Friday, July 24, 2015

An Unpleasant Day

I've been fighting myself all day about writing this post. It's hard to share some things that are so personal and private and I don't want to shame my dad in any way (although he has nothing to be ashamed about). Maybe I shouldn't write anything, but then I wouldn't be sharing the whole journey: the not-so-good, the bad and the ugly. Today was an ugly. It was the kind of day any caregiver would dread and I was fuming for the better part of the day.

It started when I stopped by my dad's to drop something off for my Aunt, who watches my mom on Friday mornings. My dad was supposed to be gone, but his truck was parked almost midway down the driveway with his front end hanging a couple feet into the street, which I thought was odd. I walked up to the porch and noticed a white car parked across the street that I didn't recognize. As the kids and I reached the doorstep, I pulled my house keys out and went to unlock the deadbolt only to discover that the screen door (which is always kept locked to prevent mom from running out) was not only unlocked, but cracked open. Strange, I thought. In a quick instant I wondered if something was going on and when I opened the door I walked in to find two women, standing in the living room and talking to my dad, who was sitting on the couch. One of the women was holding a clipboard and after only a few seconds of listening to the conversation, I knew they were talking about my mom.

I looked over to my Aunt Claudia, who was also sitting on the couch, and gave her a questioning look, wondering what this was all about. She mouthed the words "social workers" to me. Weird, I thought, crinkling my nose. I left the room, while they continued talking, to check on my mom in her bedroom. Nothing seemed out of the ordinary in there. When I returned to the living room, the social workers were finishing up their visit and said good-bye to my dad. As soon as they left, I turned to my dad.

"What was that all about?" I asked him.

"Well, it seems somebody called Adult Protective Services on me," he said, matter-of-factly.

My jaw dropped and I couldn't even find words to respond. It made no sense. Who would do such a thing? Why would someone call and cause trouble for my dad? And most of all, what could they possibly have reported??

When I finally found my voice to ask my dad these questions, he replied that the social workers were not allowed to tell who made the call or why. All they could tell him was that *someone* called because they were "concerned" about his wife.

The social workers checked in on my mom and talked to my dad, who had nothing to hide. He answered each question honestly and opened up about some of the struggles we've faced. They talked to him about the option of putting my mom in a facility; my dad told them it was out of the question. In the end, I think they were satisfied with all of my dad's answers and could see that he is doing his best to take care of his wife; they didn't say anything about a follow up but I don't really know what the procedure for that sort of thing is (if they would tell him or not) but I fear this has opened a door to social workers now breathing down our necks and watching our every move.

Let me just tell you how I felt when he shared this information with me. You know what they say about Mother Bear Claws? It was something similar to that. How dare somebody call Adult Protective Services on my dad!! My dad loves my mom more than we even know. I can see it in his everyday actions for her; working hard to find a way to keep her at home where she is comfortable, keeping her happy with her pb&j sandwiches and "slim fast" and Bath & Body Works; buying her endless supplies of make-up and following after her on her walks; disabling hot wires of her blow dryer just so that he doesn't have to take the blow dryer away from her completely (she loves that blow dryer!); switching out her non fat milk to almond milk in an effort to get her something more nutritious and easier on her stomach (talk about a pain in the neck!)...these are just a few of the great lengths that my dad goes to for my mom to see that she is safe and happy. If my dad didn't love and care about my mom so dang much, he would've put her in a home a long time ago. None of us are perfect and this is a hard, untraveled road that we find ourselves going down. Mistakes may be made, but make no mistake about her well-being; mom is getting the best care possible at this time. At the end of the day, people may disagree with the way we deal with things, but it is nobody's business!!

I've spent most of the day stewing over this issue. I can't figure out who would do such a thing. I would hate to think it could be any of our caregivers or family members. Most of the immediate neighbors know my parents. If there was any concern, why would somebody think they need to address it with Adult Protective Services? I've tried to think that maybe it really was out of concern for my mom but let's face it, calling APS is a chicken move! If there's any concern, they could have talked to my dad. Instead, this person has added even more stress into my dad's life because now, whether he realizes it or not, APS is going to be checking in on him, watching for any and every little mistake; this is what worries me the most. Until someone has had to care for their loved one with dementia, they don't understand it-not social workers, not therapists, not doctors. The last thing a caregiver needs is someone breathing down their neck and feeling that they aren't doing a good enough job.

