|Posted by Alzheimer's Caregiver Support on July 10, 2017 at 10:00 PM||comments (1)|
A few weeks ago, I stopped at Giant to pick up a few things. As I was walking up and down the aisles, my eyes suddenly filled up with tears and I became very emotional. All of the sudden, I just felt overwhelmingly sad. I quickly grabbed the rest of the items I needed and went through the self-checkout. By the time I made it out to my car, I was full on crying. You’re all probably wondering what the heck is wrong with me, so let me back it up a little and explain myself.
There are a few places that I try to avoid because they remind me of my “old” mom and make me really sad. Giant is one of them. It’s the grocery store that my mom always went to when I was growing up and living at home. It’s the grocery store that I often went to with my mom. I also began going there as a young adult when I was living on my own. On a few occasions, I actually ran into my mom while we both just so happened to be shopping there at the same time. Whenever I ran into her like that, I always felt really sad. At the time, my sister and I had concerns about my mom’s health and her memory, but we didn’t yet know what was going on with her. I would see her shopping there by herself and feel really bad for her. I thought she might be lonely or sad and I felt like I should have been shopping with her. It just always felt weird to me to run into my mom like that, like I should have known that she was going to be there, but I didn’t.
Anyway, ever since my mom was diagnosed with Alzheimer’s, and especially when it started to get really bad, I’ve avoided going to Giant like I avoid going to the mall at Christmas time. Every time I go in there, I get really sad. It reminds me of her and it just makes me miss her. I’ll go in there with my husband if he has to get a few things, but sometimes I just wait in the car. That’s how much I hate going to Giant.
On the day that I began sobbing like a lunatic in my car in the parking lot, I had gone to Giant by myself. My husband was away for training and I had to go to another store in the same shopping center anyway. I told myself that it didn’t make sense to go out of the way to go to ShopRite instead just because going to Giant makes me sad. I told myself that I was being stupid and that it wasn’t a big deal. It probably didn’t help that one of the items on my list was a Mother’s Day card for my mom. I had basically set myself up for failure. And so, I cried.
I remember standing in the greeting card aisle when I looked up and suddenly pictured my mom coming up the aisle with her cart. I pictured myself running into her while she was shopping like I used to do before she got sick. I pictured myself talking to my mom, my “old” mom, and laughing at how we both just so happened to be there at the same time. I could literally see her coming up the aisle toward me. And I don’t mean see her like she is now, but see her like she was then. It was heartbreaking. It reminded me that she is no longer able to do her own grocery shopping and that she hasn’t been for years now. It reminded me that there is no possible way that I will ever run into her out shopping anywhere ever again. It reminded me of how much I miss her.
Sure, my mom isn’t gone yet and I can still go visit her anytime I want, but it’s much different now. I miss her even when I’m sitting right next to her. There are days when I can’t wait to leave her house and go to mine, but I always miss her as soon as I do. I miss her whether I’m with her or not. I can’t talk to her the way I used to or ask her for advice. There are so many things I wish I would’ve asked her or said to her before she got sick. There are so many things I wish we would’ve done together. So many places I wish we would’ve gone. But, none of that matters now. There is nothing I can do to change the past or fix the future. It is what it is, but sometimes I just miss her.
I accepted my mom’s illness years ago and I’m dealing with it much better now than I was a few years ago. I still go through cycles of grief and I don’t think that will ever stop. I will always love my mom unconditionally and do whatever it takes to make sure that she knows how much I love her. But, no amount of love or acceptance will ever make me stop missing her. I will still avoid going to Giant, the Saladworks near my hairdresser’s house, and other places that remind me of my mom. I will still avoid driving past her neighborhood unless I’m going to her house. I will still avoid running by certain park benches at Glasgow Park. There are times when looking at old photographs is too much to bare. There are songs that make me instantly think of her and cry. There are certain TV shows that make me so sad I can’t stand to watch them. I’ve even teared up just from seeing that “I Love Lucy” is on when scrolling through the TV guide.
