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How to Deal with The Bad Days

Posted by Alzheimer's Caregiver Support on October 23, 2017 at 2:10 PM Comments comments (0)

 

How to Deal with The Bad Days

By Ashley Skellenger

We all have bad days. But what happens when you’re a caregiving warrior when one of these bad days hit? It could be a bad day for you or maybe even a bad day for your loved one, but either way, you don’t get to just banish yourself to your work cubicle and avoid people until 5:00 rolls around. You have to keep being a caregiving warrior and keep on going with your day. Recently, I found myself in the midst of one of these days.  

I had just lost my very first Alzheimer’s patient, “Oma” a few days prior and was still very emotional. Despite my best efforts, I was very edgy, short tempered, and easily upset about the smallest things. On that particular morning, I found myself with my current Alzheimer’s patient, wrestling with her to change out of her nightgown and into clean clothes for the day, pleading with her to let me help her change her soaking wet brief, and trying to convince her that we could not go out into the front yard (she is prone to wandering and lives across the street from a lake- spending time outside anywhere but the fenced-in backyard is a big NO). I can normally get “Ann” in and out of the shower and into clean clothes with very little issue, but on this particular morning she was not having it. She kept drawing her arms in and locking them close to her body, grabbing at her nightgown with a vice grip and not letting go, and cursing at me. After about half an hour of this struggle to get her dressed, I had managed to get a clean dress on her but not a brief and she kept trying to unlock and open the front door to go outside. Normally I can distract her to get her mind off going outside, but again, this morning she was bound and determined, hitting me and shoving me as I blocked the door and cursing at me all the while. At one point, she started hitting me and screaming at me to try to get me to move away from the front door. This went on for about 2 minutes before I finally snapped. I started sobbing uncontrollably, stomped my foot hard on the floor to grab her attention, flung my hands up to my head to cover my ears, and yelled at the top of my lungs, “STOP! JUST STOP!” She stopped her onslaught to stare at me but I immediately felt guilty. I make it a point to never raise my voice or lose my temper when I’m with my Alzheimer’s patients, but I had just done exactly that. I immediately knew I needed to do something to make sure things went smoothly for the remainder of the day and to minimize any stress on Ann. 


I’ve acquired a few very helpful tips and tricks for dealing with these days in my years as an Alzheimer’s caregiver. Sometimes, only one applies to the situation at hand, but sometimes I end up using them all. No matter the situation, though, I know these tips can help you too.  

1) Hit the reset button. 
This is the most valuable tips I have learned when it comes to dealing with bad days. You know how sometimes your DVD player or computer or whatever will start acting up or freeze, and once you hit the reset button its fine? Well, we have one of those buttons too and let me tell you, it’s a wonderful thing. In the case of your Alzheimer’s patient, they may need to hit the reset button more than you or I do. With wheelchair or bed-bound patients, this is easy. If you notice them getting agitated or showing signs of sun downing, it’s time for a reset. Take them into a room and make it dark by closing the blinds or curtains and shutting the lights off. Turn off any TVs or radios and make it completely silent. I have also turned on a fan before just for some white noise to block out the commotion from the rest of the house. Once they are secure in bed or in a chair, simply leave the room and close the door. It sounds like some awful punishment, I know. I felt terribly guilty the first time I tried it after reading about it on the internet. But once I saw how effective it was and did more research on why it is so effective, those feelings of guilt went away and were replaced by feelings of relief and understanding. Something we have to remember with Alzheimer’s patients is that every little thing we do requires brain power and that while we are able to take it for granted, these little things wear our Alzheimer’s patients out. Interacting with large groups of people or listening to conversations around them, watching TV, listening to music, seeing people constantly going in and out of the house, eating a meal, showering, getting dressed, etc....all of these use up precious brain power for people with Alzheimer’s and tire them out very easily, especially when they are dealing with multiple things at once, and a lot of the time, instead of being able to tell us that they are tired and have had enough, they act out and misbehave instead, much like a small child would. So, in these situations, removing all outside stimuli like sights and sounds and replacing them with a dark, quiet room can give them a chance to essentially “reset” their brain. You may find that they end up dozing off into a nap after having the chance to reset, as is the case with Ann. I can immediately gauge when she is feeling overwhelmed and in those instances, I know it is best to lead her into her room to lie down on the bed with the blinds closed and light off, and in 99% of those times, she is asleep within a minute of her head hitting the pillow. She’ll wake up 30 minutes to an hour later and be completely fine, back to being her happy, chipper self. In Oma’s case, she wouldn’t sleep but just sit in the quiet. Usually, it only took 20 minutes for her to settle down and go back to being okay. When you hit the reset button on your Alzheimer’s patient, I strongly suggest you do the same for yourself. Don’t use the time to try to rush around the house to get things done. I know it’s tempting, but don’t. Instead, use the time to sit in a comfortable chair, turn off the TV or radio, close your eyes, and focus on trying to relax. I like to grab my iPod and headphones at this time and play some Marconi Union (If you haven’t heard of Marconi Union, look into it! They partnered with sound therapists to create music specifically for relaxation and it has been found that it can reduce anxiety by up to 65%). When your Alzheimer’s patient wakes up or is ready to resume their day, you’ll be ready too!  