So, for the person who called APS and to everyone else reading this post, let me say it loud and clear: MY DAD IS DOING A GREAT JOB CARING FOR MY MOM!! I admire him greatly and have learned many lessons of love from him. There's nowhere else that my mom could be where she would be better taken care of or loved more than with my dad. So...if anyone has a problem, either brave up and bring your concerns to my dad, or go away!

Monday, July 20, 2015

Raelynn's Special Day

Yesterday was a bittersweet day. Sweet because it was my niece, Raelynn's baptism day. Bitter because our family wasn't whole.

Baptisms are special events in our families and our religious culture. As a family, we are always there for each other for these important life events. Of my parent's 12 grandchildren, 6 have been baptized; Raelynn was grandchild #7. She is also the first grandchild baptism that my mom has not attended. The last two were baptized two years ago and even though mom was struggling with her dementia, she still went to church most Sundays and understood the special ordinances that were taking place. She was excited and happy for these occasions and for those of you who have been reading my posts from the beginning, you may remember that mom was even a bit obsessed with God and church for a while. It was one of her favorite things to talk about...over and over and over!

I can't tell you the last time mom has mentioned anything about church. It's been well over a year since she's attended church. She had no understanding of Raelynn's special day whatsoever. Her absence was noticed and felt by all of us. When we took our picture together in the hall, as we have with each baptism, I felt sad realizing that this was the first (but not the last) baptism that mom has missed. Several of us noted that grandma wasn't there. She's missed so much over the past couple years-particularly the past year. Yet we've only just begun. My mom won't be there for my other two boy's baptisms, or for any of her grandkid's high school graduations or weddings or baby showers. Her presence will always, always be missed.

Monday, July 6, 2015

While Dad Was Out

Last week, my dad flew out to his home state of Connecticut, with his 4 sisters, to attend their cousin's wedding and have a little family reunion. He was gone for 8 days and 7 nights. It was a very much needed break for him and I'm really glad he got to go. I know he worries leaving mom behind, but he knows that he can count on us to help him out.

I've watched mom plenty of times in the past when dad has gone out of town. We have the usual routine of caregivers during the day and between my sister, her husband, my husband and myself, we rotate turns spending the night. I'm finding it a bit more difficult as her disease progresses. She is to the point now where she needs some help getting into the shower, so that was one of our jobs while dad was out-making sure she showers. It's not an easy thing to have to disrobe your parent and force them into a shower. The first time I had to do that, I really felt like I was violating her in some way. The first time is the hardest. After that, you learn what is necessary to do and you just learn to it. It's probably more difficult emotionally than anything else.

It's hard to put into words all the emotions that I felt during this week of caring for mom, but I was glad that I was able to come over and help my mom (and dad). While it's been difficult to have to take on a parent role with my mom, there were some tender moments as well. One night, mom was laying in her bed and I went to lay down beside her, just to keep her company (and maybe for my own comfort as well). She was mumbling that her face hurt. She hasn't been washing it well and I discovered that she is using her body wash as a facial moisturizer; needless to say her skin is dry and peeling. I knew she would fight me, but I decided to try and wipe her face with a cleansing cloth. At first, she protested and pulled her sheet over her head and began laughing hysterically, which made me start laughing as well. Eventually, she let me finish wiping her face as the dead skin wiped off in the cloth. I brought over her face moisturizer and began rubbing it into circles on her face. She initially started swatting my hand away, but she finally calmed down. She laid her head back and closed her eyes as I rubbed the moisturizer into her thirsty skin. For a quick minute, I thought she might have even enjoyed the nurturing.

There were definitely ups and downs of the week. I felt a huge weight of responsibility on my shoulders while my dad was gone. Even though I had help from other people, ultimately I felt the most responsibility for her. I was in charge of coordinating the caregiving schedule so I had to worry if people would show up or not and fill in when people cancelled at the last minute (which I usually do every week anyway, but not 24/7). It's no different than being a parent; your children are on the forefront of your mind constantly, and that's how it was with my mom. But with the responsibility of caring for someone also comes a growing love for that person. My heart swells with love for my mom. It is so hard to balance my family and kids and all of my other life responsibilities and I'm not perfect. By Thursday night, I admit I did have a little bit of a meltdown and was feeling discouraged. But I think that comes with the territory of caregiving. Caregiving is hard and it takes a lot out of you, and there are times that you have those meltdowns, but it doesn't change your love for the person. It made me realize and appreciate more of the weight that my dad carries around with him every day. I am really glad that he was able to have such a fun week with his family; it is well deserved.

