My Heart is Happy

My heart is happy . . . as happy as it possibly can be knowing and living with the fact that my mother has Alzheimer’s Disease and that things will only get progressively worse. But four months ago, my heart was completely broken. After a lot of thought and consideration, my husband and I chose to place my mom in an Assisted Living Memory Care facility after co-caring for her at home for five years. It was dreadfully exhausting and our stress levels were beyond high. It wasn’t healthy for me, or my family, and honestly, I felt that my mom would do better in a place with daily activities, consistent routine, the social aspect of interacting with other residents, three meals per day (as she was starting to refuse meals at home and unintentionally losing weight), a locked unit (since she started sneaking out of the house), and 24 hour nurse care.

We were warned by many that we’d encounter a difficult, but normal transition period with this move – where mom wouldn’t want to be there; she’d want to go home and she’d ask to go home. And we were even told that she may never completely transition. And so, I planned for this period, and logically I knew in my head this wasn’t going to be easy but that I had to be strong. I even joked with my friend that my mom is so stubborn that she will never transition. And though we joked, I think we both believed it might be true, that she would never fully transition with this move.

The first couple days were completely awful. I related it to dropping your baby or toddler off at preschool as they scream and cry as you walk out the door and your heart completely breaks. That’s exactly how it was day one when we moved mom into the Memory Care home. Mom cried and pleaded for me not to leave her there, and so, I cried my entire drive to work and the entire day at work. I called the nurse’s station probably a hundred times (okay, I’m exaggerating a bit) throughout the day to see how she was doing, and they allowed her to talk to me (which was nothing but tears from both of us), and the nurses told me that mom wouldn’t leave their sides. Fortunately, they were all so accommodating and made her feel as comfortable as they possibly could.

After day two I wanted to go visit, but due to the rough transition, the nurses suggested it might not be a good idea just yet. And honestly, though I truly wanted to see her, I also dreaded going to see her because I knew I would have to deal with the heartbreak of the crying and pleading to take her home, and I just wasn’t ready for that. Honestly, I didn’t want to face any of this anymore. It wasn’t until day three that I finally went to visit. It was so terribly traumatic . . . she just about took me to the ground when I walked through the door, as she grabbed me and hugged me and started sobbing in my arms. She was very confused, didn’t know where she was or why she was there, why I had left her, just completely out of sorts. My mom’s doctors, her neurologist, the memory care nurses, and much reading, had taught me about therapeutic lying . . . white lies that can benefit an Alzheimer’s patient. So, when mom asked why she was there (repeatedly), I gave her the same answer every single time, “we’re going on vacation, so I need someone to take care of you while we’re gone.” She seemed to be pretty content with that answer, knowing that she would get to come back home as soon as we were back from vacation, and thus, the crying would stop. But every day I would go visit (and I went every day for quite a while) she would forget why she was there and the crying would be just as bad as it was on day one. And so, I continued to tell her the same “therapeutic lie” every day, and then she would calm down. By the end of the week, I couldn’t take it anymore, the heartache, and the begging and pleading to take her home. I told my friends and my husband that I simply couldn’t do it anymore and I wanted to bring mom back home. And though I knew my thoughts of bringing her home were illogical, I was going off my emotions. Fortunately, everyone else didn’t have as much of an emotional tie as I did, and therefore, were able to talk some sense into me to give it some more time. Although, Damian said he would support me no matter what decision I made, even if I chose to bring her back home, I know he truly wanted me to give it more time as well. And so I did.