2) Keep your emotions in check.
Even if you aren’t yelling outright or crying, your Alzheimer’s 
patient can sense whatever tension you’ve got bottled up due to sadness, anger, or anxiety and they will react accordingly. It’s so strange that they are unable to pick up on normal social cues and yet still react so strongly to the emotions of others. If they sense that you are angry about something, you will notice them start to get agitated or act aggressively. If you are sad, you will notice them crying at the drop of a hat or just acting more glum than usual. If you are stressed or have anxiety, they will be more paranoid and prone to worrying throughout the day. Just be sure to constantly check yourself and be sure you’re not projecting your emotions into your time with them. If they are acting out of the norm, do a quick reflection and make sure it’s not because of some emotion you’re putting out there for them to pick up on. It’s a quick and simple fix that can make a big difference on those bad days.  

3) Go with the flow.
Sometimes, on our worst of days, whether it’s ours or our Alzheimer’s 
patient’s, it’s best not to fight and to just go with whatever is happening. Don’t try to make any outings, don’t force your Alzheimer’s patient to change out of their pajamas if they’re putting up a big fight (but give it a try, or at least try to give them a quick clean-up), don’t try to force them to eat anything they don’t want to. Just GO WITH IT. Spend the day doing easy things with them, like listening to their favorite music or watching their favorite movies. Make it a pajama day with comforting soup and hot chocolate, coffee, or tea depending on what they like. Sometimes you just need a break from the usual schedule when you and your Alzheimer’s patient are having a bad day and taking a day to just take it easy can be exactly what both of you need to recharge your batteries and go into the next day with a fresh outlook and positive attitude. Carry on, caregiving warriors- together we can make a difference!

Caregiving: The Grief Process: Part 6 (6 of 6)

Posted by Alzheimer's Caregiver Support on October 17, 2017 at 4:00 PM Comments comments (0)

  
An excerpt from my book,

“One Arm One Leg 100 Words, Overcoming Unbelievable Hardships”  

Acceptance  
The final stage is acceptance, which finally came in the third year. People often think of the stages as lasting weeks or months. They forget that the stages are responses to feelings that can last for minutes or hours, as we flip in and out of one and then another.  

We do not enter and leave each individual stage in a linear fashion. We may feel one, then another and back again to the first one. At the time when Charlene finally reached the stage of acceptance for good, the seeds of faith that were sown into her heart finally sprouted and blossomed into a mighty oak tree.  

God allowed her to see the glass as half-full instead of half-empty. She started being positive about the future, even in the midst of negative circumstances. She would smile a lot. She would often point up to heaven and touch her heart as if to say, “God said it will be alright.” She re-took control of her life, redefined who she is, and re-established her own self worth.  