I feel impressed to say one more thing; someone made a comment to me that I want to address. It was insinuated that I write about things to put it out there and show off to everyone what I do for my mom. That insinuation really hurt my feelings. It's often difficult to write the things that I do and I hesitate sometimes to do it. And I've always had the personality that worries what people will think (though I'm learning, with age and experience, to get over that). I write for a few different reasons: to educate about the disease, to help others in their journey and because writing is therapeutic for me. People leave me very kind comments which I appreciate, but it sometimes makes me uncomfortable because I really don't feel like there's anything extra special about what I'm doing. I think it is what anyone would do. I do not write to seek praise or to get a pat on the back, simply to share our journey with others.

Tuesday, June 30, 2015

Pill Popper

I remember my mom telling me a story about my twin brother. We were small kids; probably about 3 or 4 years old. Somehow, Joe had climbed up onto the counter and gotten into the Dimetapp cough syrup. I don't remember how much she said that he drank, but I remember her recounting her panic and calling the doctor right away. Luckily, my brother was fine and suffered no side effects from getting into the medicine.

Today, I took my kids to the beach. I was due back at my mom's this evening because I am watching her overnight for my dad. Of course we hit some traffic on the way home and I was running a bit behind. I called my brother-in-law, Melvin, to see if he could come sit with her until I got the kids home and fed; he willingly came over. I didn't even think to tell him to put out mom's nighttime medicine because I knew I'd be there long before it was medicine time. Plus, I thought that my dad was waiting a little longer to put her nighttime medicine out because she was getting a little mixed up and taking them sooner than she was supposed to.

Well...this was almost a dangerous mistake I made. As you probably know from some of my other posts, mom is obsessed with her medicine. She paces around all day asking for it and by 6:00 this evening, when her pill container didn't show up on the counter, she was getting a bit of anxiety. Melvin saw her go into the kitchen; he was sitting on the couch watching TV. He saw her walk around the corner by the fridge and suddenly heard her laughing. When he went to check on her, he found empty bottles of Pamprin and Allegra beside her and a cup in her hand, ready to get water from the fridge. He saw her mouth full of pills and, thankfully, was able to retrieve them out of her mouth...all 31!!

Of course I felt a little panicked when Melvin called to tell me this. Thank goodness she laughed her mischevious little laugh, and thank goodness Melvin got up to check on her! I feel horrible that this happened under my watch (while dad is gone). Needless to say, I packed up everything that even resembled medicine capsules and put them in a safe place for dad to sort through when he gets back.

Friday, June 26, 2015

Summer Days

Summer is here and I've been absent from my blog again. I've been trying to keep a steady balance of keeping the kids busy, helping with my mom (and filling in for caregivers who are gone, including my dad!), working for The DEANA Foundation, keeping up on household responsibilities (a never ending and all consuming task), running to and from swim practice and meets, and working on my new "calling" for church. Oh, and did I mention that my niece-daughter is getting married next month? Yes, I've been planning a wedding as well. My plate is definitely full but those of you who know me, know that I wouldn't have it any other way. At least I never have time to be bored! ;)

A couple of years ago, when I started my Mondays with mom, I wasn't very excited about bringing my kids along with me during their summer break. I was worried that they would be bored or complain about having to give up parts of their vacation to come and sit with grandma. Oh how my perspective has changed! It's true that we've had to turn down some play groups in order to keep our commitment to being with mom on Monday. And I'm sure there are other places they'd rather be. Don't get me wrong-if it were a perfect world, my mom wouldn't be suffering with this horrid disease and, consequently, we wouldn't be spending every Monday caring for her. Rather, we would be planning fun summer outings with her! But over the past couple of years, I have learned to appreciate and value the time that we spend here with her. There are definitely days when they get bored and drive me nuts. But even they are learning to appreciate that Mondays are the day we take care of grandma.

My daughter, Aubrey, is a very compassionate soul. Many people know her feisty, spirited side but don't always get to know this loving, sweet side of her, which I adore. Oftentimes I overhear her talking to her brothers about how much grandma loved them, how she used to be so excited to be a grandma (sentiments that I've shared with her). I hear her and her brothers wishing away the dementia. Sometimes, she will be the leader in picking a chore to help grandpa around his house (not sure if he ever notices).