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Just a few weeks after move in day, mom was as happy as could be. Happier than I’ve seen her in a long time. She met a man! A man who made her feel like she was in “seventh heaven”, as she claimed! She thanked me over and over for taking her there because she never would have met him had she not been there, and then even asked me if she had to leave after we got back from vacation (the one thing she simply would not forget – that she was coming home after our vacation). Luckily, that therapeutic lie, wasn’t a complete lie. Our family WAS going on vacation, but it wasn’t until three months after we placed her into the facility. So, I was easily able to tell her, “no mom, you don’t have to leave after we come back from vacation. If you want to live here permanently so that you can stay with Tom, I just need to let the manager know and you can rent this apartment as long as you’d like.” (I always try to refer to it as an apartment so that she doesn’t feel like she’s locked up like a prisoner.) So, when I told her she could stay, she was thrilled beyond any joy that I’ve seen from her in a long time! And she still thanks me often for taking her there, as she has met the “man of her dreams”.  Though she still tells us crazy and off the wall stories that make no sense at all, never recalls our lunch outings every weekend, is slowly forgetting certain people in her life, and has no clue what she did or ate a half hour after meal time, ultimately, mom is happy, and this . . . this makes my heart happy ♥

Just a few photos of mom in her happiest moments since her move.

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Emotional Roller Coaster

The past six months have put me on the biggest emotional roller coaster I have ever been on. I knew care giving for someone with Alzheimer’s (my mother) would have its ups and downs, but I never realized it would bring so many tears and laughs all at the same time. The tears from watching her decline, and the laughs from those who support me and help cheer me up.

Watching the decline with my mother has been so very tough, and sadly, we’ve been fighting to stabilize her moods and behavior since this past March. It began almost all of a sudden when she started having separation anxiety, from me, (which I’ve slowly learned that I am her “security blanket”). Unfortunately, I work a full-time job and can’t be with her 24/7. But she had a hard time comprehending this, and would cry every day while I was at work. And then grab me and hug me every day when I walked through that door, crying some more, “thank God you’re here and you’re safe!” For some reason, she would relate me not being there to me being dead. Definitely a gruesome thought, and it actually freaked me out in the beginning, knowing that she thought I was dead, but eventually it saddened me to think how awful she must feel inside thinking her only child is dead. So, I embraced her daily hugs and crying, assuring her that I was here and I wasn’t dead, but I knew that she couldn’t go on feeling like this every day. How miserable of a life is that?!?!

I contacted mom’s neurologist in hopes for a solution to her constant crying and delusional thoughts of me being dead. He immediately started her on an antidepressant. Thank goodness, within a couple of weeks we were finally seeing some relief! I couldn’t have been happier… UNTIL, about a month after, the side effects of the new medication began to kick in. Embarrassingly, the side effect was diarrhea. Sadly, due to previous and frequent stomach issues with mom, we didn’t think of the medication as a possible cause. And in any other circumstance, I probably wouldn’t have mentioned this side effect, but it became so bad that the drop in her potassium due to the diarrhea landed her in the hospital. If you’ve ever dealt with Alzheimer’s Disease you may know that a hospital stay can be, and was, so very traumatic for mom. It definitely sent her decline into the disease even further. She never bounced back and definitely hasn’t been the same since that hospital stay.

After figuring out it was the medication that caused mom serious issues, she was immediately taken off of it, and within days, the diarrhea stopped. But soon after, the daily crying and thoughts of her only child being dead began to resurface. So, another new antidepressant was introduced to her, and within days, the diarrhea became an issue again. Stop medication number two! Crying and gruesome thoughts begin again, start new medication number three. Diarrhea begins. Stop medication number three! It was a vicious cycle that we battled for months, until we all came to the conclusion that mom’s body was not going to tolerate any SSRI antidepressants. So, this time we step outside of that box and try a fourth medication, a non SSRI, and instead, a tetracyclic antidepressant. Hallelujah!!! We finally found one that didn’t cause diarrhea! Things will finally stabilize and hopefully make mom more manageable now… WRONG!!! Though, diarrhea was not an issue at all with the medication, we were now seeing daily delusional thoughts and hallucinations with mom.

