, despite our protests. We tried to tell them that they would need a second person to hold her but they were insistent that only one person go back. Quite frankly, they were rude and uncompassionate. Of course once they got her back in the room, they sent one nurse out to get another to hold her arm (why didn't they come back for one of us??) Medical attention, particularly ER and hospital visits are extremely frustrating when dealing with dementia because most of the medical professionals really don't know what they're dealing with; at least, that's been our experience. At any rate, the report from my dad was that they were able to get the ring cut off without any sedation, but her ring was so strong that it broke their tool! They had to make two cuts and remove a piece, and then pull the ring apart. Luckily, there were no signs of infection on her finger, although it did bleed a little and was left very raw and red. Poor Mom. We've been keeping Neosporin on it and it seems to be healing well.

Needless to say, it was a big day for Mom, who usually spends quiet days at home or sitting on her chair in the front yard. She threw up in the car on the way home (she tends to get car sick and it was probably too much excitement for her) but she slept pretty good that night!

I didn't hear this firsthand from my dad (so hopefully I'm accurate in relaying this) but my Aunt told me something that my dad told her after everything was over. He told her that while they were back in the waiting room, Dad was sitting in front of Mom, holding her hand. She looked at him and leaned forward and gave him a kiss. What a sweet moment that must have been for my dad. It makes me tear up just thinking about it. Affection has been long gone but every now and then (very, very rarely), Mom will lean over and give Dad a kiss. It reminds me that even when all seems lost, she is still somewhere in there. My dad is her rock and the love of her life. Even though she can't express it in words, I know that she is aware of his love and support for her. I just know it!

Thursday, December 1, 2016

Thanksgiving 2016

Another Thanksgiving has come and gone. Mom hasn't known what holidays are for a couple of years now. I only get to spend every other year with my family for Thanksgiving; the odd years are spent with my in-laws and the even years are with my side of the family. It's been quite a while since I've enjoyed a real Thanksgiving with my mom. This morning, a picture popped up in my facebook memories. It was a picture taken of Mom and me during Thanksgiving, 2010. While looking at that picture, I realized that this was the last real Thanksgiving I had with mom.


In 2010, we knew that something was wrong with her, but we didn't know quite what it was (despite several appointments with doctors and specialists). Mom had come to Thanksgiving at my house that year and was finicky over the food. My Uncle was making the turkey the "wrong way" (he was smoking it on the BBQ), she was having aversions to a lot of the foods and she messed up on making her pies. I thought it strange at the time that her pumpkin pie had turned out runny; mom had always been a master in the kitchen. I remember being slightly embarrassed and confused with the odd way Mom was behaving. I feel a little ashamed of that now, but at the time I had no idea what was going on.

In hindsight, I wish I would've known that that would be our last real Thanksgiving with her. Rather than being annoyed or embarrassed, I would have embraced every moment of the holiday. Thinking about it now bring tears to my eyes. I miss my mom so much.

By the next Thanksgiving turn (2012) she'd received her diagnosis and even though she still somewhat understood what Thanksgiving was, she didn't participate in any of the preparations and she didn't eat any of the food. Thanksgiving 2014 came and went and she didn't even know what Thanksgiving was. This time, I was a little more mentally prepared in that I had no expectations of jogging her memory in getting her to remember what the holiday is. Those days are long gone. Everyday seems to mesh into the next for her; there are no special days anymore.

Thanksgiving dinner was held at my parent's house, as are all holidays nowadays due to the fact that we can't get Mom to leave the house and be comfortable anywhere else. My house is a little more ideal for family gatherings, with a big backyard and plenty of space for the kids to run around and play. Dad's house is a little tighter quarters, but, it is what it is and we make the best of it. There were two highlights of this Thanksgiving. One was that Mom came into the kitchen to make her peanut butter and jelly sandwich right during dinner time, which meant that we had two minutes of her sitting down at the table with the family during our feast! It might sound silly, but it was such a sweet thing to have her sit with us, if only but for a moment. The second highlight was getting this snapshot of Mom with some of her grandkids. Not all the grandkids were there that day, but I was happy to get this picture of her with the kids.