This all seemed to come about as a result of her reading the Bible. With scriptures such as, “All things are possible to them that believe” (Phil. 4:13), she chose to believe God’s promises over her negative circumstances and physical limitations. Today she is an amazingly self-confident, strong-willed, independent and powerful woman. Some would even say she is a cross between Martha Stewart and Wonder Woman.  

God has given us faith that she will speak again, in His time, and for His purpose. Even if we are wrong and that never happens, we are okay with that. We trust Him and know that He will do whatever is in our best interest. Again, attitude is everything. We have lost so much, but we are so thankful for all that we still have. So many others have lost so much more than us.  

We are truly blessed.  

One day we met a man who had aphasia very similar to Charlene’s. For 10 years, he was completely non-verbal. Then all of a sudden, his brain just got it and he started speaking again. He told her, “never give up!” That meeting will be a constant reminder to her that there is always hope, and God is always in control.  

We still believe in miracles. God has performed so many for us already. Charlene has ministered to countless individuals in her present condition, more than if she were normal. I think of Joni Erickson Tada, who was paralyzed as a teenager in a diving accident. She now has a successful worldwide ministry for disabled people. Charlene is also blessing more people now than before her disability. Our lives are truly in God’s hands and we hope He uses this book to bless even more people.  

Charlene after she Finally reached the “Acceptance” stage of the grief process.  

  
  

By Guest Blogger: Dave Nassaney  

Dave Nassaney, Author, Speaker, Life-Coach, and Host of Dave, The Caregiver’s Caregiver Radio Show, a show for caregivers who are burned out yet his most important role is Caregiver to his lovely wife, Charlene, for over 21 years.  

His website has been developed to help caregivers overcome obstacles, adversity, and burnout, as well as just having a place to rest, relax and recharge their batteries. Please consider taking a coffee break now, and allow this site to encourage you in your difficult journey.  

Caregiving: The Grief Process: Part 3 (of 6)

Posted by Alzheimer's Caregiver Support on October 5, 2017 at 2:00 PM Comments comments (0)

  
An excerpt from my book, “One Arm One Leg 100 Words, Overcoming Unbelievable Hardships”  

Bargaining  
The third stage is bargaining. I suspected that Charlene was trying to bargain with God that if she did such and such a thing that He would heal her. (I often saw her praying and crying in her room with her Bible open.) Commonly after a loss, bargaining may take the form of what is called a temporary truce. For example, “What if I devote the rest of my life to helping others? Then can I wake up and realize this has all been a bad dream?” I suspect that some form of this dialogue was going on in her head with God.  

We become lost in a maze of if only… or what if… statements. We wanted life returned to what is was. In Charlene’s case, I’m sure she wanted to go back in time, choose the correct hospital, and get the proper medication that would have made her normal again. Guilt is often the bargainer’s companion. The if onlys cause us to find fault in ourselves and what we think we could have done differently.  

But she finally came to a point where she realized that God is sovereign and He allowed the stroke to happen for a reason. Her faith was extremely challenged and so was mine. It is very easy to have faith when all is well, but you discover how much faith you really have when tragedy strikes.  

We believed that God had a purpose in all of this, and that Charlene would be healed soon. Our prayers were very selfish bargaining prayers back then, and yet God was always there for us. Even if He didn’t quite answer the prayers the way we wanted, He gave us what we needed instead. I know that I felt His presence every single minute. I felt like that famous picture of the two footprints in the sand. And then there were only one set of footprints during the most difficult of times. That was because He was carrying me in His arms. As I stated in an earlier chapter, I felt like I was floating on air, like my feet never touched the ground during those tough years.  

Guilt  
Some therapists believe that guilt is a part of the third stage of bargaining, but others say it is its own fourth stage. I think Charlene wondered if she caused her own stroke by any lifestyle or behavior decisions that she made, however, none of the risk factors for stroke applied (high blood pressure, family history of heart disease or stroke, high cholesterol, heavy smoking and drinking).  