My support team (those that have been there for me through these trials and tribulations) is actually who helped to bring some laughs in the mix of it all, (but there were also many days of crying). Though it’s sad to know that mom had these awful thoughts, but some of the stories, we couldn’t help but laugh at. The Mafia was in her house and they were out to get her! And sadly, our neighbor/friend/nurse who helps care give for mom every week, was a part of that Mafia, and her husband too! The friends that live with mom, who also help care give for her – he was cheating on his wife, and he paid me off so that I wouldn’t tell his wife. Then, there were nights at 2 and 3 a.m. that someone broke in her house and I had to go over there and make them leave. HA! Me, get a burglar out??? She obviously doesn’t know that I’d be the one hiding in a closet somewhere. But, to her knowledge, I got them out and saved the day! Those incidences consisted of me then staying the rest of the night there with her, after I got the burglar out, and sleeping in bed with her (like a toddler who had a bad dream) in order for her to fall back asleep. Then waking up at 6 a.m. and slowly sneaking out of her bed so not to wake her, so that I could go home and get ready for work. Those were just a few of the many, many, delusions and hallucinations. But, between the Mafia and the cheating husband, mom disliked and became scared of those who were there to help her on a regular basis. And sadly, she began refusing meals from them too, resulting in unintentional weight loss. Eventually she became mean with these people, and soon after, with me too. She was verbally mean, attitudinal, and even got physically violent. Chalking this up to the fact that it had to be the new medication, we stopped it immediately. And within two days, all of the delusions and hallucinations stopped. Thank goodness!

Of course, the crying, the separation anxiety, and the thoughts of my death worked their way back into mom’s head. But I’m happy to say that we have FINALLY found a medication that is working in all aspects. She’s calm, okay, not totally calm, she still has a lot of anxiety, but she’s pleasant, she’s not having diarrhea, or delusions, or hallucinations, and she likes everyone again. Though she still needs 24 hour care, mom is definitely more manageable than she has been physically and emotionally for the past six months. So right now, I’m on the higher end of this emotional roller coaster, and it would be grand if we could just stay right here for a while!

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One Day at a Time

“Ya know, there are two EJ’s living in the house now, and I just can’t seem to keep them straight anymore,” were the words spoken by my mom just last week. Five years ago I would have looked at her like she had three heads had she said that, but considering we are this far into Alzheimer’s, I suppose it’s something I would expect her to say these days. And, “Yvonne, she got upset today and left to go home,” mom also told me in the same conversation . . . very odd, since Yvonne lives with mom. And then, there’s the repeated question I get a lot from mom now, “where am I,” when she’s in her bedroom, or the shower, or her bathroom, or even the living room, where she spends the good part of her day. It seems that not much of what mom says anymore makes sense. It’s so tough these days, tough to hold a conversation with her, tough for her to express a simple thought in her head, tough for her to find the right words in any sentence she’s speaking. I used to be able to figure out what she was trying to say and fill in the blanks to help her along. But now, now she either says things that are completely off the wall, or she can’t find a single word to provide any sort of clue of what she’s trying to say, and therefore, makes it extremely difficult to try and help her along. Though I stated that I almost expect mom to say some off the wall things these days, it still catches me off guard every single time, and it makes me think, where in the world did she come up with that, and is there any bit of truth to what she’s saying? And then, the things she says, they run through my mind over and over, for hours and hours, sometimes even days, until I sink myself into a bit of depression, once again realizing the sadness of this disease, and watching my mom slowly digress.

Yesterday, mom was very afraid. She explained that she has repeatedly seen something pass her by in the middle of the night in her bedroom. And this past time, two nights ago, it scared her enough that she felt the need to crouch down next to her bed to try and get away from it. She proceeded to tell me that she eventually realized she was hiding next to her bed and thought to herself, what am I doing down here, am I going crazy? She also didn’t feel the need to tell anyone about this thing that is passing by her and scaring her, until yesterday, as she pleaded for help. “Can Dr. Lerner do something to make this stop? I just feel like I’m going crazy, and I’m scared.” Good God, how this breaks my heart, to hear how scared she is. It puts this pit in my stomach that constantly makes me want to cry, thinking of how this disease is affecting her mind and how these hallucinations are causing such fear in her. Why, oh why can’t there be a cure for Alzheimer’s?!?!