I enjoyed spending time with my family, but it's still really hard without Mom. I often wonder if it's harder having her there physically. It's a painful reminder of all that we are missing. I almost made it through the entire day without any tears ;)

Check back tomorrow for another post about the eventful weekend that followed Thanksgiving!!

Monday, November 7, 2016

Living For Today

Last month I turned 35. 35! I don't feel like I am in my mid-30's! This means that high school graduation was half my lifetime ago-that makes me feel old! I remember when my mom was 35; I was 15. Here's a picture of my mom when she was 35.

I spent a lot of time reflecting throughout this birthday and a terrifying realization hit me. When my mom was 35, she only had about ten good years left before dementia snuck in and robbed her of living. TEN YEARS. Of course she had NO idea that her time was limited. This sad reality got me to thinking, what if I only have ten years left? What would I do differently? What are some things I want to accomplish? What kind of legacy would I want to leave behind?

While I don't want to live my life in fear, the truth is that none of us know when our time on this earth is up. We've been dealing with Mom's disease for quite a few years now and I can't help but to think about all of the things she has missed. Fortunately, my parents had their family young and Mom had a few years of being a grandma (not nearly long enough); they were able to travel to places they wanted to go. But they were just getting started. Looking back in hindsight and knowing that, at my age, Mom's good years left were numbered has served as a reminder to me that our life and our time on this earth is precious. It is a reminder to live life to the fullest each day; to not put off the things we want to do in our lives.

One of the biggest things that I think about is the legacy that I will someday leave behind for my children. What kind of person do I want them to remember me as? I am trying to set the example of service, compassion and love for them. I know I fall short in a lot of ways, but I hope that they will remember me as someone who cared deeply for others and looked to help those in need. I want them to know that I am a woman of faith, who loves the gospel of Jesus Christ. I want them to know how fiercely I love them. A couple of years ago, I started writing journals to each individual child, expressing my love, experiences with them and words of wisdom. This is something I struggle to keep up with, but if I died tomorrow, they would know very clearly (by reading my words) how I feel about them.

When someone we love leaves this world, memories are the most precious things we are left with. If I've learned anything on this journey, it is to make each moment count! Memories are what I will leave behind and I hope that they're good. Now is the time to take that trip (or, at least, start saving for it!), to work through my fears and take risks of the things I want to accomplish, to take every moment to snuggle my kids or read them a book. Life is too short to spend on negativity, to worry about what people think all the time, to hold a grudge. Tomorrow isn't guaranteed but for today, I am here so I will make the best of the time I am blessed to be alive!


Friday, September 23, 2016

Waiting for the Inevitable

I went to a funeral this morning. In fact, I sang at the funeral with my sister. She was a lovely woman from our church (and the mom to one of my sister's close friends); she passed away from a stroke and she also had cancer.

As I sat there, listening to the words of affection that her children spoke, I couldn't help but to think about my mom. And the inevitable fate that awaits us. Since my mom's diagnosis, funerals haven't been the same for me. I look at things differently; I know that death is lurking around the corner. I mourn for the person whose funeral I'm attending, but I also mourn for my mom as I reflect on the emotional loss that I've gone through and anticipate the physical loss I will, in time, endure. I can't help but to think about how my mom's funeral will be. Will there be a lot of people in attendance? Who will come to honor her and to support our family? Who will give the eulogy? Will I have to speak? Will we laugh at the funny memories of Mom or will we be too stricken with grief to smile? What songs will we sing? Will I have to sing? I can't sing at my mother's funeral. Even if it was her request before she was sick. (Sorry Chris-I think you're going solo).

I feel the pain that the family members are experiencing at these funerals because I am experiencing that same pain. I have been experiencing this pain over and over for the past 4 years. I have gone through the emotional loss of my mother, but her physical presence won't allow me to move on. In a conversation with my sister the other day, I made a comment that I almost envy those who have lost their parent quickly in a stroke or accident. It isn't dragging on for an indefinite amount of time as they sit back and watch someone they love deteriorate for months or years on end; they aren't constantly wondering, month after month, year after year, is this going to be it? I'm not saying that their loss is any easier. A loss is a loss; it's hard any way it comes. But the heart cannot begin heal while it is still in battle.