The doctors never pinpointed a cause of the blood clot that caused the stroke. She might have felt a little guilty about not going to an urgent care doctor after the second day of her headache. I, on the other hand, certainly did struggle with a lot of guilt when I discovered that she probably would have been all right if only I would have had more knowledge about strokes. (To be continued)


By Guest Blogger: Dave Nassaney

Dave Nassaney, Author, Speaker, Life-Coach, and Host of Dave, The Caregiver’s Caregiver Radio Show, a show for caregivers who are burned out yet his most important role is Caregiver to his lovely wife, Charlene, for over 21 years.

His website has been developed to help caregivers overcome obstacles, adversity, and burnout, as well as just having a place to rest, relax and recharge their batteries. Please consider taking a coffee break now, and allow this site to encourage you in your difficult journey. 

Dave, The Caregivers Caregiver

Let's Talk About Resentment

Posted by Alzheimer's Caregiver Support on September 29, 2017 at 2:00 PM Comments comments (0)
  


As an Alzheimer’s caregiver, resentment can become an overwhelmingly familiar feeling. We resent friends and family who seem to have disappeared from our lives at a time when we needed them the most. We resent them for not helping out or stepping up to do their part to take care of the person afflicted with Alzheimer’s. We are drowning in our problems and our role as caregivers, yet no one is there to throw us a lifeline. They see what we are going through, but they aren’t inclined to offer help. We also begin to resent people who are not going through what we are going through. We see friends, family, and neighbors enjoying their lives, having successful careers, raising their families, and taking Instagram-worthy vacations. It’s hard not to be bitter and think to yourself, “Must be nice!”  

Personally, I think that these are all normal thoughts and feelings to have. If a caregiver told me that she never felt that way, I wouldn’t believe her. It’s only natural. It doesn’t make you a bad person. We have given up our lives to take care of someone we love. Why hasn’t everyone else done the same? Why haven’t our other family members stepped up? Why aren’t they doing enough?  

Maybe they don’t have the same heart as us. Maybe they just don’t care as much as we do. They see what is going on and they care, but just not enough to give up their lives to do something about it. They are too wrapped up in their own little worlds. They are going to work, spending time with their families, having a social life, and taking care of their own households. Maybe they don’t see what we’re going through. Maybe they’re just too busy with their own lives. Maybe they have no idea what it’s really like to be an Alzheimer’s caregiver. Or, maybe they are dealing with their own hardships. Not everyone’s life is touched by Alzheimer’s, but everyone has their own shit to go through. People deal with other diseases, miscarriages, infant loss, job loss, divorce, addiction, depression, you name it. Everyone goes through some stuff in their lives. Maybe they’re going through it now or maybe they’ve already been through it and they’re trying to get back on their feet. Or, maybe it hasn’t even happened to them yet, but it will.  

My point is that it is easy for us to assume that our friends or family members aren’t helping out because they just don’t care, but it could be any number of things. You might not know for sure why a family member isn’t doing enough. If it bothers you that much, then you should talk to them about it. Explain to them how you are feeling and that you could really use their help. They might be surprised to hear how difficult and unmanageable your life has become. Maybe they have no idea. Maybe they’ll offer to help out more. Sometimes all you have to do is ask. Other times, they might not even give a darn. They will offer words of comfort and then go about their merry way. Let them.  

As an Alzheimer’s caregiver, you are dealing with enough drama and negativity to last you ten lifetimes. You don’t need any more. Harboring resentment toward friends or family members is only going to hurt you. If you confront someone about their lack of help and they don’t make an effort to change, then maybe it’s time to walk away. Unless they have a reasonable explanation for their behavior, you don’t really need that person in your life. You probably won’t even notice that they’re gone, since they never did anything for you anyway. That is a decision only you can make.  