In the meantime, the doctor has prescribed mom a new medication for the hallucinations. But, in the world of Alzheimer’s, this is only a temporary solution to the problem. Sadly, there is no permanent solution, and this will only get worse. And so…we will just take one day at a time.

There is Always Something to be Learned

As I continue to deal with the daunting feelings of caring for my mom, only 64 years old and six years into Early Onset Alzheimer’s, I am continuously agonizing as she gradually slips away from us. It becomes less and less that I see that person I used to know, that person that was so very independent and extremely strong willed, that person that took so much pride in her grandchildren. And I’m often reminded of that pride when I come across photos in my Facebook Memories of mom and my girls, as she so proudly smiles, glowing with happiness, or being silly with them, but ultimately, just honored to be their grandmother. But now, now that smile is empty, her eyes in a daze, lost if you will, as you would see a deer in headlights, and so completely confused at the simplest of tasks. My girls are missing out on their grandmother, I am missing out on my mom, and my mom is missing out on the many proud moments that I know we would all love for her to be around to enjoy – graduations, marriages, births, simply just watching her grandchildren grow up. It saddens me more and more to see her mind decline and her personality slip away as time passes.

But last night, I actually saw a small silver lining on that gray cloud that I can’t seem to get out from under with this dreadful disease. My oldest daughter, now 13, tells me last night how she learned some things in school about Alzheimer’s disease. As I so deeply engaged myself in what she had to say, I couldn’t help but think to myself that this is the worst thing I’ve had to deal with thus far in my life, but that I am so proud that my children are learning something from this. And so, Brianna proceeded to tell me that it’s so important to keep our brains and hearts healthy to help prevent Alzheimer’s disease. She explained to me some of the genetic information she learned about Alzheimer’s, and the many ways to stay healthy and prevent Alzheimer’s disease, including physical activity, good eating habits, and constantly challenging the brain to stay mentally healthy. She gave me statistics and facts that I was able to talk with her about, in hopes of preventing this disease (as well as many other health problems) in them, and in our family. It was a moment that brought sadness and joy to me all at the same time. And I can only hope that more people in the world will take heart and brain health seriously.

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In the mean time, I will continue to enjoy mom as much as possible in the minimal moments of clarity that she now has, strive to keep myself and my family brain and heart healthy and continuously teach my children to follow this lifestyle, as well as promote heart and brain health to as many other people that I can.

Keeping Your Heart and Brain Healthy: The Prevention of Heart Disease and Alzheimer’s

Companionship

Everyone needs someone . . . even those with Alzheimer’s disease. Though they may not be able to communicate as easily as you or me, or even hold a conversation at all, complete their day-to-day tasks without help, or think the way they used to (as their brains just can’t process things normally anymore) – I have to laugh (at least sometimes, or I’ll go insane) as mom walked around aimlessly the other day carrying one shoe in her hand with no apparent reason. I didn’t ask why, nor did I tell her to put it down. She would eventually realize there was no need to carry a single shoe around. But until she realized that, I wasn’t going to be the one to question her or make her feel “crazy” for doing what she was doing. So, on her way she went, down the hall with her shoe in hand. Regardless of the “crazy” things Alzheimer’s patients do, they generally still have their personalities, their emotions, and their hearts full of love. And with that, they still need someone . . . someone to be there for them, someone to make them smile and laugh, someone to enjoy their pastimes and hobbies with, someone to help them with their day-to-day tasks, to make them feel as if they don’t have Alzheimer’s disease, someone to simply provide them a good quality of life . . . someone to provide companionship.