It’s not like I sit around crying all day, every day, missing my mom. Some days I’m completely fine. Other days I start to feel sad for no real reason at all. I just start thinking about her and I get really sad. Or, I remember a dream I had about her the night before and it makes me sad. I find that I dream about her a lot when I’m really missing her. Sometimes the dreams are about her before she had Alzheimer’s and sometimes the dreams are about her now. Either way, I always wake up feeling sad the next day. There are definitely certain things that trigger these emotions and cause me to start missing my mom more than usual. That’s why I just try to avoid them. Maybe there will come a day when I’ll be able to do all of these things without getting sad and starting to cry. But for now, I just miss her.
By Guest Bloggger: Lauren Dykovitz
Lauren Dykovitz lives in Delaware with her husband and two black labs, Oakley and Lucy. Her mom, Jerie, is currently living with severe Alzheimer's disease. Aside from writing this blog, Lauren recently self-published her first book, "Learning to Weather the Storm: A Story of Life, Love, and Alzheimer's." It is available for purchase on Amazon.
Visit her website: https/lifeloveandalzheimers.com
|Posted by Alzheimer's Caregiver Support on July 10, 2017 at 8:45 PM||comments (0)|
Today is two days before our youngest son’s 21st birthday and 16 days before the one year anniversary of when we moved my father to a memory care facility. Today our son, Scott and I spent time with my dad and his Papa.
I miss my dad so very much. He is no longer with us, just his shell of a body. My dad was my rock. He was my support system, my advisor, my critic and my biggest fan. His love for family was enormous and I could not have asked for a better role model. A good friend and neighbor once said, “When I am a grandparent, I want to be just like your father. He has amazing relationships with his generation, yours and your children. He spans generations genuinely with love and respect.”
Alzheimer’s is a horrific disease. It is a slow death. There is no objective diagnosis and no treatment plan, just a huge black cloud with no defined course of decline and no timeframe. It is painful and has left my poor mother half widowed. My mother is one of the strongest people in the world and this has left her with an overwhelming feeling of hopelessness. There is nothing we can do. I love my mom with all my heart and wish I could give her back her husband.
Rivet Revolution was literally dreamt of in the middle of many sleepless nights. What could I do to honor my dad, thank the countless friends and family that have supported us and help find a cure to this devastating disease? I needed a way to direct my negative energy, my guilt and despair into something positive. I am so very thankful to my partners, Liz and Carol, for helping build a dream into a company with a purpose.
I am thankful for everyone around me who supports my family, my parents and my goals for the company. My husband and three children amaze me with their grace and maturity – they are the best family anyone could ask for. I am also incredibly thankful for my circle of friends – they give me exercise therapy and our honest conversations are my savior.
My father is always in my thoughts. Each and every day I come to terms a little more with the inevitability of this situation. I say goodbye a bit more each time I see him. I am grateful to my partners for their passion, creativity and laughter. Together we believe we will change the world, bring awareness to Alzheimer’s raise much needed funds for research, help find a cure and support families that are desperately trying to make ends meet caring for their loved ones. Let’s all work together to #endalz.
By Guest Blogger: Susan Evans
Co-Founder of Rivet Revolution
We started the Revolution in the summer of 2016 with three goals:
to fund research and support for caregivers, to empower the networks of families and friends who have been
affected by Alzheimer’s and to have a blast doing so.
Designed to be worn every day and inspired by the strong and permanent bond of the rivet,
Rivet Revolution bracelets aim to spark conversations, raise awareness and form connections amongst those impacted by Alzheimer’s.
Join the Revolution & help us put an end to Alzheimers!
|Posted by Alzheimer's Caregiver Support on July 5, 2017 at 12:55 PM||comments (0)|
My name is Carol Williams-Deacon and my father passed away from Alzheimer’s disease in June 2010. He battled with the disease for 11 long years. He was a WWII Veteran and had a very strong sense of self, therefore to see him deteriorate both intellectually and physically was quite difficult.