Sometimes your friends or family members don’t have any reason at all for not helping out. Not everyone has the same heart as you. Not everyone feels empathy the way that you do. And, that’s ok. Everyone is different. You can allow other people to be themselves, while still being true to who you are. Just don’t expect anything from them. The sooner you stop expecting this person to offer help, the sooner you can let go of any resentment you have toward them. Maybe that’s not the role this person was meant to play in your life. Maybe they’re not supposed to be there to help you. Maybe they’re supposed to be there to teach you who you don’t want to be. Or, maybe they are meant to be your escape. The person you vent to or the person you go to when you want to talk about anything other than Alzheimer’s.  

If you have a friend or family member like this in your life, it’s up to you to decide if you want to keep them there. There are some people who are just not going to help you. You have to decide if confronting them is worth it. If it is, then you can try talking to them and asking for help, but sometimes even that won’t work. Then, you have to decide whether or not you still want that person to be in your life, knowing that they will never lift a finger to help you. But either way, the resentment has got to go!  

Resentment is nothing but a negative emotion that will drain you of every ounce of energy you have left. It will steal any amount of joy or happiness that you are cable of feeling. It will suck the life out of you. It will absolutely consume you. You cannot take care of another person when you are harboring resentment toward others. More importantly, you cannot take care of yourself. Resentment will tear you apart. You won’t be able to think about anything else. Resentment will only harm you. It’s not productive. It won’t help you or your situation. It won’t compel someone else to help you. You have to realize that you can’t change people. No matter what you say, do, or feel, none of it is going to change someone who doesn’t want to help. They are who they are and they will continue to be that way regardless of how it makes you feel. It’s not right and it’s not fair, but that doesn’t matter. Thinking about that won’t do you any good. It won’t get you anywhere. You’ll just drive yourself crazy. And, the people you resent will just continue to live their lives in oblivion. Your resentment won’t hurt them or change them, but it will hurt you and change you.  

In order to let go of resentment, you must make a choice. You can remove the people from your life who are causing you resentment. Or, you can choose to keep those people in your life and just accept the fact that they are never going to help you. Either way, you have to learn to let go of the resentment. My Aunt Diane once told me that if you can lay your head down at night and feel good about what you’ve done, then that’s all that matters. You can’t worry about what everyone else is doing. You can only worry about yourself. You can’t control the behavior of others, but you can control the way it makes you feel.  

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


Caregiving: The Grief Process: Part 2 (of 6)

Posted by Alzheimer's Caregiver Support on August 21, 2017 at 12:00 PM Comments comments (0)

An excerpt from my book,
“One Arm One Leg 100 Words, Overcoming Unbelievable Hardships”  

At times, she didn’t even want to look at me or touch me. If she didn’t retreat into her room and slam the door, then I usually had to leave the room myself and leave her alone so she could let all of that pent-up frustration out of her system. I’m sure the neighbors thought I was beating her, it sounded that bad. It took a tremendous amount of energy for her to vent like that. It would take her days to recover fully from the outbursts that drained her body and her emotions. Sometimes I felt that it was my fault for letting the conversation get to such a point of frustration that allowed her to just snap like that. She couldn’t just stop this outburst of screams once she got started. It had to run its course.  

In fact, it might have actually even been therapeutic for her to vent like that. I didn’t really know if it was or not. I just knew that I had to try harder not to let our next conversation get out of hand again. In my own defense, however, the conversations that we were having were necessary ones. They usually involved changes that needed to be implemented. I would give her my reasons, but she typically didn’t agree and couldn’t articulate why. When I would sense that she was heading towards another emotional outburst, I would stop the conversation, and change the topic.  However, that did not work most of the time.  

Imagine trying to discuss something very important with someone and not being able to say a word. Then knowing by your silence that you were going to lose something very valuable. You felt you were losing it because you were not able to state your case or speak your mind. Then to be told that we were not going to discuss this anymore because, “you are getting upset and you can’t be understood.” If that isn’t hell, then I don’t know what is. They say (whoever they are), that the only thing that separates us from the animals is our ability to speak and communicate with each other. In a way, a part of her humanity was taken away, and she was very upset about it.  