Working full time (with an hour commute each way, taking 2 extra hours out of my day that I already feel is so very crammed), raising two young children (mind you, who are VERY active in everything – and I wouldn’t change that for the world), spending quality time with my husband, (which doesn’t happen often enough) so that he and I can have a healthy marriage and keep our family strong, and so that I can stay strong, and lastly, trying to have a social life in general, I have realized that as much as I want to, I can’t be that companion for my mom. I can’t be that 24 hour caregiver that I would love to be for her. And the guilt of moving her over an hour away from her home town where she grew up and lived all her life, away from all of her friends, and now not being able to be that 24 hour caregiver, or even there enough to spend quality time with her – this has strangled me for 4 years now, leading me into depression, anxiety, broken relationships with those I love, extreme stress that has affected me physically and mentally, prescription drugs, on and off counseling over the years, and exhausting and frustrated time spent with mom, rather than quality time with her. But being my mother’s only child, who else can I rely on to help me in all of this? Siblings? Not in this case. Family? Maybe . . . but that hasn’t worked out very well. Friends? Here and there, for sure, they’ve all been great and I can’t thank them all enough! But day-to-day, I am all my mother has. And as much as I would love to quit my job and be there more than I am, sadly, that is not feasible, and I don’t have the time to provide her the quality of life that I feel she still deserves with this awful and debilitating disease.

Luckily, after researching and making many phone calls, I finally found a resource that has exactly what I’ve been looking for . . . someone that will provide my mom with companionship. That person who can help her with her day-to-day tasks, that person who will sit and talk with her, make her laugh, smile, or partake in her favorite hobbies and pastimes with her. That person who will get her out of the house and help her to enjoy what’s beyond her four living room walls. That person who will hopefully make her life as good as it possibly can be. And once we get this companion introduced to mom (hopefully she will easily adjust to this new person) then maybe mom and I can enjoy more of the time we spend together. Ultimately, I hope this will relieve some of that guilt that I’ve been holding onto and give mom the quality of life she deserves.

As I sit back and reflect on the past 4 years of my life and when mom was first diagnosed with Alzheimer’s, I never imagined how hard life would be at this point, physically, and even more so, emotionally and mentally. And it scares me to death to think of what is yet to come with this disease. But in the meantime, I will do my best to make the remainder of our time spent together quality time, rather than obligated time. And I think that will allow me to let go of some of that guilt, knowing that mom has some companionship and a better quality of life that she truly deserves.

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Mom and I this past weekend, spending quality time together
as I attempted to bring her up to speed with Snapchat® filters.

Feeling Needed is Important

A hot summer day with plans to attend our neighbor’s surprise birthday party – definitely a fun evening to look forward to! And I won’t lie, I do enjoy myself at parties and events and what not, for the most part. But taking mom with us everywhere we go, and looking after her is like having a toddler all over again. And after having already raised two young girls into their preteen and teenage years, doesn’t make jumping back into “toddler mode” very easy. It’s completely exhausting, to say the least! Sure, I could leave mom at home under someone else’s care, but I won’t lie…I have that little angel on one shoulder and the devil on the other…and when I don’t have mom with me, that little devil is telling me, “you should take mom with you, instead of leaving her home”…so, off we go, wherever that might be, with our new found toddler. I think my husband is starting to think in his head (though he would never speak it aloud) does she have to go EVERYWHERE with us??? Thank you babe for always supporting me!

We begin our rushed day for the surprise party that starts at 4 o’clock p.m. My husband and I get up early to get some yard work done for a party we’re soon to host for our own daughter’s birthday, which is in just another two weeks, then shower and get myself ready, make sure our kids get themselves showered and ready, AND look presentable – we all know how kids can throw an outfit together with no color or style coordination what so ever, or ideally forget to brush their teeth and hair, to just look like a hot mess all together! Next on the agenda, drop one kid off to another party she’s attending before the neighbor’s surprise party, and then it’s time to get mom ready…that’s a huge chore in itself, especially on the days she isn’t so thrilled about taking a shower. Those are the days I have to get creative and explain to her why it’s a good idea to shower that day. Boy, have I thought up some crazy stories…but I’ve been taught by the neurologist that I’m not lying to mom, I’m just being creative to get her to cooperate.  Ugh, I’m such a bad liar!!! Luckily, the creativity (lies) typically work wonders…and within the hour, I have mom showered, dressed, teeth brushed and hair all prettied up! With about two hours to spare before party time, I begin preparing the dish that I’m bringing along to the party. As I’m pulling all the ingredients out, the words from mom’s neurologist and nurses go through my head over and over –