My awareness, knowledge, and experience with the disease have a very interesting path and evolution. While attending courses at DePaul University, I elected a course covering disease and nutrition. Although knowing nothing about the disease, nor having yet been associated with anyone affected by the disease, I chose Alzheimer’s as the topic for my paper and presentation. I went into deep study mode on this topic as I had to prepare a robust presentation for twenty people, including Q&A, and would not be allowed to have any reference notes, etc. In other words, whatever disease we chose as the topic of study, we needed to not only learn but live and breath it, as our presentation was required to be similar to that of a practitioner in that field. I dove deep into the study of the disease and it was suddenly no longer just a word….Alzheimer’s. It now represented something deeper and agonizing: isolation, confusion, frustration, guilt, and pain. As a result of my research, I began to delve deep into the psyche of not only those suffering but also those serving as caregivers. A transformation was occurring deep within me that I would have never imagined. My heart and soul was and is forever touched and changed by those first stories I read about the journey of both the Alzheimer’s sufferer and the caregiver. I am happy to say that I did receive an A+ on all aspects of my presentation, however little did I know that my newfound knowledge would be immediately sourced, sooner rather than later. This would mark the beginning of an 11-year journey, never to be forgotten.
After the course at DePaul was completed, it was a year or so before my Dad began exhibiting symptoms of being very irrational, cantankerous and excessively withdrawn. I began charting his behavior, his antics and the sudden need for inordinate amounts of naps. In the meantime, I am a full-time employee and volunteered through my employer to spend 8 hours at a nursing home to offer seasonal cheer to the residents, as it was almost Halloween. Originally, I had been listed to volunteer on the rehabilitation floor but there were too many employees in that category and I was asked to instead, redirect my energies and volunteer in the Alzheimer’s unit. After 5 hours of making the residents smile with pumpkin carvings, piano playing, and bingo, I was pulled aside and told that an emergency call had come in and that I needed to get to my Dad asap. I called my Dad and he was dizzy, confused and was having a major meltdown right before me. While feverishly driving, I kept my Dad on the cell phone, saying anything I could to engage him, just to keep him talking so that he would not further drift into confusion. When I finally arrived, I opened the front door to find Dad on the floor, barricaded by all the dining room chairs. He had reverted back to WWII tactics of keeping the enemy at a distance. The chair barricade perhaps represents his strong attempt to fight off his brain being attacked by the disease. We all know that a person with Alzheimer’s can feel that something is terribly wrong but the grips of the disease wrangles and renders our loved ones helpless. I will never forget that painful day. That day, was day one of an 11-year battle with the dreadful Alzheimer’s disease.
This journey has allowed me to restructure my outlook on life and its core meaning. My life is complete and fulfilled when I am able to help someone with their struggle as a caregiver. I serve as an AACR (Alzheimer’s Association Community Representative) for the Northshore area in Illinois, which allows me to attend health fairs, share information and reach those in emotional distress. At the last health fair, I was asked if I was afraid of my fate with Alzheimer’s disease as a result of now being in my 50’s and because both my Dad and his sister suffered terribly with the disease. The answer to that question is this: Yes, I am concerned but I cannot control what will unfold in the future, nor will I waste the precious “here and now” living in a paralyzing “what-if” cocoon. What I can control is to strive to be the very best version of myself.
Choose to find the joy in your life, treasure and appreciate the moments and the memories, learn from the past, realize that life can sometimes change people but always, always opt to love with your heart wide open. Happiness is a choice, not a result.
By: Carol Williams-Deacon
“Together We Can Make a Difference”
(Alzheimer's Caregiver Support - Facebook Page Moderator)
|Posted by Alzheimer's Caregiver Support on June 26, 2017 at 10:45 AM||comments (1)|
"Where'd you go? I miss you so.
Seems like it's been forever, That you've been gone." -Fort Minor
My head hurts while I write this, trying to think back over the last few years. How I stepped into the role of her caretaker. How I became a wife and mother during that same time. How I quit my job to take care of my family, and my mother. I look in the mirror some days and don't even recognize the woman looking back at me. Lack of sleep, due this or that, markings from pregnancy that chose not to fade away, eyebrows that haven't seen tweezers in far too long, and can we just talk about the wrinkles?