Lately, I've been observing Aubrey's interactions with my mom and it warms my heart. Every time we come over, she now tells grandma "hi" and gives her hugs. My mom never hugs her back or responds (unless it is to brush her away) but Aubrey understands that it is the disease causing her to behave that way. I encourage her to keep on hugging grandma and telling her she loves her anyway. My boys are not quite as affectionate as my girl, but now and then they will follow big sister's example and give grandma hugs and "I love you's."

This morning, I went into my mom's rom and lay beside her on her bed. I often do this; she usually hides from me underneath her sheet and begins rambling about how dad doesn't support her with money and credit cards, followed by promptings for me to leave her room because,

"You can't see me napping."

I let her ramble. I just like to be next to her. I know everyone says she's not my mom anymore; that the person she once was is gone. And I'm not in denial about it. Yet, sometimes it gives me comfort to just lie beside her and hug her. Sometimes she will push me away, other times she will laugh at me, and many times she will simply ignore my affections altogether. Today, while I was laying beside her, my sweet daughter came into the room and mimicked what I was doing. She laid down next to grandma and gave her a big hug, saying,

"I love you grandma."

For the next little while, we sat beside my mom, giving her hugs and listening to her ramble; Aubrey repeating her "I love you's."

There are many times when I feel like I am messing up on this whole parenting thing. But moments like these, when I see the love my children have developed for their grandma, despite their lack of knowing the "real" grandma, warms my heart and gives me encouragement. I'd give anything to have my mom back; since that isn't going to happen, I continue to look for the opportunities to teach my kids of love, service and compassion. I can't think of a better way to spend our Mondays!

Monday, June 1, 2015

From Daughter to Mom

One of the hardest things about dealing with this disease is coming to terms with the role reversal which it brings. As my mom's abilities become less and less, we have to step in to do more and more for her. With every forced clothing change or face and hand wash after lunch or assistance in the bathroom, I feel like I am ripping her dignity away from her; especially when she tells me,

"I'm your mom, you should support me."

Deep down I know that I am doing the right thing and taking care of her the best that I can. Still, I feel as if I am disrespecting- and in some instances violating-my mom. I can only imagine how my dad must feel.

Today was probably the toughest in this aspect that I've faced in a while. It wasn't just one thing that I had to play mom for today. It was several. It started when I first arrived to her house. Dad had warned me that mom's make-up has gotten dramatically worse over the past few days. I didn't think that was possible but sure enough, mom had globs of make up on her face when I walked in her room. I can assume that she poured a bottle of foundation in her hands and then smeared it all on her face, without rubbing any of it in. It was wet and runny and gloppy. I got some toilet paper and wiped her face in sections, with her swatting my hand away in between each section. I had to wait until she was distracted with brushing her hair to quickly rub some more of the residue off her face.

Mom's been so antsy lately to get out of the house. Unfortunately, she doesn't get out often because she is difficult for a lot of her caregivers to manage. I don't mind taking her out; I usually feel like I can handle it (although it's getting harder and harder when I have my 4 year old sidekick in tow). I knew mom wanted to go to her sister's, so I told her that I would take her. She really wanted to get exercise and I kept repeating to her that she could walk up to the top of the street and then get in my car. The instant that front door was unlocked, mom plowed through the door and sprinted up the street. I quickly got my son and myself in the car and followed after her (thankfully she used the sidewalk this time). By the time she got to the top of the street, her sprint had turned into a shuffle and she was panting quite hard. I urged her to get in the car and she did.

When she was ready to leave her sister's house, she was insistent again on walking. My Aunt lives on a busy street and I am not comfortable with mom walking to the end of the street alone as she tends to walk in the middle of the street now. My Uncle helped me block the door so that I could get a good hold on her arm before she darted out the door. I practically had to drag my mom to the door (she was trying to drag me to the street) and my Uncle and I finally got her in the front seat, buckling her seat and closing the door. But mom is mischevious. As soon as I began walking around the car to get to my side of the car, she unbuckled her seat and darted out the door. My Uncle caught her and I decided it would be safer to put her in the back seat with the child lock on. I tried to get her seatbelt on, but she kept taking it off. Unfortunately, we drove the mile home without her seatbelt fastened, but the child locks prevented her from getting out (she reminded me, also, to lock the windows!!) I forgot to mention that in the process of getting her into the car, she spilled her opened can of root beer (which she keeps in her purse) ALL over my car. Ugh.