  • Let your mom help you as much as possible, even if she can’t complete the task
  • They want to feel needed and important
  • They want to feel useful and have a purpose in life
  • They may be unable to do certain things, but they still have feelings and emotions

With all these thoughts going through my head, time flying by quickly, and a child that still needs picked up from her other party before we head to the neighbor’s party, I think to myself…this is a great time to have mom help out! She will feel needed and I can use the extra hands! How hard can it be for mom to chop off the stems of the fresh broccoli florets? That’s all I need help with at this point to help speed up the process. Pretty easy task, so I thought. After showing her a number of times, and quickly getting irritated (though, trying my hardest not to show my frustration) because she just simply couldn’t grasp how to chop off the stems, I finally just let her do what SHE thought was helpful. As I chopped the stems off the florets, she would take that stem and chop it into tiny pieces. The chopped up stems would soon end up in the trash, as I didn’t need them, but in the mean time, she felt useful cutting them into the tiniest pieces. It’s too bad I didn’t need them for anything, because I think mom chopped those stems tinier than any food processor ever could have done!

Sadly, we were all a little late to the neighbor’s party and missed out on the surprise, but all in all, we had a great time at the party, and above all…for that day…for mom…she felt needed and useful in helping me prepare that dish…and “feeling needed is important”.

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Alzheimer’s & Brain Awareness Month

With June now upon us, and mom slowly progressing with Early Onset Alzheimer’s, I feel that I should do my due diligence and spread the word that it is Alzheimer’s & Brain Awareness Month – alz.org/June.  So, please, “GO PURPLE” (purple is the official color of the Alzheimer’s movement) and help raise awareness for Alzheimer’s disease and brain health.

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I don’t think I have ever been on more of an emotional roller coaster in my life, than I am now, dealing with and caring for someone with Alzheimer’s disease. And, oh, how hard I try not to wear my heart on my sleeve, or let the emotions that I feel extend to, or effect my friends and family. I try to keep a smile on my face and reply with the words that everyone expects to hear when they ask how you’re doing – “I’m doing good” – because everyone knows, when someone asks how you are, they really aren’t prepared or expecting you to completely break down and cry right there in front of them and tell them how awful you’re doing. So, I simply reply, “I’m doing good” with a smile on my face.

In reality, every time I think I have my emotions in check with this God awful disease, it throws another curve ball at me. In my last post, mom was doing pretty well, and from what I have gotten from others who have dealt with Alzheimer’s, she is STILL doing pretty well when it comes to Alzheimer’s in its entirety. But, to me, we’ve taken another step forward into the progression of this disease. Another step that I need to learn how to cope with all over again, emotionally and re-actively. Another step that makes me wonder how people do it, and appreciate all those people who deal with this disease on a daily basis – family members, care givers, nurses, etc. It’s probably one of the toughest things I’ve encountered in my life so far.

It’s funny, and good in a sense – at mom’s neurologist appointment last week, as usual, she didn’t know the date, nor the month, nor the year (as the doctor asks her every time we go, and she never knows, though this time she was much further off on her answers than she’s ever been). But, when he asked her how she thought she was doing . . . her response was, “I’m doing fine, really good . . . ” WHAT??? How in the world are you doing good, I thought to myself. You can no longer get dressed on your own, or maybe you can if you want to feel the tight neckline of your shirt because you put it on backwards, or wear your undergarments over your pants, or go outside with mismatch shoes, or with no shoes at all, because you forget to put them on. You can no longer shower on your own, or make your own food, not even something as simple as a sandwich. You’re starting to wander outside of the home because you think that everyone has left you if they’re not in eye’s sight of you. How in the world do you think you’re doing good??? I’ll tell you how . . . because with this disease, mom has no clue that her shirt is on backwards, or that it’s not normal to put her undergarments on top of her clothes, or that it’s best to have her shoes on when going outside. Her mind doesn’t know any better, so as long as she is physically comfortable, in no pain, and emotionally happy, then life is good to her . . . and in a sense, that gives me a little bit of relief, knowing that she’s not feeling the stress and the frustrations that those around her are feeling. So, while we move forward in our lives and with this disease, I will continue to do everything I can to make sure that she’s happy. And for as long as I can, I will continue to spread the word for Alzheimer’s awareness in hopes that a cure is found one day. http://www.alz.org/facts/