The problem is, when giving care to others is basically your full-time job, it’s hard to have the drive and desire to take care of yourself as well. It’s so simple to put everyone else first because that is what you do. I schedule doctor appointments, administer medicines, play therapist. I have had to work on disassociating my roles in my current life and work towards compartmentalizing them all into neat little boxes, and storing them away in my mind until I need to put on the hat necessary for the situation. And that’s just with my husband and children.
As my moms caretaker, and as her health declines more and more, I have to put away the role of daughter so that I can take the onslaught of frustration she can dish out. She is angry that she is sick. That she can't remember things. That she can't do what she used to be able to do. Sometimes it’s very passive aggressive. Sometimes its “I don't want to be your mom anymore.” Sometimes its threats of running away from home, or locking herself in her room and staying in there until she dies. As much as her words hurt, and they are hard to get over and see past, but deep down I know what it is she is seeking from her behavior. That she is still wanted, still needed, still loved. That she still has reasons to get out of the bed. On the really hard days where I wonder if I can continue to do this, it’s that knowledge that keeps me going, and helps me to take her words only so personally.
(pregnant with me, circa 1981)
The day to day, that is what is the hardest to deal with. The countless repetitive questions, the running water, washing dishes that will need rewashing because she can't see the bits she misses, making ice, the shuffling of her slippers across the floor which is now like nails on a chalkboard because she can't take steps like she used to. It is missing my mom so badly that I get infuriated, even though we are sitting across the room from each other. Every time she has a decline, I mourn just a little more of who my mother was. I mourn, every day, and it is exhausting.
She used to be fire. She is petite but was always stronger than she looked, and never asked for help. She was stubborn and found a way to get what she wanted accomplished and it didn't matter what it took from her to get it done; she just got stuff done. She could fight with anyone, and would... I'm telling you, she was fire, a fire that could not be snuffed out. I was both fearful of her and compelled by her all at once. To see her now, frail, weak, her mind riddled with dementia, there are days it’s hard to watch her try to do a simple task and not cry or close my eyes in fear she will accidentally harm herself - the stubborn part of her mind is still working just fine.
Don’t get me wrong, I am grateful for the opportunity to give back to the woman who may be one of the only people in my life who has never walked away from me; though God knows, I’ve given her reason over the years. But so many days, I am ANGRY. I want my mother back. I want her memory back. I want to be able to trust her with her grandson and not have to sadly remind her why she can’t be left alone with him. Every day comes with a little bit of heartbreak, and I have to find ways to cope.
It’s amazing what it can do to your psyche, to be the end all and be all to someone else, especially when that person is a parent. I got to the point where I was too depressed to do anything, too fearful to stand up to her, to paranoid about what may happen if I leave the house and take my son to the park. In March of last year, we almost lost her. Thinking back, that was when my decline began. I completely gave up doing anything to take care of myself. On the outside, I pretended I was fine, when inside I was a complete mess. My poor, loving, amazing husband saw me through some really rough patches. It was Christmas day, when I ended up in the ER with symptoms of a stroke (it turned out to be a stress migraine which I’d never experienced), that I decided changes needed to me made. By that time, I had had a constant lump in my throat for weeks which would keep me up at night as I was sure it was cancer and I had no idea how the family would continue without me. And that I wasn't ready to leave them. Finally, in the end of January, I sought help from my doctor. With a combination of medication, and therapy starting up soon, I am feeling back to normal. The lump in my throat is gone. My dearest friend told me the other day when she saw me that I’d made a complete 180 in the best way possible. I know I still have a long way to go, to deal with my anger, my grief, my fear, but I feel like I am on the road to redemption. I am working on coping mechanisms; for me, on the hard days, I look at mom as a guest in my home. It eases the frustration and makes me more hospitable when I have to fix her remote for the 10th time, or explain that it’s her cataracts causing her vision issues, not her glasses. And that may sound callous, but hey, in situations like this, you do what you do to get through the day.