I feel guilty for having these thoughts. More times than not, I don't know if I am quite ready for that physical loss yet. I don't know if I ever will be. It will be hard and it will be another kind of pain to work through. People will say to enjoy what time we have left; enjoy my moments with her. I do feel comfort in hugging her, stroking her hair, telling her that I love her, but how can I say that I enjoy watching my mom struggle and lose her abilities everyday? There is very little left of my mother. Every now and then I may get a smile out of her, but for the most part, she hardly responds to any of my interactions with her and it is another reminder of everything I've lost.

I love my mother. I love her and miss her so much it hurts. I don't know that the pain will ever go away; the battle may end but the scars will remain. But knowing that she is free from pain and from the prison of her body may be the first step to start healing from the nightmare that dementia has brought into my life.

Thursday, September 15, 2016

"Mom"-proofing the House

When my kids were little, they used to get into things that they weren't supposed to. On several occasions, each of them had gotten into my make up and rubbed it all over their faces. I remember one time, my son got into the Desitin and rubbed it all over his cheeks. Vaseline, baby powder, flour...those are just a few of the things they had fun with. One of my favorites was the time that my daughter took apart her peanut butter and jelly sandwich and smeared the insides of the sandwich all over face!


My kids have long since outgrown the phase of getting into things and rubbing it on their little faces. But my mom, on the other hand, has been obsessed with rubbing things on her face. It stems from her make-up obsession, which you can read about in a number of previous posts. Her routine has changed over time; she went from putting on make-up nicely, to wearing dark eyebrows and foundation so thick you could peel it off,to applying make-up in all the wrong places of her face. She was making such a terrible mess with all of the make-up that my dad had to phase it out, leaving her with mostly empty containers in her drawer. She no longer puts on make-up, but she does go through the motions of applying it. After I get her dressed from her shower, for example, she will grab a tube of mascara and, without opening the lid, rub the plastic tube all over her face. Sometimes she will dip a powder sponge onto the lid of her eyeshadow or loose powder and rub it on her face. The motions of putting on make-up seems to be the last ritual left that she remembers, though I don't think she understands the significance of it. She has been in the habit of rubbing something on her face, and that compulsion still lingers.

We aren't limited to make-up anymore. It is the act of rubbing something-anything- on her face that compels mom and it doesn't matter what it is. It used to be whatever she could find in her bathroom: toothpaste, deodorant, soap, shampoo, ky-jelly (we got a good laugh out of that one), lotion, diaper rash cream. Dad removed everything from her bathroom in an effort to stop her from putting things on her face. Not to be deterred, Mom recovered more items from the front bathroom: Dad's after shave, shaving gel, more soaps and shampoos. So, we put a childproof handle on the doorknob. Problem solved. Except that now she opens up the peanut butter containers and rubs that on her face. She got into the laundry room and found cleaners and laundry soap and started to put that on her face (Dad now keeps the laundry room locked). Her newest thing has been opening up water bottles, dumping the water onto her hands and then "applying" the water to her face. And within the past week, she has been opening up the curio cabinet, taking out a crystal bunny knick-knack, and rubbing that on her face! Luckily, Dad is able to lock the curio cabinet; we were afraid she was going to break something!

Needless to say, the house is being childproofed all over again and Mom's skin has been red, bumpy and irritated. A couple of weeks ago, it was so dry and red that it started to peel. I brought over face moisturizer and we've been using that on her face twice a day. That, and locking up everything she could possibly rub into her skin, has helped her skin to improve.

I suppose it's only a matter of time before she loses this last sense of herself that she has been grasping onto. It seems like just yesterday that she wore blue eyebrows, and now that is gone. This, too, shall pass. And when it does, it will be bittersweet.