Smile Through the Tears

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Well, it’s been almost 6 months since I’ve blogged . . . and not for any specific reason, other than I just haven’t had the desire to write. And that desire wasn’t lacking due to mom’s progression in this disease, because actually, she’s been doing very well. I guess it’s just been the mental (and physical) exhaustion of caring for someone with Alzheimer’s. Probably one of the toughest things I’ve ever had to go through. And trying to get myself out of the depressed rut I was in, I honestly didn’t want to blog about it – because then, that would force me to think about the disease more than I already have to. But after many inquiries from distant family and friends on how mom is doing, I thought it’d be best to get off my high horse and keep those who are interested informed.

In one of my last blogs (Is There Hope?) back in September of 2016, I mentioned that mom and I had joined an Alzheimer’s clinical research study through University Hospitals. We are still in that same study with only a month and a half to go. So far, it’s been great! Though there’s a one-third chance that mom is getting a placebo pill, I believe in my heart and mind that she has the actual drug. Maybe it’s wishful thinking on my end, but I see a change that’s been for the better. Of course this drug isn’t even close to curing the disease, nor does it claim to do so, but I notice that mom’s more alert and just aware of what’s going on around her. I feel like we’ve stepped back about 2 years in time with where we are in the disease. Mom rarely follows me to my car door anymore, she knows to go to the passenger’s side, she helped me prepare food over the holiday season, she knows who everyone is and tends to bring up people from the past that she recalls clearly, as she typically follows with a story of a memory she has of that person. She shows more of her personality that I recognize and miss so dearly, before this awful disease got a hold of her! She understand and laughs at jokes that maybe she wouldn’t have recently understood. And she gets excited over things she enjoys, whereas before the study began, nothing seemed to excite her. And now, she no longer seems to be so down and depressed. I surprised her with tickets to “Price is Right Live”, one of her favorite TV shows, and I don’t think I’ve seen her so excited in quite some time! So, all in all, I’m happy that we joined this clinical study, not only for the people who it may help in the future, but for the fact that I feel like it’s given mom a few more good, quality, and fulfilling years on her life, and our lives in regards to the time spent with her.

Left to right:
Mom’s best friend, mom, and I, as we were getting ready to go in to “Price is Right Live”

On the other hand, in asking mom if she feels any differently, or notices any change, she claims she doesn’t notice a thing, and she’s still pretty oblivious to a lot of things. In fact, mentioning the trial drug to her just two days ago, she was completely confused and no longer had any idea that she was on a trial drug or that she was in a clinical research study. She just knows how many pills are supposed to be in her pill-box every day and that she totally LOVES going to see the nurses every month . . . “they’re all so nice” she claims! They make her smile, and she gets overly excited when I tell her that we’re going to see them! So, though she’s lost the connection in her mind that these wonderful ladies are the ones who run the clinical research study, the fact that seeing them makes her smile, is enough to make me happy!

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Walk to End Alzheimer’s

“That was so nice” mom keeps saying . . . ” how much they did and that one song that girl sang”. It was the National Anthem, but mom just couldn’t quite put her finger on the name of the song no matter how many times I helped her recall the name of it.

I chose to participate in a 5k walk put on by the Alzheimer’s Association – Walk to End Alzheimer’s, to help raise awareness and monetary donations in hopes to find a cure one day. I can’t thank my family and friends enough for the support they gave me, from fundraising, to donating, to getting up at the crack of dawn to walk 3 miles on a chilly brisk morning this past Saturday with me and my family.