To all of those out there either suffering from illness, or to the caretakers, I see you. And I love you. And I get you. And I understand all of the emotions and anger and days where you’re just so pissed you can’t even see straight. When an ounce of “normal” is what you want, but know the odds are against you. All you can do is survive the day the best way you know how. Each day is a victory.
By: Melissa, ACS Volunteer
|Posted by Alzheimer's Caregiver Support on May 30, 2017 at 10:05 AM||comments (0)|
(Rates for Regions with Alzheimer's in Puerto Rico)
Have you ever wondered how health care is for Alzheimer’s patients outside of your state, county or area?
Well I live in Puerto Rico with my mother and father for almost 10 years now. My mom has had Alzheimer’s disease for about 12 years and she was diagnosed at 49 years old. My mother was diagnosed when we lived in Waterbury, CT where I think she had great health care but my mom decided to move to Puerto Rico to be close to her family so we went with her. She was very reluctant still as she was at early diagnosis of Alzheimer’s. When we first arrived in Puerto Rico we verified a Neurologist. A good neurologist was about a 30 minute drive where my father had to take my mother to Ponce, Puerto Rico to be attended to. After that 30 minute drive, it would be another 6 hour to 7 hour wait to be attended to. Then, after proceeding to leave the doctor, it was onto the pharmacy and a wait of two hours to have her prescription filled out. They said her prescription had to go through prior authorization, another 30 minute trip to the doctor to have the MD put "previous failure to other meds", and a lack of diagnosis and a justification for that certain medication. After that visit to the MD, we had to go back to the pharmacy and wait a 24-72 hours to see if it would be approved or not. This was a process that had to be done about every 6 months when my mother started to decline in her mini-mental test. The neurologist said "Let’s discontinue this medication. It isn’t doing anything for her and there is no need for her to come and visit."
After that we proceeded to continue getting these medications by her primary care doctor where we had to continue our visits, between the doctor and the pharmacy and the consistent battle to have the medication processed for my mother. My mother was on Aricept and Namenda for more than 10 years but between her primary doctor and us we decided it was best to discontinue both medications because my mother started to show a decline.
(Mortality rate of Alzheimer's in Puerto Rico)
I have reached out to the senators, legislators and mayors but they only tell me to call this number and leave a message and they only come every four years when they need your vote.
It's very frustrating. In my case I used to work a part time job and my father had also a part time job where we worked with our schedule. When it became too physically hard for me to take care of my mother, my father took over caring for my mother while I work a full time job to pay all the bills.
One thing that is a positive about this condition, me and my father are living through this with my mother and we have become a united front and I have learned to be patient. I greatly value my time with my parents, I know the future isn’t a given so I show them how much I love them now.
By: Kris, ACS Volunteer
"Together we can make a difference"
(Alzheimer's Caregiver Support - Facebook Page Moderator)
|Posted by Alzheimer's Caregiver Support on May 16, 2017 at 4:50 PM||comments (0)|
Caregiving is not only about taking care of someone’s needs. It’s CARING about someone. Right now, in over 20% of all households in the U.S., someone carries the role of “unpaid caregiver” for a relative, friend or neighbor. And while it can be richly rewarding, (for me, the reward included building a deeper closeness with my dad) there are SO many challenges. The stress involved with caregiving can easily and quickly lead to caregiver burnout.
Caregiver stress can manifest in depression, anxiety, hypertension, or a host of other ways, up to and including, a comprised immune system. Yes, caring for a loved one is rewarding – but, we also have to remember to take care of ourselves as well. We need to take QUALITY care of ourselves – including time for our own professional and social life. When we forget our physical and emotional health, caregiver stress will snowball into caregiver burnout, as Dad liked to say, “quick fast and in a hurry”.
I found that the hardest thing to do was to say “yes” when someone offered to help. Sharing responsibility and being able to hand over duties was just as stressful and overwhelming to me at first as caregiving itself.