Once we were at home and mom went back to her room, I tried to get her to change her pants. She had root beer and jelly all over pants but of course didn't understand the need to change clothes. I knew she'd make a big mess everywhere she went, and especially on her bed, with her pants in that condition so I tried to take control of the situation and change her pants. That meant pulling down her pants and physically fighting her to get them off. This is where I feel as if I'm violating my mom. Sometimes I just don't know if I'm doing the right thing when I have to be forceful with her, especially when it violates her privacy. As I was trying to change her, I made a strange discovery. Mom had on no underwear beneath her pants. I'm not sure how she missed that step in getting dressed, but poor mom forgot to put them on (I have no idea if this is a first or not). Furthermore, I discovered that both her undershirt and her bra were on backwards. I have to admit I chuckled a little bit at that one; sometimes I don't know whether to laugh or cry so to keep my sanity I try to find the humor. After being pushed and kicked at, I lost the battle with changing mom's clothes. She's a lot bigger than me nowadays and while I am pretty good at restraining her from running into the street, I am no match against her at clothes changing time. Thankfully, my dad came home around noon in between appointments and was able to change her. It really amazes me how he is able to just get in and get the job done.

I'm not sharing any of this to embarrass my dear mom; it's not really her I'm writing about. It is the disease. Still, I debated if I should post about this or not (particularly the underwear issue); there are a lot of things that I opt not to write about because it feels too personal. I do feel a little bit of guilt for exposing some other personal situations. But I want people to understand the real challenges of this disease. Dementia isn't only losing memories; it's losing all abilities. It's so much worse than portrayed in movies like "The Notebook". It's an ugly, horrible disease that rips away all dignity.

I have readers who have written to me and shared that my blog has helped them to know what to expect from their loved one who is stage(s) behind my mom; I write this for them as well. It's not easy to see what lies ahead, but knowledge is power and preparations (mentally and physically) help a lot in the management of disease.

And I suppose I also needed to share some of my thoughts for my own therapy. I try to be optimistic and find humor when I can. Overall I'd like to think I'm pretty good at keeping positive and being strong. But today left me feeling really down for some reason and I felt like I needed to write to get some of these feelings off my chest. There are days when I feel like I'm not ready to lose my mom (physically) quite yet, and other days where I wish that she could leave this earth before the rest of her dignity is completely gone. I hate what this disease has done to her. Dementia is a beast.

Monday, May 18, 2015

Happy Birthday Mommy

I'm a week late in posting this, but last Monday (the 11th) was mom's birthday. I wanted to blog about it, but I've been pretty busy and to be honest, I didn't have anything too positive to say. It was a bit of a disappointment, to say the least. We all knew that mom would probably not remember her birthday; afterall, the last birthday she remembered was last summer and she didn't understand Mother's Day (or any other holiday). So you'd think we would be prepared for the disappointment. Nevertheless, we thought-whether she understood her birthday or not-we would take her out to the mall and let her shop to her heart's delight at Bath & Body Works (followed by dinner at her favorite place, Miguel's). Mom has been extremely antsy to get out of the house lately, so we figured she'd jump on the chance to go out to the mall.

We prepped her days in advance of our shopping plans with seemingly no comprehension on her part. Then, on Sunday, she surprised us all by saying that dad was taking her to the mall "tomorrow". We felt optimistic that she has grasped something we had said. But the optimism was short lived. I arrived at her house at 4:00 on her birthday to help my dad get her ready to go to the mall. To make a long and tiring story short, mom couldn't understand what we were trying to get her to do. I brought the kids in to sing Happy Birthday to her, but they may as well have sang it to the wall for the response they got from their grandma. I thought the tune might-just maybe-spark a memory in her. We showed her her bottles of body lotion, stating that we wanted to take her to get more. Nothing. Mom sat on her bed and fixated her attention to the clock, waiting for it to turn to 4:30 which would allow her to go and eat her pb&j sandwich for dinner. We tried for more than half an hour to get her out the door until we finally resigned our efforts. I could tell that my dad felt let down and our moods all shifted from hope and optimism to sadness and defeat.

If there is anything positive that we can say about mom's birthday, it is that we had a show of love and support from our friends and family. We had set up a fundraiser for The DEANA Foundation, honoring it's namesake's birthday, at-where else?-Miguel's Jr. Throughout the day, I received texts, pictures and posts from friends who were dining at Miguel's and wishing my mom a happy birthday. I can't tell you how much that means. Though my mom's memory fades, the memory of the person she once was will forever live on.

(The top picture was taken when I was delivering my first baby in 2005. The second picture was taken on Mother's Day; it's a blurry shot but that's all we can get these days).