One way that I attempted to survive those difficult days was to travel on some weekends to my cousin’s and uncle’s homes that were located in different states. I hadn’t seen any of them in years, and it was a special treat for me to get away from my reality and share my feelings with safe people who were not a part of my situation back home. Charlene needed the break away from me also. She was naturally self-absorbed into her own problems. For her, no one else’s problems were more important than her own. This is normal behavior for a stroke survivor.  

Back home when Charlene would attend her stroke support group, I would also attend my caregiver’s support group. It was there I learned that I needed to take care of myself in order to take care of my wife. The caregivers would meet in one room and the survivors would meet in the another room. Both groups would complain about each other’s group and would share their horror stories with anyone who would listen.  

I remember back in those days that Charlene and I would often get into angry shouting matches with each other as our patience would wear thin. I am so thankful that those days are long gone and we now finally like each other once again.


By Guest Blogger: Dave Nassaney

Dave Nassaney, Author, Speaker, Life-Coach, and Host of Dave, The Caregiver’s Caregiver Radio Show, a show for caregivers who are burned out yet his most important role is Caregiver to his lovely wife, Charlene, for over 21 years.

His website has been developed to help caregivers overcome obstacles, adversity, and burnout, as well as just having a place to rest, relax and recharge their batteries. Please consider taking a coffee break now, and allow this site to encourage you in your difficult journey.

Dave, The Caregivers Caregiver


Caregiving: The Grief Process: Part 1 (of 6)

Posted by Alzheimer's Caregiver Support on August 7, 2017 at 12:00 PM Comments comments (0)
 
An excerpt from my book,
“One Arm One Leg 100 Words, Overcoming Unbelievable Hardships”   

Denial  
The first stage is denial. Charlene thought she was normal. And yet no one could understand what she was saying, which only made her angry. She thought there was something wrong with us. She could actually hear the words that she wanted to say, but they never made it out of her mouth. When she opened her mouth to speak, only gibberish would come out. She just wouldn’t believe that we couldn’t understand her.  

She thought we were playing a joke on her. It was heart breaking for us to watch her inability to communicate or understand. The look of terror on her face said it all. We were all powerless to help her with her shock and denial, which took the form of a condescending and ridiculing tone toward us all. It was as if she was saying, “What is your problem? I am alright!”  

Anger  
The second stage is anger, which she took out on everyone who loved her. It was not pretty. She truly hurt those she loved. Like in that old Mills Brothers song, “You only hurt the one you love, the one you shouldn’t hurt at all.” I came very close to the end of my rope, mainly due to my experiencing more frustration than I could handle, and feeling zero appreciation. But God kept giving me a very special dose of Charlene grace to tolerate another day until it slowly and eventually got better.  

During those days, I wrote her a lot of letters, many of them were never given to her. They were for my benefit only. She just couldn’t understand my point of view. God must have also given her some David grace, because many times I did not respond as lovingly as I should have to her anger. I was not accustomed to such treatment and I had to constantly remind myself not to take it personally.  

I kept telling myself that she was sick and could not be held accountable for many of her actions. It was even harder for the other loved ones in her life who were not quite as understanding of her condition as I was. Communication of any kind about anything on any deep or shallow level was impossible. It had to involve expressing deep emotions of how she was feeling, and she simply was not capable of communicating at that level.  

It just wasn’t a fair fight. I would always win the discussions (or arguments) because she couldn’t argue back with words the way I could. She just had a vocabulary of very frustrating screams. And scream she did. Emotional outbursts lasting anywhere between 15 minutes to one hour of bone-tingling shrieks that did not stop except to take the next breath to continue her screaming again.  

As terrifying as it was, she was communicating the only way she knew how. By opening up her mouth and letting the words come out. (In this case, it was a vocabulary of one scream). Imagine, if you can, trying to calm someone down who would not stop screaming at the top of her lungs. I tried holding her, rubbing her back, talking calmly to her, but nothing helped her to calm down.  