I worried, “What if they didn’t do it my way”? What if they put the wrong cup out for him to drink out of and he dropped it? What if the medicine was given at the wrong time? It’s so hard to not micromanage when someone is helping you out, and to relax enough to take time for yourself.
Something that helped me to step back was a simple question– in math/addition, how do you get to the number nine? I said, um 5+4. And my friend said, yes – or 6+3, or 2+7 or 8+1 or even 4+5....they all equal 9. That truly resonated with me. Simply put, my way is not the only way. Which is hard for me to wrap my head around most days. But I learned, if Dad spilled his cup, we cleaned it up. If we missed a dose of medicine, we gave it as soon as we remembered or we skipped that dose. It was not the end of the world. In fact, I have to tell you, that first day I could let go and have my husband get dad ready in the morning so I could lounge in bed wasprobably the best morning in my entire caregiving career. You can guarantee, Dad’s socks didn’t match – but it gave him a chance to bond a little more with my husband. Just as importantly, it gave me a chance to be borderline lazy for an hour without the “pressures of the world” on my shoulders.
Leisure time is not a decadence that you have to avoid indulging in. Allowing someone to help, or allowing yourself to relax, shouldn’t make you feel guilty. You owe it to yourself and to your loved ones to rest, relax and replenish yourself. But how?
Every single day, set aside 30 minutes for you. It sounds impossible, I know. But, do it. Catch up on Facebook, take a nap, paint your nails, wash your car, check out what’s new on Netflix – do what you need to do to recuperate a smidgen of calmness and relaxation. And I hear what you’re thinking right now loud and clear. I really REALLY do – how in the world do I get 30 minutes to myself in a day?
I found my secret to success: Don’t feel guilty about it. Let mom or dad watch TV in their room for a little bit. You know what your loved one likes more than anything - maybe it’s brushing the cat or dog, or playing with a baby doll, or counting money or sorting laundry or reading a book or maybe it’s playing a musical instrument. Set the stage for them to do their activity so you can do yours. Or, wait for them to take a nap and instead of doing – just don’t.
And don’t forget how rewarding it is to just get out of your house. It didn’t matter where I went –just leaving my four walls helped increase both mine & dad’s energy levels. Visit with friends or family – meet them at their house, at the movies, or in a restaurant – just don’t stay at your house. And if your loved one is healthy enough, have them go with you! My dad’s favorite part of the day was the trip to Home Depot. I have more nails in my house than I could ever hammer in anywhere – but if it took me buying a $1.99 pack of nails to give us a moment outside of our new caregiver/caregivee roll, and back into the comfortable Father/Daughter roll, well, it’s worth all 683 packs I have in my basement.
The most important thing is to laugh. It is so hard to find things to laugh about when you’re in the trenches. So, why not watch a funny movie, have a glass of wine with an old friend, read a book – they’re all great antidotes to stress and anxiety. And absolutely pull out the old photos. Look through albums together with your loved one. It’s hilarious to see some of those old-old- OLD photos. Laughter is, after all, the best medicine, especially for your loved one.
Caregiver burnout happens when you don’t have the support you need. You (yes, I am absolutely talking to you right now) should NOT try to do everything by yourself. You HAVE to ask for help. It can be from a family member, a neighbor, a support group, and/or an agency. If you don’t speak up and start the conversation about the challenges you’re living with, no one will truly know or be able to help you. Don’t lose yourself and the person you want to be because the stress is pulling you down. Speak up!
Some insurances, Veteran benefits, and healthcare consortiums can help by providing services such as housekeeping, companionship, medication management, live in services, and personal care services. If you don’t know where to start, go to www.alz.org. The Alzheimer’s Association is a non-profit health care organization that focuses on care, support, and research of Alzheimer’s Disease. They are based out of Chicago, IL, but have chapters all over the world. If you are in the United States, program this number into your cell phone. 1 (800) 272-3900. That is the Alzheimer’s Associations 24/7 Helpline. You are not alone. Stand up, speak up and don’t get snowballed under.
By: Anya, ACS Volunteer
"Together we can make a difference"
(Alzheimer's Caregiver Support - Facebook Page Moderator)