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The event was perfect . . . a beautiful ceremony, extremely generous vendors and sponsors, and the weather warmed up making the walk as nice as it could be! At first, I wasn’t sure about asking mom to go. Would she be able to keep up? Mom walks slower lately, and 3 miles is quite a distance for her. Would she know what we were walking for? Would she want to walk for a disease that she is probably terrified that she has? Would she want to walk with people that were there for a disease she has? I don’t know, but I thought it was at least appropriate to ask. And I was glad when she excitedly said yes!

We all got to carry (and keep) these awesome pinwheel flowers . . . Promise Garden Flowers, as they refer to them.
Blue – I have Alzheimer’s or Dementia
Yellow – I am supporting or caring for someone with Alzheimer’s or Dementia
Purple – I have lost someone to Alzheimer’s or Dementia
Orange – I support the cause and a vision of a world without Alzheimer’s
There weren’t many blue flowers there, but I was proud that my mom’s blue flower stood out in the crowd with only a few others, and that she chose to join us for this walk.

“There are currently more than 5 million Americans living with Alzheimer’s and that number is expected to grow to as many as 16 million by the year 2050. Our future is at risk unless we can find a way to change the course of this disease.”  Please, please, please take a small amount of your time and do something, anything, to help support this cause so that hopefully, one day, a cure can be found for this awful disease!

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Mom, front and center, gathered by neighbors, family, and life long friends
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Honoring a hope for a cure during the ceremony
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All the kids of our friends and family who joined us on the walk

Is There Hope?

In any bad situation we all hope for the best and have faith that things will get better. But when we’re directly involved or in the middle of a situation, we sometimes have blinders on, more so than an outsider. Children of divorced parents truly believe in their hearts that their parents will one day get back together, parents of a drug addict don’t see that their son or daughter can one day end up dead from an overdose, and someone who is physically abused believes the abuser really loves them. It’s amazing how our brains can sugar coat the truth and cover up the negative that we don’t want to see.

I am not typically a person who likes things to be “sugar coated”….I prefer to hear the brutal and honest truth. Tell me like it is. I may not like what I hear, but I will learn to deal with it the best I can. With that being said, I know at this point there is no cure for Alzheimer’s Disease, and the only medicine available is just to slow the process. Does it truly work, I don’t honestly know, but I’m not risking the chance of taking mom off the medication to find out. I know that I’m probably going to lose my mom to this disease later on in life through a long and painful journey (if something else doesn’t take her before then). The past five years have already been hell, and I hear it only gets worse. But there was a small spark for me last week, and a possible glimpse of hope.

Mom and I enrolled in an Alzheimer’s Clinical Research Study. She’s obviously the patient, and I am her study partner. We tried to enroll in another study last year around this same time, but she kept passing the memory test. After three tries, we finally gave up. I was confused at how she could possibly pass this test, but she did, and therefore, couldn’t participate in the study. This year, she failed the memory test on the first try. Initially I was so excited, thinking to myself, YES!!! We’re in!!! But then, on the other hand, I thought about the fact that she failed, and this obviously meant that her mind and this disease had progressed further along over the past year. It was a bittersweet moment, one that I wasn’t quite sure how to feel about in my head or emotionally. Overall, I’m glad that she chose to participate, even though I don’t think she quite grasps the concept that she is helping people in the future that will have Alzheimer’s Disease. But I know that we are helping those in the future.

My glimpse of hope comes from the fact that mom will possibly be given a medication through this study that is more promising than the one she is currently on. One that is said to slow the process down even more. At this point, mom still knows who most of us are, her close immediate family and friends, and she still laughs at things that she finds funny. She’s happy when she’s around the people she loves, and she still cries when she is feeling sad. So, even though she may not remember what happened ten minutes ago, or be able to cook her own meals, or wash her own clothes, and she constantly loses her cell phone, and puts her clothes on backwards, she still has a good quality of life. She still has feelings and emotions. And if we can slow this disease down even more, then hopefully she’ll have a good quality of life for a little bit longer than she would have had. So, in my mind….there IS hope! Maybe not a cure for my mom, just a longer quality of life, but at least some advancement in the research and study of Alzheimer’s to hopefully find a cure in the future.

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