  

By Guest Blogger: Dave Nassaney

Dave Nassaney, Author, Speaker, Life-Coach, and Host of Dave, The Caregiver’s Caregiver Radio Show, a show for caregivers who are burned out yet his most important role is Caregiver to his lovely wife, Charlene, for over 21 years.

His website has been developed to help caregivers overcome obstacles, adversity, and burnout, as well as just having a place to rest, relax and recharge their batteries. Please consider taking a coffee break now, and allow this site to encourage you in your difficult journey.  

Dave, The Caregivers Caregiver

Feelings of Social Isolation as a Caregiver as well as for the Alzheimer's Patient!

Posted by Alzheimer's Caregiver Support on July 16, 2017 at 6:25 PM Comments comments (1)




Over the course of eleven years, I was honored to be a caregiver for both of my parents. My dad was diagnosed at the age of 66 with Alzheimer’s Disease. He battled the disease for seven years. Two years after my father had passed away, my mother was diagnosed with Dementia. My mother was 73 years old and died at the age of 76 years old.  

For my father, my mother was his main caregiver with the daily support of myself and my siblings. Watching her trying to keep their life as normal as possible was always a struggle. She was able to maintain some of their relationships with friends, however, I noticed very early on that some of these “Friends” had distanced themselves from them. Realizing how hard it was for us to deal with the changes that come with the disease, I know that it was hard for them as well. It was just sad to see some of my father’s lifetime friends “Back off” and sometimes not even try to converse with him. Almost like they didn’t know how to talk with him. It always made me feel mad instead of sad. I felt like, How can they just not say “Hello” or ask him how he was? At that point, I felt that my father and mother were being isolated from the life that they had known. It was hard to see, they had always been so active with their friends, weekend trips and church functions.  



Two years following my father’s death, my mother was then diagnosed with dementia. After going thru all this with dad, it was a heart break to learn that my mother will now follow this same path. At this time, it was decided that we would move her in with us as she was now living alone.  

After she moved into our home, my husband and I got to experience the social isolation that mom had experienced. Her stay with us was 3 years until her death. Her dementia progressed very quickly due to her other medical issues. So for my husband and I, it was really hard to get out of the house and have coverage for her, so invites seemed fewer. At times, feelings of anger and sadness would appear when you see the rest of your family/friends on social media enjoying themselves. I knew that we had picked this option of caring for my mother, but it was still really hard to deal with feelings of isolation from the rest of the world. I, myself, would experience feelings of being alone, missing the life I use to have, and some times, feeling of anger would take over. It was hard watching everyone else be able to live their lives and go as they please.  

I know that it was me who chose to care for my mom, but once you’ve become a caregiver, you really don’t expect to feel socially isolated…….but it creeps up on you when you least expect it.  

At this current time, my husband and I are again in the role as a caregiver to his 89-year-old mother. Do we want to get into a caregiver role again? NO! Do we do it? YES! Growing up we were both fortunate to have loving parents who cared and loved us. Both our parents were there for us all of our life. Keeping that unconditional love in mind…..yes, we will do it again! We will be honored to care for and help his mother feel safe and comfortable in her final years. It’s what we feel we do for our family.  


ACS Volunteer- Terry  
"Together we can make a difference"

Alzheimer's Caregiver Support Facebook Page: https://www.facebook.com/AlzheimersCaregiverSupport/

I Just Miss Her

Posted by Alzheimer's Caregiver Support on July 10, 2017 at 10:00 PM Comments 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

A Very Long Goodbye

Posted by Alzheimer's Caregiver Support on July 10, 2017 at 8:45 PM Comments 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


Website: https://www.rivetrevolution.com

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!


In the Quiet Shadows of Alzheimer's

Posted by Alzheimer's Caregiver Support on July 5, 2017 at 12:55 PM Comments 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)